Today's GI Appointment

Daylon had his follow-up appointment with the GI today. His fecal fat study came back normal, so he does not have any malabsorption issues.

For the most part, it was a very good appointment. Daylon has not been eating well at all lately and has been refusing his Boost, but somehow still gained about a half a pound. She gave me some ideas for getting him to drink the Boost and gave me a prescription for Periactin for him. Periactin is an antihistamine that is also used to stimulate appetite. I normally would not worry too much about his appetite, but the last two days he has eaten hardly anything at all. Yesterday all he ate all day was; a waffle, 3/4 cup of applesauce, 1 bite of a chicken nugget (I gave him 4 nuggets and potato salad for lunch), and about 1/4 cup of cereal. He even refused pizza for supper which is one of his favorites. Today he had one bite of peanut butter and honey toast, about 2 Tbsp. of Applesauce to take his Prevacid with, one bite of his cheeseburger for lunch, and one bite of his jr. roast beef. He did drink down his chocolate Boost so that is a good thing, but it is still not enough calories for a day.

We are hoping that the Periactin will help stimulate his appetite and get him to eat more. As it is right now, he has absolutely no fat on his little bones, which makes it very difficult to give his growth hormone shots. We see the GI doctor in a month and will go from there.

Results from Our Week of Tests

As you all know we had a week full of testing a couple weeks ago, and we received our results on Friday so I wanted to pass those on to you.


Monday we had Daylon's Gastric Emptying Study. That went well, aside from being the longest hour of our lives. They fed Daylon some eggs that had something in them that reflects on x-ray (I think it was radioactive), after he ate them he was strapped to the x-ray machine board for an hour while the machine took an x-ray every minute for an hour. This test showed a normal gastric emptying time. Normal half-time emptying for a male is 50 to 60 minutes and Daylon's was 51. Yay!!


Wednesday's Endoscopy showed that Daylon's stomach was a little red and inflamed. They took biopsies of his esophagus, stomach lining, and the top part of his bowel, and also suctioned some juices from his bowel to test for different bacterial infections. The biopsy from his esophagus showed that he has reflux and needs to be on meds for that, so he will be starting a twice daily dose of Prevacid. The biopsy of his stomach showed chronic gastritis and was positive for H. Pylori bacteria. Daylon will have to be on high dose antibiotics for 10 days to kill this bacteria. He is taking 500 mg of Clarithromycin and 1000 mg of Amoxicillin a day. All of the tests they did for bacteria in the bowel juices were negative. While our GI was doing the endoscopy they went ahead and took some blood to run some other tests as well. They tested him for Celiacs, which was negative. A metabolic panel and CBC were also done, along with some other tests that we aren't really sure what they mean right now.


Friday's Sweat Test came back Normal, which rules out both Cystic Fibrosis and Schwachman Diamond Syndrome. Another YAY GOD!!!


In the midst of all of this we got the call from Genetics that Daylon's Microarray is showing something. What they found has never really been seen before so we are not sure what it means. They found that Daylon has a partial duplication of his Y chromosome that involves a gene that controls growth. He has more of this particular area of the Y chromsome than he needs, which would usually result in a bigger child and more growth, which makes Daylon's case odd also. They think it is possible that the duplication is close enough together that it is turning off that gene. We still don't know much about what this all means for Daylon. They are running more tests to confirm the duplication and then we will meet with them to go over all of the results and also find out from them what this all means and how he could be affected, along with what it is impacting now.

A Crazy Busy Month...

Just wanted to give you all a quick update. It has been and continues to be an extremely busy month for us.

On the 6th, we took Daylon in to the pediatrician to see if we could get into an allergist. He was having a weird reaction (almost looked like hives) anywhere his bm touched and some other GI things (which he has always had) that made us think of allergies or GI issues. She referred us to the allergist.

We saw the allergist on the 11th, he did not feel that it was allergy related but went ahead and tested him for 9 food allergies and 16 environmental allergies. All came back negative but he felt that with D's constant runny nose and occasional dry cough we should treat it and see if we can get that resolved. So, he prescribed a daily dose of Claritin, and an albuterol inhaler for the days he has the cough, and referred him to a Gastroenterologist to go over the GI issues. We were very excited to see the GI, because it is something that we felt should be done also.

We saw the GI specialist on the 15th, and she felt that Daylon has enough going on that we should run some other tests that have not been run before. So, on the 25th Daylon will have a Gastric Emptying Study, on the 27th he will have an Endoscopy, and on the 29th he will have a sweat test to rule out Cystic Fibrosis. In the meantime, she has put him on 2 boxes of Boost a day.

Daylon had his Endocrinology appointment on Thursday and he is doing GREAT!! He was 34 7/8 inches and 29 pounds. His height may have been a little off because he was not cooperating well, but this puts him between the 1st and 3rd percentile for height and 25th percentile for weight. I asked our endo about his weight, because of the GI's concerns and he told me that we could give him the Boost on the days when "his attitude is bigger than he is and his halo turns into horns (when he refuses to eat) otherwise consider him boosted." We also asked how long Daylon will need the growth hormone shots and what would happen if we took him off of them now. He said that Daylon will be on the shots for another 10-12 years and that if we were to stop in the near future it would be like going from here to Chicago and stopping in Denver, on the right track but we have to keep going to reach our final destination. So it looks like we have years of this ahead of us. He did say that he doesn't think Daylon's other issues are related to the growth hormone axis deficiency.

