OK, folks, did you all see this post on Dr. Mike’s blog? We are seriously considering trying minocycline with Monkey. We’re holding up the risk of potential teeth staining to a potential for improving Monkey’s overall quality of life. It’s not normallly given to kids under 8 but they’re giving it to kids as young as 3 in the autism trial. Monkey is nearly 5. I’ve asked the head of the FX clinic in Boston his opinion. None of the families in this area have tried it yet according to the clinic though.
I guess I need to talk to our ped. to see if she’d even be willing to consider it…she may not be comfortable with it.
If anyone has a crystal ball that they’d lend to me, I would surely love to borrow it.
9 thoughts on “To minocycline or not.”
I started our son with FX on minocycline a year ago at the suggestion of our developmental pediatrician. Our son was 16 at the start of treatment. We noticed and so did his teachers an increase in his use of language and decreased anxiety. I think the language use was a result of decreased social anxiety and thereby allowing him to use the language that we know he has acquired. He was able to have his teeth cleaned for the first time without anesthesia, sits quietly for haircuts and even allowed the cape to be put around his neck this last time. I wish he were younger as I’m sure changes will be much slower since he is older. I wouldn’t be worried about teeth staining. Teeth are easy to fix compared to brains. My pediatrician that we see for typical illness stuff did have a patient who was taking it for acne and did have the intracranial pressure side effect.
Holly was on Minocycline for 1 month when she was 6 months old. This was perscribed by Dr. Hagerman at the Mind Institute, prior to the recent research being Published. I have several blog posts about this, in fact my daily required Diary is the basis for me starting this blog. My Entire August post are my daily Diaries to Dr. Hagerman Documenting the experimental treatment.
Here are some direct links:
Weird… I wrote a really long comment and incuded a link and apparently that made it delete and not post. Holly has taken this treatment, and if you click onto the website for this comment it should bring you to my post about this or look in my archives in October for the Summary and in August for the Daily medication Journal.
LOL, sorry…you got caught in the spam filter. I re-read through all your posts on it yesterday, definitely very interesting.
Have you talked to your paediatrician about this yet? My boy is also 5, and like you, it’s something we’re looking into. I’d be interested to know any further thoughts/results on this. Ginni x
We haven’t yet, I did try to get some information from the Fragile X clinic but the Dr. hasn’t responded. We have our annual visit coming up in June and we are going to ask about it at that time. Our ped. prefers that the clinic take the lead role in medications, she will prescribe whatever is recommended. So we need to get the clinic’s take on this first.
I was curious if you guys ever did it or not and how things ended up. We started again when Holly turned three and it was amazing. I was curious how things went for you