02-01-2003

Vigabarin (Sabril) was an excellent drug for Maia and managed to keep her seizures at bay (completely) for over a year after weaning her off of ACTH. We then decided to wean her off the Sabril (guess we got greedy) and , of course, the seizures slowly returned. We did not choose to immediately put her back on Vigabatrin as our reasons for removing it were still the same- the vision issues. We spent a few years playing on the medi-go-round and after finding no real help- decided to go back to Sabril. We sort of thought of it as our 'ace in the pocket'. Well, this was a very good lesson in how the same med may affect our girls differently at two different times. Not only did we get no seizure relief- or certainly not what we were expecting- but Maia also started to wake in the middle of the night, often quite upset and, as time passed, with absolutely no intention of going back to sleep. This will remain for me the worst period of my life next to the one immediately after her diagnosis. I spent weeks and weeks with Maia on the sofa in the middle of the night watching Pooh videos just hoping that she might slip of back to sleep before dawn. It was impossible to get her to go to sleep during the day unless she fell asleep somewhere 'by mistake'- on the sofa, in my arms, in the car. It was like sleep had suddenly become a great source of anxiety for her. The terrible thing is that it took us a long time to connect it with the Vigabatrin. Our neuro assured us that insomnia was not one of the side effects of Vigab and that just totally set us off the track. When I finally did decide to take her off it was after trying so many other sleep inducers- including hydro chlorate and Rivotril-a form of valium. Nothing worked. And it took a LONG time for her to get back to normal. I would say almost a year. And, unfortunately, a lot of very bad habits regarding her sleep are rooted during this period- not to mention the stress that the whole family was put under.

I would still highly recommend Vigabatrin for its seizure control, however, I think we should all be aware that all drugs affect our girls differently and that means that they may present problems that are not even listed under 'side effects' on that paper insert. Just my two cents.

Jacqueline ( Maia- almost 6!! and Mikhail almost 4...)
Because much of the talk this week seems to be centered around these two drugs [vigabatrin and ACTH], I just wanted to clarify a few things that were not very clear in my previous letter. Our doctor here at the Childrens Hospital in Athens is the head of the neurological department and we were very fortunate that he took over Maia's case personally when we were first admitted. He is a very knowledgeable man who worked for years in England before returning to his homeland. (Greece) Though he can be VERY difficult to communicate with, I have learned to respect his opinion and experience, and I must say that I still feel he suspected AS right from the very beginning with Maia though he sort of 'broke it to us gently' as the results of all the tests came out that first week or two in hospital. Since we were hospitalized 3 times for ACTH (you are not allowed to administer it at home here due to possible complications with side effects) I observed a fair number of patients (babies) and their treatment who were admitted with infantile spasms. His standard approach seems to be: 'start with Vigabatrin,increase to max quickly and if you don't get results in 5-6 days go to ACTH' I have discussed this approach with him many times and he asserts that you know whether Sabril will work within the first week at maximum dose(1250mg for Maia at 2 1/2 months of age).Though it did cut down drastically on Maia's spasms (she was down to only 2-3 sets a day from 20+) he does not want to wait around for weeks to see if it will eventually eradicate them entirely or not (what I wanted to do) but he does not remove it while administering the ACTH. He seems to let the Sabril take care of whatever is left over after the cortisone has done its job. So what I get from him is its not an either/or situation. His standard choice-and he sustains that it is the only effective med besides ACTH against IS- is Vigabatrin now. I realize this is only one doctor's opinion, and I hope this letter is not seen as endorsing it nor do I want to start a "well, my doctor says..." sort of debate among us. I am only mentioning all this because I realize that since Vigabatrin is not approved in the US that it may be hard to get info on it or doctors that are used to using it. I was spurred to write this because so often Vigabatrin and ACTH are brought up whenever we have a new baby with IS and the parents are swimming in a new sea of unfamiliar words and indecision. I wanted simply to underline the fact that this may not be a 'one or the other decision'. But it is definitely not an easy one and one that you must make balancing a lot of conflicting information. Try to trust your instincts and DO get a doctor you can talk to. It may be one of the most longstanding relationships you will have to tend to in your lives and it can help so much with the pain when it is right and make everything so much more difficult when it is wrong. (Like getting married all over again!) (o: