Hello Again,
I know it has been awhile since my last post, but to be honest there has not been too much to tell until today. We had several test run during December and the good news is that they all came back normal. This includes the biopsy of his spine.
We have not seen any improvement in his walking or energy. We did have an appointment with PMN&R at Texas Childrens'. Which is just a fancy name for a doctor of physical thereapy. Of course physical therapy was recommended again along with speech thereapy. So with periodic phone calls with our neurologist we discussed treating him with physical thereapy and possibly trying Cooper on a trial period of a medicine for dystonia.
Today we saw a different neurologist at Texas Childrens that specializes in movement disorders. She asked Cooper to walk and immediatly noted that he was having severe muscle weakness. This is something we have already noticed, however, she noticed that his muscle weakness was in his upper body as well as his lower body. So we are now leaning towards a muscle disorder. There is ANOTHER neurologist that specializes in neurological muscsle disorders. We will be seeing him as well. The doctors are now starting to see his muscles degenerating.
They wanted us to test him when he was having one of his "can't walk" moments for his potassium levels. And considered having his admitted for this and other testing. While we were there he had was unable to stand on his own, so they went ahead and drew blood right there in the doctors office.
We will be heading back to Texas Childrens on Thursday to test his heart. Since the heart is a muscle they are worried he might start developing heart problems as well. Then we will be having a muscle biopsy done in the beginning of February.
Basically we are now leaning towards a muscle disorder, but when we asked them to give us an idea of what they were thinking, they told us they would rather not alarm us. So we are back to the testing and waiting phase.
Please continue to pray for Cooper. Thank you to everyone who has been following are journey. Your enecouragement means so much!
Love Always,
The Cannon Family
This is really bothering me and is becoming more and more difficult to read every time. I feel like I need to go down to the hospital and choke out a Dr for you. What the fuck good is a Dr if all he does is refer you to somebody else????? Disgusting!
ReplyDeleteHow can I help?
I've got you guys in my thoughts all the time.
eHugs
You have gone to the best place where there are so many specialist who will be working together. Many muscular disorders are still mysteries and eleminating is necessary. Keep searching and praying. Cooper has a huge support group behind him and lots of family love. He is a beautiful little boy!
ReplyDeleteMy heart goes out to all of you and lots of prayers are being said for Cooper...we love you guys and if there is anything we can do please do not hesitate to ask....I would love for all of us to get together soon, I will call soon.
ReplyDeleteLove you,
Krista
what stinks is how doctors don't listen, never, we tell the doctors everytime how cooper has bad hours , not days, and the not walking last only a few hours. how he is loosing muscle in shoulders and upper body. but they never belive us, theyhad only seen him in the good hours, so when they saw him yesterday in one of his bad hours they told us why we hadn't told them about it worsning. problem is he has been this way for months. off and on, they acted like they discovered something new, but it took them seeing with their own eyes his state to beleive us. now they seem to put more urgency on it. it sucks doctors egos won't allow doctors to listen for once rather than know it all and take parents as idiots.
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