Hi Everyone!

[Star_Mummy]

Hi!

My name is Tara and I am 21. I have a four year old son, Sean who has Myoclonic-Astatic Epilepsy. I also have a 7 week old baby girl, Tiarna. I live in sunny Australia.

Sean started off with Febrile Convulsions after his Measle Mumps Rubella immunisation. He was put on Phenobarbitone and Epilem to try and control them to no avail. He had grommets inserted to control his ear infections which in turn stopped his convulsions for 9 months due to him not having any tempretures during that time.

Late last year he started having afebrile convulsions and finally after 2 previous EEG's and an MRI he had an abnormal EEG reading. A few months after this we got the diagnosis. His fathers side of the family has a very strong history of epilepsy and so far it seems that Sean's is the worse out of all of them.

Sean also has autism and has severe relapses with his behaviour, language, motor skills and many other 'normal' behaviours. I never know what he is going to be like through the day. It all depends on how many seizures he has.

So far we have tried Phenobarbitone, Epilem, Tegretol, Lamictal, Dilantin and Topamax with no real reduction in his seizures. At the moment he is on:

640mg Epilem
75mg Topamax
180mg Dilantin
20mg Daily oral steroids
500mg monthly IV steriods.

He suffers from Tonic Clonics, absence seizures, myoclonic-astatic seizures, partial seizures and Non Convulsive Status. He really is a mixed bag lol.

That is pretty much a brief history of Sean lol. I look forward to getting to know you all as I dont know anyone to talk to about Sean apart from his Drs but I want personal opinions and suggestions not just medical.

Thanks for reading this and as I said earlier I look forward to talking with you all.

Tara.

 

[Meetz1064]

Hi Tara

hello and how do you do? You've found a great place here at CWE! Mr B has built us an AWESOME home.

I have honestly never heard of MAE til now, so I did a quick search online.
You certainly do have your hands full, with Sean, don't you? I have E, and I have a high functioning autistic son.....but you have a combination of E & A mixed.


I am curious as to why he's on so many steroids......is that to keep brain inflammation down, and to try to suppress the seizures?

Personally, I have had to change my diet to help my seizures. Mine are not intractable........but I lead a very busy life, and must be able to drive. Meds were not doing it for me. I've added in some vitamins, too, and things have gotten much better. It has been 5.5 years now since my last uncontrolled seizure.

Feel free to check out the nooks and crannies here. Mr B did a WONDERFUL job. There's plenty of people to meet, places to talk, and even and auditorium for your listening pleasure, and a library as well.

Buckeye should be around soon with some of his yummy coffee, unless Eric beats him to it, of course! They're both good guys, very helpful. Although, don't let them try to trick you into making brats and beer......

Take care!

Meetz
:rock:

 

[benrose]

Hi Tara

My name is Ben and I an 28 years old. I am now living back in cloudy London after relocating from sunny Sydney earlier this year (I do miss the weather).

I'm currently signed off work while I get used to the side effects of my new drug (Topamax 100mg daily) to control my epilepsy (along with Keppra which I am already taking 3000mg daily). I do feel for your 4 year old son Sean taking so many different drugs. You certainly do have your hands full with 7 week old Tiarna too!

Welcome to this site, Tara.

Ben x

 

[Bernard]

Hi Tara, welcome to the forum. :hello:

At 4 years old, it might be difficult to pursue alternatives to drugs, but have a look here anyway: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Make yourself at home here.

 

[RobinN]

Hi Tara - Welcome to CWE

I have a daughter with Epilepsy who is dealing with it without meds, by making nutritional changes, taking supplements for brain health, and neurofeedback.

I also have a son on the spectrum, so I know quite a bit about Autism.
You might look at this site for hope in recovery from vaccine injuries.

www.stankurtz.com

Check out the diet, recovery videos, and suggestions on doctors with knowledge on how this is accomplished.

This is also a good site, though will take you days to read it all:

www.danasview.net

 

[Star_Mummy]

Thanks for all your replies. Im slowly working my way around. Robin - Your right it does take days. Already from the threads that I have read I have a whole list of questions for Seans Neurologist next month so already you guys have been so helpful.
Seans autism affects what he will and wont eat. He only eats brown or white food like dry crackers and sauages and wont touch colorful or mushy foods like vegetables. I give him daily vitamins and he has a 'cup of tea' each day which is just sustagen (a meal supplement with added fibre and things)
Thanks again for all your replies.

 

[joan]

Hello and welcome. I have 2 kids with genetic E. Youve found a great spot for info and support.

Mentioning the food issues, and knowing he has A, have you looked into sensory processing disorders? Its on the spectrum for A.

GOod luck and happy New Year
joan*