New Medicines and Rebhab Rules

http://www.hemifoundation.org/

OK, this post is mainly for parents that are following the blog whose kids have gone through a hemispherectomy, or who will be going through a hemispherectomy. I'm going to talk a little bit about some medications that the Rehab Neurologist, Dr. Acosta, wants to try.

The first drug is Botox. Yes, the same stuff that people use to get rid of wrinkles. It is a poison, that if given in very slight doses, will relax muscles. In Jessie's case, her thumb and fingers in her affected hand (left) are very tight, and when you try to straighten them out, they quickly tighten even more. This is called "spasticity". Spacticity, doesn't mean that her hand is shaking uncontrollable. In fact it is the opposite. Dr. Acosta believes that Jessie's best chance of getting any movement back in that hand, is to relax the muscles in one area of the thumb and fingers, so she can get more out of rehab. Here is an article that agrees with him. http://www.medicalnewstoday.com/articles/32812.php

Also, the rule of thumb in neuro-rehab, is that you get the most recovery in the first year after injury (Jessie's is an injury, it was just inflicted on purpose). So, we've already used 1/6th of our time (2 months out of 12). Time is going fast, so we want to do as much as we can quickly.

Maybe if Dr. Acosta has some left, he can take care of some of my wrinkles. :-)

The next medication that he wants to try is Adderall. It is a stimulant and used to help improve focus and attention. Jessie was having problems with that due to Rasmussen's Encephalitis before surgery, and it continues after surgery. That makes sense, because the disease was destroying that region of her brain before surgery, and now it isn't there at all. Attention and focus are usually handled by the right, frontal lobe.

So Jessie has been put on 5mg of Adderall, with the hopes that it will improve focus and attention. Dr. Acosta feels that using this "mental performance enhancing" drug early in rehab gives Jessie the chance to have a better mental rehabilitation. Although he has remarked several time how incredible her rehab is going already.

Here is a link to some info on Adderall. http://pediatrics.about.com/cs/adhd/a/msp_adderall.htm

So, what are the downsides? Well, the FDA has issued a warning that Botox can cause respiratory distress if it goes systemic. So, the use of Botox is not without risks. Dr. Acosta, however, feels that the risk is worth what we may get in return for long-term quality of life.

I talked to the therapist up at KKI, and they also use Botox for the same type of results. Dr. Vining's office really had not comment as they are mostly on the pre-surgical side of Neurology, and not so much on the rehab side.

The risks of using Adderall, is that it is an amephetamine type stimulant, so there are some addictive properties. Dr. Acosta, said that it isn't addictive, and that she can even take weekend "vacations" from the drug. It is really just to help her focus and allow her brain to rehab faster.

Over the next few months, I will blog my objective evaluation of these drugs, and hopefully log data that will help others make an informed decision. Although, anything I write is NOT medical advice, but my opinions only.

God Bless,

Cris

http://www.hemifoundation.org/