I Am Going Out Of My Mind....

[Guest tracey and emma]

Hi every one i am so sorry i only pop in and out to ask questions, as i really don´t feel i know enough to post. So i hope you do not mind again.

Emma is gluten free 100% to the best of my knowledge. she weights 9.5Kg at 3yrs 3mths old (Not great)

we stopped feeding her by tube 3-4 mths ago for the diarrhea to start again really badly. the more she ate the more it flooded out of her. Even though gluten free.

we started 2 mths ago (there abouts) with Imodium and it turned out to be fantastic and she was on kindergarten holidays her weight turned around and went up to 10.2kg

2 1/2 weeks ago the Imodium stopped working not that it really stopped the diarrhea before, the difference was that she ended up an a 7-6 day cycle with the diarrhea and instead of diarrhea and then not eating for 2 days she did not seem to get ill with it, and continued to eat.

now that cycle has changed to every 2-3 days they went back to kindergarten 4 weeks ago, so there was 1 1/2 weeks were she was fine, but could it be that she is sitting at a table with other kids with gluten, even though she does not eat it. her celiacs if it is that is very mild she had an entrapatheal enteropathy found during biopsies and it was really small and not thing else.

any ideas before i go blazing in the the kindergarten causing problems. i am so worried as her weight is plummeting in the wrong direction

thanks again

tracey

[eKatherine]

Hi every one i am so sorry i only pop in and out to ask questions, as i really don´t feel i know enough to post. So i hope you do not mind again.

Emma is gluten free 100% to the best of my knowledge. she weights 9.5Kg at 3yrs 3mths old (Not great)

we stopped feeding her by tube 3-4 mths ago for the diarrhea to start again really badly. the more she ate the more it flooded out of her. Even though gluten free.

we started 2 mths ago (there abouts) with Imodium and it turned out to be fantastic and she was on kindergarten holidays her weight turned around and went up to 10.2kg

2 1/2 weeks ago the Imodium stopped working not that it really stopped the diarrhea before, the difference was that she ended up an a 7-6 day cycle with the diarrhea and instead of diarrhea and then not eating for 2 days she did not seem to get ill with it, and continued to eat.

now that cycle has changed to every 2-3 days they went back to kindergarten 4 weeks ago, so there was 1 1/2 weeks were she was fine, but could it be that she is sitting at a table with other kids with gluten, even though she does not eat it. her celiacs if it is that is very mild she had an entrapatheal enteropathy found during biopsies and it was really small and not thing else.

any ideas before i go blazing in the the kindergarten causing problems. i am so worried as her weight is plummeting in the wrong direction

thanks again

tracey

It's quite possible she is getting cross contamination every day at school. I have worked in kindergarden classes, and it's hard to imagine any class that contains kids eating gluten and using regular supplies that would be safe for a celiac kid.

I don't know about where you are, but here they will make a special class for a child who is deathly allergic to peanuts and cannot be exposed to them. I could demand such a setup, but me, I might just keep my child at home and provide her with instruction at home, which is an option for us here. If it is necessary for you to do something extreme to keep your child healthy, then you will have to do whatever you have to do.

What type of immodium are you using? The liquid contains gluten.

[Ursa Major]

Tracey, I agree with Katherine, it might be best to keep Emma at home. Children that age won't understand what it means to contaminate another kid with celiac disease. They touch everything and everybody, hug and even possibly kiss each other. And Emma herself probably won't be careful enough herself, she is too little for that. I don't think Kindergarten is a safe place for her at this point, especially with her health issues.

Also, I am sure you used liquid Immodium, which eventually would make things worse, as it does contain gluten.

I wished I had more encouraging advice to give. I hope Emma will start gaining again, and that you figure out what to do.

[eKatherine]

Tracey, I agree with Katherine, it might be best to keep Emma at home. Children that age won't understand what it means to contaminate another kid with celiac disease. They touch everything and everybody, hug and even possibly kiss each other.

Even worse, at least in the classrooms I have been in, they are constantly eating cookies, crackers, and other gluten items in the classroom and spreading crumbs all over the tables, rugs, chairs, themselves, and each other.

[shayesmom]

Hi every one i am so sorry i only pop in and out to ask questions, as i really don´t feel i know enough to post. So i hope you do not mind again.

Emma is gluten free 100% to the best of my knowledge. she weights 9.5Kg at 3yrs 3mths old (Not great)

we stopped feeding her by tube 3-4 mths ago for the diarrhea to start again really badly. the more she ate the more it flooded out of her. Even though gluten free.

we started 2 mths ago (there abouts) with Imodium and it turned out to be fantastic and she was on kindergarten holidays her weight turned around and went up to 10.2kg

2 1/2 weeks ago the Imodium stopped working not that it really stopped the diarrhea before, the difference was that she ended up an a 7-6 day cycle with the diarrhea and instead of diarrhea and then not eating for 2 days she did not seem to get ill with it, and continued to eat.

now that cycle has changed to every 2-3 days they went back to kindergarten 4 weeks ago, so there was 1 1/2 weeks were she was fine, but could it be that she is sitting at a table with other kids with gluten, even though she does not eat it. her celiacs if it is that is very mild she had an entrapatheal enteropathy found during biopsies and it was really small and not thing else.

any ideas before i go blazing in the the kindergarten causing problems. i am so worried as her weight is plummeting in the wrong direction

thanks again

tracey

We are dealing with issues of cross contamination at school as well. It has taken us a month to finally get it under control. The issues seem to by multiple. The first being that the soap in the school has both gluten and soy in it. I supplied soap for my dd but ended up buying soap for the others in her class as well to prevent CC. The second issue was one of trace exposures to another allergen...dairy. The teacher would sometimes open another kid's snack and then give my dd hers. Hence, cross-contaminating her food. I spoke to the teacher after class one day and explained to her that I didn't believe that she was deliberately exposing dd to any allergens, but that CC issues were very serious with dd and had to be looked into a bit further. I am at least fortunate in the fact that with my dd, there are certain foods which consistently produce the same result. So I often KNOW what the allergen exposure was and it's a bit easier to backtrack.

