Wednesday, July 19, 2017

Happy Birthday #9 Caleb!

Today the Doobie turns 9. It's a bitter sweet day for me. Yes, it's his birthday, but it's also the 1 yr anniversary of when our family changed forever. It's a hard day for me and that makes me angry, because today should be a good day, a happy day. I have written little to nothing about our foster care journey. There will be a day for that (and soon). But today, we celebrate our Doob.

After travis got home from work we went to dinner at Pizza Pie Cafe (thank goodness they have a gluten free option for Sam!). After dinner we went to the fun park for about an hour. Kids had a good time and earned more than enough tickets for some treats. Caleb decided he wanted to open his gift tonight rather than wait until party day on saturday. He's pretty excited about his new air soft gun and targets and camo camp chair! Glad he's still relatively easy to shop for!

Wednesday, May 17, 2017

Caleb & Sam go back to the Wellness Clinic

Yesterday I took Caleb in for a check up with Dr. Ohling at the Wellness Clinic.  In a two month period Caleb has gained 5.5 pounds (2.5 in the last month) and he has grown 5/8" (that was ALL in the last month!).  I think it's safe to say the Semoralin is working!  I knew he had grown some more because about a week ago I had to buy him new pants.  He was wearing a 6 slim (he moved up to that size in about December of second grade).  I had to buy him a 7 regular the other day!  Whoot, whoot!

I also had Caleb get retested by JanaLee.  His numbers were looking really good and he only had 2 areas that were off.  The ones that were off were high rather than low too, so that's always an improvement as well.  JanaLee gave him one new drop and took him off the three he was on previously.

Samantha only saw JanaLee.  She was tested and although her numbers weren't bad, she has no reserves.  She's still on a probiotic and JanaLee added two drops for her.  Since one of the drops she's on is a fungus, she's not supposed to be eating anything that will feed the fungus (no sugar).  Taking sugar out of her already limited diet is going to be a struggle.  Fortunately, it's only for a week!  Here's hoping JanaLee can help Sam like she did for Caleb!

Monday, May 15, 2017

Trip to PCMC to see pediatric GI

Let me just start off by saying I was not impressed with the doctor we saw this morning.

The end result/diagnosis is "Function abdominal pain" and possibly IBS (Irritable Bowel Syndrome).  The problem with an IBS diagnosis is that unless she's had symptoms for 3 months, they won't give her that specific diagnosis.  Did I mention the doctor said she doesn't think Sam needs to come back.

The doctor glanced through all the labs and notes from the last month and without beating around the bush says she doesn't think Sam has Celiac.  She said that even if you were gluten free when you took the test, it takes 6 months to be completely gluten free.  She said that the Celiac test is a good test and that it's reliable.

The doctor said she thinks Sam is constipated and that's part of the problem.  Still don't think constipation will cause a child to sleep 12-18 hours a day.  Also don't think that constipation will cause a child to be in such pain that they lay in the fetal position and refuse to move for the few hours they are awake.

The dr. put Sam on what's called a FODMAP diet.  She needs to follow the FODMAP diet for at least 6-8 weeks.  At that point, she can try to re introduce foods into her diet to see how she does with them.  The FODMAP diet is a gluten free diet (So...she doesn't have Celiac but has to still be gluten free?  Yep.  Makes sense, right?)

The FODMAP diet tries to eliminate carbohydrates from your diet.  FODMAPS are osmotic which means they pull water into the intestinal tract and may not be digested or absorbed well and could be fermented upon by bacterial in the intestinal tract when eaten in excess.  Common FODMAPs in your diet are:
Fructose (fruits, honey, high fructose corn syrup, etc), lactose (dairy)
Fructans (wheat, onion, garlic, etc - also known as insulin)
Galactans (beans, lentils, legumes such as soy, etc)
Polyols (sweeteners containing sorbitol, mannitorl, xylitol, maltitol, stone fruits like avocado, apricots, cherries, nectarines, peaches, plums, etc)

Samantha is now convinced she's going to starve.  Luckily, we have a list of what she IS allowed to eat.  This should make for an interesting 6-8 weeks.

Functional abdominal pain  means there is no structural, inflammatory, infectious, neoplastic or metabolic cause to your stomach pain.  Functional pain is diagnosed in about 10-15% of school aged children.  It is believed that in some children the nerves in your intestines become very sensitive and pain is experienced even during normal intestinal activities.

We were told to find some peppermint oil capsules that she can take with meals.  This is supposed to help with gastric relaxation.  She was also given a prescription for something called Levsin.  She just puts this under her tongue up to 3x a day with meals and it helps with the main.  We were also told she should not be taking Aleve or ibuprofen - this should make the patella bursitis fun.

So, here we are, going on 5 weeks missed school, a CT scan of the face, an ultrasound of the pancrease and gallbladder, 5 rounds of blood work, a chest x ray, 2 trips to the chiropractor, 2 trips to the ENT, at least 5 trips to 2 different pediatricians, 6 prescriptions (3 antibiotics), 1 trip to PCMC to see a pediatric GI and STILL not a positive diagnosis.  At least she wasn't a human pin cushion today.  We'll see how the next 6-8 weeks go on the FODMAPs diet.  Hope she doesn't drop a ton of weight.  Keep your fingers crossed.

Friday, May 12, 2017

Sam's still sick

It sure has been a long month of doctor's visits, and it doesn't appear that the end is in sight any time soon.

On Sunday this week I didn't even think about Sam and sacrament meeting.  It wasn't until we were sitting in sacrament and Sam was holding the bread tray, looking at me completely horrified that I realized I had let her down.  She ended up taking a piece of bread for sacrament.  Travis and I didn't think it would be a huge deal.  We thought wrong.  Ten minutes later she was sick.  She ended up getting up and walking out of sacrament and walking home.  Epic mom fail.  Lesson learned.  Travis has talked to the Bishop to find out what we need to do.  Hopefully we will have our crap together for Sunday this week!

After the sacrament fiasco I told Sam I wanted her to start a food journal.  I figured that the GI would want to see one anyway so we might as well make the most out of the time we have to wait to get in to see that dr.  I don't want to have to wait three weeks after an appointment to make a food journal.

Samantha is still on home bound for school.  I know she misses her friends terribly.  The girl is super social and she has not been out and about much in the last month.  She's been to one dance recital, one choir concert (to watch the girls she helped choreograph a dance piece for), one dance competition and about three dance classes.  I'm surprised she hasn't gone completely stir crazy yet.

The good news is that I think Sam's finally only sleeping 8-10 hours at a stretch instead of 12-18.  This is progress!  Yesterday she woke up on her own and was in the shower before 10 am.  That has not happened in an entire month!  I was a happy momma.  When she got out of the shower she was talking to me and told me she had gotten on my scale before getting into the shower.  She said she was down EIGHT POUNDS since she saw Dr. Garg last week.  Tell me where she's got eight pounds to lose (third from left).

After my conversation with Sam was over I called the pediatrician's office.  Now, I'm not generally one to get into hysterics super quick.  However, given the fact that she maintained weight for three weeks and is now down eight pounds, I started to freak out a little bit.  Yes, I know that if she's got Celiac's and we are cutting out gluten she's going to lose some weight - my mother in law did.  She also spent Monday vomiting (Brooke and Olivia had a well check so when we were at the pediatrician's office he called in a prescription of Zofran for her).  However, she only vomited three times Monday - not nearly enough to lose eight pounds.  I explained to the nurse what was going on and what Sam had told me.  She said she would send a note to the dr. and have him or someone else get back with me.

Luckily it didn't take too long for the dr. to call me back.  He said he had been reviewing her file and all the labs and the ER notes.  He said that he noticed that when she was in the ER and did a urine sample that her urine had some sort of crystallization in it which could be indicative of kidney stones.  However, since she didn't have any blood in her urine he didn't think it was kidney stones.  He also said that her x ray showed that she was quite backed up.  I told him the ER had told us that she had some fecal blockage but nothing that would cause what she had going on.  He said he didn't think that the constipation was causing her problems but that it could be exacerbating it.  He wants to put her on Miralax.  I already know this isn't going to go over well.  When Sam was little and was constipated all the time they put her on Miralax.  She hated it.  She said it was like drinking gritty juice.  Not only that, but when she made Mac & Cheese for the girls the other day, she took three bites and ended up with diarrhea ten minutes later.  How is she blocked up if she's got diarrhea from eating gluten?  She claims she's going every day but she still hasn't ever given me a stool sample to take in for them to check for H. Pylori.  I've told her time and time again just do your thing and I'll put it in the sample bottles!  Apparently that's asking too much.  Sigh.

While talking to the pediatrician he told me that he had called the Primary Children's GI department again and they could get us in first thing Monday morning.  He said the reason they hadn't offered us that appointment before was because they knew we were coming from Cache Valley.  I told the dr. that I didn't care if I had to get up at 3 am and haul all six kids with me, call them back and get me that appointment because she isn't getting any better!  Needless to say, we now have a 7:40 am appointment at the Primary Children's Outpatient Center in Riverton on Monday.

