[MAD] MAD - Modified Atkins Diet

[joan]

I know a few of you know about this but I wanted to share our experieince.

Jennifer tried 3 drugs and none of them did much good. The side effects from the meds just changed this kid into a zombie. We are at 750 keppra only right now.

Jennifer started MAD June 10th. We were told there was a 50 - 60% chance it would work for her. We didnt want to get our hopes up. Its been a very long year and we are borderline exhausted. Jennifer normally has between 15 - 200 myoclonics a day. We have very few days where she has none. Usually at best 3 myoclonic free days a month.

From the FIRST day she went on the diet, I swear, she did better. SHe is almost on it a month and we have had MOSTLY myoclonic FREE days. This week, her time of the month, which is the worst time, she had 5. 5 myoclonic during her TOM? That to us is ... in freaking credible. JEnnifer says herself that she is starting to wake up and not expect myoclonics. THAT alone worth its weight in gold!! The diet is NOT horrible. The diet is certainly doable and I recommend anyone not finding success with meds to perhaps try it. IF This works for Jennifer, Phillip next. We go back to Baltimore next Thursday and if all goes well we start weaning her from meds August 8th. To me, its like looking forward to a very special bday* We anticipate her being on this diet for 2 years.

I know how frustrating E can be. I know we all try different things to make life better. I just wanted you to now whats working for us.

I wish you all well,
joan* who believes more and more that carbs and glutens are killing some of us**

 

[Nakamova]

Wow! That is so wonderful! The more patients who can show that this kind of diet works, the more likely it is that the medical establishment will sit up and notice. Thanks for posting, that's great news.

Best,
Nakamova

 

[Bernard]

That's awesome Joan! :woot:

Congrats to Jennifer. :rock:

 

[rackelsmom]

Joan, That is so wonderful! MAD is a wonderful diet and I'm so pleased to hear that Jennifer is doing so well on it. Are you going to Hopkins? We go there for Keto...

Blessings,
Ann

 

[joan]

TY* Im too jaded by E to think this the end,.. but its been a realllly good month and that does make us hopeful.

We are at Hopkins with Dr Kossoff. He really is a decent man devoted to the cause. We are very grateful to him and his staff.

joan*

 

[Meetz1064]

Wooohooo!!!

I am soooo very happy for you, Joan.:woot::woot: Jennifer must be floating on air by now, and not being so sore or anything from that many daily myoclonics........geez, I can only IMAGINE how she feels.......:clap::clap:

Keep it up!!!

Meetz
:rock:

 

[joan]

ty** and like I said Im not con-vinced yet. We went to her Neuro today, who knows we are on the diet and we are hitting our first road block. He says IF she does well for 6 mos he will start to wean meds. Where as the MAD Dr feels after 2 months of doing well, you start to wean, to get rid of the meds which may become part of the problem. I guess we will cross that bridge when we get there. Im just trying to enjoy a few days.

Again thank you all and I hope you are all doing well**
joan*

 

[RobinN]

I am so pleased that you are seeing results Joan. As you know I am such a believer that many could be seizure free if only they would make the necessary changes.

In our case the meds had to be out of the system. In fact it took about a month for them to fully leave the body clear to work on it's own. What does your mother's instinct tell you?

Enjoy your weekend.

 

[joan]

I know the diet is helping, I also think Im a bit gun shy to get too hopefull. Shes been in high ketosis all month and doing great. Today, her first day of TTOM.. shes had baout 15 myocloncis today. Her ketosis is moderate. So Id have to guess I need to keep her in high ketosis every day even with her period. I will figure it out lol What choice do I have lol We go to the MAD Dr on Friday and I have tons of questions and we will continue : )

The whole med thing scary for me as I want her off them. I will probably do as the MAD dr says as I see him as the expert in this area. I think if I could get her down to 500 keppra a day, she could survive on that. Im not sure she will ever be drug free BUT : ) we are going to try.

Thank you all, always for your support and I hope everyone well.

joan*

 

[Zoe]

Hi Joan,
It's good to hear Jennifer is getting better using the diet. It's a good thing you have Kossoff to help with weaning off the meds.
When I was using the amino acid taurine, I went to AZ and saw a neurologist who was involved in some of the research on it. He told me that after about two years, the body seems to adapt, re-adapt to the point the amino acid supplements are no longer needed.
Hopefully after a long enough time on the MAD, Jennifer's body, metabolism, etc. will have recovered enough that she can safely withdraw from the drugs. I hope this will lead her to become seizure free.

 

[joan]

We're leaving later to head to Baltimore. The appt tomo at 730 am. Ive been reviewing the month and I have to say... It went pretty great. She had over 21 days myoclonis free. UNHEARD of since this started 7/08. Shes had 6 days of 1 - 3 myoclonics, (which for us is like nothing*) 1 day of 5 and 1 day of 10 (first day of her TOM).. Reviewing that, Shes had an awesome month. I know I messed up a lil here and there so I expect next month to be even better. The diet is DOABLE!! Please do not fear trying this diet. Once you get the hang of it, it really alot easier than I had thought*

Whats the greatest change? and worth a billion dollars? Jennifer waking up and saying.. hey Mom? I dont think about twitching every day anymore... OMG. ... a big change from Mom? sooo how many twiches do you think I can live thru today lol ...

All in all, even if I have to keep on the meds, Im con-vinced the diet worked for her. Naturally : ) Im still going to try and wean a bit.. but.. as of today.. I feel a bit of success.

so on one hand things seem to be getting better but on the other hand, I have great concerns for my son. I cant even verbalize my fears for him at this point.


