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OBXMom

Member Since 24 Mar 2008
Offline Last Active Apr 08 2010 07:02 AM
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#599061 Anyone With A Celiac/inattentive Add Child?

Posted by OBXMom on 16 March 2010 - 07:06 AM

Your daughter sounds like my daughter used to be, and I felt really sad for her as I read your post. We pulled out the stops to deal with my daughter's organization issues in middle school. I found a young counselor who had ADHD herself and she helped my daughter a lot. We also had meetings with all her teachers together, and they were very helpful. My daughter always tried really hard, and was constantly asking for a new binder or something that she was sure would help her get organized. But even with all her efforts, she was constantly missing out on things, like field trips because she forgot to bring home the permission slip.

Now in high school, you would never know that my daughter had any organizational difficulties. (Well, o.k., unless you open her closet.) She is a much happier person, understandably so, since now things aren't constantly going wrong for her. She is on medication, which I think was one factor in her improvement, but she is doing so well that the doctor thinks we can try going off of it this summer.

My suggestion to you is to keep trying things until your daughter is able to run her own show well. I have seen too many of our friends' extremely smart kids with organizational issues in middle school crash and burn in high school. Sometimes it is because they are self medicating and sometimes they are just sick of it all. Just because they can ace every test and keep up the grades while forgetting their homework regularly doesn't mean that it won't catch up to them. Some kids make it through high school only to fall apart in college. So it is good you are looking for answers now. I think it is easy for parents of really smart kids to ignore the problems, which you obviously aren't doing.

And about the celiac connection - I wonder if long term consumption of gluten in an individual having an autoimmune response to it causes some permanent brain changes. I also wonder if neural pathways that weren't developed at just the right stage can rebuild themselves over time, with help. It seems possible to me . . .
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#598787 Pros And Cons Of 504 For Elementary School Needed

Posted by OBXMom on 15 March 2010 - 07:45 AM

Did you make a formal request in writing for a 504 plan, and was a meeting held that determined your child is ineligible? According to federal law, an eligibility meeting must be held, and you must be notified when it is held, in response to any request for a 504 plan. Since celiac disease is not specifically listed under section 504, you may have to make your own case, but I think it would be very hard for any group of educators to deny that celiac disease has an impact on learning. All school systems interpret things differently, but they aren't allowed by law to say "we won't do a 504" without following the process.

That being said, it is my understanding that the plan will impact the individual student's learning environment, and not that of the whole class. So I do not think you will be able to develop a plan which says that none of the children can use food for learning activities. You can have precautions and alternatives in your child's plan, however. (But I am with you - teaching with food is bad on so many levels - my son's class only stopped when they got mice in the room.)

Here is a link I found helpful: http://americancelia...lies/at-school/, and for more general info: http://www.greatscho...gs?content=868.
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#596476 Reputation

Posted by OBXMom on 04 March 2010 - 08:49 AM

May I please have a bit more clarification on how "Reputation" works? First, does every number represent one vote on one post? Since you can only vote a post up or down, I am assuming "Neutral" means that you haven't reached some critical mass required to move to the next level. How many votes are required to leave "Neutral," and what are the next levels?

Perhaps this hasn't even been determined yet, since I haven't seen anyone who isn't neutral. I admit I would be unlikely to care about this if I wasn't the only person I have seen with a negative number, and the only one with a red bar under my name. My posts are pretty much entirely sharing my experiences. I have gained so much from others' experiences here - not just moral support but things which have propelled my son enormously on his path to good health, and I share in hopes of doing the same for others. So a negative vote doesn't strike me as a simple disagreement - how can you disagree with someone's experiences? And if you do disagree, isn't an explanation more helpful than a vote? Jestgar, thank you for the kind thought that someone just hit a wrong button. I'll hold that thought, just wish I could use it to erase the red bar.
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#596188 Reputation Levels

Posted by OBXMom on 03 March 2010 - 09:22 AM

I just noticed that sadly, I have a -1 reputation. Does that mean one person doesn't appreciate me, or does it mean one more person voted me down than voted me up? I admit my feelings are a little hurt here. . .I thought everyone liked me as much as I like them . . .
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#595947 More Than Physical?

Posted by OBXMom on 02 March 2010 - 07:32 AM

This is such a tough one - and we have definitely been here. The psychological effects of a chronic illness are undeniable. But I can't tell you how many times my son's symptoms ended up having a phsyiological basis when we thought it was all in his head. For example, his tummy always seemed to hurt more when he played his cello. We kept asking, "Are you sure you want to play?" until an x ray showed a huge amount of impacted stool right where his cello rests. After a miralax clean out, the cello pain went away.

The other problem is that the damage caused by an autoimmune response to gluten can cause lots of other issues. Healing can take a good while. I won't discourage you by telling you how long it took for my son, but we also had to explore allergic reactions to other foods besides gluten.

I can totally feel your pain about the difficulty going places with your son. My little guy was the most incredible homebody you have ever seen pre-diagnosis. He was fabulous at home and so whiny everywhere else that I got pitying looks wherever we went. I wanted to have a sweatshirt made up that said, "I'm really good at home." Recently he said to me, "Do you remember how I used to never want to go anywhere? It was because I was always felt so bad, and when you feel bad you just want to be home."

I hope your son feels better soon.
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#594306 Celiac Kids And Sports

Posted by OBXMom on 22 February 2010 - 07:39 AM

My 10 year old son is not recovering as well from his lacrosse practices as I think he should. Three days later he is still wiped out, physically and emotionally. It was the same with soccer in the Fall. At the beginning of the soccer season we were thrilled that he finally had the stamina to play a team sport, and sure that he'd be less fatigued by the end of the season, but it never got any better.

He loves to play, and is one of those kids who goes all out. Years of pain prior to his diagnosis have made him a tough cookie, and he doesn't complain a lot or use his fatigue as an excuse, but he is sore all the time and everything he does seems to take huge effort. I have been thinking about taking him to the doctor, but doctors don't seem to worry too much about fatigue. One doctor gave me an inhaler in the past "in case" he had exercise induced asthma. (He doesn't.) Like many celiac kids, he has had numerous CBCs, and I don't know what else we should check on.

Is this a normal kid, or normal celiac kid, response to strenuous exercise? I would like to think I am over reacting due to years of having to worry about his health. I just wish the little guy could get a break . . .
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#588435 Pros And Cons Of 504 For Elementary School Needed

Posted by OBXMom on 25 January 2010 - 06:55 AM

We do not have a 504 plan, mainly because my son's teachers have always been understanding and supportive. I was asked to write a letter about his diagnosis, and it is on file in the nurse's office. By the time my son was diagnosed at 7, he was cautious and a good self advocate as well. If my son was younger and if the teachers less supportive, I would not hesitate to go through the 504 process. As far as any negative connotations with the school, that would not bother me in the least. It is work for everyone involved, but important work. If I felt any negativity I would schedule a meeting with the principal and possibly the school superintendent to discuss it.
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