Today I also finally heard back from Dr. Feffer's office.  I told the girl that called me what was going on and asked what she thought about the possibility of it being a sleep disorder that had come on so suddenly.  She made sure to tell me that she hadn't been to medical school but she hadn't ever heard of a sleep disorder coming on that quickly.  She told me that she doubts it's a sleep disorder.  We ended up deciding to put her on the schedule because they are booked out until about June 20.  I told the girl I wanted to go see the GI on Monday and see what that dr. thinks.  She told me that if we decide to cancel to just give her a call back and she'll cancel our appointment.  I'm hoping we can cancel - found out their office is clear out by West Jordan!  I don't want to have to drive all the way over there for a sleep study any time soon!

The timing of being able to get into the GI's office is a major blessing.  We were originally told June 8th.  Travis put his notice in at Geneva Rock on Monday.  Tomorrow is his last day there.  He's going to go work for my brother in law doing pest control.  We're going to have to find our own insurance.  Of course, now that we've met our deductible we get to switch insurance.  Murphy's Law, right?

Thursday, May 4, 2017

CT results & 5th round of lab work

Yesterday we went and saw Lindsey at the ENT's office again.  Sam had the CT scan done in the back of the allergy clinic.  It's pretty cool.  It's like a big dental 360 x ray machine.  The images pull up almost instantly on the computer.  The girl doing the scan points to two spots on Sam's face and says, "See this?  This should be two black spots." (It was gray.)  Then she turns to Sam and says, "Can you even breathe?"  Sam looked surprised and just goes, "Yea."  The girl doing the scan asks, "Are you sure?!"  I didn't figure that was a great way to start our appointment.

After the scan was done we went back over to the ENT office and had to wait for Lindsey to come in.  She pulled the images up on the computer and scrolled through it showing different layers.  She showed where there is infection in her right cheek sinus.  She said that it isn't horrible and wouldn't cause her current symptoms.  She said it was probably a lot worse two weeks ago when she first started the Z pack.  Lindsey is hoping that the double Z Packs she started on Monday will chip away at what's left of the infection and get rid of it completely.   Apparently the Z Pack isn't a fantastic option for sinus infections but since she's allergic to PCN it's about the only option she's got.  She also showed us that Sam has a pretty decent deviated septum.  She said that we could do surgery to repair it but wouldn't worry about doing that until she's 16.  I guess the septum is a growth plate of sorts so they like to wait until they are kinda done growing.  I asked what the consequences would be if we didn't get it fixed.  She said that having it fixed reduces how much congestion you get and how often.  She said it can also help reduce snoring.  So, it's not a major have to surgery, but it would probably be nice for her in the congestion department because she goes through a box of tissues by herself in just a few days.  Lindsey also pulled up images of her ears that the CT caught.  Everything on her ears looks great (can't say I think that will happen when we have B's on the 15th though).

I updated Lindsey on the Vitamin D level.  She suggested taking Vivactin twice a day.  She said the Vitamin D won't be absorbed by her body if it isn't taken with calcium.  So, we went and bought some Vivactin later in the day and she's started on that.  Sam says they are pretty good - we got the caramel ones.  Side note - I did look at the Vitamin D prescription bottle and they did prescribe the 50,000 units for once a week - same amount Trav's mom is taking.

I asked Lindsey if we needed to do anything as far as calling Dr. Feffer's office.  She checked on it and it's in progress.  I was told if I don't hear from them in a few days to call Lindsey's office back and they would follow through on it.

I heard from the pediatrician's office today on the B12.  We had her blood drawn before her CT yesterday and I had hoped we'd get results back last night, but no such luck.  That's ok, I'm just super impatient.  Nurse said B12 levels are normal.  I really thought they would be low.  I recently found out my Grandma Reeder has taken B12 for 45 years.  Combining that knowledge with the fact that my mother in law's B12 was low and her energy levels, I thought for SURE her B12 would be low.  Guess not.  Back to the drawing board.

I heard from the home bound coordinator today as well.  I told him whats been going on and that Sam had done better yesterday and if she continues doing that well then she could maybe try going back to school Monday.  My worry is throwing her back into everything all at once and having her relapse.  He said that we should treat it like a mono situation.  When she goes back she'll just go for hours 1-3.  The next day she's back she'll go hours 4-6.  This way she can get each class a few times a week.  They'll keep her on the home bound program just in case she relapses.  We'll see how the next four days go and I told him I would text him and let him know if I was going to send her to school Monday or not.  Here's hoping.

Tuesday, May 2, 2017

Fourth round of lab work says....

Remember yesterday when Dr. Garg said she would send off some of Sam's blood that was drawn Saturday off to be tested for vitamin D deficiency and inflammatory bowel disease?

I got a call this morning telling me that the vitamin D results had come in and her vitamin D was low.  The nurse told me that Dr. Garg had called in a prescription for her.  I was like, "Ok.  Progress here."

Tonight, I got another phone call from Dr. Garg's office to tell me that the inflammatory bowel disease had come back negative.  Well, that's good that it's negative.  At least we ruled something else out, right?  While on the phone this time I asked the nurse what the normal level for vitamin D is and where Sam's level was.  She told me that the normal level for vitamin D is between 30-80.  Sam's levels were at 15.  They called in a vitamin D supplement (1.25 mgs) that she takes once a week for 8 weeks.  I asked if she needs to come be retested at the end of the 8 weeks.  Dr. Garg said not necessarily.  She will need to drink 3-4 glasses of milk a day though (she hates milk and she's actually allergic to it).  She also told me that we could have her take 600 mgs of vitamin D per day at this point if she wasn't going to drink the milk.

And then....I got to thinking....I asked about the vitamin B12 again.  Dr. Garg repeated her previous answer about it being extremely unlikely that her B12 would be low because she eats a very well balanced diet.  I sort of put it out there that you know, we're testing everything else, why not?    To my surprise, she agreed with me!  She's sending the order for the B12 draw down to the lab and we can go tomorrow.  We'll just stop in there before we go for the CT scan.  I mentioned to her what Lindsi's plan was with the CT and the sleep study.  She was surprised at the suggestion of a sleep study but thinks it may be a good idea.  She felt that the double Z pack and the CT scan were a great idea to rule out chronic sinus infections.

After hanging up with the Dr.'s office I called and talked to Travis.  He told me he had been talking to his mom and he found out that her vitamin D and vitamin B12 were both low when they were trying to figure out what was wrong with her (before they diagnosed the Celiac).  I called and talked with her after talking with Travis.  She told me they had her taking Folic Acid, Vitamin D and taking Vitamin B12 shots.  She's currently taking around 50,000 mgs Vitamin D (remember Celiac means your body doesn't absorb nutrients like it's supposed to) and B12 shots once a week.

If Sam's B12 comes back low I think we may have our answer!  Crossing my fingers...

Monday, May 1, 2017

2 more doctor visits for Sam

Today was a long, long day.

I called Primary Children's Hospital to schedule an appointment with the pediatric GI the ER gave me the name of.  Turns out, she's completely booked out and they told me they could put me on a wait list.  Other option would be to see someone else in the clinic.  Okay, good, let's do that.  Oh, well, the soonest we can get you in is June 8th.  And...face palm.  She even told me that if we GO BACK to the ER or if we go back to our physician and they feel like she needs to be seen sooner the dr can call them and they'll try to get her in sooner.  On the bright side, they did put me on their cancellation list so if someone cancels they can call and get us in sooner.

First dr. appointment of the day was with Dr. Garg at the Budge Clinic.  Dr. Visick (who has consulted with Dr. Sandgren about Samantha) was booked until Wednesday, so I told them just to schedule me with whoever had an appointment available.  Lucky for me, I like Dr. Garg (and her husband is a GI here in the valley).  Dr. Garg is stumped.  She said that she can figure out different diagnosis that would fit the stomach pain, etc. but not one that would fit the stomach pain and the fatigue.  She did another urine sample (normal) and called the lab to see if they had enough blood left from Saturday's draw to run more lab work (yes).  They are running labs for inflammatory bowel disease and vitamin D deficiency.  I asked about B12 shots for energy.  She said that unless she has specifically tested her for vitamin B deficiency she absolutely would not recommend the B12 shots.  So, there goes that idea....She prescribed a probiotic for Sam as well.  Turns out, the pharmacy called me and 1-my insurance won't cover that and 2-they don't have any in stock and would have to order it.  So, I decided I'd just let her take the probiotic that Caleb got from the Wellness Clinic (not a prescription, don't freak out).

After our appointment with Dr. Garg, we had a little bit of time to run a couple errands.  Mind you, I woke Sam up at 9 am and her appointment with Dr. Garg was at 11:15.  It was after 12 when we left Dr. Garg.  By this point, Sam was pretty pooped and ready for a nap.  Lucky for me she kept moving and didn't fall asleep.  She wasn't peppy, but she was awake and moving.  It was an improvement and I'll take it.  I think she may have just been overjoyed at escaping another blood draw!

