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.