Prep-ing 4yo for Keto

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katie's mom

katie's mom

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We're getting ready to put by 4yo daughter Katie on the strict Ketogenic diet this month. No one else in my or my husband's family has epilepsy so this has been a learning experience for all of us.

Katie got her first seizure (a grand mal) in Sept '08, just before her 4th birthday. In December, the daily absence, myoclonic, & drops seizures began. Her neurologist is "approaching" a Doose/MAE diagnosis (this is a "high-functioning" sub-group of Lenoux-Gastaut Syndrome). Prior to her seizures Katie was a perfectly normal, healthy & happy little girl. Her pre-K teacher even told me she was "gifted."

Now, we have a little better seizure control on Keppra, Banzel & Klonopin (the sz's are mostly confined to mornings). But her mind has been deteriorating. Her language skills have regressed to a young 3yo. Her motor skills are declining, and it is a struggle to feed her & get her dressed. She has started having weekly incontinence episodes. She always stays in "her own world" and we have to repeat things ten times to get a response. I am just not willing to wait any more for these drugs (we've already failed Lamictal & Depakote and weaned Dilantin) while the epilepsy is robbing us of our child.

I am also nervous about the Keto diet, but excited, too! Do any of you have any suggestions about how to prepare for the diet & how to make it manageable for me & Katie?

Thanks!!

Kristi
 
Honestly, I

have no idea, but there is a parent here who is a moderator who would be able to answer your question--Dutch Mom. She comes and goes, pretty frequently, so be patient. She lives in Holland, so her time clock is a bit different than ours...
 
Hi Kristi, there are a few members here who are administering a Ketogenic diet to their children. I understand that the implementation of the Ketogenic diet differs in the USA versus in Europe.

Are you in touch with Christina's LGS Foundation? She might have more resources for you.
 
Hi and welcome* I am glad you are excited for the Keto diet. Many have great success with it. At her age it will be a little easier as you are in control of her food. I know its not an easy diet BUT if it works? SOooo worth it. I may put my 16 yo daughter on it. We are looking into a few diets for her. I am in a group that supports those on the keto diet. Maybe you will find some help there as well. Its mostly parents using the diet with their children. I wish you well.

Subscribe: ketogenic-subscribe@yahoogroups.com

joan*
 
Hi Kristi,

I'm from Holland and my 9-year old son is succesfully on the ketogenic diet (classical/LCT) for allmost 5 years now. He has the Lennox Gastaut syndrome.

The ketogenic diet has given him a significant sz reduction (10-100 a day before and hardly any szs now), has improved is EEG (90-99% epileptic activity before, less than 30% now) and he's free of all AED.
We've tried to wean of the diet after 4 years but that was no succes. Last year our attempt to decrease the ratio (from 4:1 to 3,5:1 and 3:1) got him out of adequate ketosis and again we had several months with many, many seizures (atonics, tonics, tonic-clonic grand mals., absences, complex partials, we do know them all...) It was difficult to finetune his diet again but he's stable again for the past 3 months.

You can read my son's story on the home page of the Matthews Friends website. http://site.matthewsfriends.org/index.php?page=joni-s-story
The Matthews Friends website and especially their members forum is a very good source of information and helpfull to prepare for the ketogenic diet. You can join the forum here http://site.matthewsfriends.org/index.php?page=members-forum
Parents from all over de world support eachother, exchange recepies, information and experiences. There are several parents who have a child with MAE. It's a wonderful, warm group of people, very willing the help new parents out. MF has contacts with Jim Abrahams of the Charley Foundation in the US.
I'm on the Keto Yahoo group too but I find it difficult to find my way there, it's a mailing list, not a structured forum and I cannot easy find things back in their archives.

Got you two articles from our Dutch forum archiieves on the KD as a treatment for MAE/Doose:

Epilepsia. 2007 Sep;48(9):1703-7. Epub 2007 Jul 25. Links

Current treatment of myoclonic astatic epilepsy: clinical experience at the Children's Hospital of Philadelphia.

