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!