Any other moms out there with children with chronic illnesses?

Leah - posted on 05/20/2010 ( 6 moms have responded )

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My son is now 17 but has suffered from a rare condition known as Moore's Syndrome since he was 7. Sometimes I feel so frustrated with the illness and the lack of knowledge out there on this disease. I feel isolated from other moms and even from family and friends. I would like to talk to other mom's who have faced the issue of chronic illness or are facing it now. I am trying to help my son learn to live with this illness.

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Leah - posted on 05/20/2010

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Kim - I am so very grateful for your words and your story. Just when I feel that I've come to the end of my strength, I hear stories like yours and Thea's and I realize that our strength is endless. I am so sorry to hear of your grandson's difficulties and so very impressed by you! Thank you for the reminder of why we fight the good fight. Our children.

Kim - posted on 05/20/2010

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My grandson was FINALLY diagnosed with Rubinstein-Taybi Syndrome, partial Agenesis of the Corpus Callusum and Hydronephrosis when he was 19 months old. My daughter's pregnancy was uneventful and we had no indications that there was a problem. When he was 9 hours old, he was transported to NWTH in Amarillo where he was misdiagnosed with Dandy-Walker Syndrome and Pfeiffer Syndrome. We were told that his prognosis was terminal. Durning his stay, he had a feeding tube (mic-key) placed because he was aspirating and not gaining weight. A nurse also ignored an alarm in the middle of the night and as a result he received an "IV burn" on the back of his leg just above his heel - clean down to the bone! It was horrible! We were in that hospital for 5 horrifying weeks. We finally found loving and supportive doctors in Lubbock at Texas Tech. Since not a whole lot is known about RTS (it is relatively new and there are less than 1000 children in the US with it), we have a really tough time finding treatments for all of the symptoms that come along with having RTS. I know that it is hard! And I know that hearing people tell you that you were chosen by God to care for this child because of your strength DOES NOT help. I know that you feel helpless and hopeless most of the time. And I know that you are not the strong one - your precious son in the strong one for having to live and thrive with and in spite of this diagnosis. You are his mom and just doing what moms do - loving and caring for your child. Who happens to be parenting an ill child. And ALL children are gifts from God. Hang in there! Have faith that He knows and that He is there. And keep pushing the docs - you are your child's only advocate in this whole horrible medical system!

Leah - posted on 05/20/2010

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Kate - The lack of info is so frustrating sometimes. If you look under google you can find very limited info. It's a form of epilepsy that affects the digestive tract. The seizures (for my son) are so frequent it's an almost constant thing. We're working on the dosage of his medicine but that has side affects. I think today it just kind of got to me. I'm so glad this group is here. Thanks for responding. :)

Leah - posted on 05/20/2010

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Dorthea - Thanks for the encouragment. Sometimes it just seems a bit overwhelming. We have a Children's Hospital just an hour or so away. In fact that's where my son was diagnosed. Today just seems to be a sad day. I appreciate your words. :)

Kate CP - posted on 05/20/2010

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Yea, there's not a lot of info out there on this syndrome. The only thing I found was Dennis-Fairhurst-Moore syndrome and it says it's lethal and that's about it. :/

Dorothea - posted on 05/20/2010

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I have a five yr. old that has Cerebral Palsy. He was born preterm, and has had numerous problems.
First off you ARE NOT ALONE, although I know you feel that you are.
Second, since he has a rare condition, you probably see some sort of specialest. If you do, ask their office if they know of any family support groups in your area. If there is a "Childrens Hospital" in the area, you may call them and talk with someone about finding a support group. I travel 2 hours, one way, to talk with other parents of CP kids because it's the closest group. But we all so talk on line. It's not easy being the parent of a special needs child.
Third, you can always contact me. I'm not in the same situation you are in, but I'd be willing to bet that we have the same frustrations. The same joys and the same goals for our kids :)

God bless! Thea

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