definately unsure

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stacey

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HI

I have all these thoughts of things that i want to change with my 5 year old son xavier and first off its the meds.

I am definately not a confrontational kind of person but i can definately be assertive when need be and im getting to the point where i want to abuse the doctors, i wont because im not like that but i truly believe that what his doctor is doing is not right and im kinda thinking that most doctors would side with him because of him being a proffessor in paediatrics so i dont feel as if i can get a second opinion so easily.

After chatting with some anti drug pro diet friends they have suggested that i slowly take my son of the tegretol CR (1 1/4 tablets twice daily(200mg) until he is no longer on the drugs and try him on the ketogenic diet.

I have also been told by them that using a dietician for this is not always the best way because they arent always true to information and that they dont always have the childs best interests first.

He also takes 3.5ml of keppra (mg/ml) liquid twice daily and Frisium (10mg tablets)1/2 tablet morning 1 tablet at night.

I am upset because my son is very aggressive and he is naturally a loving and quiet child and i hate to see him like this when its not really him talking its what i believe to be the meds.

any help is appreciated :)

Stacey:ponder:
 
Many people have had tons of success with the ketogenic diet. I would still keep the neuro informed and not totally drop the drug option off the table.

Some people don't need pills and some seem to only have control on them. I wish I had more information. Like some statistics, but I am not on my home computer. The drugs can surely affect anyone. Change mood and behavior and I hope that you can find the right approach to control the seizures.

Best wishes for you and your son.
 
I am sorry you are going through this but a question I have to ask is, is your son SZ free on the medicine?

My son was recently weaned off meds and yes he is a completely different person. His attention span has grown, he is not tired at all during the day, and it seems the cloud of fuzziness around him has gone (no jinx).

We spent 4 1/2 years on Depakote, having one SZ when we tried to wean 2 years ago. Me personally, I can and would handle the side effects and find ways to help him manage his "cloudiness" for him to be SZ free. (no jinx)

Our life changed when he was controlled, we went out and did things, he went out and did things, the stress levels for me went down and I was able to sleep again.
 
stacey

I know what you mean with the doctors and I am sorry you are going through this. Your son being very aggressive I think is the keppra, but I am totally against keppra. I would still look for a second opinion.
 
Can you find other neurologists who are proactive in using the ketogenic diet? Here in the U.S. certain epilepsy centers (like the one at Johns Hopkins) are well-known for their experience in offering and overseeing the ketogenic and Modified Atkins Diets. It would be great if you could take this step conjunction with medical supervision that you trusted and felt confident in.

Definitely get up to speed on what pursuing the ketogenic diet will entail. The more information you have, the better prepared you will be to make the decision. I know it's not an easy one. You might find this article worthwhile: http://www.nytimes.com/2010/11/21/magazine/21Epilepsy-t.html?pagewanted=all&_moc.semityn.www
 
Hi

My son started havinf seizures at 3 years of age and i guess part of the reason i am so unhappy about this whole situation is that i have the same epilepsy but the difference with me is that i was diagnosed at 6 months of age and more or less went on tegretol CR tablets until i was 21.

Before i had kids i went to a geneticist and spoke in length to them about the risks of passing it on and they said 50/50.Having my epilepsy under control as you know i took the risk and they said that i wouldnt know how bad it was until they were born so my point is i think i hold a bit of guilt about that even though my reasons were justified at the time i look now(hindsights great isn't it) and thik i may have been rather naive at the time.

My son didnt end up having meds until he was put in the ED for a seizure that caused him to vomit and my dad was concerned that he could have swallowed some of it while he was convulsing.his first medicine was tegretol liquid but because it wasnt control release it only worked for a very short space of time.

sorry for rambling guys its been a bad day :(

Stacey
 
That's okay, ramble away! I think that if you don't like what the Tegretol is doing to your son ,you should trust your instincts and make a change. Especially because you know what Tegretol can and can't do from your own experience.
 
Thanks Nakamova

I checked out the link that you posted and it was helpful and very informative for me to look at.

