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Post by PaigesMom on May 20, 2005 17:18:05 GMT -5
Susan, Where are you We're waiting for the IEP update!!!
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Post by PaigesMom on May 20, 2005 17:19:22 GMT -5
Hey A. ~~~
How was your BDay?? Did you do anything special?
Debbie
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Post by PaigesMom on May 20, 2005 17:15:44 GMT -5
Oh GOSH, CC ~~ That breaks my heart. I hope everything turns out well for her and her family - and yours too, you must feel so sad.
Big HUGS
Debbie
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Post by PaigesMom on Jan 24, 2005 22:45:01 GMT -5
Yes. I kept getting flyers about it, but I got the registration form where it lists all of the break out sessions/times/choices, etc. Dont know if that's on the website as well. It's $25.00 parent price for the whole day - I've never been to a convention so I figure it's the next best thing. Paige sees Dr. Pipan regularily and some of the others regularily.
Let me know if you decide yes, maybe we can meet there somewhere since Sesame Place didn't work out - even though we'll go again in May.
Debbie
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Post by PaigesMom on Jan 24, 2005 17:50:46 GMT -5
Is anyone here going to the CHOP Trisomy 21 Symposium in March?
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Post by PaigesMom on May 22, 2005 8:28:28 GMT -5
WOW, I cant believe you're home so fast ;D
He must be a little trooper. So glad to hear it went well and wishing a speedy recovery.
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Post by PaigesMom on Jan 20, 2005 17:31:59 GMT -5
Stella, I'm not sure if this will help much, but I know a mom who has a now 14 year old and she got her period at around the age of 12. The same thing happened. She loved to swim and she is also in special olympics. The mom taught her how to use tampons. She said it was not easy and took about 6 months - the first two just helping her and the rest, monitoring her, inserting and changing them. After that she was fine.
I dont envy you - I dread this and I cant imagine helping my daughter insert tampons, but I guess it's something I'd better try and prepare myself for sooner than later.
Good luck!!
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Post by PaigesMom on Jan 20, 2005 17:37:00 GMT -5
I guess what I'm really saying is that when you have a diagnosis of ADHD and there is really a problem with the neurotransmitting then the GF diet is not likely to help, possibly make things worse (if a child is hyperactive when they feel bad) as when they feel better they may be more hyperactive.
In a Celiac who is not ADHD, there are behavorial issues directly related to the gluten allergy - minus the glutens in the diet, behavior gets better.
I hope I'm making sense. Again, this has only been my experience.
Debbie
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Post by PaigesMom on Jan 20, 2005 17:28:23 GMT -5
Paige is a diagnosed Celiac and a diagnosed ADHD. She is on a strict gluten free diet and also takes Adderall 10XR daily. I have seen a difference in behavior on the GF diet - it has gotten worse, we were hoping for better. The theory is that since she feels better, she's more hyperactive and impulsive, and at the laugh of a very prominent Developmental Pediatrician at a well renound childrens hospital, she said I was obviously 'having a break' from her true behavior while she was not GF. The only alternative is to increase her meds, which I'm not planning to do at this moment. I know ALOT of people on GF diets for children without ADHD and they believe behavior has gotten extremely better on the diet. I really think the neurotransmitting problem with ADHD is a separate issue even for Celiacs. Debbie
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Post by PaigesMom on Jan 14, 2005 17:10:12 GMT -5
Meghans-Mom,
I saw your post regarding oral motor stimulation and wanted to ask you a question or two. Paige is going thru another HORRIBLE time of teeth grinding, for whatever reason, she comes and goes with this and it is usually sensory related. We have done oral motor stim with the face massager (battery operated) and also Nuk brushes and 'tapping' around her mouth, cheekbones, etc. I think what you describe as 'scratching' sound like something that might work for Paige - she LOVES sensory input and seeks it regularily. So I guess I'm asking if you could explain what you do a little more in depth. Also the electric toothbrush - since she's 4 she can probably do it herself and I could offer this to her when she grinds - is there a specific child one, or a specific type of brush that you use on the end - I'm assuming you dont use toothpaste, you just let her use it in her mouth when she needs it. I'm excited for your response, I've been going thru some 'times' with her recently (mostly behavior and medical) and am looking for NEW things that might help her, and my sanity.
Staci - have you used the toothbrush or scrathcing techniques? If so, how did they work for you? I am going to try after Meghans Mom responds and I will let you know if it impacts the grinding which is constant and loud. The therapists and teacher say it is sensory, the dentist says not to worry about it and so does the pediatrician, but it needs to stop. Thanks for asking about the Celiac diet. She is still gluten free, but I have not seen a major behavior or GI change in her. They think that they might have misdiagnosed her and that she may have Hirschprungs - which is what I have really thought since birth. She has NEVER gone to the bathroom on her own without some sort of intervention from me or laxatives and it is getting very old, very fast. So she has some more testing to go thru.
Deb
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Post by PaigesMom on May 22, 2004 9:04:18 GMT -5
Haven't read this entire thread (only page 12!) but MR CLEAN MAGIC SPONGES are truly amazing.
They clean everything - ink from surfaces, grout, my refrigerator handle, shoes, anything you think you will never get clean, this will do it.
Have no clue as to how they work, but whoever thought this one up was a genius!!
Debbie
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Post by PaigesMom on Nov 19, 2003 15:10:58 GMT -5
Thanks Tricia. This was really cool....I cant believe I have no neighbors near Philadelphia, PA!! As for services, we only qualify for secondary medical assistance for Paige - no parental income considered - so the only benefit is that we have no copays for prescriptions or dr.s visits. Debbie
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Post by PaigesMom on May 12, 2005 17:24:13 GMT -5
Thanks Ladies, I am excited too, just praying we dont regress on this. I've heard it takes a year to potty train children with DS, so the fact that all of a sudden she seems to 'get it' makes me leary that it is not actually the case.
Jesse - thanks so much for that! We are still having the same "issue" with her, same laxative protocol, same dr.s telling me there is nothing wrong with her physically. It is horrible. So far she has just peed on the potty, but next time we do the enema, I surely am going to sit her on the toilet so she can go there. I just wish they would figure it out.
Debbie
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Post by PaigesMom on May 12, 2005 14:43:38 GMT -5
I am soooooooooooooooooooooo proud of my "little bug" (sorry CBean, had to use it) --- She is going on the POTTY. Three weeks before her FIFTH birthday - and she's doing pretty well - about 80% and we really just started last Friday (Mothers Day Weekend). I am beaming. Send tons of prayer wishes that this is NOT a fluke and she is on her way to being an even bigger girl - growing so fast
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Post by PaigesMom on Apr 25, 2005 13:30:12 GMT -5
We are going, Pat IS going and CC is going. I PM'd Pat my cell # . Let me know if you want it PM'd to you too!
Debbie
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