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So many questions

 
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nanamom



Joined: 10 Oct 2006
Posts: 10

PostPosted: Tue Oct 10, 2006 11:11 am    Post subject: So many questions Reply with quote

Hello, My name is Melissa and my son Nason just got the diagnoses of MWS on thursday September 28, 2006. We have been fighting with seizures and developmental delays for years now. They finally tell us that he has this but there is not much info out there about MWS. Does anyone know of a good place to go to find info. I live the Illinois in the US. I have to figure something out. My poor 9 1/2 year old son takes 14 pills a day and nothing is helping with his seizures or his behavorial problems. Can someone please help????

Melissa// mother to Nason 9 1/2 yrs old & Sarah 2 yrs old (healthy as a horse)
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Deby



Joined: 07 Dec 2005
Posts: 5

PostPosted: Tue Oct 10, 2006 2:18 pm    Post subject: Reply with quote

Hello Melissa
We belong to a MWS Email Support Group that can be a useful place to get information from other families in the same situation. If you would like more information send us an email.
Deby
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rmsump



Joined: 10 Oct 2006
Posts: 1

PostPosted: Tue Oct 10, 2006 4:16 pm    Post subject: Reply with quote

Hello Melissa,

Where do you live in Illinois? I have a really good friend who lives in Southern Illinois who has been through everything with my family and Caty. In fact she has become a lawyer to advocate for kids like Caty because of our experiences. Perhaps she could give you some advice. We used to live in Minnesota where access to health care was great, but the care was just okay. When Caty was 5 we moved to just outside of DC where access to health care was tough, but the care was great. We moved to a school district renowned for its special ed - it was awful. We sued for services. We lost. We moved to Loudoun County Virginia (about 50 minutes outside of DC) and the school district worked with us to place Caty in a 12 month private day program and she is just starting to really take off. Caty will be 12 at the end of this month. She did not walk until she was 8 years old. She still does not have a reliable communication system. She is timed toilet trained, she self feeds, pedals a trike and her great love is therapeutic horseback riding. She also likes to float in a heated pool. Caty takes depakote and keppra for seizures which are, for the most part, under control. She also has a pacemaker as a result of post-op complications from heart surgery when she was 5 months old. She has mild hirschprungs and we control it with diet. I hope that this gives you hope. Please let me know if you want me to put you in touch with Judi.

Rosemary
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nanamom



Joined: 10 Oct 2006
Posts: 10

PostPosted: Wed Oct 11, 2006 8:04 am    Post subject: Reply with quote

Deby & Rosemary.

I would love any help that you can give me. I live in Belleville Illinois, which is about 20 minutes outside of St. Louis. Nason is Depakote, Carbamazepine, & clorazepate plus he has the VNS all for his seizures which are not under control. Plus he takes Adderall xr, Clonidine, & Risperdal for his ADHD. We are with are 2nd neurologist and we have gotten more answers with him then we did with the last one but is seems like there is nothing more that can be done. I just need some help somewhere. My email address is nanasissymom@yahoo.com.

Melissa/ Mom to Nason 9 1/2 yrs old & Sarah 2 yrs old (healthy as a horse)
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