Anyone take their child to Mayo for the diet just new at this

May 4, 2002

We are taking our son Hunter 2 to the Mayo clinic in Rochester. He

has been there before but that was before his seizures started. Now

we are going to see a specialist Dr. Buchalter. He is a ped.

neurologist and specializes in ketogenic diet. He doesn't have that

many seizures. Around 6 a month. He quits breathing on some of

them. We told dr.s that and I don't think the understood just what

I meant about not breathing. Absolutely not breathing for a min to

up to 3 min. We give him mouth to mouth but it is terrifying. The

last time we were in the hospital 2 weeks ago he had one of those

kind of seizures. the nurse was in the room at the time and saw him

and called code blue. I said it's ok he does this sometimes and I

took about 3 breaths for him and then he came back around. So

finally its was witnessed and documented so maybe they will believe

me now and give me a apnea monitor. I don't really know what kind

of seizures he has. I see all the different types on these boards

but the dr.s have never really put his in a certain category. We

are going to the mayo wednsday to find out if this diet will work

for him. He is on tegretol and I hate the fact that he sleeps all

the time. He has Cerebral Palsy and he needs to be awake to have

therapy and he needs therapy to progress. So I would love to get

rid of his drugs or even just cut back would be ok. I am really

scared about how hard this diet sounds. I am a stay at home mom

will 3 other children all school age but Hunter. So I would be able

to focus my time on this. I hope I can do it. I pray it will work

for him. He is the light of our lives and I would do anything to

make him better. If we don't do it no one will. And if we try it

and it doesn't work at least we tried it and we can move on from

there. Thank you for listening. It's great to see a board for this

subject. I think I am going to get all the help I need. Thanks, Amy

May 4, 2002

Amy,

Our daughter, Shan, is 7 years old and has had known seizures since the

age of 14 months (she is adopted from China). Up until last August, her

epilepsy has been completely controlled while taking Tegretol. Since

then we have been on the drug merry-go-round (Trileptal, Depakote,

Topamax, Klonipin, using in combination, back to Tegretol.). She has

right frontal lobe focal seizures which can lead to generalized seizures

if not treated. Last November a U.S. neuro pediatric specialist told

us that our daughter was not a good candidate for the diet because of

her age, but instead mentioned the possibility of surgery some time down

the road. Our daughter's seizures were rather cyclic while on Tegretol

and Topamax. She seemed to have every 2 weeks a day of 30 sec.

visible/shaking seizures every 2 hours that could be stopped with valium

but took about a week for her to recover from. Instead of trying

another drug (lamictal) we opted to try the diet here in the Philippines

where we live. We started the diet 3 months ago and we will never

regret it (we only regret not trying sooner). Our daughter has broken

the cycle of seizures and has absolutely no seizures during the day, but

does have 1-2 during the night (presently working on that with the

diet.). She is completely off the Topamax and she is down to 150mg of

Tegretol (was 600mg a day). We are seeing our daughter who has

struggled with social interaction and development delay all her life

(tegretol causing it?) begin to interact with other kids in a normal

way, playing with them instead of being restless and seeking mom or dad

out all the time. I presently home school her and I can see that she is

not struggling as hard to learn to read or do her addition. Thinking is

becoming easier for her. I just want to show our daughter to all the

neurologists in the world and say you CANNOT judge a child as a good

candidate until you seriously try, giving it your all to make the diet

as successful as can be. We are committed 100%. Doing the diet in the

Philippines would have set us up for failure if we did not have this

group. They (keto team in Philippines) don't know what they are doing

here. And for all the benefits our daughter and family are receiving,

the food preparations are a small inconvenience in comparison. What has

really helped us is the Stanford Meal Planner. We do all kinds of

creative meals with it.

One warning, as I research Tegretol on the internet, I am finding that

it may inhibit the diet from working at its very best. The diet works

similar to Depakote. When Depakote and Tegretol are taken together,

Tegretol causes Depakote to not be as effective. This is my own

conclusion from my research. Our daughter has responded great on the

diet, but we feel that we will never truly know the full effect of the

diet until we get her off the Tegretol. We are hoping that getting her

off the Tegretol will help with resolving the night seizures.

I've never been to the Mayo clinic, but I wanted to write you anyways,

especially in response to your comment about seeing if your son is a

good candidate for the diet.

I hope you have an encouraging appointment with the doctor in Rochester.

Keep us all posted. I'm personally rooting for you :-).

Rhonda

Philippines

May 4, 2002

Amy,

Welcome to the group. My daughter, Katera, had the same kind of seizures. Her

first ones were at only 17 days of age. She just stopped breathing for about 2-3

minutes. I know how scary it is.... especially to see them turn gray-blue. We

were told, once they knew for sure that she was having seizures, not to worry

about her starting to breathe again because the autonomus (sp?) nervous system

kicks in at about that 2-3 minute point and the kids will automatically start to

breathe on their own. They said that you can, in fact, sometimes do more harm

than good by trying to resucitate because you can blow fluids into their lungs.

Naturally, you would breathe for a child that was in a situation where they were

not going to start breathing on their own but they assured me that, with her

seizures (basically " grand mal " type), she would not start breathing any sooner

if we tried that. When you get to the Mayo, you might ask them about that,

though I'm sure there may be different types of situations so I'm not meaning to

say that I know for sure that yours is the same. We never needed an apnea

monitor.... the neurologists were right, she always started breathing on her own

after that length of time. You don't say how old your son is. I found that

Katera's seizures changed as she got older and she did actually start having

ones where she would breathe through them, very shallowly, and not turn so blue.

Katera was on meds for her first four years, including Tegretol. That drug was a

nightmare for us. It caused an increase in seizures for her over time and

finally she ended up having a really serious reaction to it. It's a nasty one!

The diet has been so worth it for us. She's been on it for 18 months now.....

off all meds before we started the diet (another long story that I won't go into

right now). She just now, this evening, had a mild seizure (we think she is

starting to run a fever and that sometimes happens at the beginning of an

illness for her) ..... but this is only the SECOND seizure she has had in one

full year. Not a bad record.

The diet is not easy at first..... and sometimes drives me nearly crazy even

now.... but it is very do-able and very much worth a try. The support you'll get

here will be the best. Ask away if you have any questions.... these parents have

a wealth of knowledge.

Patti, mom to Katera, age 5.5 (partial ACC, microcephaly, global delays,

tethered spinal cord- surgery happening soon??) Keto Kid since 10-10-2000... in

Washington state.

Anyone take their child to Mayo for the diet just new at

this