Mood stabilizer for Fragile X child

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!

Can you get a second opinion from another psychiatrist? I don’t think any of us here are really qualified to answer this type of question. I know personally that I am not. I’m not trying to push you off, I just think you need an expert’s care. Many of us here have had to “doctor shop” before finding the right one. If you don’t agree with this dr’s opinion I would definitely seek out another one.

Maybe someone else on here can help you more! I hope you find the answers you are looking for!

Lamictal is a mood stabilizer and NOT an anti psychotic.I would be interested to know what the doc thinks of this and hope it works for your son. Please keep us updated.

Thanks for your reply. I am in Montreal, Quebec, and I have spent months and months just trying to get any child psychiatrist who was willing to follow my son. The wait lists are extremely long, and the specialists are very few and far between. There is no "doctor shopping" here, not in this case.

Thanks for your input about Lamictal. Is that seen to be the safest one, despite the potential for a life-threatening rash (especially in children)?

The rash is a rare side effect. Just keep an eye out for any rashes while he is on it and IF one developed let the doctor k ow immediately.

I see. Then I would agree with lamictal. The rash is extremely rare as long as it is tapered up slowly and properly.

OK, thanks!

Hello, I am impressed by the loving care you express for your son.

Yes, Lamictal is a mood stabilizer, but I don't know if it's used for children, if it's an appropriate medication for your son with the type of disorder he has, and I don't know if it specifically activates GABA. You can certainly ask your son's pdoc about Lamictal.

But please understand that there is no one on this forum who is qualified to answer your question. None of us know your son's exact situation or history, and none of us have the knowledge of psychiatric medication (especially for children) required to properly reply to you.

Best of luck to you and your son.

I take lamictal, and it works well for me. But I'm an adult and I also don't have your son's condition. Still I do think it's worth asking your pdoc about it.

I am not a psychopharmacologist or any kind of doctor, pharmacist or nurse. I can't answer your main question below. But I urge you to ask your question below to the appropriate doctor(s).

You wrote:

"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 hope the answer to above is "yes". If so, discuss what they are with the doctor, if they can be prescribed to children (not all medications are approved for children), and if they may have a better side effect profile to Depakote.

Some people don't have side effects that others have on the same medication. Sometimes one just has to see what happens before condeming a medication. I know people who say they didn't gain weight on Depakote. I know others that gained a lot! I, personally, feel Depakote is a better idea for boys/men than girls/women because of the possible risk of Polycystic Ovary Syndrome to females, which is far from a given, to my knowledge.

I was going to suggest this as well.
bizi

I was put on Depakote for the 2nd time last Nov. I was very anti this drug in the lead up to being put on it.
I now think it’s the best thing since sliced bread. I am now so much more well than prior to starting Depakote.
I’m glad I took online reviews with a huge grain of salt.

Yeah I DID get a rash with lamictal BUT- it came on slowly and I was able to stop it from getting worse with no problems.

It is rare to get a rash, and it is even rarer to get a DANGEROUS rash. Like, talking almost lottery numbers here for the dangerous one.

So I really- wouldnt NOT take the medication because there is a very slim possibility of a rash- when really, its really usually NOT the end of the world.

But I would talk to a doctor. I loved lamictal and wish I could still take it. It was wonderful and if your son can get helped by it... well, I think its worth looking into