Friends Of Drake | Help Us Fight Autism

HBO Treatment in December 09

Drake first of all enjoys going into the pressurized oxygen chamber so much. We go to a place in San Rafael called Advanced hyperbaric Recovery www.improvehealing.com. They have a chamber big enough for both of us. Drake has been doing HBO therapy off and on since he was 5 years old. When he does a series of treatments we routinely notice in the following weeks that he goes longer between seizure episodes, smiles more and when he does have a seizure he recovers faster.
Epilepsy update

We are well, as I write this Drake has gone 18 days with out a seizure. We have been up to some good treatments so I am not sure if there is a silver bullet, but I think it is the perfect combination of helpful elements. Specifically we have been doing occasional HBO, a GF/CF and low grain diet, a new seizure medication Banzel and are 6 months post stem cells transplantation. After seizure activity his mood and temperament can be awful, so for a quick fix I have been taking him in for occasional HBO (hyperbaric oxygen) therapy. What prompted me to do this? Last month Drake was in a bad mood for days on end. He was irritable, destructive and generally fussy. Not sure what to do I made an HBO appointment. He was an angel in the chamber and finally seemed content in his own skin. Soon after his smiles came back to his face. My goal now is to take him into the chamber every 10 days or so. We are so blessed to have a HBO facility 30 minutes away from our home. Drake has also had his first IVIG infusion on July 17th and goes in for his second this Tuesday. This therapy is all new for us. For years there has been literature out there on IVIG being used for epilepsy with amazing results. I will attach a link to one article (http://professionals.epilepsy.com/page/inflammatory_immuno.html). Last but not least there is BANZEL (rufinamide) which is a prescription medication approved for the adjunctive treatment of seizures associated with LGS in children 4 years and older. Prior to now I had lost faith that any prescription medication would help Drake. The nature of LGS is that the individual suffers from life long seizure with little relief from any medication with a poor long term prognosis and a decline in intellect and behavior. So far we are NOT seeing any of the typical side affects that you usually see with anticonvulsants.
New drug July 09-Banzel

July 09 new drug- Banzel The year is officially half over. The seizures this year have been coming with regularity resulting in 4-6 large episodes per month, which ends up being one to two per week. On occasion he will go 2 weeks seizure free. Every other seizure goes into status requiring medication to stop. This year we have also seen a lot of twitching mostly in his hands, which I can assume is some kind of partial seizure activity.
IVIG Therapy Explained

In my ongoing effort to stop my son’s seizures we are going to do a trial of IVIG. I first heard of IVIG about 8 years ago when Drake was 5 years old. When doing research it kept coming up as a possible remedy for intractable seizures.
Just a nice day . . . .

Drake and I got up early Friday morning for a dental appointment in San Francisco at the UCSF campus. I loaded the car with all the essentials like changes of clothes, medication, Drakes favorite books, snacks, back pack, and the stroller/wheelchair. After a whirlwind breakfast mess success we jumped in the car. We were exhausted from the long week. Drake still has trouble sleeping at night. Thursday night I slept in his trundle bed to help the little man settle down for the night which he finally did at 1:45 a.m. So here we are in the car me jacked up on a great cup of coffee and Drake on 5 chocolate covered coffee beans headed out of our sleepy town. Some where around Hwy 29 Drake realizes we are not on the way to school. He looks out the window at the passing scenery and I think he is excited. After all I am The Pied Piper of Fun!
April note by Dixie

Thank you so very much for your kind thoughts. Drake has had some clarity improvement - at times - and he is sure growing - finally... We're still watching and waiting. They said at the clinic it could take up to 6 months for the stem cells to repattern and show results. We're still in prayer!
One month post stem cells

Thank you to all of you who have kept us so lovingly in your hearts and minds. I can feel the support and encouragement you are sending our way. Drake has not had any change in his condition yet. He continues to have seizure and headaches on a regular basis although the twinkle in his eye is brilliant. The veil has not lifted, but I am optimistic that in the months to come we will see the beneficial effects of the stem cell transfusion and our prayers.
Our Stem Cell Experience

I have joined the ranks of parents taking their children out of the country for adult stem cell transplantation. We traveled to Costa Rica to the capitol city of San Jose to The Institute of Cellular Medicine. My son is 13 years old and has a clinical diagnosis of Autism and Lennox Gastaut Syndrome (a severe seizure disorder). He received a total of 36 billion cells over 4 days. 18 billion were administered interthecally and 18 billion IV. The ICM clinic has its own stem cell lab so they maintain control of the cells from harvesting to administration. I was blessed to have one of my Mom¹s (Dixie) travel with me and we decided to rent a car and stay outside of the busy capitol area. We stayed at a quiet beautiful inn in Escazu called Costa Verde. We are not city people and we felt this calm beautiful place offered a more healing environment. While traveling my son was a kindness magnet and all our travels felt blessed. The ICM staff was efficient and skilled. They have explained that we will not see the benefits of treatment for about 3 months. I am hopeful this treatment will pave the way for my son to be seizure free. I will share any gains my child makes here so please continue to check in to see how we are doing.
Stem cell experience cont...

Wednesday we went to down town San Jose to the Mercado to see what Arturo the manager here at our inn called the real Costa Rican shopping experience! There is a boulevard of urban shops packed with shoppers. Drake was in his wheel chair so we were able to maneuver thru the crowd. People are very well dressed. The ladies are in jeans and heals- many of them are quite beautiful. Drake scored on a new pair of OP shoes. It is fun to figure out colones to the dollar- the shoes were 11,000 colones, which means I paid $22 dollars. Contrary to all the tour books I felt safe and in no way felt as if we were on the verge of being ripped off. I had a purse and Drake had a backpack on the back of his wheel chair. I liked exploring the market, because it is so different from home. This covered market has a rural market feel (I imagine it is similar to a Mexican market). The booths were colorful and the alleys between them were narrow. We then drove to the clinic and got a tour of the stem cell lab. Driving anywhere is really intense. Dixie rocks as a driver. The car exhaust here is absolutely nauseating. The lab was very impressive. We met with the medical director and one of the other doctors.
Drakes First Stem Cell Treatment

In preparation for our first stem cell treatment, Drake had a blood draw on Monday. This is routinely done to rule out infection and to have his plasma to feed the stem cells in order to, minimize rejection and possible allergic reaction. Drake is pro at lab draws so this was not too upsetting for him. After our morning at the clinic we headed off to the Zoo. It is called Zoo Ave located in Alajuela, which is about 15 min north of the airport. This was a spectacularly lush zoo and gave us a true rainforest experience. My son was able to run and play in a tropical oasis. We strolled at a leisurely pace and it took us 3 hours to walk thru the park. The park really featured great aviaries of native Costa Rican birds, including lots of toucans, the resplendent quetzl, and so many more. We saw monkeys, turtles, iguanas, pumas, marmasets, tapirs, crocodiles, ocelots and other native cats – just to name a few! The park was a jungle of exotic vegetation like lots of different flowering gingers, heleconias, exotic bamboos, kapok trees and things I do not know the names of. We were there on a week day and we felt like we had the place to ourselves. When we parked there were only about 5 cars. I highly recommend this place for parents traveling with special needs children. The cost was $15 for adults and it was totally wheel chair accessible.

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