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My First Post- About My Son


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26 replies to this topic

#16 Sharon C.

 
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Posted 29 September 2004 - 04:52 PM

I also feel resentment at the years that went by while the doctors told me he was fine. I remember he was about three when I first became concerned with how much thinner he was than other children. He will be 8 in November, and has only just recently gotten attention from a doctor. And I have to WAIT now until October 5th to see the gastro. I feel like they said, "We just did a test and discovered your child is starving. Do you think you can let him starve another few weeks until we can get him in to see a gastro?" Just venting.
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#17 jsib

 
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Posted 29 September 2004 - 06:21 PM

o.k lost my post. trying again... Not offering medical advice. even though my son's blood test were only a little elevated I told my Dr. I was going to try this gluten-free diet and see how he does. He is so much better not just physically but emotionally/behavior too. Doing a lot of reading so I can talk to the Dr. and ask good questions. www.clanthompson.com has good food lists. There are also some really good vitamins (Gluten-free) at healthfood stores. I am working on patience as I want him to be all better now.
I can as a healthcare professional recommend the Metagenics ULTRA CARE FOR KIDS. Its a medical food shake with lots of nutrients. WWW.metagenics.com you can locate a practioner there.
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#18 Boojca

 
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Posted 29 September 2004 - 06:21 PM

JSIB...remember, Celiac is not an allergy, so your child could very well not have any allergies (including wheat) and still have Celiac.

I would suggest to your Pedi. GI that they go to the NASPGHAN.org and look up Celiac Disease. This is the website for Pedi. GI's and they will find all they need to know.

The good news, for both of you, is that children tend to respond extremely quickly to the gluten-free diet. They may not instantly gain weight, or grow, but you will see an amazing change in their personalities...whether you think there's something different in their personality or not trust me, you'll see a difference. I had no idea my son wasn't acting like himself until he went gluten-free....THEN I discovered what having a 2 year old REALLY means!

Best of luck!!
Bridget
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#19 jsib

 
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Posted 29 September 2004 - 06:32 PM

Thanks for your reply. My son has had all the allergy tests and He is very allergic to quite a few things on the delayed rast tests. wheat was the lowest. My pedi. is clueless but we have a great allergist we found this summer.
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#20 mat4mel

 
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Posted 30 September 2004 - 05:56 AM

To the OP-- I totally know how you feel.. My 2 1/2 yr old was having horrible bowel movements and not gaining weight well (she is still small at 23 lbs) and in April, the GI dr appt was scheduled for July!! I was thinking the same thing.. shouldn't this be an emergency? Argh!

Your story rang a bell with me, because my husband AND his brother, as children, were sent to an endocrinologist because of their small size (my husband was measuring 2 years behind what he should have).. back then they didn't test for Celiac. I am still in the figuring-out stage with my family. My 7 year old son does not have GI symptoms but is very small for his age. Then my 2 1/2 yr old had obvious GI symptoms with an elevated IgG and IgA.

Mel
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#21 mdixon

 
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Posted 30 September 2004 - 07:13 PM

Hi Sharon
I'm sorry for all you have been through.....I can relate. My family always critisized my daughter for being thin and asked do you feed her..YUCK. My peditrician did more blood tests. I am so thankful that he took the time and had the insight. My daughter is 12 and has made great strides in 5 months. Don't look back ..look forward. Kids are unbelievable. My daughter is cool calm and collected. She is doing awesome and has a clue. Your son will too. Kids are amazing wait and see. Good luck!!!! :D
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#22 ryebaby0

 
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Posted 01 October 2004 - 03:53 PM

Thanks to everyone who's replied so far. It's important that some things remain the same for my son.

My son was dx almost a year ago, and only after several months of illness followed by 3 months in the hospital. It can be so scary at first, and I can't believe that we've arrived at a place where we do gluten-free as naturally as can be. You will get there too.

The "some things remain the same" can be a big issue for kids. Two things we did that helped us --- I had P make a list of 4 things he didn't want to see us eat yet -- (he was on a Gluten-free Casein-free, soy free, egg free, diet for about 6 weeks). It gave him some control, and showed our empathy for his grieving.

Next he made a list of his favorite foods that were not gluten-free. Over the months that followed, as he was allowed to expand his diet, we worked on finding acceptable gluten-free substitutes for them. It was a great learning experience, we had fun with the liberty of "cook and throw it out" for dud recipes, and we could see there were, in fact, lots of choices out there.

If your son would like, he can email us and talk to my son. Good luck, and when you are done with the grief stage, try to think of it as an adventure~

Joanna
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#23 Sharon C.

 
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Posted 02 October 2004 - 08:22 PM

Wow, Joanna, thank you. That's what I'm going through right now- the grief stage. I am imaging my son and how his life will be from now on, and missing the simplicity of the old life and how he was able to partake in the foods that other children do on trips and for parties. I've been feeling down and out, finding myself teary-eyed as I drive, just "in a slump". How the holiday parties at school are goint to be painful for him instead of fun. I will try to make things that he will be able to have. He already puts up with a peanut allergy.

