Re: Our story

Elisha - posted on 01/02/2009 ( 3 moms have responded )

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Hi...just thought I would say 'Hi'. We are new to this sight and scanning for any relevant information regarding our darling 4th son. Our beautiful 4th baby boy has recently been diagnosed with epilespsy. After a scarey episode on the 24th of Nov, he was wrongly diagnosed with an intercereptual bowel and allowed to return home after 2 day, a week later our went to get our darling son out the cot he was non-responsive, followed by a seizure and then stopped breathing (very scarey when seeing it for the first time. We love some info regarding behaviour changes regarding seizures or medications???? Cheers Wright4kidz

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Shelly - posted on 01/15/2009

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Siezures are scary, I have seen my daughter have hundreds. My daughter is 27 and has had several different kinds of siezures at different times in her life. She had brain surgery (to help control the seizures) when she was 15, she is now 27. You need to learn CPR for your own peace of mind if you will be having to deal with seizures on a regular basis. It will make you at least feel like you can do something if your child stops breathing again. Many people having seizures look like they are not breathing. they turn blue and are unresponsive. My daughter does this with every seizure. She ALWAYS starts breathing again. I have been told by doctors that when a person is having seizures, all thier muscles are contracting at the same time and so it seems like they are not breathing, but it is very uncommon for a person to actually stop brething during a seizure. If you know CPR you can at least give mouth to mouth if necessary. My daughter always takes a big deep breath as she is coming out of the worst part of the seizure. My daughter has been on several different meds. She now has fewer seizures than she has ever had, but she still has them. For a person to be considered to have controlled seizures they have to have less than 12 seizures a year. My daughter has never reached that number, she has always had more than 12 per year. In spite of her seizures she is a happy girl who is about like a 13 yr old. She has speech and learning disabilities and is a wonderful funny sweet girl. you may never be "used to" seeing your child have a seizure but you can inform yourself about what is going on during a seizure so you are not so scared. Very seldom do people have a siezure that does not stop bu itself. Vrey few people die of seizures. That information gave me a lot of peace. I still worry when my daughter has seizures, but I am not as scared and I know what to expect. I think some medicines affect different people in different ways, and sometimes the behavior problems are not-because of the seizures. Sometimes there are other issues that can cause behavior changes. My daughter had to take growth hormone shots when we discovered she was small for her age. Then we found out that her cortizol gland was not working either, so she takes a steroid to replace that. She also has low Thyroid, and takes synthroid to replace that. I don't know if any of these things have been caused by the number of meds she has taken over the years but it could be possible. All I can do is pray that the doctors know what they are doing. Find a doctor that you trust and let them worry about doing the right thing for your child. Become educated about epilepsy and you will feel less afraid of it and will know the right questions to ask. Keep track of your childs seizures, most Doctors don't see thier patients have very many seizures, so tell the Doctors all about your childs seizures, so they can know what to do-to better help your child. Many people have pretty normal lives-in spite of seizures. My daughter is a great example.

Sandra - posted on 01/03/2009

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Hi, I am also new to this site. I have a 5 year old daughter that was diagnosed with epilepsy 1 1/2 years ago. I agree -- the first seizure was the scariest thing I have ever seen. I didn't know what was going on. They are a little easier to handle now because I know what to expect. Finding the right medication and dose is really important. It took us almost a year to get her seizures controled by medication. We are using lamictol and since it took 3 months to get on board we used keppa as a bridge med. Once we removed the keppa she began to have seizures again. It took almost a year to get her to the right dose. It was a lot of blood draws (not her favorite thing to do). It is really scary picking a med because they all have such awful side effects. I was told that lamictol was the new favorite seizure medication. We are very happy with it and there doesn't seem to be any major side effects. One thing I would suggest if you are going to have to get multiple blood draws is to have a doctor write up a presctiption for a numbing cream (lidocaine (spelled wrong)) to put where they draw the blood from. We call it magic cream and it really helps with the anxiety and pain of the blood draws.

Kelly - posted on 01/03/2009

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hi im new to the site and im really surprised how many other people are out there in the same boat as me,

my daughter has now had epilepsy for two years and we found after each seizure she would come round a bit confused then would sleep for about an hour which we were told was normal and alot of sleep after a seizure.

the medication she was put on didnt affect her development but one of the meds she takes makes her eat more and has put a bit of weight on but with help has noe leveled out and now the right weight for her age.

i think it all depends on what medication he will be put on and what sort of epilespy he has,

i hope this helps and we found it so scarey when she first started to have seizures and we nearly lost her 2 times as they couldnt stop the seizure she was havin we were so scared and cause of where we lived there was no support network for us so im so glad to have found this site i hope this helps would love to keep in contact x

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