Thinking it might be time for meds....

[Loudmouth]

My 11 yr old daughter was diagnosed with epilepsy 2 yrs ago, but between the peadiatric neurologist and me, we decided to adopt a 'watchful wait' stance on medication. We cut all artificial sweeteners out of her diet on the advice of the neurologist, and that helped, as did when we all went Gluten-Free for my 7 yr old son's coeliac, but over the last few weeks I and the school have noticed a marked difference. Now as she is 'developing' in other ways, I am assuming her hormones are probably playing some part in this, but her absence seizures are really increasing in frequency, and last week, she had one at the top of the stairs, and if my friend hadn't been there to catch her, she would have fallen down. Also last week, she was at school in her english class, and there was a faulty flourescent tube that was flickering. Now she really doesn't like to make a big thing of her epilepsy in front of her classmates, but it was giving her a headache and making her feel sick and woozy, so she asked the teacher to turn it off. The teacher did, but as the lights in the class are all on one switch, the class had to work with NO lights on!! I'm thinking, grudgingly, that it may be time to go back and start on the infernal merry-go-round of epilepsy meds....Just can't bear to see her have to put up with all the darn side effects, as I know first hand what it's like...

[Meetz1064]

putting her on bio-identical hormones? Have you considered that? RobinN knows quite a bit about that.

But putting her on meds probably is a good idea....

[Nakamova]

Any chance she could try neurofeedback as well?

[RobinN]

Have you considered a low grain diet such as MAD or LGIT? If she was doing well in the beginning on GF, perhaps this was an indication. It is my intuition that it is more about the reducing the simple carbs, and increasing the veggies. Have you eliminated casein as well? ... and soy? Limit all sugars except fruit.

Really pushing a clean clean diet. I know it isn't "fun". However the improvements are worth it.

[Loudmouth]

It's impossible to police it at school, she cadges food off her friends. It does seem to tie in with her starting to 'develop' though. No chance of Neurofeedback where we are, I have an hour and a half train journey with 2 buses either end just to see a neurologist/ paeds neurologist at the mo, our local area doesn't have one at all right now as the last one retired and wasn't replaced. And hormone therapy seems unlikely too, remeber NHS patient in UK, it's quicker and easier to dump us on pills when there isn't even a neurologist to help us. we go see the neurologist once a year the rest of the time the GP has to deal with it in a 5 mins appointment....it's basically pills or nothing here. AND I've read a brief article somewhere (can't remember where) that soon in the uk we will not even be able to buy things like magnesium etc as it's covered by this 'alternative therapies' that the EU have banned!

[RobinN]

There are enzymes that you can give that help to break down the proteins that the body can't seem to on it's own. However she is old enough to begin learning how nutrition can help her situation. Why do you think she "cadges" (I dont' know that word) food off of others? Does she not have enough choices in hers? What does the school do with children that have peanut allergies? Are they more watchful over them? Treat this in a similar manner. It really isn't that difficult to manage. Do you perceive it to be?

I personally would consider hormones at such a young age. You can monitor estrogen rich foods though. Soy, many dairy products, too much sugar in the body can burden the liver and the body converts it somehow into estrogen. So white flour diets turn into sugar, potato has a higher glycemic index than table sugar, banana... all are converted to glucose.

The US has attempted to ban alternatives too. Probably will... once we are "reformed".

[Loudmouth]

Peanut allergies are taken very seriously, as are egg and dairy allergies, but a GF diet.....hahahahaha. I've had to educate the primary school my 7yr old with coeliac is at, and even provide them with a lot of the food for him for the first 6 months (despite the fact that,me being unable to work and on benefits, he was entitled to free school meals). They've improved now,though. Trying to get the secondary school to understand that my daughter is on a GF diet to help with her seizure control is falling on deaf ears though as her peads neurologist is refusing to back me up with a letter (he doesn't believe a GF diet can help lessen the amount of seizures), even though I can prove through seizure diaries that it has. Without the letter, my only option is to send her with a packed luch ( only 5 out of 1700 children DONT eat from the cafeteria, kind of marks her out as different!) or put up with the food that's on offer in the canteen (all nutritionally balanced, but none of it GF). When I send her with a packed lunch, she bins it and cadges (can mean many things, this word-borrows/steals/takes, in this situation borrows) money from her friends and buys food from the canteen as she doesn't want to appear different. The school say the can't police this as it's not a genuine allergy.

I personally don't find the GF diet difficult to manage, you can eat most meals with a few simple substitutions, and you can bake GF cookies and cakes etc, it's just over here GF is a side of food allergies/intolerances that is only just really becoming public knowledge. It's the equivalent of someone having a peanut allergy in the 60's...

[RobinN]

I am so intrigued that since you have a son with coeliac disease, you have seizures, your daughter has seizures.... there is a strong indication that this is a genetic sensitivity. Your issue is that it has to be diagnosed, which I have read many places is difficult to do. Do they do gene testing?

[vapour]

LoudMouth, I am a brit, however I live in the US and i am having problems with medical care atm out here as I have no insurance. I am extremly glad I read your post as I was at the back of my mind considering going back to the UK because of epilepsy...and was told after I contacted my old GP a neurologist was about a 3 month wait. I had no idea after that you only saw them once a year.....now Im definatly staying put out here.

Makes sense though.. years ago when I lived in the UK I was seeing a psych i only got to see maybe 3 times a year, they also had me on a waiting list for an EEG.

