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way off topic -- ketogenic diet

Discussion in 'Parents Off Topic' started by hmmmcormick, Mar 5, 2011.

  1. hmmmcormick

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    We are considering putting Morgan on the ketogenic diet. He has been having seizures since he was 6 yrs. old. At that time he went on depakote and clonazepam and had no seizures for about 18 months. After that period of time he developed myoclonic, absence, and tonic seizures. He was put on valproic acid and keppra (we stopped the clonazepam) with very little success. He was allergic to lamictal. He was having about 20 seizures a day on average. In 2009, at the age of 11, we added banzel to his meds. This drug eliminated the tonic seizures all together and has reduced the frequency of the myoclonics and absence seizures, but he still has them daily. Morgan is now 13 yrs. old and we have discussed starting the ketogenic diet with his neurologist. She definitely thinks it is worth trying.

    It is so hard making a decision like this. If it was for myself I would just decide and do it. But, when you are making a huge decision for someone else it can be very scary. Morgan will have to be hospitalized to start this diet and he will have to be monitored (lab work) closely, but I, personally, know of one girl who was having 100 seizures a day that became completely seizure free after being on the diet, even after she went off the diet she no longer has seizures. Because he has to be in the hospital we will wait until school is out to start. I still need to talk to his endo. to make sure she is okay with it. She could be the one who could stop it all. Morgan is not even on insulin anymore so I don't think it should be a problem.

    I know most of you are not familiar with this diet and the thought of putting your child in a state of constant ketosis would out of the question. This diet is a proven medical procedure and is always performed under strict supervision. There are some risks-- bone loss (which neuro. told me they would put him on calcium and vitamin d supplements), kidney stones, frequent lab work (which Morgan is a very, very hard stick), dehydration, weight loss. Such a hard decision! But, the thought of no seizures outweighs most of this. And, he could get off or cut way back on his seizure meds, which would thrill me, too.

    Please, please pray we are making the right decision.
     
  2. mmgirls

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    Well I all I can say is if there is a proven possibility that this may make his and those that care or him, quality of life better in the long run then I would greatly consider it.

    I am so sorry that the burnded to decide has been place in your hands but tey are caring and loving hands that are capable of making the right decision for your family.
     
  3. emm142

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    I'm sorry you're being forced to make this decision, but sure that you will make the right one for Morgan. Best of luck with this; I'll be praying that it works.
     
  4. Sarah Maddie's Mom

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    Holly, if I am reading your post correctly, this is a difficult and maybe logistically complex, but ultimately reversible, decision... right? I would think that if you would know, based on the start-up hospitalization, how Morgan is responding and that he wouldn't be discharged until you know that he is physically safe, then it sounds like something that he might really benefit from.

    If any parent has done the research and weighed the options, Holly... it's you. However you decide, I'm sure it will be the best choice. ;)

    Good luck, and let us know how it all turns out.:cwds:
     
  5. Beach bum

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    Holly, my thoughts and prayers are with you in making this decision.
     
  6. Becky Stevens mom

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    Holly, I know any decision you make for Morgan is made out of love and much research and agonizing whether its the right decision. My brother researched this diet years ago before he had his brain surgery for epilepsy. The Epilepsy foundation has many good things to say about it as a treatment for epileptic seizures. I think it is worth pursuing and I pray that it stops Morgan's seizures or cuts down on them drastically. You are an incredible woman. Just thought I'd tell you that:cwds:
     
  7. ChristineJ

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    Holly,

    I am an RN, and I am currently caring for a young girl with a seizure disorder. She has been on a ketogenic diet for quite some time now, and the improvement she has experienced has been incredible. Her mother told me that she used to seize daily until she started the ketogenic diet. Now her mother finds it hard to remember the last time she had a seizure! Hopefully hearing her story helps with your decision. Whatever you decide I'm sure it will be what's right for Morgan!:)

    Christine
     
  8. hmmmcormick

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    Thanks for sharing that, Becky! The keto diet has been around for a very long time. I think I read it was first used back in the 1930's.
     