Kilaru S, Bergqvist AG.
Division of Neurology, The Children's Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania 19104, USA. sudha.kilaru@aya.yale.edu

PURPOSE
Myoclonic astatic epilepsy (MAE) is a generalized epilepsy of early childhood. Little is known about the use of newer antiepileptic treatments (AET) in MAE. The purpose of this study was to describe the characteristics, treatment, and outcome of a contemporary MAE cohort exposed to the new generation AET.

METHODS
Charts of subjects with MAE treated between 1998 and 2005 were reviewed.

RESULTS
Twenty-three subjects (19 boys), with a median (range) follow-up of 38 (2- 86) months were identified. Thirty-nine percent had a family history of epilepsy, and 39% had family history of febrile seizures. Age at seizure onset was a median of 36 (12-24) months. Initial EEG was normal in 30%. When seizures ceased, EEG background and epileptiform abnormalities persisted in 17 and 58%, respectively. On average, each subject was exposed to five AET. The most frequently used AET was valproate (83%). Seizure freedom occurred spontaneously in three subjects, with ethosuximide and levetiracetam in one each, valproate and lamotrigine in two each, topiramate in three and the ketogenic diet (KD) in five subjects. By 36 months after seizure onset, 67% achieved seizure freedom. At the last visit, 43% were developmentally normal, 52% had mild, and 5% had moderate cognitive disabilities. Time to seizure freedom did not correlate with cognitive outcome.

CONCLUSIONS
The new generation of AET may offer significant benefit to children with MAE. The KD was the most effective AET in this series, and perhaps should be considered earlier in treatment.

*************************************************************************************************

Epileptic Disord. 2006 Jun;8(2):151-5. Links

Ketogenic diet in patients with myoclonic-astatic epilepsy

Caraballo RH, Cersósimo RO, Sakr D, Cresta A, Escobal N, Fejerman N.
Servicio de Neurología, Hospital de Pediatría "Prof Dr Juan P Garrahan", Buenos Aires, Argentina. rhcaraballo@arnet.com.ar

For more than 80 years, the ketogenic diet has been used as an alternative to antiepileptic drugs for patients with refractory epilepsy. Myoclonic-astatic epilepsy in early childhood is one of the malignant epilepsy syndromes that often proves refractory to antiepileptic drugs treatment.

Objective
In this prospective study we assess the efficacy and tolerability of the ketogenic diet in patients with myoclonic-astatic epilepsy.

Material and methods
Between March 1, 1990 and August 31, 2004, 30 patients who met diagnostic criteria of myoclonic-astatic epilepsy were seen at our department. Eleven of them were placed on the ketogenic diet using the Hopkins protocol and were followed for a minimum of 18 months.

Results
The children had previously received a mean of 5.2 different antiepileptic drugs and were on a mean of 2.2 antiepileptic drugs when the diet was started. Eighteen months after initiating the diet, six of the patients (54.5%) remained on the diet. Two patients (18%) were seizure-free, two (18%) had a 75-99% decrease in seizures, and the remaining two children (18%) had a 50% to 74% decrease in seizures. The first two patients were tapered off the diet after remaining seizure-free, without antiepileptic drugs for several years. In the two patients who had sporadic seizures, antiepileptic drugs were reduced to one, and in the last two the seizure frequency was significantly reduced. No differences in seizure control were found when compared for age, sex, or seizure type. Five of our patients discontinued the ketogenic diet in less than 3 months (four because of lack of effectiveness and one because of persistent vomiting).

Conclusion
The ketogenic diet is a promising therapy for patients with myoclonic-astatic epilepsy, with over half the children showing a > 50% reduction in seizures, and seizure-freedom in 18%. In drug resistant cases of myoclonic-astatic epilepsy, the diet should be considered early in the course of this syndrome and not as a last resort.
Click to expand...
 
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The nursery?

Suggestion: What do you think? Should we move this thread?
Our host Bernard has created a brand new room in our home called 'The Nursery', meant for parents and topics concerning children with E. See http://www.coping-with-epilepsy.com/forums/f42/
 
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Yes, I think we should!! Thanks for helping support the nursery's creation!!

