Daughter Starting Kindergarden In September Need Advice

[stanleymonkey]

Our daughter is starting kindergarden in September, and we are very nervous. My husband and I are both teachers, so even thoug people tell us it will be okay we know the reality when you have so many kids in a class.

Our main concern is a lack of diagnosis, just our experience.

Age around 26 months sent to gastro for chronic diarrhea losing lots of weight. Turns out she was horrifically constipated, the diarrhea was stuff leaking out around the blockage. Asked about celiac after many visits to hospital, being told she's okay it's just a bug. ( seriously, green water for poop for months and losing weight is just a tummy bug! No one else got sick!)

Put on peg for 3 months, no real change.

Blood work okay so told keep on suing peg.

Mhorrific behavior, thought it could be because of the new baby. Rash we were told was except that nothing would get rid of.

Finally gastro listened and agreed maybe gluten was an issue. As before all bloodwork was okay, but she has genes for celiac.

Age 3 finally see gastro at local kids hospital, who diagnosis her with reflux. Says he doesn't need to scope her to rule in/or put celiac. Just give her Zantac. Zantac only made her sleep.

Finally we decided to try gluten free out of desperation. 2 weeks later she was like a new child. Went back to gastro who apologized said he was obviously wrong. Said it was a shame she was off gluten as that meant he couldn't scope her, and given how she had been, to never give her gluten again, and that a gluten challenge was out of the question as it could kill her.

Fast forward to now....

How am I to get school to take me seriously with the no gluten issue, when all the doctors will write is MAY have a gluten sensitivity?

Gluten makes her I'll for at least a week, we are not talking sore tummy here either, think crying 22 hrs a day for dys on end, bloating, diarrhea, aggressive behavior, vocal tics, scratching her "excema" till she bleeds, fatigue for a few weeks.

If she misses too much school we are worried she might get held back a grade as she is already only 2 weeks before the cut off date, and she is a child who does not need to be kept back, she was assessed in a university infant study as having the cognitive age of a 6 yr old at age 3 yr 9 months!

How do we get the school to take us seriously?

How do we get them to understand the effect gluten has on her if no doctors will back us up besides our pediatrician ( who can't write a letter contradicting the gastro!)?

[tarnalberry]

Three thoughts:

1) go back to the GI and ask him to formalize the diagnosis and provide you with paperwork to give the school

2) private schooling

3) home schooling (depending on what state you're in)

[frieze]

if the gastro won't write "celiac", will he put his opinion that gluten would kill her on paper.....d%mn, that should be enough!

[mommida]

Teachers don't want to deal with vomit, behavior issues, and possible projectile vomit.  Someone with common sense would make sure your child avoids gluten to make their life easier. 

 

I am concerned that your child was never scoped to rule out other related to Celiac issues.  Zantac made your child sleep, but did it actually help in other ways?  Please keep a food journal to be on the lookout for other food intolerances.

 

Try to formalize medical note from doctor.  Will the doctor give a diagnoses with positve genetic test and positive reaction to the gluten free diet?

[stanleymonkey]

She has had a positive genetic test and grew 3 inches and put on 4 pounds in 3 months gluten free. Our original gastro wanted a scope to rule out or rule in celiac but because the gastro deptbat hospital say no, that's the end of everything, no diagnosis, no chance to find out what is really going on, which sucks as her dad has Crohns and it would be nice to know whether that is an issue or not

We have an allergist and a child nutritionist be ause she used to have allergies, milk and soy cause issues when taken in large quantities, but we tend to avoid them

[Aprilelayne]

Can her pediatrician not give the diagnosis?

We are under the care for my 24month old  with the gastro, but my pediatrician is fighting for me as well that if the gastro won't make the diagnosis, she will do it for school and daycare purposes.

 

You have more than enough evidence of gluten being a source of medical distress for your child, the gastro should give the official word and continue monitoring and testing in the future if he is waivering on the permanent diagnosis.