We are on the study. My daughter is 5 and just got released to the named patient program. Not sure what part of the study you will be involved in the downside for us was we had to travel every week for appointments and she had to have blood work and check ups. Along with this was eye appointments every 3 months. There was also a lot of logging. You have to be specific because they need to report to GSK what you are doing and how your child is feeling. We found a routine quickly and it was easy. My daughter has had numbers go up and down but they finally have leveled off after we found the right dose which for her is 75mg. The upside is her numbers are now 130-220 and she has a normal life. She has to take the medicine every night and it has to be two hours after any dairy and no dairy 4 hours after. You can opt to do morning but I wasn't sure I could manage the 4 hours after. I will say dairy had an impact on her. When we forgot we would see her numbers fall.
After the year of medicine we will try to wean her off after a bone marrow test. Our doctor in the study has had two patients come off it all together. Our doctor we normally see also has two patients on it who have had to remain on it.
So far no side effects, she has felt great. Her eyes have been fine. The hard part is not knowing the long term but my husband and I agreed that we had to make a decision for the now and worry about the future later. We wanted to provide her a normal life.
Good luck, feel free to contact me and i will give you all the details. There is one other person who has a son on here but she doesn't check often.
ITP is a really a pain and no decision seems 100% right.
Jen
