amy39
New Member
Posts: 2
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Post by amy39 on Feb 17, 2010 17:16:45 GMT -5
Hi, there, so pleased at last a forum where we can discuss any concerns. My little girl Amy who will be 3 in June, was diagnosed last year with AHC, i have the topamax and the midazalom but the topamax she was sick with and we have not seen a neurologist since last May, ours left to go to great ormond st and now my own gp is this minute referring Amy to a Dr Livingston in Leeds who i have been told is a really excellent guy! We have the midazolam here in case of a big attack, we had one last November which i think was a bilateral as it affected her whole body and she was paralysed for a long period. Her attacks are all different and don,t always occur on a daily or weekly basis. I am still coming to terms with the condition as it's so rare! Also i worry about the topamax as the doc did tell me it can cause weight loss. Any replies greatly welcome.
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Post by Thomas Way on Feb 17, 2010 22:01:28 GMT -5
Hi Amy's parent! (are you amy too?)
My son Patrick is on Topamax and it doesn't seem to have affected his appetite. In fact he's a human vacuum cleaner! I know loss of appetite is a noted problem for some though.
He's been on it since an early age and I have wondered what effect it might be having on his development. He doesn't have epilepsy or seizures as far as we know, just the hemi attacks, but when we tried to get him off topamax his hemiplegic attacks got a lot worse, longer and more frequent. His neuro put him back on. I know topamax is often used as a migraine prophylaxis so maybe there is a connection there somewhere.
Are you also using flunarizine? I guess you are. Flunarizine was by far the best thing we found for Pat, though I'm still unsure whether we've got the dose right. There's so little information available on it.
We've just started using midazolam too. We had to order it through Singapore (we're in Indonesia) and it took a few months to arrive. The funny thing was it has an NHS label on... from surrey! It's pretty expensive when you have to by it, but more convenient than diazepam. I'm not sure that it really stops Pat attacks, getting him to sleep is still the key.
I'm interested to hear other replies about topamax too.
Tom
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Post by Thomas Way on Feb 19, 2010 13:41:46 GMT -5
Hi, no my name is Rebecca, i not had the flunarizine prescribed at all, just topamax and midazlam. Amy has melatonin too for sleep but i personally don,t think this works and i think she gets moody on it. Amy is pretty hyper most of the day and wakes frequently through the night. I not sure why i not been prescribed the other i think it was something to do with her size as she is small for her 2 and half years. Amy started walking at 26 months and wears piedro stability boots at the moment. Her attacks are not frequent at all but when she was a baby she had them weekly but now we never know when one will come on and they are mainly in her sleep and on awakening, thats when i give the midazalom on onsett. She had a bilateral one in Nov last year. We think Amy will start the topamax this year when we see the neuro again in March but she is not a big eater and this worries me.
Rebecca
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Post by Thomas Way on Feb 21, 2010 8:32:40 GMT -5
Hi Rebecca
hmmm... When you get to see Dr Livingston I would raise the point about flunarizine immediately - sooner if possible. I'm sure others have had much more contact with a number of different children with ahc than I, but it seems very strange that amy hasn't been prescribed flunarizine yet, at least for a trial.
Patrick's neuro describe flunarizine as 'a relatively innocuous drug.' It doesn't seem to have a tremendous amount of side effects other than sleepiness from what I can see, and if it's dosed correctly weight shouldn't be an issue. Topamax on the other hand has a pretty heavy side effect profile. I wish we could get Pat off it, but it does seem to help him. From what I've read topamax only seems to help in a very few cases.
However... flunarizine made the single biggest difference to pat's (and our) life so far. I don't think it's wrong to query with your doctor about this. The reason we get on so well with Pat's neuro is that she is open about ahc being a new thing for her, she does as much research as possible, and she notes all the feedback we give her.
I'm interested to see if anyone else has any views on this.
Good luck, and let us know how you go.
Tom
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Post by tamasine winkworth on Mar 11, 2010 7:15:07 GMT -5
Hi, maybe late in answering, but my daughter Grace has been on Flunazine since her diagnoses at 2yrs. We can not use midazalom as this makes Grace vomit (which we go through periods of )or it has been know to make her fit. I have never had a problem with the flunarizine only when she hasn't taken it her hemi's will come thick & fast. We also used every sleep method available before melatonine & I think Grace was the first with AH to use this. They use it at school more than we use it at home but it works along with a dark room & quiet.
Hope this helps
Tamie
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emma
New Member
Posts: 7
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Post by emma on Apr 20, 2010 8:35:57 GMT -5
Hi, know that this is a very late reply. Abigail has been on flunarizine since last Sept and we have seen great improvement in the amount and duration of the episodes. We also give Abigail Melatonine 20mins before bed and this seems to also be a great help. Looking forward to meeting you all in June. Emma
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