Re: Re: I need advice please--Bobbi

[Guest guest]

Bobbi,

I have to agree wholeheartedly with Cammie about the Depakote. Oh how I

wish our first keto team had been Cammie's--they were of the mindset to

keep all the med's (my daughter was on Depakote, Lamictal and Zonegran)

in place until we had control. But I felt so strongly that the drugs

were making her worse that I weaned them anyway (not in any way advising

that you do this) and that is when control started to come. The depakote

was a long tough wean and we've had many ups and downs. It's hard to

say if the wean was responsible for a couple really rough patches, but

after one of them, I did end up introducing keppra (kinda wish we'd

toughed it out a while longer, until the depakote was gone for awhile to

see if the diet could stand alone). At any rate, my little girl has her

quality of life back--we still struggle with sleep activity, but overall

she is sooooo much better. A short awake eeg two weeks ago was nearly

normal. We aren't out of the woods, but I'm so glad I opted for the diet

over the depakote that left her barely able to function (she was on much

too high a dose for her)--one of the first things our new neuro said was

that depakote and the diet aren't a good combination (which I'd read

over and over, but her first neuro " never heard that " -yikes!).

Do you feel that the depakote ever helped? In our case it only did for a

very brief time at the beginning--other than that, for my daughter it

was a very bad choice. How about the diet--have you seen any response

at all? We had a very brief initial response but, again, nothing lasting

until the weans.

Re: the osteoporosis--couldn't the depakote be as much the culprit as

the diet?

Good luck,

Barbara

cammie562003 wrote:

> Bobbi,

>

> You've been at this longer than I, so I'm not sure I should be giving

> advice but here's my thoughts for whatever they're worth.

>

> Both the Depakote and the diet can be hard on kidneys. It's hard to

> say if it is one or the other or both that might be the culprit for

> your son. It would be my guess that if it's one or the other, the

> Depakote is doing more harm than the diet. Has he any kidney

> function tests done? What is your medical team saying about this?

>

> My daughter was on Depakote alone and in combination with several

> other drugs for about 10 months. In hindsight, we know that it

> didn't help her seizure activity much. It caused lots of other

> issues, but for us, kidneys weren't affected. When we first met with

> our keto team, they said they wanted to drop the Dep. when we

> initiated the diet. We had talked to other keto teams that wanted to

> wait to wean meds until seizures decreased significantly or stopped.

> OUR team said that often doesn't happen. Our daughter has been

> seizure free since initiating the diet a year ago. I really believe

> that stopping the Depakote made a huge difference for her.

>

> I would talk with your medical team about weaning the Depakote and

> giving the diet a chance to work alone. It may be that you have

> reached the point where the two cannot be on board at the same time.

> 2 1/2 years of both is a long time. It's likely that you will see

> withdrawal seizures if you do decide to wean... but, maybe not. I

> think it would be worth it to see if the diet can control seizures on

> its own. If not, then you know for sure that the diet's ability to

> work wasn't being messed up by Depakote. It seems that the diet is

> doing something since his seizures are better now than pre-diet. You

> will probably have to do some adjusting of the diet as he comes off

> Depakote. If you were to do the diet alone for a while without

> success, you could add back a more " keto friendly " med in a small

> amount and see if that would help. If that didn't help, and you

> decided to stop the diet you would know that you had given it a good

> try.

>

> Is he taking a chelated or highly absorbable form of calcium? I'm

> assuming you are supplementing adequate magnesium and phosporus (but

> not too much of this) and all of the trace minerals. Is he having

> problems with acidosis at all? Some kids get too acidic on the diet

> and that can be very hard kidneys, too.

>

> I wish you well in your decision making.

>

>

>

>

>

>

>

> > Hi,

> > I haven't posted in a long time. My son has been on the diet for 2

> > 1/2 years today. He is having trouble with his kidney's now. He

> > already has osteoporosis due to not absorbing the calcium

> > supplements. I am starting to worry that I'm harming him by keeping

> > him on the diet. He is 5 years old. He is still having 6-8

> seizures

> > a week give or take. Still much better than pre-diet. He has

> > remained on depakote and we have had to increase 2 times in the

> last

> > 6 weeks. I am so scared to stop the diet but also scared of how

> much

> > more his little body can take. He is mostly non verbal so he can't

> > tell me what he wants. He understands though, that's the hard

> part.

> > I am so depressed and worried about him. I feel like I'm stuck

> > between a rock and a hard place. Any advice would be welcome. I

> just

> > want what's best for my little boy.

> > Thanks,

> > Bobbi

>

>

>

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