  9. hmmmcormick

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    Thanks, Christine! I, personally, know a girl who was having over 100 myoclonic seizures a day and after she went on the diet they stopped all together. Quite an amazing thing!

    Some might think that the type of seizures Morgan has wouldn't be so troublesome because they are quick (usually lasting only a sec. or two, except the absence) and do not appear to bother him. In reality, myoclonic seizures are generalized seizures that, when they occur, happen throughout the entire brain, not just a section. The reason they do not bother him is because for that second he actually loses consciousness. He does not remember them at all. Every time I see that jerk of his arms, no matter how small or how quick I just die inside for him. Maybe I feel that way because it is something I can not fix, just like diabetes is for everyone here.
     
  10. ChristineJ

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    I know just what you mean. My son has some emotional/behavioral special needs. I see him struggle and my heart just breaks for him. No matter how much I want to make the hurt go away, I can't. I can only do my best to soften it for him. We do what we can and hope that it's enough....:(

    Christine
     
  11. Tigerlilly's mom

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    Hi Holly,

    I am so sorry that you even have to make a decision like this. Please forgive my lack of all the medical terms.

    My nephew (now 18) was dxd with epilepsy at the age of 3 (he suffered from drop seizures). My brother and sister-in-law tried every med and combo of meds that there is. They also tried the ketogenic diet, the diet did reduce the amount of seizures he was having a day, but did not eliminate them fully. It was a difficult diet for them as a family, they also had a toddler at home and had to hide when they ate, because my nephew didn't understand why he couldn't eat what they were eating. So in the end it just didn't work for them, but my sil knows many other families that have had huge success with the Ketogenic diet.

    In the end they opted to try brain surgery for him, due to the severity and amount of seizures he was having per day, and that he had to be so heavily medicated he just wasn't himself anymore.

    Feel free to PM me and I will send you my SIL email address, she is very active in the epilespy online community.
     
  12. StillMamamia

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    Just wanted to wish you good luck with your decision. I am sure you will make the right one. You're an amazing and wonderful mom and human being.
     
  13. Pauji5

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    I'm sure it was a difficult decision for you. Good luck, and wishing you and Morgan positive thought!:)
     
  14. s0ccerfreak

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    A family that I nanny for did this diet for a while with their child. They did see some improvement, but didn't see enough that they wanted to stick with the diet. Later they came to a hard decision of brain surgery because of the severity and frequency of seizures. Their child has only had a few seizures since the surgery 4 years ago. The surgery changed all of their lives for the better. Now this child is just the happiest kid and is doing well at school (and loving being there) and learning life skills.

    I will be praying for your family as you make this decision. I will also be praying that Morgan's treatments will do their job and the seizures will be reduced.
     
  15. hmmmcormick

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    Morgan's regular pedi. and his endo. are on board!!!
    We have decided to go ahead and do this thing. The only concern the endo had was with illnesses. She said if Morgan so much as acts out of sorts he is to be seen by his pedi. and labs drawn. Since he has been known to have high blood sugars and his body will be in a state of constant large ketones he can not have high blood sugar. Tomorrow morning I will call the neurologist's office and let them know our decision.
     
  16. Beach bum

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    Good news Holly. It's so helpful when everyone is on board and supportive of your decision.

    Best of luck, I'm rooting for you guys!
     
  17. ChristineJ

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    Glad everyone's on board, Holly. I hope this works well for Morgan!:)

    Christine
     
  18. shekov

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    Seeing this a little late but just wanted you to know that I fully support any decision you make for Morgan.

    You are the only one, in my opinion, who can make this call since you know him better than anyone else and are making this decision with a lot of knowlege and a good heart.

    I'll be anxious to hear how things go. I will be praying for you both throughout!
     

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