How do I move it - should I just re-type??
 
You can't move threads or messages yourself but as a moderator I can. ;)
So let's have a babyshower, as your thread is the first 'real' one here. :)
In time I'll send you a receipe for a ketogenic birthday cake...
 
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Thanks so much!! I have seen both those pages and they have been helpful!! I also really enjoyed the info you sent earlier on MAE - I hadn't seen that before and it was good to have that exposure. ANY information about this mysterious illness is so helpful.

My biggest fear is seeing my daughter end up with permanent delays. Even though the "Doose" prognosis is generally better, I have seen so many similarities to the LGS issues that I don't know where her final diagnosis will end up (it has changed several times and not for the better :( ).

My fervent prayer is that if this diet succeeds then we can have our old Katie back for good! I just have been through so many disappointments already that I am still bracing myself for the worst. However, I think that even if this isn't something that she'll be able to outgrow, the keto diet is still one of our best treatment options!!

Thanks, again!!

Kristi
 
Hello Katie's mom,

My son Ben has just statrted the KD we are two weeks in to it, and the results are looking very possitive.
Ben is now 26yrs old and sounds very much like your daughter, his diagnosis has changed so many times that he now has no diagnosis so therefore no prognosis. Ben's story is very long but to cut it short normal till aged 8yrs then slowly over the years deteriated, he now uses a wheelchair and is totaly dependent on us.

His speech deteriated to the point were he didn't speak at all, in the last 2wks he has stated to say things he has not said for years.
I talk him through things when I am caring for him and the other day he asked me "why"? was I doing whatever it was I was doing, something he did all the time when he was little we used to call him the why? baby.
Then tonight he told me he didn't like something I was giving him to eat. This doesn't sound much to some but it was music to my ears.

The Sz's have improved massively Ben was having 3-6 GM's and 800 abscenses aday, we are now going days without any GM's and definatly less abscenses
We have had a few ups and downs in the last 2wks, but I knew it wasn't going to be easy. Ben is on Phenytoin and it complicates things a bit.
This diet was mentioned yrs ago to us but we were told it was very difficult and no one was interested in it then, if I knew then what I know now it would have been the first thing I tried not the last. It is no harder than looking after a totaly dependant 26yr old who cannot tell you anything.

I wish you all the success with the KD and hopefully your katie will be able to start the life she deserves.
If there is anything I can do to help, although I am new to it as well please give me a shout. I am learning very quickly I know we can do this.

Keep Happy:)
 
Thanks so much for sharing your story!! You have touched my heart! I do feel that the doctors and drug companies just don't care enough about doing whatever needs to be done to combat the devastating effects of epilepsy or to help parents find a treatment that helps their child quickly enough.

You would make a wonderful advocate for promoting the Keto diet in the medical community. I am so sorry for what you've had to go through, but am so glad to hear that the diet is already brightening Ben's life.

I have read and re-read the Bible passage so often when Jesus told his disciples "this kind (presumably of epilespy) can only be healed by prayer and fasting." I do think that the fasting principle the primary factor in the success of Keto and I think it's a shame that the medical community is so wrapped up in money-generating drugs that they lose sight of what is best for the patient. I consider myself very lucky to have had such early exposure to the diet and I do owe my doctor and dietician a lot of credit for that. I hope to be able to advocate more for epilepsy issues if we can ever get to the "promised land" of a better life for Katie.

Thanks again, for your support and advice! My prayers are with you!
 
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Hi Katie,

Here is my daughter's story, she experienced onset of e march 06 in the form of a 10 hour status. She was taken to a children's hospital that is local and there they told us she had a mass in her left frontal lobe (they said it was a glioma). We started her on Keppra. I took her for a second opinion.

The second opinion was that the "mass" wasnt cancer but in fact damaged area from the prolonged status. She was dx'd partial complex. She failed Keppra and through the next 8 months failed many other drugs as well. We were referred from the neurologist to the ped. epi at Johns Hopkins.

