hello im a new member

[jazz'smum]

Hello everyone ,
I am Cheryl, jazz's mum,
I have joined your forum for knowledge, support and advice on my daughters epilepsy.
Jazz's had her first seizures and was diagnosed at 4 years old she is now 11.
We have had a difficult time controlling her absence siezures only having them controlled with meds for about 12 months.
She is getting worse and im not sure if it could be her age, we have tried an increase in her meds and add on kepra neither worked.
Very frustrating and quiet trying for her especially at school.
Regards Cheryl and Jazz.

[brain]

Cheryl

Welcome to CWE! I'm sorry that Jazz is having to undergo
all that hideous "E"'; but it might be possible that she could
be undergoing 'puberty'? Or it could be possible that the
anti-epileptic drugs she's on may be needing to be
adjusted - or could be experiencing allergies or side effects;
and when one becomes hard to control - it can develop into
refractory / intractable. Have you consulted with her Doctor
about this? We are not Medical Doctors here, but there are
many resources and options that you can look into. Has she
had a video EEG performed lately?
It may be possible that the anti-epileptic drugs she is currently
on may not be the right medications. There could be a lot of
issues there. But of course, there's a lot of other options
available, and like the Host, Bernard, has stated, "The well
has not run dry."

I am also intractable / refractory, been this way since birth;
and having been on many different anti-epileptic drugs and in
different combinations. It is not unusual for one to develop
a tolerance to the anti-epileptic drug or anti-epileptic drugs
after a period of time where another titration of medication
has to be tried, but of course, today - there are many
avenues to look into than there were back when I was
younger. Surgery, VNS, RNS (which is still in research),
Neurofeedback, and much more.

Hope all of these things help and I know it all must be very
frustrating for you and for Jazz too, especially now that
she is growing up. Seizures do change, especially when one
hits puberty.

[Georgiagirl88]

Hi Cheryl,

Welcome! This group is really wonderful..very knowledgeable and supportive!!
It has been such a big help to me! Hope Jazz is doing well and gets some relief real soon. I understand how hard it can be..I am rather new on meds myself and trying to balance it all out and gain control as well, so I wish Jazz the best! You will really find so much support here!!

Michelle : )

[skillefer]

Hi Cheryl! Welcome to CWE. We're a pretty friendly crew, so feel free ask questions. As for Jazz and her meds...she might be going through puberty...in which case, her hormones might be causing the increase in seizures. Her meds may need to be readjusted, and it might take trying several different meds. Just know that you are always welcome here. You're not going through this alone. Say hi to Jazz for us.

[BuckeyeFan]

You have found a good place for what you are seeking. As Brain noted, we do not provide medical advice, but we share our experiences, what has worked/not worked, alternatives you may here about, how E mixes in with other life aspects, etc... We also like to laugh when we get the chance.

It is great to have another Mom on board. We have many caring parents here. Personally, I started my journey with E at age 20. Now 47 with 3 kids and 2 grandkids (grandaughter just a little younger than Jazz).

Give her an extra hug from all of us at CWE tonight.

Don't be afraid to take a break here once in awhile. You caregivers deserve it. Have a seat and I will get the coffee.

[jazz'smum]

Thankyou for your friendly welcomes

Brain, you have mentioned a lot i didnt know..which is great! thanks.
I agree that the onset of puberty is what it would be the cause of change and increase in Jazz's seizures.
Jazz will be seeing a neurologist in July, the last time she saw a neurologist was a few years ago and had her last EEG about then also.
I wasnt happy with the neurologist as she kept insisting on Epilum and also tried lots of other meds, but always with epilum..which did not work and its side effects made Jazz quite unwell.
So I ended up back at paediatrition who put her on Ospolot which worked well for 2 years. Then with my sudden marriage break up Jazz's seizures returned, not many to worry about though up until now. The paediatrition has been great but he has run out of ideas on what to do.
So we will see what happens in July...Will be great to get some knowledge before i go, thanks to you all.

Hugs back from Jazz
Would never say no to coofee ..or chocolate.

Cheryl

[rfrench]

Welcome to the forum,glad to help you and you daughter cope in anyway.I had epilepsy when I was her age and can relate to the problems she is facing and will be facing. Any help I can be just give me a shout.We can beat this together

[RobinN]

Hi Cheryl - Welcome to CWE
My daughter had her first seizure at the age of 14. We went the med route for 1.5 yrs, and it was a nightmare. She is an athlete and this was an unacceptable answer to this disorder. My search was to find out why and not just cover up the problem with another one.

My daughters tend to be focused around her TOM too, so I finally found a neurologist that is helping us with prescribing a bio-identical progesterone. Rebecca also take a fair amount of magnesium and Omega oils, along with other vitamins and minerals.
She is also in the middle of neurofeedback training and this is most definitely a possitive therapy for my daughter. She has responded very well, and I think she will be considered controlled very soon. It is an exciting alternative.

I hope you find some answers for your daughter as well. Was she tested for Vit B6 deficiencies?