October 5th he goes for his appointment with the gastro. I've been depressed. Thanks for your message. I'm sure he may want to email your son. Thanks.

Sharon
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#24 jsib

 
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Posted 03 October 2004 - 05:15 AM

I went with my son on his preschool fieldtrip to go apple picking. Lots of fun. The afterwards they helped make a scarecrow. I asked what they were using.Got a funny look. and was told "just grass" then afer my son was covered his teacher said it might be wild rye or others. It was o.k. The teachers did not know about the scarecrow making until we got there-We left early as they brought out apple donuts... My son had fun and the donuts missed were only a small part of the expierience. My son's teachers have been very supportive and before my son got to school a few days after his dx had made the class room gluten-free,. Ordered gluten -free playdoh and put a sign on the door that all must wash their hands when entering the classroom.
Sometimes I forget to breathe and forget it is more stress on my son because even with a smile on my face he picks up my worry.
But you know WITHOUT all that processed food our kids will end up healthier kids and as adults.
For yummy cookies gluten-free,sf,nutf,df try www.enjoylifefoods.com The chocolate cookies are really good. As a project we are going to expieriment with making cookies and cakes we have three months before his birthday to come up with something good.
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#25 Sharon C.

 
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Posted 03 October 2004 - 07:13 AM

That's the only thing I feel good about, that they will be healthier without that stuff. It's hard for him because he's already 8, already has his "favorite" foods, and I feel if this had happened in preschool it would have been easier to transition him. Even things like ordering a pizza will be something he can't share when company is over and someone says, "Hey, lets order a pizza."

He has been able to eat these foods for years, and now he suddenly can't. He is so much more "aware" than if he were 2 or 3. As your child gets older, this intolerence will become more of an issue, especially in a mainstream classroom where children are bringing in stuff for holiday parties and birthdays. My son's school gave me a hard enough time with the peanut allergy, and there's no way they are going to make the lunchroom gluten free, or the holiday parties gluten free, on account of my child. I found with the peanut allergy, it was so much easier to deal with in the younger years, and you lose control the older and older they get. I go to all the holiday parties so I can read ingredients and place things on my son's plate that he otherwise couldn't have because the school won't be responsible for giving him ANYTHING. They expect him to sit there with nothing on his plate while the rest of the kids without issues eat in front of him. They don't want to be sued if a teacher puts something on his plate and he's allergic. So I go to every party. That was easy with peanut- not so with gluten.

It was easy to transition my son with the peanut, because he was 2 when we found out. He was just raised avoiding peanut. But he's 8 now, and this will be much harder on him. I can try to be positive about it, which I've been, but this news was bad news for him, not good news. How would you feel if your house burned down and people had no empathy? Just happy smiles and saying, "Gee, now you can get all new stuff." Wouldn't you want your old stuff? Wouldn't you be annoyed that people were acting like nothing bad has happened to you and offering no compassion? I think Rye-baby hit the nail on the head when she mentioned the grief stage. There definitely is one, especially when dealing with an older child. I cried just reading her post- finally someone put words to what I was going through. I didn't even realize it was a grief stage until someone pointed it out.
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#26 ryebaby0

 
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Posted 03 October 2004 - 07:30 AM

My son always loved oyster crackers -- lived on them. The first months out of the hospital, I couldn't even be in the same aisle in the grocery store as those crackers. When I eventually did, I cried like a lunatic, right there in the store. And it felt good.
The school is legally obligated to accomodate your son. You will find, however, that is simply easier to send his food. But you aren't ready to be dealing with all this right now. I know it is so overwhelming, and depressing to think of all the stuff he's missing. To feel like you are going to "poison" him by accident, or someone else might. But believe me, you are blessed that he isn't suffering from an incurable, untreatable, degenerative illness, or one that requires dangerous medicine or therapy. I kept telling myself that over and over.
There are still lots of things he CAN eat. And what he eats is only a very small part of who he is. We try to tell our son "well, this sucks, but it's what we got, so we aren't going to let it ruin our lives". I learned to make gluten-free pizza. I learned to think creatively. I learned to never apologize for not letting him eat things, and I learned that we can do whatever we want as long as we figure out a new way to do it. (I do so miss spontaneous trips!) I learned to order MCd burgers without the bun (why do they call it a muffin?)!!! YOU WILL GET THERE!
Hang in there, you are doing fine so far. When you are ready, try Miss Roben's ---a multiple-allergy vendor on the web at www.missrobens.com . Some of our new favorite foods come from there.

Joanna
mom to a son with: celiac, egg allergy, and autoimmune enteropathy: rare disease where his body tries to reject his small intestine. Lost 25 pounds in 4 months; weighed 48 pounds at 10 yrs/hospital admission for 7 weeks, recovery for 4 months --- weighs 72 pounds and DOING GREAT!
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#27 jsib

 
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Posted 03 October 2004 - 08:49 AM

The gluten free pantry has a pretty good pizza crust I bought a seperate crust cutter for it. I use it as bread. Tastes pretty good crunchy from the oven.
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