We had an appointment with an ENT on Wednesday and may have found the best doc ever. Our 26 month old was sent to see this doc due to snoring, suspicions of apnea, and regression in eating. We were talking about her other health issues and mentioned she was gluten free because she had issues when she ate it such as constipation, rashes, screaming, and anemia. Told him our ped said to assume it was celiac, and he said if our ped ( who is also his kids ped!) said celiac it's celiac! Finally an official diagnosis for 1 of my little monkeys.
On the negative side he suspects EE, which I knew more about than the resident who was with him as our eldest was supposed to be scoped for it a 2 as well. We were just expecting to be told she need her tonsils and adenoids out. They also suspect central sleep apnea.
Anyone have a child diagnosed with EE this young?
Does anyone have a relative like this?
We live with my husbands parents. His brother and wife come round for dinner at least once a week and NEVER bring anything, and even take the leftovers for THEIR kid for daycare. They always ask us to take things to their house though.
Now they have decided to have an Easter egg hunt at their house. They want everyone to bring food, AND eggs!
Mmmmm think I might be too busy to take the kids round!
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!)?