[kayakmom]

I am so sorry that things are rocky right now! I agree as well that hormones might be making things dicey! I hope you can get things to settle down. Keppra was not a good medication for my son either. TOpamax has been a huge help. Sleep, B6 and time has helped somewhat ,b ut not totally.

I hope you can find something to regain some control!

Ginny

[jazz'smum]

It is great to recieve so much support from you all .

I Hope we eventually find a neurologist willing to try other things. We will be seeing same nuero as last time.
No nuerologist didnt check for Vit B6 deficiencies RobinN, only did an EEG.
I asked to change nuerologist and they said no because of her records and that she's the top nuero ... so not very pleased.
The only way to change would be if i went to a different hospital, which i am seriously thinking of doing.
Where we live we have nuerologists but they wont see children under 15 so we have to travel Sydney to the Childrens Hospitals...2 hours away!

Thanks
Wishing all of you the best too .

[kayakmom]

I am so sorry that you have not been able to change to a different neurologist. I am not sure how flexible your care is there in Australia. We also have traveled that far for care and it is well worth the distance. (I have friends who have to travel 6 hours for their care!)

I also have been in contact with a family in Tasmania who has to Jet to the Mainland for their care for a son.

I am sure it is frustrating for you to have the doctors not listening...

I hope your next appointment goes better.

See if you can look for another opinion at a different office maybe. SOmetimes a fresh view is well worth it. Look into the Ketogenic diet.

GInny

[Wally]

Hi Cheryl

There is alot of info and experience available here. Are you keeping careful records of the seizures? A good doc will want to know many of the minor details of the seizures. ie. were her eyes open or closed, if open which way was she looking, what did she do with her hands, etc. Also remember stress and fatigue are the worst triggers. Medications affect us all differently and they may take time to be effective and it also takes time to adjust to any side effects. I met a girl a while back that was also on Keppra. She loved it, said she hadn't noticed any significant side effects. For me, I had lots of problems with it, but adjusted over time.

[jazz'smum]

Thanks Wally, i will keep a record and might also ask her school to write up a report as she is quiet behind in maths.
Jazz is only on Ospolot now she tried kepra (add on) and because it didnt make any difference better or worse to her seizures dr took her off ..maybe she wasnt on for long enough?

[tinasmom]

Welcome Jazz'smum -
It's nice to have you here.You will find a lot of support here. I hope you can find a neurologist that you like, we are on our 3rd one.

[brain]

Please click on the Banner and Logo below
For Epilepsy Action in Australia for more
assistance - they have a map for your
Providence in your region.

[RobinN]

I did not know about this until Andrew showed up on the doorstep. He shared his story and here it is:

New Kid on the block!

[Bernard]

Hi Cheryl, welcome to the forum.

... We have had a difficult time controlling her absence siezures ...

My wife used to have multiple, daily absence seizures. She completely eliminated them with EEG neurofeedback over 10 years ago. It also helped improve her overall cognitive function (ie. she could concentrate better and think more clearly).

... she kept insisting on Epilum and also tried lots of other meds, but always with epilum..which did not work and its side effects made Jazz quite unwell.

My wife also experienced strong side effects from Depakote/epilim/sodium valproate. It made her so drowsy she was practically a zombie.

Then with my sudden marriage break up Jazz's seizures returned ...

Stress is one of the major seizure triggers and I can imagine that was pretty stressful/scary for Jazz.

The paediatrition has been great but he has run out of ideas on what to do.

Well, hopefully the neurologist will be able to give you some better ideas. If not, you can always research some of the ideas you find in here.

Hi Cheryl...

Great to see you again Wally!

[jazz'smum]

Sorry im slow in replying i have been at work... a long weekend here and im working everyday of it.
I am very greatful for all of the information and story links you are all giving me, it sounds very promising after reading all your stories.
The success some of you are having with vitamin B and magnesium is amazing and i am so pleased for you.
Ginny i dont think we are as advance in care as much as you are there. I feel very sorry for your friends having to travel so far.
Not sure what EEG nuerofeedback is Wally i will have to look at that.
Brain i have saved Epilepsy action into my favorites ,thanks.


Cheryl

[Duvexy]

Welcome to the community as well. I just joined today too but I am not new to epilepsy. I have had it for 40 years and my meds are level but, I still have seizures. I really believe that my body come to tolerate the medicine. There is alot of information about epilepsy out there in this world. But, I can tell you what I experienced as a little girl. My mom told me that I had seizures when I was 5 and you know I can not remember them today. My mom has passed on. Bless her soul. Well, I was growing up I thought I was going to grow out because I had went many years with no seizures when they had me on just phenobarbital, no such luck. When I became a teenager the seizures started again when I reached puberty. All together now I have experienced seizures for 40 years. Long time.

[jazz'smum]

Welcome to you too Duvexy .
Thats is a long time to be having seizures, it's good you cant remember having them as a small child.
Jazz does ask how long she will need to take medication for and because she has heard and remembered the Dr saying she should "outgrow seizures."
I have told her the epilepsy could stay and we will do our best to control it with meds. She is very good about it .
Great support here,
All the best to you
Cheryl