Whats happening to my little man ????

[Liza Mcguinness]

We are very new to all this my little man Scott has been recently diagnosed with Myclonic epilepsy. He has very frequent drop attacks which we are finding very hard to control. I suppose absolute fear is only natural but my fear is only for him. Not a day passes just now where my fear turns to terror of the unknown and frusration in relation to everthing surrounding the situation. Un answered questions different answers from different proffessionals and still frequent drop attacks finding even brushing my teeth overwhelming while my little man seems to be taking it all in his stride.

 

[POSITIVEPERSON]

Hi Liza welcome to the board , I am sorry to hear about Scotts szs. I am 51 and have had epilepsy since I am 11 yrs old. For the first 24 yrs I was controled and than had
problem from 92 on and off. I never gave up up hope of having sz control . I now have sz contorl with homeopathy and the gard diet and I am up off meds which seems odd .
If you have any questions feel free to PM me.
Riva

 

[Liza Mcguinness]

Thanks for the welcome am delighted to hear about your seizure control , i would love to hear about alternatives to the meds for Scott have an appointment schedualed with neurologist next week any advice as to questions relating to his treatment would be welcome just feel realy lost at moment. He is on three different meds 2 of which he had a major relapse on cant understnd why they are still part of the regime. I know it takes time to ween off but surley some plan needs to be in place also what happens in the event of another relapse will they just add in another med ? Cant be good for wee mans system also heard about interactions increasing seizures none of this was explained to me so i would love to go in armed with information if you have any suggestions ?

 

[Birdbomb]

Welcome Liza Mcguinness!

You know, knowlege helps to remove fear. Learn all you can about your son's condition and about the different kinds of treatments. Being paralyzed with fear of the unknown wil not be helpful to him. It's hard to watch our children deal with things we don't understand. If you keep a "matter of fact" attitude it will help him deal with it better.

How old is Scott? Kids are so resiliant! They seem to take things in stride much better than adults!

 

[Liza Mcguinness]

Hi

My Little man will be 3 in November and your right he is so resiliant and brave he dosent let the seizures get in the way of his day. I think this makes it harder looking at my beautiful little boy going through this. i have been researching his condition cant find any positive outcomes or good prognosis think our world is about to come down

 

[Birdbomb]

Have you tried the Ketogenic Diet

The success rate is pretty good, although it a bit restricitive.

 

[Bernard]

Hi Liza, welcome to the forum. :hello:

It can be a very frustrating and anxious time when seizures are not controlled. I've been in your shoes when Stacy (my wife) was having full grand mal seizures once a week. I was always jumping at the slightest noise in the house to make sure she wasn't having a seizure or needed help. You will likely reach a point where you finally accept that what will be will be and you can only do your best and the stress of worrying will just disappear - I did. Then again, Scott may get the seizures under contol before you get there and that's fine too.

There are a few alternatives to drugs that you can discuss with his doctor. The ketogenic diet is a traditional one although recent research is showing that less restrictive diets like the modified atkins and low glycemic can also be effective. You can find more info about the diets in the chart I made (see link in my signature).

 

[Blessed]

Hello Liza and welcome. I am 39 and I have had JME (juvenile myoclonic epilepsy) since I was diagnosed at 14. I began having the jerks a few years before my first tonic-clonic seizure so I probaby should have been diagnosed with JME earlier. Just wanted to let you know I am doing well today. What are Scott's symptoms? Please PM me and we can talk. There are other options besides medication. I am also a mother of 3 boys so I know how hard it is to see your children suffer. Scott sounds like a real trooper! :tup:

Blessed
25 mg. Zonegran
Homeopathy
Juvenile Myoclonic Epilepsy since 1982

 

[1096]

just don't let him know your that worried, though. it will depress him. well it might.

give him lot's of love! hugs!

all you can do is research it and get to know what you're dealing with. bernard and birdbomb and the rest of the team here have a lot to offer, so take all you can (it's free, rofl ). google is also your friend but forums are better, this one especially!

just make sure you know and he knows he's not alone! so many people with epilepsy... of some soughts.

there was a segment on todaytonight that covered a similar case, poor little guy was having 50+ drop attacks a day. they said his body (5 year old) was taking as much damage as a seasoned professional rugby player. probably kajun.

 

[POSITIVEPERSON]

Liza how can I help you? If you have questions about homeopathy, or the GARD diet I will be happy to answer any of your your questions. I use both. I started with homeopathy and slowly weaned my meds down . The homeopathy Drs (since a I asked a few) said they couldn't get me off totally the meds because I didn't come to them as a child. So I went on the Gard diet and was able to drop the last tab of mysoline.And the icing on the cake with diet I am feeling so much better.

Riva

 

[RobinN]

Hello and Welcome.
I too have been worried for the past year since my teen daughter had her first seizure.
It is imperative that you learn all that you can.
When we went to the neuro after the first two seizures, I asked if diet or hormones could play a part in a seizure disorder and he said NO. I have since learned differently.
You must trust your instincts, keep a calendar of events, and what is happening in his life. Great info to find, but it does take a lot of patience to weed through the pages.
You have found a safe place to pull up a chair.

 

[execwife2002]

Liza,
As a mom I can relate to your feelings. My son 19yrs. old started having seizures just at the start of adolescents (12 1/2). I too jump up and run like Bernard said he use to do everytime I hear a noise when my son is sleeping. I keep a baby monitor in his room because most of his seizures are nocturnal. I keep educating myself and my family. My Dr. recently laughed when I asked a question. He laughed because he said he hears it all and some of it is ridiculous. My husband and I think the world of him, but we told him we will continue to ask as we know our son better then he does. We know he knows his specialty epilepsy better than we do so it's important that we continue to support and work as a team. Dr. agreed.
Marian