So yesterday (Tuesday) we went in and Alastair got another dose of Neupogen, as well as the IV plug put in his foot.
Today he went under anaesthesia (gas) and had his bone marrow aspirated from his tibia because babies' hip boned aren't fully developed. The hematologist took about a half hour to process it with the centrifuge (to separate the stem cells) and injected 1/3 in his lumbar and 1/3 in his IV. They collected about 180 million cells in total. The remaining 1/3 is being cultured tonight and will get injected by IV tomorrow.
Alastair is doing OK. He is pretty grumpy. His leg puncture seeped blood a bit under the bandage but seems controlled. The doctor came to our hotel and changed the bandage and brought extras for us. The lumbar puncture seems basically fine. We haven't noticed any miracle day 1 results like you sometimes hear about, but we were expecting more in the 1 to 6 month range regardless, as seems more typical in studies.
On Thursday they gave him manitol to open the blood-brain barrier, then gave him the remainder of the cells, 72 million, by IV. They gave me a precise tally; the previous day's 2 injections totalled 197 million, so altogether it was 269 million. They said it was smaller than normal since he is so small.
Then they sent us to a physical therapist gave us some additional advice. He sees physical therapists here in the US as well so I thought this was superfluous, but it turned out that she had some good ideas that we will be using.
At any rate the doctor says if we see benefits it should be at around the 1.5 month mark, starting with general systemic benefits like reduced spasticity, then with more noticeable changes by 2 or 3 months. I'll be sure to report back if I see anything (or if nothing happens).
It has been 6 months since the treatment. Regrettably it doesn't seem that Alastair has made any improvements, or, if he has, they are very minor. We have seen more drastic changes by changing the dosage of his medicine (baclofen and artane), though even these are fairly slight.
It is my suspicion that the nature of Alastair's injury (bilirubin damage to the basal ganglia) is somehow unable to benefit the same way that other forms of cerebral palsy can. Maybe because that region of the brain is too isolated, or because of how it was damaged. The only things I can think of to try are to use neural progenitor stem cells or to inject the stem cells into his globus pallidus directly with stereotactic surgery (or both), but as far as I know this isn't something being done for minors.
We talked to Dr. Steven Shapiro (the kernicterus expert) and he suggested that when Alastair turns seven he might be able to have stem cells injected at the same time as having DBS electrodes placed, though I believe that's contingent on some studies being done between now and then.
At any rate I can't say I regret having tried, since I know I would have always wondered. As far as I know, bone marrow stem cell treatments had not been previously tried on children with kernicterus, so now there is at least some public record of things that do not work so that we can move forward with other treatments.
Thank you so much for this vital information. You and Alastair are to be commended for your pioneering efforts as are the doctors who want to help. I hope you will continue to let us know of any future treatments you decide on.