Hang in there everyone and keep searching. E like a puzzle we just have to figure it out* And its not a one size fits all kind of thingy**

Be well and we will see you soon
joan*

health.groups.yahoo.com/group/JuvenileMyoclonicEpilepsy/

Courage, discipline, fortitude and integrity can do a great deal to make a woman beautiful.

 

[joan]

ty* Robin... Im starting to believe that IF the diet helps/heals her.. the meds will become toxic and we will have no other choice but to remove them. Its my greatest hope.. but I try and keep my dreams very small these days and enjoy whatever tiny successes we get.

But : ) you know I will push to get off them* I am so happy to read of your daughters successes!!!

joan*

 

[joan]

Went and saw Dr Kossoff yesterday. he was very pleased Jennifer was doing so well. HE said, although it can change, it seems the diet either works or doesn't work, and it seems to be working for Jennifer. He says he has a few JME kids that do well on it. He said in 30 days we have the option of weaning some meds or raising carbs. In the best interest of school, we are going to go for the lower dosage in August. She is at 750 keppra now and I hope to get to 500. I think she can survive? function on 500. Dr Kossoff said we could "TRY" to wean her off all meds BUT he didnt think that would work. He thinks shes going to need, at least, some small dosage. We shall see : ) If we can get lower than 500 keppra? Only a dream at this point for me. Jennifer went from 120 lbs to 101 lbs. Shes at 112 now. She rates the diet, on a scale of 1 - 10 a 4. She definitely misses carbs BUT because of the improvements is determined to stay the course. She mostly misses desserts and we are working on finding things to substitute. She seems to be settling down into some sort of normalcy? We shall see what happens this month. This our first 30 days on MAD.

Thank you all for your thought and kind wishes. They are appreciated.
Joan*

 

[joan]

One Patient Needed for MAD -

This morning I received a message from Dr. Kossoff that included the information below - if anyone is interested in being working with the best on this and has not yet started the diet here is your chance:
>
> Still looking for one more study patient for my latest study, if someone is on there (and hasn't started yet)!!!
>
> Eric H. W. Kossoff, M.D.
>
> Assistant Professor, Neurology and Pediatrics Medical Director, Ketogenic Diet Center Director, Pediatric Neurology Residency Program Suite 2158 - 200 North Wolfe Street Johns Hopkins Hospital Baltimore, MD 21287 Phone (410) 955-4259 option 3 (assistant Keri) Fax (410) 614-2297
>

 

[RobinN]

Joan - do you have a link to the original study?

 

[joan]

Sorry Robin Ive been slacking.. I think this will get you there..

http://clinicaltrials.gov/ct2/results?term="Johns+Hopkins"+"atkins"+"epilepsy"&recr=Open

Jennifer on MAD about 70 days. She went from having 1,000s of myoclonics a month, to under 30 the first month and 2 the second month. We are starting our 3rd month and starting to wean some meds. Jennifer feels better but we can still not get her energy level up. Im hoping when we cut the meds and/or raise the carbs she will do better. Its been very hard watching her with no energy. Very unteenish borderline unnerving. She is dedicated to the diet as she knows shes better and has started to not expect her twitching.

joan*

 

[RobinN]

Thanks for the link Joan.

Are you able to cut the meds by 25mg per week, instead of bumping it down by 250mg?
We have been battling energy for some time. I just had Rebecca's hair tested again. We did it three years ago. Since I just started chelating, I am interested to see how this will change over time. From my research the body simply can not heal with the metals and mercury in the system. Have you ever done hair testing?

Has she ever had dental work? Any around the time she started getting seizures?

There are some supplements that are helpful in getting energy to the cells. Magnesium is #1, L-Carnitine, Omega 3, and I am sure you could do a little digging and tweaking to see if she is lacking something.

I am overjoyed that Jennifer is doing so well. Breaks my heart that the medical world does not want to explore this as a first option. They don't even discuss it. It is our job I guess to educate others how we have been helped by making nutritional changes.

Hugs

 

[joan]

She is on 10 - 12 carbs and tonight the first night we cut 250. If and after this goes well, we will only drop 100 a time. Something about the meds becoming toxic on the diet so trying to wean semi quickly to start. We do not anticipate getting her totally med free but we are going to try. Right now 500 keppra feels like a dream* We feel the myoclonics are not grand mals and should cause no brain damage so we can "play" a bit. She is really doing great, other than the energy. And the energy part kills me. We are waiting till after the wean to see if that helps, if not, b12 was mentioned and another supplement. Right now shes only on a sugar free one a day for kids. I just cant wait to have my daughter back. The last few weeks she has suffered from depression heck I'm starting to believe its catchy ughhh I know she has alot to deal with but shes always been so good. As we all know, its just hard at times : ) Weve been warned the next few days, upto 2 weeks can be rough. But we are determined to stay the course!

Jennifer has no dental work. Shes never had a cavity. I havent had her tested for metals yet. Its not out of the question.

joan*

 

[RobinN]

I think it is also the age of depression, even when there are no medical challenges to deal with. Hard to say if it is one or the other, or the combination of the many...
Rebecca certainly had her share of issues over the past three years, and we are seeing it all improve over time. Would this have still been the case if she had not had challenges. It is any ones guess.

 

[McGill]

Thanks for the mention of the diets, Robin. I've downloaded them U sent them to be printed. Unlike Joan's DD, I have a mouthful of cavities filled with mercury. Part of the reason was inherited, part R/T Rx & gingivitis.