update - seizure free!

[KarenB]

Haven't been checking in for awhile, but just wanted to give an update that Jonathan (now age 11) has been seizure free for over 2 years now. :banana:

He had that horrible time in 2012, where he was having around 7 tonic-clonic and tonic seizures a day, and I didn't think we'd ever get out of the valley of the shadow.

His seizures are now completely :woot: controlled with the Ketogenic Diet and a very small dose (50 mg/day, which is considered non-therapeutic) of Zonegran. He was weaned off the Diazepam and Keppra 2 years ago.

We hope to be completely med free by the end of this year.

 

[lindsayschu2]

This is amazing--I am so happy for you!! Congratulations to you and your family!

 

[CathyAnn31]

That's fantastic Karen, I'm so glad you updated!

 

[Pricilla]

oh my goodness! that is awesome and gives hope!!!!!

 

[Joyful]

AWESOME!!! Congratulations!

 

[denverboz]

Very very happy for you and your son Karen. I can't even imagine how distressing that was for you watching your child go through all that. God bless you both.

 

[Nakamova]

That is wonderful Karen! I know you went through a lot to figure out what would work for your son. Congratulations, and thanks for the update.

 

[AlohaBird]

oh my goodness! that is awesome and gives hope!!!!!

What she said.

:woot:

 

[Jay1]

Haven't been checking in for awhile, but just wanted to give an update that Jonathan (now age 11) has been seizure free for over 2 years now. :banana:

He had that horrible time in 2012, where he was having around 7 tonic-clonic and tonic seizures a day, and I didn't think we'd ever get out of the valley of the shadow.

His seizures are now completely :woot: controlled with the Ketogenic Diet and a very small dose (50 mg/day, which is considered non-therapeutic) of Zonegran. He was weaned off the Diazepam and Keppra 2 years ago.

We hope to be completely med free by the end of this year.

Hi Karen

Wow. This is great news. This is a big success story. Please continue to keep us updated on your son's progress.


There is a similarity between your son and my son. My son also got his first seizure one day after his 9th birthday and it was status epilepticus. Stayed in hospital for 4 days and was found to have strep throat. MRI was normal.


Within 20 days, he had another status epilepticus and continued to seize for many hours even after getting high dosage of medication in ER. Was intubated to stabilize breathing. MRI was normal. Doctors wanted to get him started on Keppra immediately.


In hind sight, I think my son was probably having brief absence seizures before and I could not catch them due to lack of knowledge.


I refused and I started my son on MCT Ketogenic diet on my own immediately (Thanks to internet and Dr. Freeman's book about ketogenic diet). He is also seizure free for last 6 months (no seizures of any kind) and continues to be in ketosis.


Thanks,
Jay

 

[AlohaBird]

Karen,
If you find time in your busy life, there are several people here who would really appreciate updates in the future now and then, particularly as you approach weaning off the last of the meds.
Big hugs to Jonathan.

 

[KarenB]

Jon continues seizure free for about 2 1/2 years now. In May, he came down to 25 mg of Zonegran, and the plan is to probably do a complete wean in August. He continues on the Ketogenic diet, but at a moderately low ratio of 2.5:1 (fat to carbs/protein). The plan, once he is med free, is to wait about 6 months med-free, and then to gradually wean him from the diet. That will probably take a year (we move at a snails pace -- having learned the hard way that doing things too fast can result in disaster).

We've had two neurologists advise us to keep Jon gluten free once he's weaned, due to a likelihood that his seizures may have been the result of Celiac Disease. (He tested negative prior to initiating the diet, but his doctors found that he is low in a certain hormone IGA, and this can cause a false negative). My husband also wants to keep him mostly sugar free as well, to prevent blood sugar spikes that could trigger seizures. He hasn't had sugar for years now, so he won't miss it.

Jay1, I was pleased to hear of your son's success on the Ketogenic Diet. Are you having periodic labs done to check electrolytes and lipids and such? Also, you might find the Ketocalculator (available through Charlie Foundation) helpful for devising recipes, but your son needs to become the patient of a dietitian that can sign you up for the calculator.

 

[Jay1]

Jon continues seizure free for about 2 1/2 years now. In May, he came down to 25 mg of Zonegran, and the plan is to probably do a complete wean in August. He continues on the Ketogenic diet, but at a moderately low ratio of 2.5:1 (fat to carbs/protein). The plan, once he is med free, is to wait about 6 months med-free, and then to gradually wean him from the diet. That will probably take a year (we move at a snails pace -- having learned the hard way that doing things too fast can result in disaster).

We've had two neurologists advise us to keep Jon gluten free once he's weaned, due to a likelihood that his seizures may have been the result of Celiac Disease. (He tested negative prior to initiating the diet, but his doctors found that he is low in a certain hormone IGA, and this can cause a false negative). My husband also wants to keep him mostly sugar free as well, to prevent blood sugar spikes that could trigger seizures. He hasn't had sugar for years now, so he won't miss it.

