Update on us :)

[2boyzmama]

We've been out of town for a while, several trips out of state to see family for various functions (a wedding, a graduation, a party, etc)

Connor had his first trips away from me, and did well! First he went camping over Memorial Day weekend with my mom (who is the only other person that I feel 100% comfortable leaving him with, she has medical and psychological background, knows some ASL, and I know can handle any illness or injury that might pop up) He had a blast!! No issues at all with camping, or with being away from mommy.

Then my husband took the two older boys out of town for a weekend two weeks later, and again Connor did fine! No issues with being away from mommy.

Then we all went out of town together for a wedding, and were going to be back again two weeks later for a graduation, so my mom offered to keep Ian and Connor for the two weeks between trips. I was kind of hesitant to let Connor be gone that long, but mom convinced me He did great!!! Ate well, slept well, played and played and played (her house is out in the country, pool, trampoline, horses, bikes, woods, etc...heaven for little boys!). When I got there, he was happy as could be, extremely dirty , and very glad to see me. After all those separations, the first thing he did was ask to nurse (I was worried he'd wean, but he didn't!) and promptly fall asleep in my lap.

Unfortunately he got an ear infection the day we were driving back home, but thankfully his wonderful ENT called in a prescription for him out of state and I think we caught it early enough that it isn't too bad.

SO...that's Connor

Ian was with Connor all this time, and was the perfect big brother. Ian is proud of his role as interpreter for Connor, and did a good job of helping people understand Connor. Ian also had a blast with his various cousins, aunts, and uncles. He lived in the swimming pool (even learned how to use a snorkel!). He and Connor both stuck to their food restrictions really well.

Ian had his appt with Gastroenterology this morning. The dr basically said that he sees no reason to test him for Celiac, because regardless of the results, we have seen such a good response to removing gluten from his diet, that we wouldn't put him back on gluten if the test is negative. And in order to do the biopsy, we'd have to put him back on gluten for several months. We're not willing to do that. So he said to give it a few years, and maybe when Ian is older, having sleepovers, active in school activities, etc then maybe we can consider doing a gluten challenge and testing then. That also gives technology a chance to catch up, and maybe there will be an accurate blood test by then and we can avoid a biopsy. Makes perfect sense to me!

SO...that's our update!!! Gavin has no real update, he's just learning how to scoot around some, exploring foods, and trying out new sounds.

[AndVeeGeeMakes3]

Yay B-Boys!!!!!!!!! What an awesome sounding summer.

[BookGoddess]

That's wonderful! Way to go, Connor.

Not to second guess the GI doctor's determination, but wouldn't Ian already have antibodies to the gluten in his system. It takes several months to get those down. But anyway, I'm happy things are going well there.

[2boyzmama]

Originally Posted by BookGoddess

That's wonderful! Way to go, Connor.

Not to second guess the GI doctor's determination, but wouldn't Ian already have antibodies to the gluten in his system. It takes several months to get those down. But anyway, I'm happy things are going well there.

Well, he's been off gluten since January, so it might not show a positive on the blood test or biopsy.

I just wish that the drs had listened to me/taken me seriously three years ago. I took him to the pediatrician when he was 2 and said "please test him for food allergies, this behavior is not normal" and the ped handed me a pamphlet on discipline. I left that appt crying (and never went back to that ped). Then, at his 3 year old well kid check, I brought it up again, and that dr did at least order a stool analysis (because of his chronic loose stools) but that didn't show anything so he said "it's just a developmental stage" and that preschool would be good for him.

It wasn't until he was 4.5 years old that I had had enough and sought out my own answers and discovered gluten intolerance can cause severe behaviors in some kids (along with reflux, loose stools, both of which he has had his whole life). So because I decided to cut gluten myself, now we can't test him. Nice little catch 22, huh?

It's okay. I don't know if he has Celiac or if he just has gluten intolerance. Either way, he's gluten-free! It's just that if we knew it was real Celiac, we'd be a gluten-free household then, I'd be much more strict about the cross contamination and trace gluten.

[Wild Lupine]

Thanks for the update- glad for you that it is such a good one.

[momtoalexsarah]

Originally Posted by 2boyzmama

Well, he's been off gluten since January, so it might not show a positive on the blood test or biopsy.

I just wish that the drs had listened to me/taken me seriously three years ago. I took him to the pediatrician when he was 2 and said "please test him for food allergies, this behavior is not normal" and the ped handed me a pamphlet on discipline. I left that appt crying (and never went back to that ped). Then, at his 3 year old well kid check, I brought it up again, and that dr did at least order a stool analysis (because of his chronic loose stools) but that didn't show anything so he said "it's just a developmental stage" and that preschool would be good for him.

It wasn't until he was 4.5 years old that I had had enough and sought out my own answers and discovered gluten intolerance can cause severe behaviors in some kids (along with reflux, loose stools, both of which he has had his whole life). So because I decided to cut gluten myself, now we can't test him. Nice little catch 22, huh?

It's okay. I don't know if he has Celiac or if he just has gluten intolerance. Either way, he's gluten-free! It's just that if we knew it was real Celiac, we'd be a gluten-free household then, I'd be much more strict about the cross contamination and trace gluten.

This is the same catch 22 that we had with Megan - she had already been off gluten for 2 months when they did the test (and she was under 2 at the time so the test is unrelible at best - blood test) but her reaction to the removal of wheat was dramatic and she is doing so well now. Like you I would love to know if it is true celiac, then I would be more carefull - with cross and trace ( she eats oatmeal - which can have cross/trace but dosn't react so i let her have it) To remove cross and trace is far more limiting (there are alot less "off the shelf" kind of foods - ie corn flakes, corn pops(she likes these as a treat, when the others get a cookie or cake)
Rice crispies are another one that is OK, Cherrios here in Canada are not - my understanding is that in the US they do not have wheat flour, here they do (but I could be wrong).

Glad to hear that Connor is doing well, I'm assuming that they can't find a reason for the ear infections. Just a thought because I had Megan in with one 2 weeks ago, but if he is swimming are his ear plugs tight do they need to fit him for a new set (Megans are cracked on the one and let water in the right side - I didn't know till I took a close look one night at bath time)

[2boyzmama]

I'm going to ask his ENT again. He says that clean water is fine, no ear plugs needed. He said the tubes should allow the fluid to drain if it does get in there. Connor wasn't in the pool much, it was just too cold, and he wasn't under the water at all, so I don't think it's just the water. But who knows? His tubes are functioning, his canals have grown well (still small though) and he isn't actively refluxing (gastric or nasopharyngeal). So I'm a little surprised that he's still getting infections. He's on vit c, vit d, omegas; we've tried chiro. ???

And yes to the trace gluten/cross contamination. We let Ian have oats and corn. Cheerios here have wheat flour, so no to those. Kix are safe though!

[momtoalexsarah]

We where told any water can be an issue - because it washes into the ear and can carry bacteria from the surrounding skin/ hair of the head ect. My first thought would to be try a set of good ear plugs for 6 months and see if he has less EI's. The best ones are the molded ones made to fit his ears. Since you had molds done for his FM system they may be able to use the same mold to make a set of swim plugs. We use then for swimming and bathing - Megans are hot pink and lavender, she thinks they are cool. Your insurance should cover at least part of the cost - I think that we had to get a persciption from the ENT and they covered 1/2 (about $50) but if it prevents even 1 ear infection it's worth it!