We had our second appointment with Lindsey out at Cache Valley ENT.  I took a copy of all the labs she's had done with me so they could look at the thyroid tests without having to re do them all.  Lindsey looked at her thyroid numbers and told me fairly quickly she doesn't think it's her thyroid.  She said that if the TSH was high and the hormone was low, she could give her Synthroid and it would level the two out.  Since both of Sam's numbers are low, if they give her thyroid medication it will lower her numbers even more.  Ok, that's a bust then.  Lindsey said that her first thought is maybe she's got a sleep disorder.  She's put in a referral to a pediatric sleep specialist in Ogden (Dr. Feffer) who's really good.  We now have to wait to hear back from that office to schedule a sleep study for Sam.  Lindsey also noticed that the blood work they did on Saturday had white blood cell counts that were higher than the previous draws.  This particular white blood cell is one that responds to mold and allergic reactions.  She said that with the recent moisture in the air the mold has been worse.  I do know that Sam is VERY allergic to molds (thanks allergy testing five years ago).  She wants to do a CT scan of Sam's sinus cavity (same thing we are doing with Brooke as a follow up from the dr. at the eye clinic to rule out other possible reasons for her headaches).  The soonest we can get in for the CT is this Wednesday at 11.  That means that the appointment I had scheduled for Caleb with the nutritionist is now pushed back another week or two.  Oh well, this is currently taking presidence.  She also recommended a round of antibiotics.  Since Sam is allergic to Penicillan and Omnicef, it pretty much leaves us a Z pack.  We did that once recently - about a week and a half ago.  Mind you Sam did feel a little better when she first started taking it.  So, she prescribed TWO Z Packs.  Sam's suppose to take them back to back - take the first pack and as soon as it's done start the second pack.  That's 3 Z packs in 3 weeks.  The meds on this one stay in your system a good 10 days.  That's a LOT of antibiotics.  She was worried about giving her a different antibiotic because most antibiotics will cause stomach cramps/aches/pain.  Since she did well with the Z pack we are hoping she will continue to do well on it now.

So, 6 hours and 2 drs and we've managed to:
*Do another urine sample and it's clear
*Order a FOURTH blood panel to check for inflammatory bowel disease & vitamin D deficiency
*Start a probiotic
*Schedule a CT Scan for her sinus cavity
*Waiting on a call to schedule a sleep study
*Started another antibiotic that's really a mega dose of antibiotics

Pretty sure my insurance is going to call me soon and just say, "Are you for real?"  At least we've now met our deductible...

A day at the ER

Sam surprised me on Saturday and was up around 9 am.  That's the earliest she has been awake on her own in 2 weeks!  She hadn't eaten anything with gluten in it on Friday and she only slept 8 hours Friday night.  I was feeling like maybe we were on to something but was determined to go into the ER and see if they could make any for sure diagnosis.

The nurse put an IV in - Sam was NOT happy about this.  I assured her that an IV was a better route than just having blood because if they needed more or she needed meds they wouldn't have to poke her again.  She finally relented and did good.  She's not a fan of being touched in certain spots and the crook of her arm is one of those spots.  Mind you she had already been poked twice in the last two weeks as well.  They took about 4-6 vials of blood and sent it off to the lab.  Then they started giving her some fluids.  I was glad she was getting some fluids because I know she hasn't been drinking as much as she needs to since she's been sleeping so much.

They really wanted a urine sample right when we got there.  Unfortunately she couldn't pee on demand and they had to wait until she had been there and hooked up to the fluids for awhile before they got anything from her.  They ordered an ultrasound of her gallbladder and pancreas and a chest x ray.  Ultrasound and x ray were backed up they told us so I assumed we would be in for a lengthy wait.  They were really quick to get there though so it wasn't nearly as long of a wait as I thought it might be.

I asked the dr. about the possibility of H. Pylori.  He said that H. Pylori was actually very possible.  He sent us home with stuff to do a stool sample to check for that.  I also asked about vitamin D deficiency.  He told me that he would have that checked on her labs.  I asked about adrenal fatigue.  He told me that something like that would be extremely rare but not impossible.  I asked about Type 1 diabetes - hence the ultrasound on the pancreas.  I had previously asked the pediatrician about lyme disease and he seemed to brush me off and told me that it wasn't very likely here.  I've since had 2 people contact me and tell me that her symptoms sound just like lyme disease.  A friend of mine sent me some great info that I'm going to look into and see about having her tested for that.

We were at the ER for about 3 hours.  At the end of our visit we were told-
Gallbladder & pancreas look good
Blood work is all normal
Urine sample was normal
Chest x ray was normal
Maintain the gluten free diet since it seems to make a difference

The dr. did say that he thinks we are on the right track thinking it may be Celiac and an underlying thyroid issue.  He told us to keep the ENT appointment and to for sure have the thyroid checked out more thoroughly.  He also gave us a referral to a pediatric GI at Primary Children's.  He said that when we call to schedule that they are likely going to tell us that the dr. is booked 6 months out.  He wants us to follow up with the pediatrician on Monday to see if the pediatrician can push that visit up any sooner.  He also gave Sam a prescription for Prevacid and another one to help with any inflammation in her stomach.  The Prevacid she's suppose to take 2 times a day for a month.  The other one is 3 times a day for 10 days.

At this point I'm not sure what to do.  When we left the hospital we went over to Shopko to fill the prescriptions.  Sam was starving (it was 4 pm and all she had eaten that day was a bowl of Cheerio's).  We ended up at Chick Fil A because, "I just want chicken nuggets.  I know they aren't gluten free but it will be worth it!"  So, we went and got chicken nuggets.  She told me later that her stomach started to hurt before we even left the restaurant and hurt for quite a bit longer than what it has been when it acts up.  I thought ok, this is Celiac's for sure.  But tonight I made fried chicken with gluten free flour as breading, mashed potatoes & gravy from scratch (only possible non gluten free item was the corn starch) and gluten free cornbread.  Her stomach hurt about 20 minutes after dinner.

I felt like Sam had done really well today.  She was up at 11:30 but by 12:30 was complaining she was tired again.  I think she went to bed about midnight last night, so still 12 hours of sleep.  She did good at Jade's birthday party and played outside with the kids.  As soon as we got into the car to go home though she told me how tired she was.  Her stomach started to bother her after dinner but she was able to sit at the table and get some more homework done for awhile until her head started hurting too much.

Tomorrow I'm calling the pediatric GI at Primary's.  I'll also call the pediatrician's office.  Our pediatrician is out for the week on vacation but I know he consulted with another doctor about Sam's case.  I'm hoping we can get in to see that dr. tomorrow and that he will be able to call Primary and push up the appointment with the GI.  I'm also planning to call the ENT and see if I can't move our appointment over there up.  I'll also be calling the Peterson Wellness Clinic to see if we can't move that appointment up as well.  I had Sam's Young Women's leader (who has Celiac & a thyroid issue) that she use to get B12 shots to help with her energy level.  I'm going to be asking about that tomorrow as well.  Maybe that will be enough to help her get through school each day.

If she doesn't go to school tomorrow I'm going to have to go put her on the home bound program.  I know she will be extremely disappointed about that.  She loves going to school because she gets to see all her friends there.

Hopefully we can get the H. Pylori test done soon and get results back on that.  I'm crossing my fingers that we can get some answers soon.  I'm missing my sassy dancing queen.

Saturday, April 29, 2017

Samantha keeps us worried

It's been 2 whole weeks since Sam started not feeling well.
She's missed 26 hours of dance class and 10 days of school.
She's slept an insane amount of hours.
She spends her days curled up in the fetal position whether she's awake or asleep.
She's noticed that when she eats food with wheat in it her stomach hurts worse and longer than if she eats things without wheat.
She has a headache most of the time she's awake.
She talks about going back to bed and how tired she is the majority of the time she's awake.  She can't seem to stay awake longer than 8-10 hours at a time.
She has perpetual body aches and pains.

We've been to the pediatrician twice - he's consulted with another pediatrician in the office.
Completed a 5 day z pack and filled a prescription for abdominal migraine medication which she takes once a night.
Had labs runs twice.  Iron - normal.  Mono - negative.  Thyroid simulator - normal range but low end (54).  Celiac panel - normal range (0-3 range with her score being 1).  Thyroid hormone - normal (low is 68 and normal high is in the 400s.  Her score is about 93 so still on the low end.)  White blood cell count - normal.
Called and spoke with the pediatrician 4 times.
Visited the chiropractor - where we received the suggestion to check for Celiac
Made an appointment with the ENT to further investigate the thyroid (it's two weeks out or I cancel preschool to take her).
Made an appointment at the Wellness Clinic (also two weeks out for the same reason as the ENT). I've put in a request for a referral to a GI.  I was told that the GI's in town don't want to take pediatric patients unless they are the size of an adult.  When I said she's 125 lbs, almost 5'8" and 14 years old I was told "They MIGHT take her."  If none of them will take her it will be a trip to Primary Children's hospital and that will likely be a good 6 weeks out.

And now, our pediatrician is on vacation for a week.

