Welcome to Drew's fundraising page! Drew is needing a surgery that his insurance will not pay for. This surgery is $20,000. We are raising funds to help his family out with these medical expenses. The following is a message from Drew's mom explaining Drew's situation.
Doctors have called it "the perfect storm." Drew has a suppressed immune system from the juvenile arthritis medications. Because of this when he got strep throat it immediately turned to scarlet fever. The scarlet fever caused an increased intracranial pressure. 8 to 15 is normal. 22 is life threatening. Drew's was a 42. Because it took the doctors so long to figure this out, it caused damage to his greater and lesser occipital nerves in the back of his head and the zygomaticotemporal branch of the trigeminal nerve on the right side of his head. Since the nerves are damaged and not working properly, this has caused the intense levels of pain that he has experienced on a daily basis since February. Whereas migraines have triggers causing the pain to come and go, this never lets up. The doctor said it's probably at least 10x worse than a migraine! While this is a rare condition in adults, it's pretty much unheard of in children. In 2005 for example, there were just 2 documented pediatric cases in the US. As a result there is no "standard of care" for treatment. This is the set of guidelines that doctors and insurance companies use to diagnose, treat, and pay for treatments. When procedures fall outside of these guidelines, they are considered "experimental". In a nutshell, the surgery will consist of making 5 incisions in Drew's head to reach each of the 5 nerves involved. The surgeon will then remove any blood vessels or muscles that have become pressed against or entangled with each nerve. If there is any damage to the nerve, he will also attempt to correct it and then cushion the nerve in fascia to isolate it from surrounding structures. It will tentatively be about a 4 hour surgery, and Drew will leave with a couple of inserted drains. The surgery will be on Tuesday February 11th, so we'll return Thursday the 13th to have the drains removed, and then return again on Monday the 17th for a post op follow up. The surgery will be in Houston which is about a 3 hour drive from us. Monday the 10th will be a pre op appointment, so we'll stay in Houston Monday thru Thursday. We'll come home for the weekend, and then make the drive again on Monday. Because nerves are sensitive and complex, it could take a full year to achieve maximum healing and results. Within a few weeks though, Drew should see a drastic change (hopefully) with his pain levels. We are nervous, scared, and excited all at the same time. The nerve blocks have almost completely worn off so his pain levels without activity are staying at a 7. If he's up and around though it shoots up pretty quickly. The Botox injections did work some bringing the levels down from a constant 8 and 9 so we are at least grateful for that. He's back to sleeping a good bit of the day though and that's hard to see as you know that's just NOT him. How many times over the years have I wished that kid would sleep!!! LOL Now I just want him back to his crazy hyperactive self!!
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