Jay1, I was pleased to hear of your son's success on the Ketogenic Diet. Are you having periodic labs done to check electrolytes and lipids and such? Also, you might find the Ketocalculator (available through Charlie Foundation) helpful for devising recipes, but your son needs to become the patient of a dietitian that can sign you up for the calculator.

Hi Karen,

I am getting the labs done once every two months. Everything is normal. Ketogenic Dietitian told us to continue what we have been doing because it is working. My son continues to be in ketosis (2.56)

I do not follow the strict classic Ketogenic diet with weighing etc. Yes, I am aware about the Calculator.

Luckily, I never got my son started on drugs and do not have to worry about weaning. We went straight to MCT oil (coconut oil) diet. If he gets any new seizure, then I will have no choice but to get him initiated on strict classic ketogenic diet.

Thanks,
Jay

 

[KarenB]

Hi Karen,

I am getting the labs done once every two months. Everything is normal. Ketogenic Dietitian told us to continue what we have been doing because it is working. My son continues to be in ketosis (2.56)

I do not follow the strict classic Ketogenic diet with weighing etc. Yes, I am aware about the Calculator.

Luckily, I never got my son started on drugs and do not have to worry about weaning. We went straight to MCT oil (coconut oil) diet. If he gets any new seizure, then I will have no choice but to get him initiated on strict classic ketogenic diet.

Thanks,
Jay

That's great news! So many times, as in our case, the Keto diet is used as an instrument of last resort, AFTER children have had seizures for several years (and the resulting brain damage) and after several meds (5 in our case) have been tried and failed (along with the horrific side effects). It's so refreshing to hear of parents who started their child on the diet as first line treatment. If I had it to do over again, I would have. I'm happy (and jealous) that you can follow a less-strict diet -- that may be the result of using it as first line treatment. And, since you nipped the seizures in the bud quickly, there's a good chance that he will stay that way.

 

[Jay1]

That's great news! So many times, as in our case, the Keto diet is used as an instrument of last resort, AFTER children have had seizures for several years (and the resulting brain damage) and after several meds (5 in our case) have been tried and failed (along with the horrific side effects). It's so refreshing to hear of parents who started their child on the diet as first line treatment. If I had it to do over again, I would have. I'm happy (and jealous) that you can follow a less-strict diet -- that may be the result of using it as first line treatment. And, since you nipped the seizures in the bud quickly, there's a good chance that he will stay that way.

Please watch this movie "First Do No Harm" made in 1997 and is based on actual events. You will see your own story in the movie. I am very upset and angry with doctors and neurologists who do not provide information to patients. I almost got railroaded into starting my son on drugs.

https://www.youtube.com/watch?v=HyeC9IiFKpw

 

[KarenB]

Please watch this movie "First Do No Harm" made in 1997 and is based on actual events. You will see your own story in the movie. I am very upset and angry with doctors and neurologists who do not provide information to patients. I almost got railroaded into starting my son on drugs.

https://www.youtube.com/watch?v=HyeC9IiFKpw

Already saw it a few years ago. I WISH I'd seen it back in May 2010. At that time, we had come back to the U.S. from Asia, with the plan of initiating Jon on the diet. At that point he was having an average of 1 seizure every month or two. But the neurologist that we consulted with didn't think his seizures were severe enough, and, at that point, he'd only been on 2 seizure meds (Keppra as a baby -- didn't work; and Topomax, which had worked for several years, but then stopped). She advised us to try increasing the Topamax and also having surgery to remove his tonsils/adonoids (he was having mostly night seizures, and she suspected sleep apnea might be a culprit). So, we did that, and during the several months that was going on, his seizures increased to 1 or 2 a week.

She then took him off Topamax, and put him on Trileptal, which didn't stop the seizures, but caused psychotic behaviors -- to the point that his principal wanted him removed from the school. Then from Trileptal to Lamictal, and an allergic reaction. Then from Lamictal to Depakote. By this point, he was averaging 4 or 5 seizures a week, and sometimes that many in a day. So, we wasted 9 precious months of drug trials and surgery, during which time, his seizures increased dramatically, and he sustained irreversible brain damage before starting the diet.

Needless to say, I'm far more proactive these days.

 

[Nakamova]

Karen --

I'm so glad to hear that Jon continues to do well! I hope the weaning process is trouble-free. I'm a big fan of slow ramping up and tapering off -- whether it's meds or diet or exercise -- unless there's some urgent reason for doing otherwise. I think many doctors err on the of speed, when in many cases slowing things down won't hurt and can help in terms of minimizing side effects and stress to the system.

All best to you and your family!