My daughter has been on the ketogenic diet now for a little over a month. We have had great results until this morning. She had a very intense seizure. It wasnt exactly a grand mall but it wasnt exactly an absent or staring seizure. We have tried almost all meds for her knowing she just respond well to meds we started her on this diet and she still takes Keppra. We had a month of no seizures and her mental growth during this month has been amazing and our life has been mostly normal. But today feels like one of the last in the past two years. She is two and a half and wsa diagnosed as a baby with epilepsy. We are running out of options. Could this be LGS? We have spoke with her Doctor about it and he doesnt want to look at that as an option and if you knew what LGS is you wouldnt either. (LGS Lenox Gastaught Syndrome.) So I guess what I am looking for is some advice and some support. I felt like beating someone this morninig when I woke to my daughter having a seizure. It really pissed me off. I want this controlled and we are running out of options.
my son has LGS we just started the Modified Atkins diet. If you are on facebook there is LGS focebook. I wouldn't use keppra the side effects were bad for my son and many others. I know they all have bad side effects we are now taken my son off of topamax because of side effects with that to. if you would like to talk send me a message and I will be happy to talk to you .there are also many other's on facebook to talk to also.
The hard part with seizures is what works for awhile stops working . stay strong and if your Daughter Doctor won't hear you out then I say it is time to get another Doctor .
I am surprised they didnt switch your son off topamax before they started the diet. Topamax and the diet give very high risks of kidney stones. The keppra has actually worked very well on my daughter. She is 2 and doesnt have many options of meds the last two were horrible one being topomax (topamax) and the other can remember the name of it started with an F. But the Keppra is no longer working. i just have heard that there are tests for lgs and the i have heard that there isnt. How old is your son? I think i might have lots of questions for you.
My son has had some horrible side effects to some of the drugs they have given him also...he was on felbatol, banzel, vigabitin and now he is on prednisone, colanzepam and topamax. Every med is different for every child. We are just starting on the topamax so i am not sure what this one will do yet. The other ones causes horrible drop seizures in my son. He is 2 years old and has not yet been diagnosed with anything other than irretractable epilepsy. His seizures are not yet controlled by any meds. they talked of doing the keto diet if nothig changes. We found out he was having seizures at about a year old when they found the hypsarrhythmia brain pattern. The neuro has done so many tests on my son but has not come up with anything besides a chromosome duplication that they do not know what it means. Has your child had any chromosome testing like a microarray panel?
Do the diet. It has been such a blessing for my daughter and my family. It is pretty much an all meat all cheese diet. They get 10g a day of carbs. What i do with my daughter is two eggs in the morning with bacon or ham or sausage. All the meat is carb free cause its easy that way. lunch she gets walmart prand provolone (only brand i have seen that is carb free for prov.) with meat. Great Value (walmart) makes a juice that is completely carb free sugar free. (its like crystal light but almost a dollar cheaper.) Heavy whipping cream high in fat my daughter loves. I do have cream and half water so its not so thick i dont think she has noticed the difference between that and milk. Butter candies. drop of butter and some sugar and cinnamon on top. (thats the treat) There is no candy out there with really low carb and sugars it is always no sugar but there is always carbs. I am rambling sorry. In the beginning it was hard cause we wanted to give her the things she was used to but after a month its not really a problem. I would absolutely suggest the diet my daughter was in the same position your son is in now. It got so bad that the only way we could control her seizures was to sedate her. Good luck.
P.S. We have not tried that test. I will definetly talk to her Doc about it.
Did your child have to be admitted into the hospital in the beginning of the diet? What type of seizures does your child have? My son has drop seizures myoclonic jerks(i believe), and maybe simple partial also. He also has tremors in his hands as far as we know....the dr's have never eally given us a name for everything...most of it comes from my own research.
