We started Monkey on folic acid therapy in August of last year. I can’t believe I didn’t mention this at the time, lol. Anyway, the literature all says that it takes a minimum of 4 months for the effects to show up, if any, and we’re well past that mark. In fact, the 4 month mark was in early December.
I would really encourage other families to consider this. We’ve had no side effects at all and we just so happen to have witnessed a marked increase in Monkey’s ability to attend and communicate starting right around the 4 month mark. Part of this could be explained by the increased sensory OT he’s receiving at school but he maintains on weekends and during school vacations when he’s not getting any OT so I don’t think the extra OT can account for all of the improvements.
Matthew did folic acid when he was young but only for a couple of months. We didn’t know it had a 4 month wait then. I’m sure the doc didn’t either. We are his trial and error FX patients. I wonder if it is too late for a 12 yr old FX’er. Hmmm…prolly need to ask our doc 🙂
Glad it has helped him out. That is wonderful.
They’ve found it to be helpful in some boys up to the onset of puberty. We were just hoping it would buy us some time until something better came along. So far, so good.
We tried folic acid but just for a month and didn’t notice much of a difference. Maybe we should try it again for longer? Do you have any links that talk about the 4-month window?
I don’t actually have links, that is what we were told by the FX clinic here in Boston. I can see if they can provide some of the literature they were referencing.
Wow.. I am so glad that you made this post. Dr. hagerman advised that we should do Folic Acid, but it was such a pain to get the high dose as an injectable and the insurance didn;t cover it and we had to use these syringes for administering that we never got started, and then I heard from Sarah that after a month they didn;t notice anything and I knew that once my 1-month supply ran out it would be hard to get a refill, that we never started.
We go and see Dr. hagerman next week and I am going to talk to her about it and find out a better way to get the solution made and try it for 4 months, I had not heard that you need that long of a window either.
This is just from memory still, I’m hoping to get some written data to share. Dr. Picker was saying you need the 4 month window for the folic acid to affect brain tissue.
If you have an independent pharmacy nearby you may want to call and ask them if they would order the folic acid for you and compound it. Our local big chain told us no, the local family owned one got it done in less than 2 weeks. They ordered a big bottle of it since it has a long shelf life and just mix up a batch for us each month. We’re paying out of pocket too but we are using our FSA so at least it’s pre-tax dollars.
We don’t add any flavoring to it either…the pharmacy offers a dozen different flavors but Monkey likes it straight up.
Oh, and just to clarify….it’s a liquid but not injectable…we administer it orally.
When we did it was made as an oral solution from a compound, too. From Elephant Pharmacy for the SF Bay Area folks.