On the 7th we did hear back on part of the genetic testing that he had done. His testing for RSS came back normal, which we knew would most likely be the case. Now, we are just waiting on the Microarray results. Hopefully we will get those soon.

Thankfully Auntie N. came back from Missoula with me, so she can watch the girls while Daylon and I are doing his testing this week. It will be a very busy week for us.

Thank you all for your support, it means the world to us!!!

The Waiting Game Begins Again.

Last week we had our genetics appointment. Not a whole lot to report yet, other than that Daylon is on the 5th percentile for both height and weight now, and his head circumference is in the 10th percentile.

There are some specific tests that they are running, most of which are too technical and involved to go into at this point. If the tests reveal a genetic issue, I'll try to explain that specific issue in a future blog.

They did say that it is possible that the neutropenia and short stature are not related at all and that he could just be growth hormone deficient. Granted not classic growth hormone deficiency, but growth hormone deficient on some level.

So, Daylon and I both had our blood drawn and now we get to sit and wait for 3-4 weeks for the results. Once the testing comes back we will decide where to go from here. It may involve more testing and it may not, but at least we are finally on the road to getting the answers that we need as to why Daylon is the way he is and can prepare for any obstacles that we may or may not face down the road.

At least we know for a fact that the growth hormone is helping.

Wonderful News from Cardiology!!

We had Daylon's cardiology appointment yesterday and all went great!! He does have a murmur, but it is an innocent murmur called a Still's Murmur. Nothing to concerning, two of my cousins have Still's Murmurs and they are doing fine!! The doctor also did an EKG and that was normal as well. So, now we don't have to go back to Cardiology and we can rest easy knowing that the murmur is nothing serious and his heart is fine!! Praise GOD!!!

Love to all!!

~Jean

Update from Daylon's Surgery & Well Child Appointment

Daylon had his surgery on the 19th for new tubes. It went extremely well!! No blood sugar issues, and came out of anesthesia smiling. Such a wonderful sight!! I did ask Dr. B about the breathing/snoring Daylon has been doing at night, and he said that adenoids can grow back and that may be the problem, so we will keep an eye on that.

On the 20th Daylon had his 3 year old well child visit. He was 26 pounds 2 ounces and 34.5 inches long!! He has made it onto the charts! His weight is right on the 3rd percentile, height is just below the 3rd percentile, and his head circumference is in the 10th percentile at 47cm. He looked in his ears and commented that they usually have blood clots around where the tubes are placed, especially the day after surgery, and he did not see any. He said that Dr. B did an amazing job!!

At our well child appointment, we found out that Daylon's murmur that was heard in March has changed. He commented that innocent murmurs are high pitched and the murmur he heard on the 20th was not at all what he was expecting to hear based on his notes from his last visit. He said that innocent murmurs don't change and he wants us to take Daylon to a cardiologist.

We will see Cardiology tomorrow morning. Hoping and praying for answers!!

Thank you all for your support.

~Jean

Update from our ENT Appt.

We had our appointment with the ENT on Friday.

Daylon definitely needs new tubes, so he is scheduled for surgery on May 19th. The plan is to use a different kind of tube this time, called a Touma T-Tube. They are shaped differently and should last longer. Apparently they work similar to a toggle bolt, anyway that's how he explained it to me.

I discussed my concerns about Daylon's blood sugars while fasting and he said that we would monitor it before and after surgery. I called his endocrinologist's office today to see what he wants us to do for the surgery. Daylon's blood sugars for his last surgery were 80-something pre-op and 201 post-op, so I want his take on what that means and what he wants us to do to prevent the high. Unfortunately when I called Dr. S' office today, he was out of the office and so was his nurse, so I have to call back tomorrow. The recommendations from Dr. H are that with any surgery for an SGA child to run D-10 IV, but when I tried to get them to do that for the last surgery they wouldn't because it was such a short surgery. My hope is that I can get the endocrinologist in my corner on this one and push for the IV.

Today we had Daylon's IEP meeting for preschool in the fall. We went over his testing results and the only area that he isn't low in is Motor Skills. He is -2.47 standard deviations from the standardized score in Communication, -1.47 in Adaptive, -1.40 in Personal-Social, and -1.33 in Cognitive, and +0.47 in Motor Skills. In order to qualify for Special Education programs, including preschool, he had to be -2 standard deviations in at least one area.

What do all these numbers mean? Essentially in Communication he is scoring at a 14 - 23 month old level, Adaptive is at a 21 month old level, Personal-Social he is scoring at a 22-28 month old level, Cognitive is at a 24-27 month level, and Motor Skills are at a 34-41 month old level. He was 35 months old at the time of testing so that gives you an idea of the amount of delay he has.