my daughter has pretty much had every seizure out there. Her most common are grand malls. The tremors could be from the meds. Those are common in the drugs he is on. I would tell your Neruo about it. In some states they do admit the child until there ketones are high enough to make sure they stop. But the problem with that is they practically starve the child for a week. It only took me one day to get Lilees ketones where they needed to be and I saw results right away. Good for you for researching though a lot of parents and people with epilepsy dont. So you should be proud of yourself. The more you know about you childs condition the more you and your doc can help him. One thing I would ask the doc though is to see if they see any types of lgs signs in his eeg. Where do you live? If you live in area I know I may be able to recommend a Doc to you whom I have seen. We have traveled quite abit for Lilee. If it is one thing I know it is how hard it is to find a doc that works for you and your child. Myoclonic jerks are hard to determine if they are acutal seizures we thought Lilees had those for the longest time but when we got an eeg done she had no signs of those types. We have found that is was a side effect from her meds. I know what you are going through if you need any help or just someone to vent to please do not hesitate to send me a message. Also one more thing. I know that at times it may seem that your doc knows it all about epilepsy but I have found that even the best Doc's can get stumped and will try almost anything weither or not it hurts the child to see if it works or not. Sometimes it is ok to say no to a treatment. Just remember that there is always more options. Hope to hear back from you.
Also if you live in Idaho the best Doc there is Dr. Bettis and the best in Az is Dr. Caplan although I have heard he has stopped seeing patients and know strictly doing research for epilepsy but maybe if your in the area you can hit him up and see if he will treat your hard to treat case. It is amazing what people will do when they get a hard to treat case like ours. If your in Oregon Dr Robert Wexler has a great rep. He is also an epileptologist. If you have one of those in your area and want to see better results maybe try seeing an epileptologist.
Thank you....I live in Indiana. Lucas had the hypsarrhythmia brain pattern until about 2 months ago so every time they did an eeg they were not able to see what type of seizurs he was having because the hypsarrhythmia clouds the eeg so much with chaotic brain patterns. After the dr put Lucas on a few meds that increased his seizures dramatically, i talked him into putting lucas on prednisone and colanzepam. It took the hyps away so the neuro wa able to see a seizure on the eeg but he did not tell me what kind it was. I assumed it was a myoclonic. Lucas has always been kind of shaky. before we knew he was havig seizures he wold shake and fall over all the time. now that he is on meds he doesn't do that his hands just shake a lot. They believe it may be essential tremors. I think that his neuro has always been stumped. The first med my son was on made him have drop seizures every minute...the second one did fine for a minute but then made him have drop seizures again....third time did the same...this time the neuro wanted to raise his meds and i told him no way that i nkew it was the meds making him have the drops more severe. So then we ended up with prenisone, topamax, and colanzepam...right now things seem to be going good with the seizures. the tremors hold him back quite a bit..he is not yet walking or talking...they say he has low muscle tone..ataxia and hypotonia...we still have no reason for all of this though..how can you treat something when you don't know what is causing it...i search day and night trying to find a cause for all of this. I think we may have to go to Ohio to the shriners for some help. Hope to talk to you soon :)
This is the hardest thing we have to go threw. The best thing we can all do is be our childs best advocate and if we are not happy with what is happen with one Doctor then find another. And I am with ya on looking up everything . I have had to learn about seizures and medicines from looking them up to.
Make sure you childs Doctor runs blood work testing for every thing and anything. Also should be testing there Medicine threw bllod test to see how high they are .
My son has absent seizures and headrop seizures and he also twiches in his sleep and he has also had seizures were he looks like he is going to fall .
Doctors should also be doing an MRI or a Catscan .And A EKG.
My son eeg shows that his seizures are on both sides of the brain . My son also has a VNS in him to help with his Seizures. Nothing has stopped my son Seizures but the Modified Atkins Diet for Seizures is helping some.And taking him off the Topamax .We have also been to see the GI Doctor and going again this Saturday because he has had some problems with going to the bathroom .Could be from all the Medicines but need to make sure because of family history.
Your Doctors could aslo send you to see an Endocrinologist to see if there is anything they might be able to find out for ya. we went and they didn't find anything with my son.
My Daughter also has Seizures now to she has absent Seizures on both sides of her brian also.They don't look like her brothers though.
The hardest part is wanting to help your children and not being able to find out what is making this happen and finding something that works and stays working and worrying about all the side effects that come with all these Medicines. And so many people don't understand what we go threw and how we worry about uor children and if they will die at a young age. Also that they can have a stroke at any time.
Stay strong for your children .
I pray every night for every child and adult who have seizures and there parents.
I thing to know is that you should get your children into speech classes. And when you or any one works with them on learning anything you will have to go over things many times. Because what they know one day the next they may not. This is because of the Seizures.
