Re: just had neuro appt...

[Guest guest]

,

Adding my 2 cents..... I think there's some things you can do to tweak this diet before consenting to add more medications. The first thing would be to dump the Nutrasweet. Pop in general tends to make the body very acidic and is high in phosphorus which can cause leaching of calcium from the bones. Then the Nutrasweet (aspartame) is very toxic to the brain for a lot of people.... not just kids with epilepsy. It's a synthetic chemical containing substances called "excitotoxins" that are just plain not good for anyone. Alternatives she might find just as satisfying might be plain Koolaid powder (lemon-lime and black cherry are the two truly Keto friendly flavors, although I've used the plain lemonade Koolaid for Katera for the past year with no problems), sweetened with Stevia.... which is a totally natural, carb-free, calorie-free, Keto-friendly sweetener that is available in natural foods stores. If she really wants the bubbles..... maybe you could add some plain club soda (which also helps with acidity for lots of the kids).

I didn't see what ratio she was on.... so don't know what to say about that. Are there any other processed foods, additives, colorings, etc, that you might be able to eliminate.... just to see? Are you using any oils, or just cream and butter?

I know you mentioned maybe wanting to wean the phenobarb.... but just thought I'd point out that there've been a few kids here that have had some dandy withdrawal seizures right at the end of weaning that one..... probably not uncommon to see that with other meds, too but I just remember that. We weaned Phenobarb way before the diet and didn't have any troubles but we sure did with Tegretol.

I'm sorry to hear you didn't have a better EEG report. I really have to agree with some of the others on saying that you might just not get really good seizure control until the meds are gone. It sounds like your neuro is not too open to that approach but wouldn't it be great to be able to see what she was like on JUST the diet? Wish there was a way to do that without going through the dreadful weans.... I don't know.... the idea of adding another med to what she's already on just seems wrong somehow to me

[Guest guest]

Dear :

Of course I understand and I realize that each decision can be overwhelming to say the least.

I'm sure I would have never heard of the diet had the drugs worked for .

As far as the acidity goes (and each child is different) 5 seems pretty acidic to me-but others, I believe 's Jess seems to be able to handle it. We find 6 to 6.5 a really good place to be.

I wish you the best in your decisions and I am sure you will make the best decision for your precious little one.

Hugs

Diane

just had neuro appt...> > > Hi Everyone,> Ally (4 1/2) just had her ped neuro appt w/EEG> yesterday,> and I am saddened. On the diet, she has less seizures> (usually only while asleep now), but her EEG showed a> large> amount of epileptiform activity. Her neuro is concerned> that this puts her at risk for future status, problems,> etc.(she has spent 2 weeks in hospital in nonconvulsive> status). Two weeks ago, she had breakthrough seizures,> but> this was probably due to an infection or antibiotics.> He wants to add Keppra to the mix. She is already on> Topamax (275mg) and phenobarb (60mg). I just don't know> what to do. I was hoping to DECREASE meds, not add a> new> one. Ally has very large mood swings, and the neuro> thinks> this may be all of the abnormal brainwave activity. I> thought it was either acidosis, too high ketosis, or> generally not feeling well.> He offered other options, such as dextromothorphan (a> shot> in the dark, basically) or testing for creatine> deficiency.> Here's my thoughts...> 1.She drinks diet pop, so I thought to stop that (altho> she'll be VERY unhappy)> 2. start EEG biofeedback, wait to add Keppra and see if> this helps> 3. reduce ratio in case she is too ketotic (I'm having> trouble deciding); her blood ketones were "moderate"> 4. make no changes and wait to see if increased EEG> activity is "leftover" from breakthrough seizures, it> took> her 8 days to stop twitching (I don't know if this is a> possibility, but I am hopeful)> Help! What are your thoughts???> Thank you for being here> , mom to Ally and Lexi> > __________________________________________________>

[Guest guest]

,

I am also disappointed and sad for you. We are in a similar situation. has had no break through siezures on the diet (since May 2000), but his EEG still shows a lot of activity. For him, diet soda has made no difference in the results (Yeah! He loves the stuff and gets half a can a day). has been med free since one month after the diet. We have reached a point where we are no longer looking for "the cure", but are just relieved to have control over the status siezures. His quality of life on the diet is so much improved! Our neuro thinks that will be fine as long as he stays on the diet. The continued activity on the EEG means that will still be at high risk for status as soon as he is off the diet. We have considered Keppra, but has improved so much, and is so much more alert and active and able to learn without meds, that we do not want to medicate him again.

just had neuro appt...

Hi Everyone,Ally (4 1/2) just had her ped neuro appt w/EEG yesterday,and I am saddened. On the diet, she has less seizures(usually only while asleep now), but her EEG showed a largeamount of epileptiform activity. Her neuro is concernedthat this puts her at risk for future status, problems,etc.(she has spent 2 weeks in hospital in nonconvulsivestatus). Two weeks ago, she had breakthrough seizures, butthis was probably due to an infection or antibiotics.He wants to add Keppra to the mix. She is already onTopamax (275mg) and phenobarb (60mg). I just don't knowwhat to do. I was hoping to DECREASE meds, not add a newone. Ally has very large mood swings, and the neuro thinksthis may be all of the abnormal brainwave activity. Ithought it was either acidosis, too high ketosis, orgenerally not feeling well.He offered other options, such as dextromothorphan (a shotin the dark, basically) or testing for creatine deficiency.Here's my thoughts...1.She drinks diet pop, so I thought to stop that (althoshe'll be VERY unhappy)2. start EEG biofeedback, wait to add Keppra and see ifthis helps3. reduce ratio in case she is too ketotic (I'm havingtrouble deciding); her blood ketones were "moderate"4. make no changes and wait to see if increased EEGactivity is "leftover" from breakthrough seizures, it tookher 8 days to stop twitching (I don't know if this is apossibility, but I am hopeful)Help! What are your thoughts???Thank you for being here, mom to Ally and Lexi__________________________________________________