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Anyone been on topirimate/topamax and had a SN child?

(17 Posts)
Chundle Mon 04-Jul-11 21:11:19

Hi all I take topamax as I have epilepsy an was told when I wanted to conceive dd2 that it was a safe drug etc etc. Dd2 born an 2 years down the line have had endless problems with her.

Now I find out today that topamax has recently been put into the most dangerous drugs category for women who are pregnant and it's been announced it can cause severe birth defects and other problems!

Whilst glad dd doesn't have a major malformation I can't help but wonder if her issues are down to the drugs....

smugtandemfeeder Mon 04-Jul-11 21:20:50

Oh gawd, sorry to hear that. Worried! I'm breastfeeding DD and just been put on this. Does it carry any developmental risks post birth?

smugtandemfeeder Mon 04-Jul-11 21:23:23

Gosh, just googled the news stories about it. Awful.

Chundle Tue 05-Jul-11 00:37:53

Smug I don't know I would ask mate

zzzzz Tue 05-Jul-11 09:39:32

Chundle I think it warrants more investigation. I would write to the drugs company and to your Dr. and then you will get their response in writing and think about it rather than the "we don't know of any relationship" type answer. It might also be worth asking on-line.

Smug I would go back to the Dr and ask them to check the levels in your breast milk as their will be some level of drug passed on. My daughter took topirimate last year and was very delayed when taking it, since weening her off the drug she has started nursery is talking in full sentences, writing her name, dressing herself, in fact she is back on track for a 4 year old. If I was giving it to a baby I would be concerned about all the learning that takes place in those first few years.

Having said all that Topirimate is a wonder drug for us as my daughters seizures are very hard to control and it stopped them dead. If she had seizures again I would put her back on it without question though I would want to limit the time she stayed on it.

Chundle Tue 05-Jul-11 11:37:45

Thanks zzzz I will email my neurologist as he's very helpful. Interestingly there's a link between being on topirimate and verbal dyspraxia and that's what they think dd has.
Topirimate has done me well for my seizures but if I'd have known I would've switched

Chundle Tue 05-Jul-11 11:40:08

Smug sorry forgot to say, my dd had withdrawal type symptoms when I stopped breastfeeding her.

zzzzz Tue 05-Jul-11 14:01:01

dd started on topirimate at 12 months, was on it for a year, came off for a year, back on for 6 months and now is off it again. I am totally convinced that it affects her speech and in fact makes it very hard for her to learn, since she started coming off the drug in January, she has gone from mostly 2 word sentences on the "more water" level to "xxx is my best friend ever. What is her brother called? Does he have blond hair or brown hair?" and on and on, she has potty trained and generally done about 2 years development in 6 months. With each and every drop in dose she "came out" more. I don't think it is an issue for her at the moment though we still have some behavioural problems [rages mostly].

If it was me having seen what I have seen in dd [and be aware we are only 3 years in to epilepsy and 6 into sli with ds, so novices really] I would be inclined to think that delay was inevitable if they are receiving anything near therapeutic levels and that I would either change drugs or stop feeding [a hard one for me to say as I am a bit of a bf'ing cheerleader]. I'm not sure if say 6 months down the line they wouldn't catch up, but it would have come in at a younger age than mine so a Dr is definitely your best source of info.

smugtandemfeeder Wed 06-Jul-11 06:19:29

Thanks all, thats really helpful. I've only been taking it for about two weeks and it was prescribed to prevent migraines and as a mood stabiliser. There are lots and lots of others they can prescribe I am sure so i've stopped taking it. DD doesnt have any special needs yet, but her brother has ASD so I really dont want to mess about.

Chundle what withdrawal symptoms did your dd have? Sounds terrible.

Cant believe my shrink chose this one out of all the possibilities as one specifically to fit in with me breastfeeding.

I couldnt exactly stop breast feeding could I? I'd have to change my MN name grin

Chundle Wed 06-Jul-11 07:46:22

She screamed endlessly for weeks refused to sleep and was absolutely horrible to put it nicely. It seemed to die down after about 6 weeks

BoyMeetsWorld Sat 06-Oct-12 08:40:15

Just reviving this thread...I was on topamax for 3 years. It was a lifesaver for my hemiplaegic migraine though I did experience the delay when first started it.

Now we're TTC our next dc. I've weaned myself off the topirimate & was planning to give it a month out of my system before TTC. Is that enough? I was on a pretty low dose.... Have asked my gp but he seemed pretty clueless- told me there are no def risks for babies which is rubbish

Chundle Sat 06-Oct-12 08:48:25

Hi boy I think a month to 6 wks should be fine. Your gp is wrong there are definate risks as big lawsuits are ongoing at the mo in the US about this drug. Good plan to wean off before TTC.

ArthurPewty Sat 06-Oct-12 10:52:11

Message withdrawn at poster's request.

ArthurPewty Sat 06-Oct-12 10:56:07

Message withdrawn at poster's request.

Chundle Sat 06-Oct-12 11:18:13

It can cause hypospadius in boys and heart defects as well.

Chundle Sat 06-Oct-12 11:19:52

Leonie I took lamotrogine whilst pregnant with dd1 she has adhd, I was on a high dose of it. Took topirimate with dd2 she's under investigation still

moosemama Sat 06-Oct-12 11:25:10

I was on Topiramate a few years back. It was during the big gap between dc2 and 3 though so no pg or breastfeeding worries.

Just wanted to say that one of the reasons I was taken off it was due bad side-effects even at low-dosage, the worst of which were being unable to think of and form words and severe cognitive fog.

The problem did improve when I was taken off the drug, but remained low grade and have since increased. Neurologist isn't sure what's causing the problem, they have found multiple brain lesions, but can't identify a cause for them.

I often wonder whether my reaction to Topiramate is implicated in any way with my current neurological problems, as according to the neuro I seemed to he hypersensitive to it and it was extremely unusual to see such a severe reaction at such low doses.

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