I am glad to hear that the Keto diet is slowing your sons seizures down a bit. I would be yelling at your Doc though Topomax (topamax) has a side effect of Kidney stones and before he started the diet he should have been off the med or at least in the very begining of the diet. Any who he could be having kidney stones. Has your doc tested your son for LGS. My neuro was telling me that you can see on their EEGs that you can see weither or not they have LGS. I do have a question for you. You said your son has the VNS how is that working. We are trying the diet before we do the surgery and I would like another mothers opinion before I have them cut my daughter open. And what exactly is an Endocrinologist. That is one word I havent heard. I am sorry to hear about your daughter. My daughter has a little brother and I worry about him as well. Statistics show siblings have a 15% higher chance of developing epilepsy. So I keep a close eye on him as well. I have thought about talking to my daughter Doc about doing an EKG just because I feel like her heart beat is a little off. And sometimes she has a funny breathing pattern but all the Doc's that I have talked to about it pass it off like it is nothing. Well now I have another baby and he breathes fine and his heartbeat is normal so it makes me feel like I am not full of it and there is a reason why I should have it checked out. Do you know of any conditions that may cause hard to treat epilepsy in a child but has to do with their breathing patterns and heart rythems? That is one thing my husband I think about a lot. We also dont understand why Doc arent willing to do testing to figure out maybe why the child is having seizures in the first place, other then your infection tests. Anywho I am now rambling. Hope to hear back from you.
As for Doctors we have had our bad share of them. I have had to beg with Doctors to do a EKG on my Son .I have asked the Doctors to test for everything. They did the Gentic testing on both my children and it came back that it is not gentic. My son has had so many blood test 2 Mri and a Catscan because us headaches. And they all come back normal.LGS is know by having more than 3 kinds of Seizures and Medicines wont stop the Seizures.
I also think the VNS has helped my Son Seizures.My Son also has A Service Dog now and that has helped also. The Service Dog can sometime let us know when he is going to have a Seizure just befroe he has one. My Son Seizures are fast and don't last that long.
If your Doctor will not do as you ask and check for everything even white blood cell counts then I would get another Doctor..If you would like to talk to me you can send me a message with your phone number and I would be happy to talk to you. Or if you would like I can send you my phone number.
My son is almost of the Topamax . I am at a point were I want him to be happy and awake and not sleeping so much. Also I was first told that my son had add and adhd and he was on drugs for that because his Teacher at School pushed for them and then two years latter found out he was having Seizures. Children who have Seizures can have a hard time learning and act out and they have know Control over it. Also the drugs they use for add and adhd can also cause Seizures.So some day they may and try and tell you this. And it is not true .
The Surgery for the VNS took about 2 hours . They turn it on about two weeks latter. My son came home the same day. You can't take baths for about two months and know pools. As with all treatment for Seizures every person is different.
Do they know what side of the brain your Daughters Seizures are comeing from?
My daughters seizures start on her left side of her brain. Epilepsy is on my husbands side of the famiy. Is mother has epilepsy and has it since she was a baby. So that is where we are figuring it is from. How old is your son? I have read that with LGS there really is no treatment the best they can do is go down the line of drugs and non medicine treatment. But nothing works forever. I hope this is not the case for you. Have a child who has a hard to treat epilepsy is hard I understand where you are coming from. Not fully cause your daughter is now having seizures and I am sure that it makes it that much harder. You have been in my prayers these last few days. Have you contacted you local Epilepsy Foundation and maybe start going to their support groups. They really can help. I know that sometimes it feels like there is nothing you can do. And I know that you may feel like your not a good mom at times but just remember things few little things. God chose you to be their mother. Because he knew that the love and help you can give them will make it easier for them to get through these hard times. There is also one thing that you can do. I know medically you can only do so much. But emotionally for them you can try your damndest and make them just feel comfortable with what they are going through. Lots of people of seizures disorders and I am sure they all went through a point in their life where they didnt feel normal. But people with epilepsy are just as normal as a person without epilepsy. Our jobs as moms are to build up their confidence so that when they are having a good day they can have a really good day. Good luck hope to hear from you again I enjoying talking with you.
I have made firneds on facebook with others who children have Epilepsy and also have been helping others. Seizures are on my Mom side off the family .The one true thing that has helped me get threw all of this is my faith in god . And I do belive that god has a reason why my children are having Seizures.
We started a website in my Son name to help other Military Familys. My Husband is in the Military. We had to fight for my Son to get his serivce dog into school with him and have helped another family with there childs service dog and there School.
our website if you would like to check it out is theandrewgordenstevensfoundnation.org. It shows vidoes of us being on the News and what others had to say online .
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