The day after Sam took the abdominal migraine meds the first time I called and spoke with the pediatrician because she seemed worse than the day prior (think fetal position at the top of the stairs and telling me it hurt to breathe).  The pediatrician told me that if she was hurting that much and in that much pain that I should take her to the ER because they can do tests and get results back faster than if he orders them.  I've been thinking about that since he said it.  At this point, the pediatrician isn't helping.  I can't spend another two plus weeks waiting for her to be seen by doctors.  If I can't get her to school Monday I'm going to have to put her on the home bound program.  I already opted her out of the remainder of Sage testing so she wasn't stressing out about making that all up when she goes back to school.I honestly don't know what else to do for her.  When I spoke with the nurse on the phone Thursday (that's the dr's day off) she seemed worried about Sam too.  Today she called me back to tell me she didn't realize the pediatrician was on vacation.  She asked about Sam and what our game plan was.  She told me she's been thinking about Sam since she spoke with me yesterday morning and has been worried about her.  She told me she thinks our best bet is the ER too because if nothing else maybe we can get in to see another doctor sooner.  At this point, I'll try anything.

Tomorrow, we go to the ER.

Tuesday, April 25, 2017

Sam stumps the doctor

With six kids in the house if it isn't one of them, it's another one.

Easter weekend we headed to Manti for all the traditional Easter festivities.  Sam sometimes will sleep part of the way there.  Generally she doesn't sleep the entire time (she's my kid who sleeps like I do - six hours and she's good to go).  Sam slept almost the entire way to Manti.  I didn't think too much of it at the time.  We had a good weekend, saw all the cousins and family, the Easter Bunny left way too much for the kids, etc.  Sam seemed to be ok Saturday and Sunday.  She was a little quiet, but nothing too drastic.On the way home on Sunday she slept most of the way home again.  I didn't think too much of it at the time.  I thought maybe she just wore herself out.  It was a long weekend, packed with lots of activity and we never sleep great (we sleep on the floor).  When we got home Sunday night Sam started complaining she wasn't feeling well.  Mostly it was flu like symptoms - nausea, stomach ache, body aches, low grade fever, etc.  She asked for Pepto which I found odd.  My kids hate that stuff.  It always makes them puke and they know it.  She took the Pepto and went to bed about 11 pm (totally normal bedtime for her).

On Monday Sam woke up with the same flu like symptoms.  She was dry heaving any time she was awake.  She spent all her time in the fetal position and in her bed.  She was only awake once or twice for about 20-30 minutes.  She didn't wake up and stay up until 2 pm Tuesday (36+ hrs since she went to bed).  I woke her up on Tuesday so I could take her to the dr's office.  She was awake from 2 pm until about 10 pm (only 8 hrs).  She complained of being tired the entire time she was awake.  We went to see the pediatrician.  He said she had a sinus infection and that would explain her headaches and congestion.  The sinus infection didn't explain the low grade fever, chills, body aches, stomach ache, pain when she was eating, and several other symptoms.  We decided to do lab work to check her iron, thyroid and for mono.  The dr. said he should have results back Wednesday.  He said that depending on how her results came back, he would probably prescribe a Z pack for the sinus infection on Wednesday.  So, we headed out and ran a few errands.  This night the power was out at our place for a solid 5 hours so we ended up going out to eat.  She started doing a little better during dinner.  I could see a little bit of her personality and spark start to come back.  As we were leaving the restaurant she started complaining that her stomach was hurting up under her rib cage on the right side.  She said that it was a pinch and it lasted for about a minute.  I wondered if maybe it was her gallbladder giving her fits.  We got home and she went to bed at about 10 pm curled back up in the fetal position.

Sam slept from 10 pm Tuesday until 11 am Wednesday.  On Wednesday we went back to the dr.  She wasn't doing any better and I was concerned about the stomach pain when she was eating.  The tests results were back in anyway.  At this appointment the dr.. said her iron was normal, the mono was negative and the thyroid was a little on the low end but not so low she should need medication.  He prescribed the Z pack for the sinus infection while we were there.  At this point he was stumped.  Her white blood cell count was normal as well.  He said the other thing he would be concerned about with this much fatigue is leukemia.  With her white blood cell count being normal though, that threw that out of the mix.  The dr. suggested that perhaps she had an ulcer and that was causing the stomach pain.  Her gallbladder is on the opposite side that was hurting her so he didn't think that was it.  He said that if the Z pack hadn't made a difference over the next 10 days then to have her start a course of prevacid.  I felt like this might be possible - she does worry a lot and she's had some issues at school with other girls this year.  I didn't feel like it explained the sleeping and tiredness though.  I took her home and she went to bed about 10 pm again and didn't wake up until 9 am on Thursday.

Thursday Travis and I had to spend the day in Ogden at an Adoption Pathways class for our foster license.  My mom was nice enough to take the day off and tend to kids.  Sam spent the day at my mom's and really just laid around.  Anyone who knows Sam, knows she's not the super quiet type.  My mom said she was really quiet and just laid on her bed and kinda played on her phone for a good share of the day.  Thursday night she went to bed around 10 again and slept in until about 9-10 am on Friday.  Friday she seemed to finally have some life back in her.  She was away for about 8 hours and I didn't hear her complain that she was tired.  She managed to make it across the street to see her friend.  I thought things were maybe looking up.  She was up until about 11:30 on Friday.  Saturday she slept in until around 11 am or so.  Again, Saturday I thought she was starting to perk up.  She was awake a little longer.  She worked on choreography for Caleb's choir group and I didn't hear her talk about being tired.  She went to bed about 10 or so on Saturday and was up around 9 am on Sunday.

By about 12 or 12:30 on Sunday she was telling me that she was tired again.  She had a hard time at church because she was tired and just wanted to get back in bed.  Our church session is 1-4.  After church was over we had my grandpa's 90th birthday party.  We went to that and she seemed to perk up some.  She went to bed about 11 or midnight on Sunday.

Monday comes and the flu like symptoms of the previous week are back.  She's got the body aches again, the stomach ache, the low grade fever, chills, nausea, a headache, etc.  She came upstairs about 6:30 am and asked me if I would just drive her to school so she didn't have to walk.  I told her I would and she fell back asleep in my bed.  When I tried to wake her up she had all her symptoms back and could barely sit up.  I had to take Kash to the dentist so I left her home to sleep.  I finally woke her up at 11 am so I could talk to her about what the dr. had said.  I had called the dr's office while I was at the dentist with Kash.  I made an appointment for 10:45 but the dr. saw we were on the schedule and called me to save me a trip.  He said that maybe she was suffering from abdominal migraines.  I didn't even know there was such a thing.  After a little googling I learned that it's typically diagnosed in kids ages 3-10 and can be a precursor to adult migraines.  I get migraines so I figured it's possible.  He sent a prescription over for a medication that has an antihistime so told me she needed to take it at bedtime because it can cause tiredness (oh goody).  I had scheduled an appointment with the chiropractor for her at 2:30.  He noticed that she had some eczema on the back of her arms.  I had told him about everything that had been going on and he asked if she had always had that eczema there.  I told him yes.  He said that the eczema there can be a sign of an allergy to something in your diet.  He said that a lot of the symptoms I had described sounded like a Gluten allergy.  He suggested we look into having her tested for Celiac's.  Sam was up from 11 am until 5:30 pm on Monday.  I made her ride to Brigham when I took the girls to dance, just in case she felt like she could make it to dance class (she missed every class the week before.  If you know Sam, you KNOW that's abnormal).  By 5 pm she was curled up in the fetal position in the front seat of my car crying because she hurt and was tired and just wanted to go to bed.  I got her home by 5:30 and she went to bed.  She took a 3 hour nap before I woke her up to eat dinner.  I made lasagna with Gluten free noodles (just to try it out).  She didn't eat any garlic bread with her lasagna.  She didn't complain of her stomach hurting after dinner so I figured that was a win.  She was able to stay up until about 11 or so and do homework.  I thought she seemed to be doing a bit better and maybe she would make it to school today.

This morning I went down to wake Sam up at 7 (Nash had tried and she only stayed awake about 10 seconds).  It was all she could do to sit up and get dressed.  She finally made it to the top of the stairs and just sat down and curled into a ball.  She told me that if she took a deep breath that it hurt to breathe and her ribs hurt.  Well, that's new.  I had her move to the couch and she asked for an ice pack for her stomach (also new, usually she wants pressure and heat on her stomach).  We got her an ice pack and she almost immediately fell back to sleep with the ice pack and a blanket on top of her all curled up in the fetal position.  I called the pediatrician's office and left a message with the nurse.  The dr. called me back fairly quickly.  I asked if the new symptom could be a reaction to the new medication she took the night before.  He said he didn't think so.  He told me he had consulted with another pediatrician in the office and based on what her labs looked like and her symptoms he would have done the same thing.  The other dr. didn't feel like there was anything our dr. was missing.  The pediatrician told me he didn't know if he should order some scans and x rays or not.  He didn't want to expose her to radiation if he didn't have to but also wanted to be sure that there wasn't something else major going on.  He told me that if she was doubled over in pain and it was too much for her to handle to take her to the ER because she would get the scans and the results back faster than if he ordered them.  I asked him about testing her for Celiac's.  He said he was fine ordering that lab word.  He also told me that when they test the thyroid they actually test the thyroid stimulator and if it's off then they test the actual thyroid hormone.  Since we were going to be sticking her again for Celiac's, he decided he'd order the thyroid hormone test as well since the stimulator had been a little off.  Sam slept until noon today.  I took her to pick up another week's worth of homework from the school and to pick the boys up from school.  Then I took her to town to get the lab work done.  She was mad when she figured out where we were and why.  She hadn't been pleased with the lab work the week before so she was super not pleased this time.  It was a fight to get her out of the car and to the lab!  After the lab work was done we went to Sam's Club to get some fresh fruit for her to eat (I was down to grapes at home).  She saw some trek clothes in the Deseret Book window and asked if we could go look at them so we did that too.  After we had been to both Sam's and Deseret Book she asked if we could go to Sweetly Divine and see if they had anything Gluten Free.  I told her they wouldn't but she begged to go and look so I agreed.  We got over there and I asked her if she wanted anything (she had said earlier she was hungry).  She decided to get a brownie.  As we walked out I told her, you know that's not gluten free.  She looked at me and said, I know, but it will be worth it.  After she ate about half her brownie she was done.  Her stomach was hurting.  This girl can (and usually does) out eat her dad.  For her to only eat half a brownie (her favorite treat in the world) is not like her.  I asked her if eating the lasagna the night before had upset her stomach and she told me no.  Earlier in the day she had eaten some Cheerio's and I hadn't heard her complain about her stomach at all until the brownie.

