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Doose Syndrome
Sun, 07/27/2014 - 23:21Hello.. My 5 yr old son was recently diagnosed with Doose Syndrome.. After his 1st Grand Mal seizure on March 20th.. He has between 15-20 head drop and drop seizures per day & his last Grand Mal was July 5th.. He's currently taking Depakote and just started Topamax also tonight.. He's already experiencing a decreased appetite with the Depakote.. And I'm hearing that the Topamax will also give him that same side effect.. Is there anyone else that is having a similar experience or familiar with these meds? I'm open to any and all advice as this is all so new to me.. To US.. Thank You:)
So sorry you are dealing with
Submitted by Anonymous on Wed, 2014-07-30 - 01:30
So sorry you are dealing with this, lots of stress and a big learning curve.My daughter has decreased appetite sometimes after increasing lamotrigine, but it partially came back so she stopped losing weight (pretty much stopped eating everything the first time it happened, but it has returned enough when it happens so far, good thing she wasn't skinny to start). She doesn't have that with her first drug. Even if it is a possible side effect, you won't know how he will do for certain until he tries it. If there are Doose syndrome issues, you might have to ask other parents dealing with that. doosesyndrome.org mentions a parent yahoo email group, don't know if they are actice. There is an epilepsy parent group on yahoo, not specific to any syndrome (epilepsy-kids).