NL says possible Metabolic Issue

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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NL says possible Metabolic Issue

Postby memom » Mon Oct 18, 2010 6:02 pm

Saw the NL last week for swallowing problems and other cm and sm related issues. She thinks that some things are diffiently related to SM and CM but other symptoms are not. She suggested that MaryEmma may have "porphyia" a metabolic issue that can cause neurological problems. The reason she thinks this is it is because MaryEmma abdomen is so tender to the touch, chest pain and other related symptoms that fit. In the past, the extreme tenderness in the abdomen has always been written off to hypersensitivity.

Does anybody have any knowledge of this condition? Of course I have researched it on but it is always nice to speak to someone who has been through it. We have to see GI specialist in two weeks to look into this.

We are still battling the swallowing problems day to day. Somedays it is fine, other days she cannot do it. Today, we are having problems.

NS wants us to have spinal tap, we are waiting to hear when test will be done.

This is sooooooooooo hard!

There is some good news today... Our 2 year old, 90lb. black lab "Smokey" was sent to a dog trainer when all the swallowing issues started. I needed him to obey better since I was dealing with so much with MaryEmma. The lady we use also trains services dogs. I called her to get Smokey back last week and she said she wanted to keep him and turn him into a "Therapy Dog" to help MaryEmma deal with all the anxiety she faces daily. I told her I could not afford that and she said that Smokey would be trained and funding would come from Project Chance - a non-profit dedicated to helping kids. When we get Smokey back, he will be an official service dog and can go with MaryEmma everywhere! We are thrilled. You can go to the and find more about the program. It is not just for kids with Autism. What a breath of fresh air....

Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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