The more I think about it, the more a Gluten allergy would make sense.  She's had stomach issues since she was 18 months old and no one has been able to figure it out.  With my mother in law being diagnosed with Celiac's about 2 months ago, it increases the likelihood that she may have it.  Caleb showed a sensitivity to wheat but tested negative for Celiac's.  They told us it would be a few days before we had the results back from today's lab work.

The bright side of today is that she was able to make it to about an hour and a half of dance (first time in a week and a half she's been to dance class).  She's also still awake so she's going on 11 hours awake today (that's a long stretch for her).

It really sucks to watch your very active kid become almost completely unable to do anything.  She's been in pain for a week and a half.  She's constantly tired and she just wants to sleep.  It's so unlike her to be this way.  I just feel bad she feels so rotten and there's nothing I can do to help.  I hope we can find an answer soon!

Monday, April 17, 2017

1 month check up with Dr. Ohling

Today I took Caleb in for his one month check with Dr. Ohling since he started the Semoralin.  I'm THRILLED to report that the kid has GAINED THREE POUNDS AND GROWN 1/2-1 INCH!  Holy cow!  We didn't expect to see significant results in such a short amount of time.  Even Dr. Ohling was surprised at his quick results.

Caleb's BMI is now just a little over 14 (it was 13.73 at his last appointment).  This is not a percentage.  His BMI percentage at his last check was about 3.4% or so.

I told Dr. Ohling we had visited with the nutritionist at the pediatrician's office.  I told him we had talked about calorie packing.  He said he was good with that and to continue doing whatever it was we were doing there.

I did admit that we've not done too super great at getting the Tyrosine 3 times a day.  He does for sure get it twice a day, it's just that dose after school that's hard to get (because I'm not home then and forget!).

Dr. Ohling wants to see him back in about 4 weeks.  This visit will be a quick weight and height check to see if he's still progressing or if he's stalled.  It's possible we will check his IGF-1 factor again at that appointment.  He said that if Caleb is continuing to grow then he might wait 8 weeks to do the IGF-1 retest.

Since he's doing so well we aren't going to mess with the dosage of the medication at this point.  He's just taking .15 ml's once a day of the semoralin.  He's also taking a B complex vitamin once a day and the Tyrosine 3 (or at least 2) times a day.  We've also still got him on a probiotic and the drops from JanaLee.

I have noticed that he's hungry more often (he ate a whole ham sandwich for breakfast today - weird, I know, but I take whatever I can get).  He's also been slightly more willing to try foods.  He doesn't usually eat more than one bite, but at least he's trying one bite.  He's also eating more when he does eat so that's a big improvement as well.  I was also able to report to Dr. Ohling that he's finally sleeping too!  Even Caleb has commented, "Mom, I can only read about one book before I fall asleep now instead of a whole bunch!  It's sad!"  I told him it's ok, there's plenty of time to read (he read a 5 book series over the Easter weekend).  Travis and I are super happy to see such quick progress.  We are hoping that it continues!

Wednesday, March 29, 2017

Caleb visits with the nutritionist & B's post op appointment

This morning Brookelyn had her post op appointment with Dr. Blotter.  I was a little worried about what her tubes would look like.  Historically, she hasn't done well when she's had just one tube in each ear.  Much to my surprise (and delight) her tubes were open and looked fantastic!  That's a first!

I talked to Dr. Blotter about what Dr. Hoffman said regarding her headaches and a possible sinus or allergy connection.  Dr. Blotter said that we could re allergy test her since she was so young when she was tested last time.  However, with the intensity and duration of her headaches, allergies were likely not the cause.  It seems more plausible that the cause of her headaches is sinus related.  Dr. Blotter told me that they have a small CT machine that takes a picture of the sinus cavity much like a panoramic x ray at the dentist's office.  So, we have scheduled an appointment for the end of April to go have this CT scan of her sinus's done to see if there is anything there that would be causing constant headaches.

Caleb had his appointment with the nutritionist.  This is a different nutritionist than the one he saw a year ago.  Her name is Terel Anderson.  I will admit, I didn't have a lot of hope for this appointment.  The last time we saw a nutritionist it was a joke.  He wanted Caleb to drink chocolate milk all the time and he wanted us to calorie pack with junk calories.  I didn't feel like that was going to get to the root of the issue or solve anything.  I spoke with Terel on the phone a few weeks ago and kind of gave her an over view of what we've been dealing with with Caleb and food.  She did tell me that there's a food clinic here in town that we could get him into if necessary.  The food clinic works in conjunction with Primary's failure to thrive clinic as well.  After speaking to her a few weeks ago I had a good feeling about the whole situation and was a bit more optimistic.

I feel like today's meeting with Terel was a productive meeting.  We learned that Caleb weighs 44.5 pounds (0.8% - not new news), is 48 inches tall (3.57%) and has a BMI of 13.73 (3.44%).  Terel told me that she wants his BMI no lower than 10%.  The BMI we were given today is actually lower than what Dr. Ohling told us it was a couple weeks ago (16.73).  Dr. Ohling told me the cut off for being underweight is 19, but Terel said that 19 is the cut off for adults.  I never did find out what the cut off is for kids.

At the end of our meeting with Terel we had a few goals to work on for the next month (until we go back to see her again).  1.We need to be giving Caleb whole milk and not 2%.  If he wants chocolate milk, fine, but it needs to be whole milk.  2.We are to cut out all juice.  This isn't hard as I don't buy a lot of juice anyway.  She said that the sugar in the juice will fill him up, curb his appetite and make him not hungry.  So, no juice. 3. He can drink water in between meals, but not at meal times.  Drinking water can help fill you up.  Also, because liquids can fill you up, he has to eat his food first and have his liquid (milk) at the end of his meal. 4. He is to have a high calorie snack before bed each night (ice cream, milk shakes, etc).  Let me tell you this one sure was met with enthusiasm!  Terel also wants us to take advantage of what he will eat (which she did say we've been doing a good job of).  For instance, if he wants scrambled eggs, add some cream cheese to those scrambled eggs or some half & half or some whipping cream.  If he wants bread, give him wheat to increase his fiber intake.  If he wants fruits or veggies go ahead and let him eat all he wants of those.  She wants us to try and get him to eat Greek yogurt instead of other kinds of yogurt.

 She did say that we've been doing a good job of what she called Division of Responsibility.  That means that we are in charge of what food goes on the table and when and he's in charge of whether he eats it or not.  She said to keep that up.  She was also pleased that we've been able to pinpoint which foods he will eat and under what circumstances he will eat that food (for example he will only eat ham sandwiches if they are a certain temperature) so that we can maximize that.  She said that he may have a texture issue and that's something that can be addressed at the food clinic if necessary.  She also said that it's highly likely that he will need to be exposed to a food 80-100 times before he's even going to taste it.  She said that if he lets us put different foods on his plate, great, count that as an exposure.  After being told 80-100 exposures I'm feeling like I'll never get the kid to try new foods unless I only cook the same meals every week for 100 times!

Terel said that she's good with us continuing on what we're doing with Dr. Ohling and JanaLee.  She agrees with Dr. Snadgren that if it ain't broke, don't fix it.  Since we saw progress there before she says to keep going.  Travis said he feels like since we started the semoralin last week that Caleb has been more willing to try foods at dinner time.  He isn't eating them per se, but he's more willing to try them than what he was.  Travis noted today that Dr. Ohling told him the semoralin should help increase his appetite.  Terel said that there is an appetite stimulant they can put him on, but she doesn't want to do that right now with us trying the semoralin and changing a few food routines.  Otherwise, we won't know what it is that's working and what's not.  When we go back in a month we will re evaluate that and see if he needs to try the appetite stimulant.  She did say that's something that he can't take long term so I don't know how long that would last.

