Re: Frustration Setting In....- Bill

[Guest guest]

I am the same . I had that thought but then we used the cal-mag-zinc

(finally got it!), had 2 HUGE BMs on her own that day and then- BAM- a seizure

that night. Maybe whatever toxins get through from the transverse colon with

constipation had already gone through. Who knows....

I won't be ditching the diet OR the husband, and he knows better than to try to

make me choose.... = )

My husband is the best man on earth. He is a medical doc's son and hates seeing

his little girl seize. It is taking some adjustment for him to go along with

this " non-medicine " approach but my father-in-law has been very supportive of

the diet and my husband has committed. It is just hard when we are making the

medical decisions without being able to reach our neuro. We have a non-keto

neuro who we have had pre-diet who is great about returning calls, etc., but

he's not willing to make diet decisions for obvious reasons, and his solution to

seizures is " more meds " . I am so sick of these meds that I could scream, so why

call him???

Thanks so much for letting me vent. Without the people in this group, I would

be really lost!

Re: Frustration Setting In....

Just to follow up. I am not sure if you are the same , but if you

are the one who mentioned having trouble with constipation, then that

could easily explain why you were sucessful at the beginning and are now

having difficulties. Think about it. The diet works by having food

ingested and digested in a regular fashion. That doesn't happen with

constipation. You will get pretty universal agreement that the diet

doesn't work if constipation is severe.

Bill

p.s. Ditch the husband, not the diet. Just kidding.

tuckerwing@... wrote:

> Langan had another seizure at 5:30am today. I am so frustrated. On

> the positive side, her next urine output (at 7:45am) showed very low

> ketones so maybe there is the clue as to what is going on. On the

> negative side, this is more seizures than we have had EVER since

> getting diagnosed, they are lasting long enough to require diastat

> every time, we went from using diastat twice in a year to using it 3

> times a week and I hate that AND this seizure was 9 1/2 hours after

> her last lamictal dose so that theory gets thrown out of the window.

> Ugh. My husband is ready to throw in the towel but I am not a

> quitter and I feel in my heart that this can work for us. 16 days

> seizure free was not my imagination, and during that time Langan's

> ketones stayed high. Now we are having trouble keeping them high in

> the early morning hours and, while I know that is somewhat normal, it

> is when the seizures seem to be happening. SOOOO any bright ideas?

> We raised the ratio from 3.4:1 to 3.6:1 and she has been on the new

> ratio only one day. She is still on 75mg of lamictal a day, 25 mg 3X

> a day. I was going to wean but decided to wait and get the ketones

> consistent first. Who knows if that was the right thing or not.

> Would changing her fat source help? We mainly use cream, butter and

> corn oil for her fats. Did I imagine reading somewhere that there

> are different kinds of fats and some break down slower and keep

> ketosis longer? Anyone an expert on that stuff? If only I had known

> about all this way back I could have skipped law school and gotten a

> degree in chamistry and maybe I would sort of understand this

> stuff.... ; )

>

> Can someone please tell me that this is not the time to give up hope

> and that those 16 days meant SOMETHING....

>

> Thanks!

>

> , mom to Langan, 19 months old on Friday and 3 weeks on keto

>

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

>

>

>

[Guest guest]

That seizure might have been from getting all of those extra calories

when the dam broke.

When I pushed to get rid of the meds and the doctor wasn't totally

agreed, my daughter was ejected from her group home. She was only

allowed back in several months later when I finally managed to wean her

completely from the medications. Then there was nothing to disagree about!

We find ourselves at war with the rest of the world.

We are the first patient for our keto team so they aren't too

knowledgable, but do their best.

We can't give precise answers as so much is unknown about the diet. We

can only tell you our own experiences.

Bill

Tucker wrote:

> I am the same . I had that thought but then we used the

> cal-mag-zinc (finally got it!), had 2 HUGE BMs on her own that day

> and then- BAM- a seizure that night. Maybe whatever toxins get

> through from the transverse colon with constipation had already gone

> through. Who knows....

>

> I won't be ditching the diet OR the husband, and he knows better than

> to try to make me choose.... = ) My husband is the best man on

> earth. He is a medical doc's son and hates seeing his little girl

> seize. It is taking some adjustment for him to go along with this

> " non-medicine " approach but my father-in-law has been very supportive

> of the diet and my husband has committed. It is just hard when we

> are making the medical decisions without being able to reach our

> neuro. We have a non-keto neuro who we have had pre-diet who is

> great about returning calls, etc., but he's not willing to make diet

> decisions for obvious reasons, and his solution to seizures is " more

> meds " . I am so sick of these meds that I could scream, so why call

> him???

>

> Thanks so much for letting me vent. Without the people in this

> group, I would be really lost!