Hi , looking for help please

[unclearthur]

Hello and greetings from the Emereld Isle (Ireland).
Looking for guidance and advice about how to help my 17 year old. He has complex partial seizures for the past few years as a result of
a condition called Neurofibromotosis 1. He is currently on 600 mgs of Tegretol twice a day for the past year and is not under control.
He averages about 2 seizures a month and these are always accompanied by severe stomach pains for days afterwards. Now, his diet is my latest
area for investigation. He does consume a lot of Cola and sweets and little if any fruit or veg or milk.I read somewhere that caffeine does not go well with
Tegretol and am trying to eliminate it from his diet.So he has agreed to cut out the Cola and start taking milk and some bananas (potassium) into his
diet.Can anyone add anything to the diet list that I should try or should I start slowly with his diet changes.
God Bless you all and your wonderful website.
Uncle Arthur.

 

[Loudmouth]

Possibly ADD magnesium supplements and SUBTRACT gluten.... RobinN should have more info, and a clearer way of ecxplaining it all, my minds a bit foggy today, I probably wont make great sense lol.

 

[Shelley]

Hello and welcome

Sad to hear that your son has Neurofibromotosis 1. Do you know what caused it?
There are plenty of diet threads here to get you started, and lots of diet and supplement Guru's to help guide you in the right direction.
While the decision to give up sodas and sweets is in the right direction, IMHO, milk and dairy is not a good idea.
How to get a child to like fruits and veggies? Set an example. Do you eat lots of fruits and veggies?
Also, don't treat him any differently than you would if he had no neurological difficulties. He is still the nice young man you know before the diagnosis.
Good luck and feel free to browse the forum.
Ask about the Modified Atkins Diet, the Glutamate Aspertame Restricted Diet, and look into the Ketogenic diet.
Soon, a moderator will greet you and point you in the right direction.

 

[Bernard]

Hi UA, welcome to the forum. :hello:

... He averages about 2 seizures a month and these are always accompanied by severe stomach pains for days afterwards.

I would think that is significant. Search the forum for "gut brain" and you should find a lot of interesting information.

If the stomach pains are related to a celiac condition, dairy might not be a good idea. Click the link in my signature for the chart and then click on the GARD diet for information on a diet that is often used to treat celiac disorders.

 

[unclearthur]

NF 1 has no real impact on his life except that he suffers the seizures. NF1 was passed down from his mothers side,
a lot of his cousins have it as well. Regarding the diet, we eat a normal amount of fruit and veg. The neurologist was
dissmissive about his bouts of nausea and stomach pains so I thought it a good thing to investigate his diet.
Unclearthur

 

[Nakamova]

Hi Uncle Arthur, welcome to CWE.

It's an excellent idea to cut out the colas, both for the caffeine, and for the sugar (or for the fake sugar if they are diet drinks). If you or your son can keep a seizure diary, that can help as well in terms of isolating potential triggers. Keep track of when the seizures happen, along with diet/nutrition/metabolism, exercise, sleep, and any other physiological stresses.

Best,
Nakamova

 

[BuckeyeFan]

:cheers:

Welcome Aurther.

You have come to a good place for support and info. You are one of those great parents who come here to help their kids, though it seems to be more Moms than Dads. I applaud you.:clap:

Grab a cup of coffee and explore the house. Lots of diet information here.

:cheers:

 

[unclearthur]

Hi Uncle Arthur, welcome to CWE.

It's an excellent idea to cut out the colas, both for the caffeine, and for the sugar (or for the fake sugar if they are diet drinks). If you or your son can keep a seizure diary, that can help as well in terms of isolating potential triggers. Keep track of when the seizures happen, along with diet/nutrition/metabolism, exercise, sleep, and any other physiological stresses.

Best,
Nakamova

Will do Nakamova. Thanks for the advice, it really is a tough road, you have the best of days, you have the worst of days,but you have to keep plugging away. Will keep the diary going and we are seeing the Neurologist mid December. Many thanks to you all.
UncleArthur