Side note - as far as the Semoralin goes, Caleb has been doing really well.  I seriously thought we'd have to sit on him every night to do it and that it would be a screaming raging temper tantrum.  He's surprised us and has done really well.  Steve (his favorite cow) has been MIA for two days and that upsets him at shot time.  Tonight he finally caved and found another stuffed animal to hug while he got his shot.  I'm sort of crossing my fingers Steve stays missing (he's WAY attached to that thing) and part of me is sad about it and hopes we find Steve next week while Spring Cleaning so that he has Steve to squeeze during his shots.  We haven't noticed a major growth spurt yet on the semoralin but Dr. Ohling did say that it would likely take a month or two before we saw any results.

So, we survived another day and two more doctor appointments!  I think we are good on dr. appointments until we go back to see Dr. Ohling when the semoralin runs out (which I found out the $300 was actually a 2 month supply not a one month) or until the first part of May when we go back and see Terel.  Here's hoping we see some growth!

Tuesday, March 21, 2017

Brookelyn visits Dr. Hoffman

Today was the day Brookelyn got to meet Dr. Hoffman at Primary Children's Hospital.  Travis took the day off and we took Olivia with us as well.  We had been told to expect to be there for a good three hours by a friend of mine who has been there before.  I thought our appointment was at 9 am, Apparently, our appointment at 9:30!  Fortunately for us, we were taken back a little early.

First, Brookelyn was tested by a nurse.  She did several of the same tests Dr. Perry (the ophthalmologist she saw back in January).  Just watching, it seemed that she did pretty well with the tests the nurse conducted.  I could tell that she was a little tired (we did wake her up at 6 am but she did sleep all the way to the hospital).  She was able to read most of the letters on the eye chart.  I was surprised that she didn't read further down the chart than what she did.  Mostly she would read the first and most of the second line and then it seemed she would get stuck.

After being tested by the nurse, a nice lady came in (an assistant to Dr. Hoffman).  This lady knows how to test a girl!  She spent a good 15-20 minutes doing eye tests with Brookelyn.  She was constantly moving between the left and right eye.  She was having her go between reading numbers on a tongue depressor she was holding by her nose and the eye chart across the room on the wall - this allowed her to check her near and far sight.  At the end of this testing, Brooke got her eyes dilated.  She was not happy about that - it seemed to sting more than the last time around.  Then they sent us back out to the waiting room to wait for her eyes to dilate.

Finally, Dr. Hoffman came in.  He's an older gentleman and I felt that he was nice.  We had been warned that his bedside manner wasn't the greatest, but I didn't have a problem with him.  He ran yet a few more tests with Brookelyn.

Dr. Hoffman says that when she's looking down, her eyes stay aligned better than when she's looking up.  Her intermittent exotropia seems to be going in a V pattern (both eyes actually turn out and not just the right eye).  The good news is that both of her eyes are working together.  This means that her left eye hasn't been overcompensating for the right eye and there has been no vision decrease.  This is good.

He said that he expects that her eyes turn out more later in the day when she's tired or when she's focusing really hard on something.  She's already aware that she can make her eyes turn out if she just focuses really hard on something and enjoys doing it to freak out her siblings!  Stinker!

He said that Brookelyn is farsighted and this is actually in her favor.  If she was near sighted the exotropia would likely be worse.  Because she's farsighted she has to work harder to keep her eyes aligned and it's given her better control of her eye muscles.  Putting her in glasses right now would make it so that she was getting headaches and would actually make the exotropia worse - so, no glasses for now, but she could eventually end up with them.

They seemed impressed that she has as good of control over the exotropia as she does.  I'm thinking that because she's had it for so long she's probably just learned how to cope with it.  Travis asked if it's something she will eventually outgrow.  Dr. Hoffman said the likelihood of that is slim to none.  Either she will maintain what she's got right now or it will get worse.  He doesn't want us to wait more than 6 months to have it checked again, so we made another appointment for September.

Dr. Hoffman said that he could do surgery right now if that's what we wanted, but if she were his kid he would wait and see what happens.  It's possible she won't ever need surgery, that she will be able to maintain what she's got.  He did say that if he does do surgery he would want at least one more set of measurements on her so he knows whether to adjust 2 or 4 of the eye muscles (2 in each eye or one in each eye).  He also said that it's possible she may get made fun of for it as she gets older.  If it doesn't get worse, but she's getting made fun of for it that's a valid reason for him to go ahead and agree to do surgery.  Right now, we are ok with waiting another 6 months to see if it gets worse or if she's able to maintain the level she's at.  My gut feeling is that it may get slightly worse.  I don't know if it's because it was pointed out to me or if it's just that it's gotten worse, but I totally notice it (all the time) now!

We were able to leave PCMC by 11 so we took the girls and headed over to Hogle Zoo.  Neither of the girls had been there before and the weather wasn't all that bad.  There were several school buses there for a field trip so there was a good amount of people there.  I haven't been to the zoo since Caleb was about 18 months old so there was a lot of things that had changed!

 The girls had no idea where we were or what we were doing.  I had to point out the flag that had the word zoo written on it and tell them to sound it out!  Then they finally figured out where they were!  They were too funny when it finally dawned on them that we weren't just going home and that we hadn't driven to some weird restaurant (they had said they wanted lunch when we left the hospital!)

This gorilla totally looked dead.  He was snoozing away and had his hand covering his face.  Had it not been for his stomach moving up and down I would have thought he was a statue!

They had seen the giraffes when we first got there but didn't get to get super close.  They kept asking the whole time we were there if they could go see the giraffe's up closer.  They were pretty excited about getting to see them a second time.  There was even a zoo volunteer there when we arrived and she told us their names and all kinds of fun stuff!

And in completely unrelated news - guess who lost her first tooth yesterday?!  She pulled it all by herself and didn't cry or anything!  The one right next to it is lose too and I'm pretty sure at the rate she's been wiggling it that it will be out before the week is over!  Brooke is a bit bummed out none of her teeth are lose yet!

Thursday, March 16, 2017

Caleb visits Dr. Ohling & we talk to the nutritionist

In addition to Brooke having her ear surgery today, Caleb had his appointment with Dr. Ohling at the Wellness Clinic this afternoon.

I got a phone call on Monday to tell me they received his blood work results back.  Caleb's IGF 1 (Insulin like growth factor) was at 245.  It's difficult to determine if this is good or bad.  There is something called the Tanner Scale.  Tanner Scale refers to sexual development.  Tanner Stage 1 happens anywhere from ages 8-15.  Tanner Stage 2 :3 happens anywhere from 8-16.  Tanner Stages 4 & 5 happens anywhere from ages 11-18.  If you are in Tanner Stage one, normal IGF 1 levels range from 52-391.  If Caleb were in this stage, his levels would be normal.  Tanner Stages 2 & 3 IGF 1 levels range from 39-648.  If Caleb was in this stage his levels would still be normal but very low.  Dr. Ohling says he's ok with putting Caleb on the Semoralin (that amino acid that acts like human growth hormone) because he still isn't growing even though his numbers are in the normal range.  After talking about this and looking over Caleb's info Dr. Ohling said that Caleb's BMI is 16.73%.  I asked what it was supposed to be.  He said that the cut off for underweight is 19%.  This means he is officially underweight.

After further discussion, Dr. Ohling learned that Caleb takes metadate for his ADD.  Two common side effects of metadate are anorexia and loss of appetite.  It's interesting to note here that Caleb actually eats better on the metadate than he did on the vyvanse.  He had nearly zero appetite on the vyvanse and that was one of the reasons we switched medications.  Dr. Ohling said that what the ADD medication does is create dopemine (and another chemical I can't remember what he said) and it keeps them in the body longer.  Tyrosine is what the body uses to create dopemine.  Tyrosine also helps create neurotransmitters in the brain that help calm the ADD as well.  Dr. Ohling asked if Caleb is getting 8 hrs of sleep each night.  I told him it totally depends on the night, but more often than not, no.  We send him to bed at 9:30 pm.  Often times he is up and reading until midnight or 1 am.  He wakes up anywhere between 6:30-8 am depending on the day.  (Can you tell he keeps his mother's schedule?)  Dr. Ohling made the point that if he's not sleeping, he's not going to grow as well either.

So, what do we do?

We have ordered the Semoralin.  Semoralin is similar to the human growth hormone.  It doesn't have the side effects that the hormone does because it is a chain of amino acids that your body makes anyway.  It's also much cheaper than human growth hormone.  Growth hormone can be as much as $5k/month.  The prescription I paid for on the Semoralin was $300/month.  Mind you, insurance covers ZERO of what we accrue at the Petersen Wellness Clinic because it's all classified as homeopathic.  Stupid insurance.  The Semoralin has to be injected into the stomach every night.  he will start with .150 mL's.  We will have to probably mess with the dosage.  Typically he gives this to adults and not children so the dosage is going to be a bit tricky.  It's also going to take a few months to see if it's making a difference.  With the injections, you use an insulin needle so the needle is tiny.  I already know that this is going to be a battle for the first little while.  I'm crossing my fingers he's good and I can do this quick and not have to sit on him!

In addition to the Semoralin, we have added Tyrosine supplements.  This should help him sleep (Hail Mary!) and it should help with his ADD (another Hail Mary!).  I'm not planning to take him off his ADD meds any time soon.  Typically those meds wear off about 4:30-5 pm.  I should be able to tell if it's working or not because nights won't be such a nightmare!