Another thing that you might want to consider is that your dd may have another allergy/intolerance going on. Many celiacs are also sensitive to dairy, soy and sometimes eggs. So if the diarrhea persists with a 100% gluten-free diet, you may want to pull those other allergens out for about a week to see if that helps. Or, if your dd had any other allergies when she was younger that she supposedly "outgrew", start with taking those out first. Perhaps I'm a skeptic, but I don't have a lot of confidence in the accuracy of allergy tests. I've found an elimination diet to be much more helpful and accurate when it comes to getting to the source of these problems. JMO.

Good luck to both of you! I hope that you find some answers and that the info on Immodium containing gluten helps straighten this thing out.

[TCA]

From the pattern it does sound highly suspicious of cc as school. could you take her out for a couple weeks to see if she improves again? I had never been a big advocate of home schooling, but am seriously considering it now that my son has celiac. I just don't know how to keep the gluten out of his diet otherwise. We may give school a try and see if it works, but I am doubtful. I hope you get to the bottom of all of this soon and Emma is well and healthy!

[Guest tracey and emma]

i was given the Imodium by the hospital, she does not have the syrup she has

Imodium lingual

they dissolve under her tongue any ideas is these contain gluten???

i am trying to check now. thanks everone

tracey

[mommida]

You might consider private school. A religious school could provide scholarships, and not just for financial reasons. A smaller class size and very caring teachers can make a perfect environment for your child with celiac disease and the other allergies/intolerances.

Home schoolers are joining together to hire tutors and extra curricular activities. Check out what resources might be in your area.

I think going into the classroom and observing will help figure out what is causing the problem.

L.

[skipper30]

This is part of the reason that we homeschool our little ones...but I may be mistaken, but I do not think that homeschooling is legal in Germany. (Thanks to Hitler)

I hope that you will be able to find a sympathetic ear at the school!! Can you push the school any for more help in this area...would they allow you to take her out for health reasons and homeschool?

[Guest tracey and emma]

This is part of the reason that we home school our little ones...but I may be mistaken, but I do not think that homeschooling is legal in Germany. (Thanks to Hitler)

I hope that you will be able to find a sympathetic ear at the school!! Can you push the school any for more help in this area...would they allow you to take her out for health reasons and homeschool?

she is only 3 at the moment and school age is 6-7 years old so at the moment she is at kindergarten, which is like pre-school i don´t have to send her, till she is 6-7 yrs. I think??

but i am a nursery nurse and feel she should have that experience, especially with other kids her own age to play with during the day. It is so hard to know what to do she loves it which is why it is such a shame to stop it. Then on the other hand i don´t want her ill either. Think i am going to have to put my nursery managers head back on...... but been a few years since i wore that one . They need to change there aproach to how they do things, i had kids with peanut allergies in the nursery and that is life threating with in minutes. she could sit seperate in the first instance or i could go in at snack time and sit with her or take her to another room to have her snack or home. then take her back once it is all cleared away 1/2 hr later.

at the moment they don´t sweep and clear the floor untill the end of the day they will have to clear and clean straight after the snack time. ( think they should any way!!) there has to be away round it........

do you think any of those would work and be enough??

[Guest nini]

I think they need to confine any foodstuffs to the tables, not allow it in centers, or on rugs or around the classroom. Clean tables both before and after snacks and have all kids wash hands... This was the policy in my daughter's preschool class and it worked well... sure it may mean more work for the teacher, but really they should be doing that anyway.

[hannahsue01]

I pesonally agree that a child needs the social experience that school offers. I myself am a home child care provider but still chose to send our daughter to preschool just for that reason. My step-mom is an elementary school teacher and she says that all the kids with peanut allergies eat in teachers lunch room when peanut butter is served. You could suggest this so that she could eat without as much risk. They should clean up the floors when done eating. Maybe you could look for a school that eats somewhere other than where they play and learn. And then it is important that they all wash there hands when they are done.

[Guest tracey and emma]

hi thanks i agree,

i have a meeting booked to discuss it with the head teacher, next week. I know they won´t like it!!!! but that's tough.

I have looked at other kindergartens and i have one huge problem, and that is my son is in the same kindergarten for this year. so 2 kids in the same place and both require picking up at 12pm.

But this applies to every kindergarten around here and the next nearest one is 15minute drive away, so i can not be in to places at once.

We only moved here last year and my son has just settled, and is going to school next year with the children he is with now. I would only move him because of emma if there was absolutely no way to make this work.

what a head ache

tracey

[Guest nini]

I'm confident you can make it work... the thing is, they are in the business of caring for children and need to make that environment as safe as possible for ALL children... make that perfectly clear to them. (In a kind way of course!) I don't think you should move her, give them a chance to make it right. They may surprise you.

[Nic]

It seems to me that the teachers just need to be more educated on Celiac and once they get the hang of it, hopefully everything will work out fine. Think of how long it has taken us as parents to really get the hang of it. I am a teacher and if I knew a child in my class had a medical problem I would do everything I needed to in order to keep that child safe. But mistakes might happen, just as they have here in my home with my own Celiac son. I would suggest trying to educate them as much as possible on the needs of a Celiac and then give it a little more time. If there is still a problem after a while then you may concider another school. As a teacher and as a mom I also feel that the socialization part of school is very important.

Nicole