Hopkins gave it a shot starting August 06. They are tremendous! We love them all there! They referred us to Neurosurgery after a couple of EMU stays. They had a focus area, she was a good candidate. Grid 2-07, 1st resection 3-07 and 2nd resection 5-07. They removed L. temporal, hippocampus and amygdala. The sz's returned.

11-07 we began the keto diet after being told, don't get your hopes up, this is just to let her heal a bit before we turf her back to neurosurgery. (there was still damaged area they were unable to remove in the 2 resections)

After the first 5 months on Keto, Rachel became 100% sz free! The first 5 months she only sz'd when sick. This has been a lifesaver for us! She stopped Zonogran in the hospital during induction and since then has come off of 3 other drugs. We begin the wean of the final drug next week!

We returned for our Keto appt this past Tuesday and they told us that after we finish the last med wean we can try "controlled cheating' as a precurser to weaning the diet after only 2 years!

I believe that Keto has saved her life. She is doing better in school and I finally get to meet my beautiful little girl without meds thanks to this diet. I highly recommend it for anyone who is able to tolerate it.

Blessings,

Ann
 
Ann,

Thanks so much for your touching story about Rackel!! I really needed the inspiration today (Katie is just regressing so much and today is a little worse than others)! It is so easy to feel hopeless after trying so many meds, etc. that fail and seeing your child fade before your eyes. A doctor that is willing to take the time to explore all options to preserve a child's mind is worth his/her weight in gold!! My neuro did his residency at Hopkins and I am very grateful for that! I do pray that this diet is the answer we've been looking for. Just hearing an inspirational story like yours is what helps get me through days like these!!

PS: Happy Easter!!
 
katies mom so sorry to hear about your little girl..my son is almost 4 and was also Dx with doose this past june..he to was a normal healthy boy with no issues besides a speech delay..we had daily drops for over 5 months even on 4 drugs.. we started the mod atkins diet and have now been sz free for almost 4 months! doose is just dreadful and drop seizures are the worst ever so good luck with the diet..we are even to the point of weaning some meds so i hope to get my little boy back!
 
zuegenc - So glad to hear your words of encouragement and so glad to see you on this site!! I was hoping you would make it over after the PHP changes and I remember how you gave me some good advice from the first time I found out about what Doose was!
 
im so grateful for this forum as well i was missing everyone and always love my advice from other parents..good luck with the keto i sure hope it helps..does she still have daily drops? my son did regress quite a bit during his illness but even just being Sz free for 4 months and slowly weaning meds he is getting a bit back to us i think it will take time but the diet is by far the best thing that has happened to us and honestly if yo uare willing to be creative and find out recipes its not so bad.. we can have grill cheese and chicken nuggets and Peanut butter i have just learned how to do my own cooking now so still lots of kid food..
 
Hi Z! I'm so glad to see you here! Good to see you again! Good to hear that your little one is doing well. Hope you had a good holiday! Katie's mom, I'm answering some things over on the new PHP since i'm home today. ttyl (-:
 
Z - Katie is still having daily drops and even though they are getting fewer and farther between, she has been regressing so much :( but I keep hearing similar stories about how the diet was the only thing that made a major difference! I was so wary of the diet at first but now I wish I had tried it months ago!!

Ann - I think I already replied on PHP - I hope I'm not bugging you too much!! I guess I am having a mild case of the keto newbie jitters!!

Kristi
 
yes i was very nervous about starting the diet as well i was sure it was going to be a mess and he would do alot of crying but i was amazed at how well he handled it before we started he loved milkshakes and ritz bitz and never ate meat now if we dont have meat at every meal he begs for it..i think at this age they adjust pretty well not that its not trying at times but yes after 5 months of daily drops i wished i had done the diet sooner then that... i so hope your little girl responds well to it too... does your hopsital do the MAD at all? we are very pleased with it since its a bit more flexible and no calorie or protien restriction ..keep us posted... also hi rackels mom im glad i found you again!!!
 
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