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.

    Today we drove to the CIMA hospital here in Escazu for our first stem cell injection. The directions provided by the ICM staff were clear and easy to follow. After our intake paper work Drake was taken to a treatment room just like any room at a US hospital. Drake had a seizure last night, so was awake most of the night. He fell asleep just before we left for the hospital and those of you that know us intimately know when he finally falls asleep nothing wakes him up. It was easy to gown him up asleep and transfer him to the hospital bed. After a short wait, I was met by the facility doctor, the anesthesiologist, and Dr. Lara from ICM. Drake received a short acting sedative (propraful Sp?) and received O2 via a nasal canula. Then the facility doctor proceeded with the intrathecal (spinal) injection using sterile technique. I stood out of the way on the other side of the table so I could not see the needle go in. Drakes nervous system responded to the poke with a gentle rhythmic galloping of his limbs, which happens to some people. Dr. Lara produced a preloaded syringe of stem cells from a cooler containing 9 million cells (a mixture of CD34 and Mysenchymal), which were administered without incident. My son was then rolled onto his back and received 3 million stem cells via the IV in his arm. That concluded the procedure. Most children stay for observation until they have recovered from sedation and return to baseline stats. My son arrived in a postdictal state and was essentially presedated. We were allowed to leave about an hour later although my child continued to sleep. Post intrathecal injection there is a possibility of headache, so bedrest is recommended for 5 hours. No problem… Drake continued to sleep until nearly 5 o’clock and awoke at our hotel room with out any complications or headache. As a mother I am pleased that he has not suffered any discomfort and that he basically slept through the entire procedure from beginning to end.

    My child’s primary diagnosis is LGS (Lennox Gastaut Syndrome), a progressive seizure disorder characterized by multiple seizure types that persist with anticonvulsants and tend to lead to a decline in function and cognition over time. My son had a sudden onset of symptoms and was diagnosed with LGS at age 3. The rationale for the intrathecal injection is to get the cells to the brain efficiently. If all the stem cells were given in the vein they would need to cross the blood brain barrier to reach the brain. Drake is 13 years old, an age when we know the system is less permeable. This will help repair the nerve damage to remedy the seizure disorder. The additional IV stem cells should help remedy the gut inflammation which is thought to contribute to autism. The protocol now is to wait 48 hours before the second intrathecal injection. So tomorrow we will have a tour of the actual stem cell lab and meet with the medical director of the clinic. After that our primary goal is to help Drake stay relaxed and calm.

    In case you’re wondering, Drake did not wake up “Einstein”. From what we’re told, improvements will manifest gradually over the next 3 to 4 months. Let’s hope he sleeps tonight.