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I feel REALLY lost. Need advice please!

Tue, 09/20/2016 - 18:54
Hello, I have written here before but every time I make a account it say's password wrong/email don't exist so sorry If I don't reply but I am reading them and hopefully this account wont poof once I sign out. Anyway My 4 year old son has epilepsy (so far diagnosed with Atypical absence since 2years old) He started have either really long clusters that go over 2 min's or status type seizures 3 within one month including today. First one, Started off like normal, automatics, eye twitching, eyebrow twitching, eyes rolled up. Then went completely stiff or limp? No movement of any kind (I hate to say but he looked dead) it was going on 5 mins long with that, we administered Diastat and he came around. I have no idea what seizure that was closest I could find was non convulsive status? Broke my heart. Second one was similar to the first with some awareness so I was thinking long cluster? He wasn't moving or responding for almost 3 minutes but would try to turn is head when I talked a few times times but then went back to being movements. His doc don't want him going over 2 min's so gave Diastat and he came around. The next day we called the pharm for a refill on his Diastat since the last tube was gone but they "couldn't" fill his Diastat the ER ordered at the pharm cause they said they need authorization to fill it so they didn't order it) We called his Doc (Which I mean neurologist who specializes in epilepsy) However she never got back to us tho the lady said she told the Dco to call the pharm. Today was the 3rd long seizure (not sure if these are status or long clusters I am very confused)In the morning before anything bad happened we called the pharm and Doc, no help. Called again by 12pm Very annoyed saying he needs the medication because he went into these new episodes twice in one month. After that call BAM he started seizing first like normal eyes up, eyebrows twitching, automatics however that only last 5 second (Usually 30 seconds of those symptoms and he is back normal again) But after 5 seconds he went into freeze unresponsive for over a minute. Looked like he tried to come out he tried moving and tlking and standing but his eyebrows were still twitching and he wasn't in his head, then he laid again. Then He sat up didn't respond except for a crying sound non stop (no tears) He couldn't answer and occasionally his eyebrows would twitch again. In all this he wasn't ever actually aware you couldn't ask him nothing but it looked like he was fighting it? He also was looking like he was falling alseep on and off while waiting for ambo and then in ambo started to have trouble breathing, the whole thing was all over the place! Like I said I have no idea what these episodes are yet. Anyway we could not give him anything had to wait for the ambo. He was still having them in ambo they gave him Valium in his leg and he stopped. The whole thing was 6 or more minutes long until the Valium. Any ideas on what could cause such drastic seizure surges that are different then before? There are no changes home wise and he don't go to daycare or with anyone else. Also what do these seizures sound like? They don't appear to me how the typical status epileptic seems yet they go on of not stoped by the Diastat. I asked his Doc she gave no answer and said not to worry the only change is her increasing his Depakote which i want him taken off it is not helping seems to make things worse. Also can anyone tell me what these sound like? I know there have clusters as he had short clusters before, but also the complete unresponsive no movement episode that can last 4 minutes or longer after. One time had clusters in between which I assume they were since he was moving and trying looking around sometimes (even though I was in front of him) when I talked as well as passing out. I asked him if he remember any thing or the "fire truck" He thinks the ambulance is a fire truck. His response was "I had a nightmare I died" Broke my heart.... I don't know whats going on anymore!!! His Doc seems no help, I can't keep switching neurologist and can't afford to take him to ones people say are good but out of state my transportation is very limited. I am so confused what are these types of seizures? The hospital won't say either they just put seizure on paper. Thankyou fo reading.

Comments

So your son has had seizures

Submitted by just_joe on Wed, 2016-09-21 - 14:30
So your son has had seizures for 2 years. He is now having some that are a little different and are clustering. Which is what the Diastat is for. It stops the clustering.The question that needs to be answered is when do his seizures cluster? After the first seizure? I have simple partial or focal seizures and geberallt they were over after a few seconds. Now and then about 15 minutes later I might have another followed by 1-2 more. Which cause problems. Trip to the ER when I knew what had happened. So I got a medication like Daistat that keeps them from clustering. I now take it after the first seizure to keep the clustering from happening.. Yes seizure clusters can go into status epilepticus. Oh and each type of seizure can cluster. So do call the neurologist and get someone on the phone. Let them know what you want and that you will wait on line until you have heard from th physitans assistant or the neurologist that the prescription has been called in. I have done thisand it does work. only change is her increasing his Depakote which i want him taken off it is not helping seems to make things worse. If the medication had reduced the number of seizures your son was having then it was working. A dosage increase does need to be made from time to time considering that in 2 years your son has gained a few pounds and grown some. I needed my dosages changed 3-4 times in a 8-10 month period of time for just that reason. I gained about 50 pounds and grew almost 10 inches during the same time period. By doing the increases the number of seizures remained where it had been before they increased in number. I hope this helps and your son gets the assistance he needsJoe

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