Hi,

I hope it's OK to post my question here. I don't know where else to go.

My son (11 yrs old) has Fragile X syndrome (a genetic mutation which is the most common known cause of autism). Fragile X boys are known to suffer from anxiety, and also have a dysregulated GABA/glutamate system, which produces a lot of instability/mood lability. He has NOT been found to have seizures, and I really don't think he meets the criteria for any type of bipolar, as he does not have sustained periods of depression or mania. He has had some catatonic-like symptoms in the past though (he had a paradoxical reaction to lorazepam, which is the first-line treatment for catatonia). But now he is not experiencing the catatonic symptoms. The issues now are episodes of hyper-agitation which are associated with perseverative verbalizations (verbigeration, which is basically "word soup" that is meaningless and uncontrollable).

Nevertheless, the pDoc we have just found wants to treat him with valproic acid. Her reasoning is that we need to have something that will increase GABA, and he shows mood instability from hour to hour throughout the day. She also seems to be imagining that he could be having seizures that the neurologists cannot seem to recognize. However after reading about the side effects/risks of valproic acid, I just cannot accept that for him as the first thing to try, because fragile x boys are known to be exceedingly sensitive to med side effects. He is physically very strong and healthy, and I am not about to mess that up!

So my question (for people here that know about meds): is there a mood stabilizer (that is not an antipsychotic, because those can trigger catatonia) thought to activate GABA that has a better safety profile than valproic acid? I know that the usual advice is that you just have to try things, but my son will not be able to express himself about what he is experiencing, and it will be difficult for us to determine the difference between his usual atypical/unstable behaviours and any med side effects (and paradoxical reactions to meds are common with fragile x). So I really need to identify a med (or meds) that are generally thought to be the best tolerated/safest so I can suggest that as the first option to try.

Any input will be greatly appreciate. The pDoc actually tried to suggest to me that there was no difference in safety profile between SSRIs and valproic acid, which is just plain untrue. She also suggested taking valproic acid would help prevent the return of catatonic symptoms, which I can find no support for, anywhere. So I really need to get educated before I talk to this woman again.

Thank you!