[vapour]

anyway, I will be trying alternative stuff here soon. I really hope you find the best treatment solution for your daughter.. I dont know what advice I can give regarding UK as I have almost forgotten how it all works... when I went online to search a Neurologist.. all that came up were private hospitals....and when I searched epileptologist nothing came up at all ( very sad...

And why the heck are alternative treatmens being banned ?

[Loudmouth]

Don't ask me, it's the European Union that's banned it, the british don't run britain anymore lol. Robin, what you say about the genetic link, of course I've considered it, my mum was diagnosed 20 years ago with ulcerative colitis....turns out she was misdiagnosed and actually has coeliac as well!! Sooo....Paternal Grandmother has epilepsy, and my mum has coeliac. I have epilepsy and suffered badly from IBS (misdiagnosed coeliac??) until we all went GF (no IBS type problems since), my daughter has epilepsy, and one of my sons is coeliac. Yet the doctors say there's no link with it all....

Vapour, the service you get when you have epilepsy really does depend on what area/PCT you would be looking at. My local one is AWFUL, but my PCT is about £25 MILLION in debt at the moment, plus they are extending the local children's ward and A&E because our town has doubled in size in the last 5 yrs, so any speciality treatment is done 'out of PCT area'. Yet I know of other areas of britain, like Bristol for example, where the service is absolutely excellent, there are a team of 3 neurologist's there, and one epilepsy nurse for every 50 patients with Epilepsy. So I really do think it depends WHERE in the UK you are looking at, and doing research on what services are available there.

[RobinN]

Your doctors are absolutely misinformed. There is a clear relationship. Many of those medical articles are posted here on CWE. A search will pull them up.
If one person has it in the family it is 1:10 chance others do too.

I just sent my son a link to a home test kit. Not sure if it is perfect, as I have heard this is difficult to test for, but worth it I guess.

http://celiachometest.com/en/test/video/

[milkymum]

Loud mouth I am in the UK and the neurologist that EJ is under is 100% behind trying diets and other alternatie methods to help children with any form of epilepsy and he will see a child 2-4 times a year in his clinic sometimes more if he needs too. Where abouts in the UK are you? Also ask to have your daughter refered to a dietition the school can't ignore the diet then as if they do they are going against the dietition which seems to be a big no-no. My LC is on dairy diet and it took me over 6 months ot get her old school to stop giving her diary but her new school are so brilliant. They got me and my hubbie to check over all the foods they us and to write down what ones was not suitable for LC. I know it is harder with gluton free diet as nearly everythign has gluton in. But we have already s[poken to the school my older 2 are at as EJ will be going there in 2 years and I want to start preparing them fo rhim coming in because of the epilepsy and the diet he has. I was told that if the school could not cater for LC's dietary needs then they would of written to the benefits department fo her free-school meals and asked them to send me the money as I am supplying them her food. Because all I supply is LC's milk, cheese and yoghurts they give me some money every half term to pay for the milk as they don't see why they should get paidfor giving LC milk when she is not having school milk at snack times

[Loudmouth]

Milkymum, I'm in north-east essex, and at the moment our PCT doesn't have an adult neurologist, much less a paeds neurologist, we have to travel to inner London to see a neurologist, and we get an appointment once a year as we are 'out of PCT area'( that's all my PCT will fund). My coeliac son has only seen the dietician once in April, and won't see her again until April next year, let alone getting a referral for my daughter, who I have on a GF diet for 'personal reasons' as the LEA put it. My daughter also has a bladder problem, and she has been on the waiting list for the enuresis (bed-wetting) clinic since she was 4. She is now nearly 12, and they just phone me once a year to say do I still need her on the waiting list. My last call from the enuresis clinic was 3 weeks ago when I was told that she is now number 3 on the waiting list, but as the PCT has withdrawn funding, there will no longer BE an enuresis clinic in our area, for at least the next year, but they will keep the waiting list open...my PCT is over £25 MILLION in debt, they are cutting back on EVERY service except A&E children's ward and geriatrics. Even cancer patients face a 80 mile round trip (40 miles each way) for chemotherapy at the moment.

SORRY! rant over lol. The LEA ARE now providing GF foods for my 7 yr old son with Coeliac, but they point blank refuse to for my daughter as it was only a 'suggestion' by the neurologist, and I don't HAVE to follow it...

[Loudmouth]

Also, I don't know the ages of your children, but it sounds like all yours are still at primary school. I have personally found that while the primary school was not TOO bad with dietary restrictions, my Daughter is now at secondary school, and it's a whole other kettle of fish in a school where the canteen deals with 1700 children every lunchtime...AND they get teased if they bring in their own packed lunch rather than use the school canteen, along the lines of 'your mum must be a right scaffy cow if she wont even give you the money for hot food....", I live in what I suppose you would call quite a 'well off area' to the point where almost all of her 11 year old friends carry around CONTRACT mobile phones (not pay as you go, like she has, and top of the range phones, almost all take their OWN laptops to school...), unfortunately, due to my own epilepsy, I can't work, or afford those things for her. Only 1% of the children at the school are in receipt of free school meals...

[milkymum]

Loud mouth I am ever so sorry I course you distress with my post. Things are so hard and I completely understand your rant from my post. I would of done the same thing. Huge hugs and I hope you can get something sorted out soon for your daughter to get her epilepsy back on track and controlled again. By the look of things the NHS need more staff to deal with quite a lot of areas of specialist care.

[Loudmouth]

You didn't cause me any distress, dont worry. Just annoys me that my PCT doesn't fund for hardly any specialities at the moment, it's like we are living under a third world medical system. I've tried to get health insurance to go private but because I've got pre-existing medical conditions, I can't get cover. It's like there's no-one there to help us.