To answer Bensalamangler ,My son is still having from about 4-10 absence and also approx 2-3 complex partial seizures a day included in that and that is on the 3 meds mentioned.This is why im so frustrated.
 
stacey said:
To answer Bensalamangler ,My son is still having from about 4-10 absence and also approx 2-3 complex partial seizures a day included in that and that is on the 3 meds mentioned.This is why im so frustrated.
Click to expand...

Again, I am so sorry. It is hard as parents to deal with this. Go with your gut. A change might be just what you guys need.

All the luck in the world.
 
hi

Just for the info out there i have put in a complaint to the hospital and have asked for a second opinion by a different neuro and i now have to wait and see what happens.

I ill be ringing around and just being a nuisance(just kidding) to find a dietician for advice on the matter.

Thanks heaps guys:D
 
stacey

There is no reason for the guilt part, you naive - not true. You will get through this and because of your own life, you are going to make sure you get the best for your Son. If it takes being a nuisance, so be it. Rant/Rave what ever you want to call it, your entitled to. I hope things get sorted for you and I know you will leve no stone unturned. Best of luck.
 
Thanks Fedup

I put this on my facebook page the other day i thought i would share it with you :)

There are times when you think that your life is hard when you have troubles and look for pity and sympathy and that's ok but then there are times you read about or see someone else's struggles and you cry for them and their troubles and suddenly you are feeling foolish for being so unhappy for the minor things that are hard .

I have two beautiful children that I adore, a lovely boyfriend and a close family and great friends. medical issues have been a major part of my family's life but I am so grateful that I have all of what I have and I cherish every moment

The reason that i put that is because i have read through so many posts on here(yours included :) ) and i find myself thinking that i have so much respect for everyone here and i admire the strength and tenacity of the people here in dealing with E.Everyone is having a hard time here not just me :D

Thanks fedup and all :D
 
stacey

Thank you, yes I have a hard time and I get very depressed and life sucks but like you say I am not the only one here having a bad time. This I know but you and others are so good to me at these time when even though I know this, I still think I am the only one. So to you and every one THANK YOU.
 
stacey said:
...so my point is i think i hold a bit of guilt about that even though my reasons were justified at the time i look now(hindsights great isn't it) and thik i may have been rather naive at the time.
Click to expand...

My guilt is for other reasons. I'm the one with E. I'm the mother of two now grown children. I had E while pregnant with both of them and both of them were fine, healthy 9 lb. babies., except my son did have asthma as a child. But after they were born, my seizures became worse over time and the kids had to witness many CP's and TC's, calling 911 several times. They thought their mommie was dying. I felt the guilt of not being the "full time mother" that all mothers feel they should be. Because after a seizure, all I could do was sleep and my daughter would have to take care of her little brother. And then the side effects of so many of the meds I tried were almost as bad. I often felt like a zombie. So the guilt for not being there emotionally when my kids were growing up will never go away for me. But I do tell myself I did the best I could at the time.
 
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Fedup said:
I have a hard time and I get very depressed and life sucks but like you say I am not the only one here having a bad time.
Click to expand...

Yes, many of us here have had a difficult time with seizures and struggle with depression, also. Remember, we're in this together.
 
hi guys

It seems that to feel alone is to be the worst punishment you can receive especially if you are struggling with something like E.Because its still held with so much stigma its amazing but hardly surprising when people back off from you, i have had personal experience with this and all i can say is im sorry for those people who believe that they are so much better then everyone else and are gods gift to man.

The reason that i say that is because only the people that have had to fight for what they have can look compassionately to someone who is having a hard time, help from those who know is the best and sweetest reward.

Chin up guys i will be your friend :D and always know you are not alone!!
 
Hey good news i have been in contact with a neurofeedback person and we are going to exchange details and i'm going to give it a try.Seems like things may be looking a little better:D
 
Excellent, I hope it works for you. It may take a little patience (but as a mom, you're used to that, no doubt). From what I understand, at least 20 sessions.
 
Yeah the lady said that I get a free session first and then it can take up to30-50 sessions all up.

Thanks for the info it's put my mind at ease abit more that I'm not just blindly trying to find out what to expect and what to do.

As always much appreciated :D
 
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