I spoke with Lizze this morning and things have changed a bit for Gavin. He had another bout with chest pain last night. Akron Children’s Hospital has wisely decided to treat Gavin as a cardiac patient. Until they can confirm that nothing is wrong, they are going to treat him as though something is.
The cardiologist came in today and explained to Lizze that Gavin’s 12 lead EKG was abnormal.
He said that it could simply be that because Gavin’s heart is in the center of his chest, it through the EKG off hut he’s going to compare it to Gavin’s previous EKG’s to make sure.
At this point, Gavin is resting and being monitored for seizures.
Gavin is also being worked up for something called Marfan Syndrome. This is a rare disorder of the connective tissue. Gavin’s doctors have been concerned about this for a little while now but it hasn’t been as big a concern, only because he had more immediate things to worry about.
Not very familiar with Marfan Syndrome, but I know it’s not a good thing.
Right now, Lizze is waiting for Gastro to visit to discuss Gavin problems with swallowing his food or drinks.
That’s all I know at the moment. Right now I have 2 very hyper kids at home giving me a ride for my money. My plan is to maybe try and take the boys to a movie later on. I’m waiting for the mail, and hoping my paycheck shows up today. If it doesn’t, than we aren’t going anywhere.
Please continue to keep Gavin in your thoughts and prayers. I will keep you all updated as I myself get updated.
**Thanks for reading**
-Lost and Tired
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This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct is working against me.
I have Marfan syndrome and do quite a bit of volunteer information with the NMF. I have a son with autism, and I also apparently live close to you. So, um, if you want to shoot me an email at marfmom at gmail dot com I'm happy to talk with you more about Marfan syndrome! 🙂
Also, I think I had read at one time that Abraham Lincoln may have had Marfan's….
That\’s kind of funny because I\’m related to Mr. Lincoln on my mother\’s side. I adopted Gavin so there\’s no link there but still ironic. 🙂
Definitely praying for him and your family!!
My recent post Simple Life with Complexities…
This is a connective tissue disorder related to Ehlers-Danlos syndrome. I have written to you before specifically about the mouth sores.( I have two boys with autism, and I have Joint hypermobility Syndrome ( which my doctor suspects is Ehlers Danlos type 3) and major Autonomic nervous system issues … Feels like they may be getting closer!!! Fingers crossed for you! Michael Phelps, the olympic swimmer, has Marfans. Things can only get better when they actually KNOW what they are treating!