The doctor called and left a message that said that Will does NOT have seizures! That is according to the pediatric neurologist in Minneapolis. Since he had to leave a message, we weren't able to ask many questions, but hope to soon.
He still has some unusual "movements" and something we will have to keep our eye on and try figure out more.
It is so wonderful to hear this information. Having seizures would be so disappointing and hard on the child and their families. Its also nice to avoid those medications as well.
We'll get his casts changed, again, today, then next week he should have his Achilles tendon clipped, then casted for 3 weeks rather than just one. He'll have possible 2 more cast changes, then he'll have to wear special shoes with a bar between them. The bar moves up and down so that babies can't pull one foot out of the shoe, but the bar prevents their feet from moving medially (closer together). He'll have to wear it 23 hrs a day for 3 months, then every night for 3 years. The follow-up with the shoes and bar system is responsible for 95% of the success according to the orthopedic doctor. These doctors/nurses have been doing a study on this method for quite some time (Will is a part of it also) and are finding adults without any other neuro issues, who've had this done do not have any limitations for walking or even running marathons, whereas the surgery that is still being done some places, the adults have to have desk jobs or limited type of mobility. Just pray we can figure out what is going on with Will neurologically. Its wonderful there are no seizures, but it would be nice to get him figured out.
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I had a foster daughter who I took to the hospital several times for seizures that weren't seizures. We found out it was a very rare condition called "Sandifer's syndrome". It actually is caused by acid reflux but appears like a seizure. It was controlled completely by medication for reflux.
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