Waiting For Answers

[merjill]

I'm so glad to have found a place where I can talk about what my kids pooh looks like!

About 10 days ago, I brought my 9 yr old daughter in for her annual checkup.

She weighed 42.4 lbs - which is the size of the average 5 year old. She has always been small for her age. I breast fed exclusively for 6 months, after introducing solids, I continued to breastfeed until she was 11 months old. At age 2 she weighed 24.5 lbs. At age 4, she had grown 1/2 " but she still weighed only 24.5 lbs. She was referred to a pediatric endocrinologist - he did a celiac panel and she tested negative. She also tested negative for Turners syndrome, Human Growth Hormone deficiency, etc. The dr. diagnosed her with Constitutional Growth Delay. It turns out we have a family history of "late bloomers". He assured me that she was completely normal, within the normal range of variation for human growth - that her growth was delayed - but that she would continue to grow at a normal rate.

We went back to doc for followups every 6 months. She did start growing about 2" / year, but she remained very small. I was also very skinny as a child, but I just had a really fast metabolism. I ate constantly - but people always thought I was starving. My husbands family was very skinny too - so I wasn't worried about it. She is a very picky eater - and ate mostly carbs and very little meat. She does like dairy and fruits and vegetables.

She didn't really have alot of GI Symptoms. When she was in preschool, she did have alot of diarrhea - I remember her preschool teacher saying "There is just so much of it!" She was talking about the volume of pooh. I don't know - it was my first child - I didn't know what wasn't normal. But her pediatrician at the time said it was toddler's diarrhea and it was from the sugar in apple juice. Cutting back on the apple juice seemed to help.

She was a late talker/ late walker. Last year she was diagnosed with ADHD, she has extreme mood swings. She has always had low muscle tone. She has a peanut allergy, she has asthma. She has had eczema on her knees pretty much continuously for the past two years. This winter she has bleeding open sores on her lower back and butt. These were all auto-immune symptoms and I thought they were connected some how - but no doctor ever saw the connection.

I guess I just didn't see it because I was so close to her - seeing her every day, but I was looking at pictures at her from over the summer,and she really does look malnourished.

So at the annual checkup, the pediatrician prescribed blood tests, bone age studies, she referred her to the gastroenterologist, Pediatric Endocrinologist, nutritionist. I made all the appointments, but the first available appt isn't until March 1st.

So for the past 10 days, I've been googling gluten intolerance, etc. I looked at her pooh this morning and it was light brown and floating.

I have pretty much convinced myself that she has celiac or gluten intolerance w/o celiac. I know that she has to keep eating gluten for the tests, but I have been cutting way back on it at home - she is still eating it at school - and she gained a lb this week.

I just hate to keep giving her the gluten until March 1 - I feel like I'm giving her poison.

[kareng]

Did the Ped do the Celiac blood tests? Vitamin deficiency tests? Why not get those done now. the Pediatrician can order them. They can take 1-2 weeks to get back. Then you could have them in hand, positive or negative, to show the GI. Otherwise, he might send you for them & it will be another 2-4 weeks before your next appointment with him.

[merjill]

The Pediatrician ordered CMP, CRP, Vitamid-D, Iron Deficiency, CBC, and a few more. There were a total of 8. She already got the blood taken, but we haven't gotten the results yet. She didn't order the Celiac Panel, because she had already had it done a few years ago. Do you think we should redo it? Maybe we will just to the endoscopy?

[kareng]

Yes. They should do the Celiac panel again. Just because it wasn't positive, once, doesn't mean it's not now. It's like doing a strep test on a sore throat 2 years ago. It was negative. If she gets a sore throat today, does that test 2 years ago mean she will never get strep ? Of course not.

Doctors can be so frustrating. Even if it's negative, they might want to do a colonoscopy & endo to check for other things, too.