We are ALSO doing a B complex vitamin.  This will give Caleb the energy his body needs for the Tyrosine to make all the neurotransmitters.

Dr. Ohling is also going to give me a recipe for some protein shakes to make for him to try.  I couldn't get him to drink the premade ones I bought when he was in first grade.  I couldn't ever get him to eat the protein bars either.  This should be interesting.

In addition to the appointment with Dr. Ohling, I got a call from the nutritionist at the Budge Clinic telling me she had a message from Dr. Sandgren (pediatrician) wanting her to set up an appointment with us to see Caleb.  I had already scheduled an appointment for March 29 to go see her.  I started talking to her a little about Caleb and told her it isn't that he doesn't eat, it's more along the lines of there's only about 12 foods the kid will eat.  She said it sounds like he's got more of a food aversion issue than anything else.  She told me that there's a food clinic here in town she helps do and it's currently booked out through the end of April (surprise, it's super hard to get into and there's a massive wait list).  She said that she's worked with the Failure to Thrive Clinic at PCMC and has learned several of their tricks as well.  She kept our appointment on March 29 and told me to remind her of all the things we talked about tonight.  It sounds like this nutritionist is going to be much better than the one we went to a year or so ago!  She told me that if she can't help him she can definitely refer him to someone who can.  She also mentioned that often times this food clinic and the Failure to Thrive Clinic trade patients back and forth.  Sounds like we may make a journey to PCMC eventually anyway.  Oh well, if it helps, I'll do it!

And thus, we begin a new chapter for Doobie!

B has surgery

Today was a very busy day.  We started our day off by heading to the Cache Valley Hospital for Brooke's ear surgery.  Dr. Blotter wasn't sure what he was going to do when he got inside her ear.  We had several different options.  It really just depended on what he found when he got in there.

We had taken her in 2 and a half weeks ago and that's when we set the surgery up.  We went back two days later because she had a bunch of drainage coming out of her left ear.  Turned out she had puss oozing out of her tube (the tube that was supposedly completely non functional).  She was put on a z pack and we were sent home to continue drops as well.  I was crossing my fingers there wouldn't still be infection in there today.

B was really good and totally brave when we check in and went back to outpatient surgery.  She knew what was going to happen and had her Grandma Butter blanket with her ("mine").  When the anesthesiologist came in she started to get a bit nervous.  When I tried to walk out with her I knew she was going to cry.  When I tried to turn her over to the anesthesiologist she took about two steps away from me and realized I wasn't coming and ran back to me crying.  She was scared and didn't want to go.  I convinced her I would see her in 20 minutes.  The poor anesthesiologist had to pick her up and carry her to the OR!  She didn't wig out completely, but she totally cried.

About 20 minutes later Dr. Blotter came in.  He said that when he made the incision into the right ear (the one that was severely retracted) it did really well.  There was still a lot of infection in the left ear.  He said that the tube was in fact non functional.  He said that the ear wasn't "a pus volcano", but there was still a lot of junk in there.  Just imagine if I hadn't gotten her on antibiotics two weeks ago!  He ended up using a titanium tube - those are the ones she's done the best with.  He also only put one tube in each ear.  I'm hoping that doesn't come back to haunt us.  He said that he chose to just do one because it's less risk of perforation and having to go in and do a fat graft later.  He also feels like since she's older and has done so well for so long that perhaps she may do better this go round.  We shall see!  She has a follow up on March 29th.  I'm crossing my fingers we don't have to unblock a tube!

When she came out of recovery she didn't cry or whimper at all!  She was SO good!  There were a few tears, but no screaming or major crying at all!  She did get a bit nauseous a couple times.  I was surprised that she complained more of the right ear hurting than the left.  Dr. Blotter did say he flushed that left ear out a good couple of times to be sure he got all the infection out.  We were able to go home at about 11 am (surgery was scheduled for 9:15 but she didn't go back until about 9:40).

When we got in the car Travis asked her if she wanted to go to Angie's and she said no.  I asked her if she wanted to go home and she said no.  I asked her what she wanted and she said, "I want to go see Grandpa Scott."  So, we drove to Grandpa's office and she had about a 30 minute visit with Grandpa.  Grandma Terri stopped by later and brought her a stuffed animal (she loves them and can't ever have enough).  She's done so well today you'd never know she had surgery!  Hoping it's still like that tomorrow!  If it is, I may just send her to school so she doesn't miss centers!

Monday, March 6, 2017

A new day, a new dr, a new possibility...

I took Caleb into the Wellness Clinic today for a drop test with JanaLee.  For the first time since he started working with her in October 2015, he tested in the normal range on everything she tested!  This is both good and bad news for us.  It's good because it means his body is finally in balance and things are getting to where they need to be.  It's bad because she's at a point that she doesn't know what else she can do to help him.  She asked if I would be willing to see the naturopath and I told her that at this point, I'm willing to try anything!  I was in the middle of scheduling an appointment when the naturopath (Eric Ohling) came out and asked if I had a minute.  Apparently JanaLee had gone back and talked to him and he had some time.  Caleb and I went back and met with him.  I really liked him.  The first thing he told me was, "I think I have something that can help him."  There is an amino acid chain that was created as an alternative to the growth hormone (can't remember the name of it now).  It doesn't have any of the possible bad side effects that the growth hormone does.  He said the only down side is that insurance doesn't typically pay for it and it runs $270/month.  It is an injection but it's with an insulin needle so it's a teeny needle.  It's one injection a day in the stomach but because the needle is so small he really wouldn't feel much.  He said that he typically uses it with adults so he's got to do some research on dosing for someone Caleb's size.  He sent us over to the lab at the hospital to do another blood test.  He's checking his IGF-1 levels (hormone and insulin).  We've got another appointment next Monday and he should have the blood work results back by then.  Hopefully this is something that will at least help him grow.  I worry about him getting teased at school.  Last year a few of the kids were pretty unkind about his size - asking him why he wasn't in the kindergarten hall, etc.  I worry that as he gets older the kids will just get meaner about it.  Plus, my gut keeps telling me there's something more going on and to keep pursing it.  It's because of that feeling that I've been so persistent in figuring out what's keeping him from growing.  People keep saying, "Well, maybe he's just going to always be small."  Well, maybe, but my gut says keep digging.  So, I'm still digging.  Here's hoping for new answers next week.

Sunday, March 5, 2017

More dr. visits

On Friday I took the kids into the allergy clinic for their shots.  I decided to take Brooke over to the ENT's office to see if they would peak in her ear because when I dropped her off at school that morning I noticed that there was a bunch of gunk coming out of her left ear and stuck to the side of her face (how I missed them when doing hair, I have NO idea!).  One would think that this would be a fairly easy objective, especially at the ENT's office where we have spent so much of her five year old life.  Nope.  I told the receptionist why I was there and could someone please check her ear to make sure nothing had ruptured as I know that would delay surgery.  She went back to speak with the nurse and came back out and told me, "The nurse said to just go ahead and do drops."  At this point I knew I was in for a headache.  I explained to the receptionist that we had already been doing drops for a month.  I re explained the situation and asked if someone could please just check in her ear (Dr. Blotter and Lindsey were both out).  She calls the nurse and asks the nurse to just come up and speak with me.  The nurse comes up and I explain what's going on to her (we were here the 30th, we've been doing drops for a month, we were back this week, the one ear is severely retracted, the other ear has a 3.5 yo tube in it that's totally healed over, one ear is draining, we're having surgery March 16th, etc.)  The nurse finally pulls B's chart up and says, "Well, they're just replacing the tubes in there, aren't they?"  At this point I'm annoyed.  No.  No they are not just replacing the tubes in her ears!  Dr. Blotter doesn't really know exactly what he's going to do until he gets n there and sees what's going on.  Please, for the love of all that is holy just have someone check her ear to make sure nothing ruptured!  If it ruptured we'll have to delay surgery which delays anything the eye dr. wants to do!  She finally agreed to have Dr. Wood come look at it.  We go back and they put us in the procedure room.  B was NOT having that.  She's been in that room and knows what goes on in there.  She immediately grabbed the door jamb and refused to go in.  I had to coax her into the room and promise the dr. wouldn't touch her tube while explaining to the nurse why she's freaking out.  Dr. Wood comes in and takes a look in her right ear - same as earlier that week - fluid, severely retracted, etc.  Looks in her left ear and goes, "Oh.  There's pus coming out of that tube.  She's got an ear infection in that one.  Since you have 10 days until surgery do you want an antibiotic?"  YES!  He then asks me what antibiotic they usually give her.  I tell him the two options she has (she's allergic to penicillin) and he agrees those are both good ones (duh).  He asks which I prefer and I tell him.  His nurse called the prescription into the pharmacy next door and I leave the office wanting to strangle people.  The next time I go see Dr. Blotter or Lindsey I'm going to tell them that when someone comes up and asks for someone to look in one of the Bown kid's ears they just freaking do it without questioning me!

I also got the call last week that Caleb's Celiac's test came back negative.  That's good.  Tomorrow we head back to see JanaLee at the Wellness Clinic.  Hopefully she may have some new ideas for us.

