A Brief History

Well as the title of this blog says this is an adventure. It all began the last day of December 1992. Jonathan was born a happy healthy baby, with good apgar scores. We spent about a hour with him and then they took him to the nursery for his "newborn checkup". When they brought him to my room a little while later he was sleeping. Being first time parents we had signed all the consent forms that were handed our way. Little did we know this would change Jonathans life for ever.

He got the Hep B Vaccine before he was 2 hours old. The 2 days in the hospital we had feeding issues. Jonathan didn't nurse well. He seemed to tired to care about eating. They sent us home and he still wasn't eating well. We took him to the Doctor at a week old. He had lost almost 2 pounds. The doctor said we should try formula and he sent us home with some. We proceeded to try to get him to eat but he didn't eat much. A few hours later he threw up everything he had eaten and became even more lethargic. We ended up meeting his doctor at the emergency room. They immediately admitted him.

They had a very hard time getting an IV started but finally did. They ran every test they could think of and started him on Gentamycin until the results came back. We started the next day to feed him water. Then we worked up to diluted formula and some breast milk. The test revealed "nothing was wrong". After a 5 day stay we were sent home again. (we found out when we left that they were not sure Jonathan would make it through that first night)

Jonathan appeared to be doing fine. At his 9 month check we were concerned as he was not doing things a 9 month old should do. His doctor suspected he had Cerebral Palsy and referred us to a neurologist. The neurologist didn't think so and ran some genetic and metabolic blood tests. We were scheduled to come back in 4 months. All the blood test came back normal so we were scheduled for an MRI.

The MRI showed a lack of myelin in the frontal and occipital lobes. We were referred to other specialists for poking prodding and more tests that came back normal. Another MRI after 9 months. We had some improvement in the myelin but still not normal. So now we embark on therapy, and more therapy. At 2 1/2 we have our first seizure and at 3 we are told he has autism.

Fast forward to age 5. We get booster shots all except DTP. That we need the neurologist to approve. At 5 1/2 we get the new DTaP. 2 days later we have a seizure nothing like the previous ones which had only occurred before if we were sick. Over the next few months the seizures continue to worsen and get more frequent. By six months post vaccine we have more seizures in a day than we can count. We have tried every available seizure med and nothing has helped. We do some research and bring 2 possibilities to the doctors attention. They are IVIG and Oral Prednisone. We try IVIG first with very little improvement. So we Start Prednisone. With in 3 days we are not having many seizures! EEG's are still very abnormal but at least we are not a vegetable.

We remain on the Prednisone for a little over 3 years. We get a Vagal nerve stimulator and start a new seizure med Keppra. Seizures are better EEG still a mess. 2 years after the VNS it is removed. Seizures still pretty good EEG still a mess.

Since the DTaP booster we have had little developmental progress. We have tried every biomedical intervention and dietary intervention, Chelation, HBOT, antiviral protocols. You name it we have tried it!

Now we are about to embark on Stem Cell Therapy in Costa Rica.