Friday also had Samantha back at physical therapy and the orthopedist's office.  She did another treatment of the Iontopheresis at physical therapy.  Dr. Seale ran through a series of tests with her in the exam room.  I told him that Laura had told me that one of the trainers explained to her in high school that often times with athletes, especially dancers, the outside quad muscles become stronger than the inside quad muscles and it can pull the knee cap diagonally instead of straight.  After looking at her a bit more he agreed that it seems that has been happening with Sam as well.  He's given her another set of exercises in addition to what the physical therapist has given her.  He seems to think that if she can strengthen that inner quad muscle she should get some relief.  He said that it would appear she's got a light case of runner's knee as well.  yay.  On the upside, she was able to compete on Saturday at Will Dance For Kids Project and hasn't complained of any knee pain so that's a big bonus!

Tuesday, February 28, 2017

A day for the doctors

This morning we took Caleb to his 3 month med check with his pediatrician.  We had to see the pediatrician instead of the health advocate because we had multiple questions the health advocate couldn't answer.

*Caleb has only gained 1 oz in 3 months despite having been working with JanaLee at the Wellness Clinic since December.  I was disappointed in this.  Last time we worked with JanaLee he made great progress!

*We asked about having Caleb tested for Celiac's Disease since Kris was diagnosed a couple weeks ago.  The pediatrician was good with ordering that blood work.  I asked if having Celiac's would mess with his growth like we've seen.  He said that it would be possible for it to mess with it some, but not a huge amount.  It would be more of an absorption issue than a growth issue.  After our appointment we went down to the lab and had his blood drawn for the Celiac's disease.  They have to send the labs out to SLC for this so it will be a few days before we hear anything.  Caleb was NOT impressed with getting his blood drawn.  He was quite pissed actually.

*I asked about having him tested for heavy metals.  When I had spoken with the chiropractor about everything that was going on, he suggested having him checked for heavy metals.  I'm a bit skeptic on this because I don't think he's been exposed to anything.  The pediatrician didn't feel like that was going to be worth while to run that test, so no heavy metals testing.

*I asked about a referral to an endocrinologist.  I told him what JanaLee had said about his pituitary and endocrin system showing up as being low.  I told him how we had done NAET testing prior and he had no idea what I was talking about.  I explained it the best that I could but I'm hoping he goes home and does some research to educate himself so he knows what I was talking about.  Not going to hold my breath though, I know he's a busy guy.  He was reluctant in agreeing to refer us to an endocrinologist.  Dr. Clarke was an endocrinologist and he never mentioned a concern with that for Caleb.  Dr. Sandgren said that typically the endocrinologists won't do much until you have height going up and weight going down.  Although Caleb is growing at an exceptionally SLOW rate, he's still growing, he isn't losing weight (today we learned he weighs 44 lbs and B weighs 51).  He said he would put in a referral for us, but I could tell he was reluctant to do so.  He had mentioned one in Ogden but I asked about PCMC.  I figure if there's anything major going on that's where we'll be sent anyway seeing as how they are the ones who specialize in children - no sense in seeing two different endocrinologists.  I agreed to wait a few more months before pursing the endocrinologist.

*Dr. Sandgren feels that seeing the nutritionist would be beneficial, even though we saw one before and it was a joke to say the least.  He feels that she may be able to dig a bit deeper and give us a some helpful advice seeing how Caleb is an INCREDIBLY picky eater on top of these other issues.  We go see her March 29th.

*Dr. Sandgren asked if we've noticed Caleb's appetite being suppressed.  I told him that he actually has a better appetite when he's working with JanaLee.  He still eats limited foods (SO picky), but he eats more of those foods when he's working with her than when he's not.  We kept his Metadate the same dosage but are keeping an eye on the appetite to see if it diminishes, as that would be a problem with his size.

After Brookelyn got out of school it was her turn to go see the ENT.  We were in and saw Lindsey on January 30th,.  At that appointment she had the entire tip of a Q tip pulled out of her left ear.  We were told to do drops for 10 days and come back about March.  We've done drops for most of February.  She's still complaining that her ear is bothering her.  She doesn't say that it hurts, it's just "bugging" her all the time.

*We saw Lindsey again today.  The audiologist tested B's hearing before Lindsey came in.  He told me that her right ear drum wasn't moving (fluid in it) and that the tube in the left ear was blocked (it's going on 3.5 yrs old so I'm not surprised).

*Lindsey said that her right ear drum has fluid in it - more than when she was there a month ago.  She said it doesn't look awful, but it looks worse than it did a month ago.  It's very retracted (think vacuum tube vs plastic wrap).  The tube in her left ear is indeed permanently blocked.  It's highly likely the ear drum behind the tube has healed and the tube is basically just sitting there not able to come out.

*We were give a couple different options.  First option was that we could do 5 days of a high dose steroid and a nasal spray.  We could do this for a week or a month and see if it helps.  This makes me leery as she's been croupy and when she does the nebulizer that's already a steroid, so adding another steroid will compromise her immune system and she will be more susceptible to infections.  Another option is to go in and take out the tube that's there and put another set of tubes in.  Travis was not a fan of this idea.  I asked about something we discussed when this last set of tubes was put in.  There was talk of possibly going in and removing part of the bone that connects to her jaw bone in an effort to widen her ear canal to help prevent her from getting more ear infections.  At this time, her ear canals look really good and she hasn't been getting ear infections, so that option is off the table.

*After quite a bit of discussion, we decided that we would put her under and put another set of tubes in.  I asked if they would be putting in two in each ear again as this is what she's had done every time but the first.  Dr. Blotter said that's a great question and honestly he isn't sure.  That's something he's going to have to ponder on and won't really know until he gets in there.  He said that it depends on her ear drums and how they react to the incision.  The ear drum that's retracted may be just fine to put two tubes in after it equalizes the pressure and it may increase the size of the incision so that he can't put two tubes in there.  We also discussed the possibility that her ears are full of pus pockets (lovely, I know).  He said if there's a bunch of infection in there then yes, he will put two tubes in each ear if possible.  We also discussed what kind of tubes he should put in.  They make a variety of different kinds and to be honest, B has tried them all.  She does best with the titanium (that's what's still in there after 3 years).  However, depending on what happens after the incision is made, will determine which kind of tube he can use.  The shape of the titanium tube is like a spoon.  The T tube is longer and more narrow.  If the ear drum will allow it, he will use the titanium tubes since that's what she's done best with, if not, he will go with the T tube and hope that at her two week follow up her body hasn't rejected them and kicked them out.

*So, B has ear surgery set up for March 16th.  There won't be a fat graft at this time (that's what we discussed a month ago when we talked about taking the last functioning tube out).  This will be her 7th (and possibly 8th) round of tubes.  They did say that since she isn't equalizing the pressure in her ears, it's essentially feeling like her ears need to pop all the time.  No wonder she's always complaining about her ears bugging her!  They would be bugging me too!

*Sam goes to physical therapy on Wednesday for a re evaluation on her knee.  I'm a bit concerned about how that's all going to turn out.  She's essentially quit wearing her brace because it hurts as much with the brace as it does without now and the brace is starting to hurt the back of her knee.  Based on how she's been filling out the paperwork the last time or two at physical therapy, I'd say the pain has increased.  I find this odd because she's been saying the iontopheresis helps her knee feel better.  My gut is telling me we will be going for an MRI after we see the orthopedist on Friday.  I'm crossing my fingers that she hasn't got any damage to her meniscus.  I'm not sure how she would handle sitting out an entire dance season.  It's possible she wouldn't survive or she would drive me to the brink of insanity.

All I can say is that things are suppose to come in three's, right?  I've got three kids and four-five issues (Caleb & weight, B with her eyes and ears & Sam with the patella & meniscus).  I'm just glad we have insurance again and apparently it will be a "Meet the deductible quick" kinda year.

Monday, February 20, 2017

Sam turns 14!

I had a lunch date and shopping planning with my two best friends for Friday, February 18.  Sam didn't want to be left home with her dad and the other kids so she asked if she could come along.  I relented and she brought Jade along as well.  We had a fun day of shopping with the girls and lunch.  Afterwards, we went to see the Lego Batman movie.  Everyone had to wear their new Batman shirts!

For her cake this year she sent my MANY Pinterest options.  The themes were random but totally her (New York, Batman, Unicorns & Dance).  I finally mashed together unicorns & dance and she was a happy camper about it.

She was thrilled to add two new unicorns to her ever growing unicorns herd.

I couldn't pass this shirt up when I saw it.  It says " a sport, only harder"

Bradshaw's got her a Batman coin bank.  She was ridiculously excited about this.

Leave it to Grandma Terri to find her some awesome new cat socks!

And, Grandma Terri got her her new doll (only 2 more and a graduation & wedding one left in Sam's collection!)

I can't believe she's this old (or maybe that I'm this old).  However, I will say I seriously CANNOT wait for her to get her driver's license so she can drive herself to dance class!  I will FINALLY get my life back!  She started competitive dance in second grade!  Not only can she drive herself, she can drive her sister!  Whoot, whoot!