6 Month Old baby with Epilepsy..

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Judessupermommy2011

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I am trying so very hard to deal with the news of my child with epilepsy, He was diagnosed back in November of 2011. I am just looking for other mothers, grandparents, or what have you, to talk with to try to help me cope. He currently is taking Keppra and Vimpat. He just recently was put on the Vimpat, and was seizure free for 30days. Today unfortuntly was a bad day, He had 2 seizures within 15mins. His neurologist decided to bump up the dose of Vimpat, and within 45mins of the new dose he started having longer and stronger seizures. I am to the point where i need some answers, I have been waiting for over a month to get test results back from his spinal tap. I want to know if he is given a larger amount, does it effect him in a way that could cause him to seize? Is there more wrong? I am starting to question the doctors on their care for my child! are they just trying to push me under the rug and not properly take care of my son? If there is anyone out there with similar stories, or have babies with these same issues please help. anything from anyone other than a doctor would help, there isnt many people out there to talk to about this kind of thing and i just need to feel like im not the only one. :e:
 
I can't really relate since I don't have a child with epilepsy. I do want to give you a big hug, and I hope you get answers soon.
 
I am so sorry to hear that the doctors think he might have a neuroblastoma.

My son was diagnosed at 4months with epilepsy, but he had seizure way before the diagnostic. He will turn 1 in two weeks.
It took some time to get the correct medication/dosage but once we found that, everything is easier. Did he had an MRI before, was it normal ? Do you have a pediatric neurologist ?
 
Hi,
I am very sorry to hear about your baby. I, too, have a baby who is nearly six months old. He has been having seizures since he was just a couple of days old. It is very hard when they are so little and cannot tell you how they feel. In my son's case, he has been taking phenobarbital since the first week and has improved greatly while taking this medicine but continues to have the occasional seizure. I am hopeful he will grow out of the seizures but am also worried because my 17-year-old son was just diagnosed with epilepsy as well and I am finding that epilepsy is a vast topic, indeed. At this point, although I am trying to become more educated, I don't really know or understand what kinds of seizures either of my children is having. My advice is to keep asking your doctors questions until you understand their answers and are satisfied with the information they give you. This is what I am trying to do myself. What kinds of tests have they done besides the spinal tap? My son had a CT scan, an MRI, and numerous blood tests to check for inborn errors of metabolism and other issues. To date, he has also had two EEGs. What makes the doctors suspect neuroblastoma? Does your son have any symptoms of this besides the seizures? Please keep us updated when you have the chance.
 
My son was diagnoised yesterday with Glucose Transporter Type 1 Deficiency Syndrome. He is being transported to Detroit Children's Hospital, and will be going on the Ketogenic Diet.. He had a Spinal tap yesterday and they found that his Glucose was very low in the spinal fluid and normal in the blood. Which then gave them the answer for why all the medications weren't working. My son started out on the Phenobarbital and progressed to the Keppra and Vimpat. They also added B6 to his medications. All his tests came back normal other than the spinal tap. It is something to look into, my son also had the same tests as your child, his neurologist have been amazing and finally we have the answers we have been wanting.
 
I promise I will update you guys tomorrow on whats going to go on with my son, tonight they are just on a watch to see what happens. I hope everyone has a safe and peaceful evening.
 
We started the Ketogenic Diet today, my son is doing very well and it has been a relief knowing my son doesn't have epilepsy, granted I still want to pass my story along and try to help as many families as I possibly can. I have done so much research and found that many children go years before they come down to this conclusion, I feel as if I have been screwed in a ways since I could have had these answers months ago if it wasnt for the MAYO CLINIC loosing my sons first sample of spinal fluid, and I also feel as a parent I needed to make sure someone is held responsible for this error, If we get nothing out of it, I atleast want to make sure nothing of this sort happens to anyone else's family. Being a single mom, and doing everything I possibly can to make sure my son is well taken care of I just couldnt go on without making sure of this. but enough with my ranting on that. My son is on day one of the diet has taken to it very well, we have learned that it is a three step program, he will be doing a 1:1 ratio for the next 3days, which means they will mix the new formula with the old formula to make sure they don't shock his digestive system. Next will be the 2:1 ratio, which he will be on for 2 days. Last he will be on the 3:1 formula which is the complete KetoCal diet. I have never felt so over joyed to hear my son laugh and smile and just be so happy in my life, these last few months have been very hard and I feel as if he knows hes going to get better and be able to learn and not be so behind. I thank all of you for reading my posts and responding. I will help give anyone information on as much as I can. Thank you all again, any questions feel free to ask. I am here to help too.
 
Thanks for the update, I hope things continue to go well from here on out.
 
Welcome Judes mom,

I read your son is diagnosed with glut1 and you state that this means he doesn't have epilepsy. As far as I know the glut1 is the cause of his epilepsy. The good news is that you know what causes it and the keto diet is the only and a very effective treatment for seizures caused by glut1. The diet will definitely help to control most off his seizures. But kids with glut1 on the diet are not 100% seizure free in most cases. I do know several keto kids with epilepsy caused by glut1 who do very well on the diet.
My son is a keto kid for 7.5 years now. He does not have glut1. His epilepsy is caused by braindamage and has developed into Lennox Gastaut syndrome. The keto diet is an effective treatment for about 60-70% of the kids with Lennox Gastaut and helps to get a significant seizure reduction: 50-90% less seizures. 100% epilepsy free is very rare.
I do recommend www.matthewsfriends.org for more information about the keto diet and glut1.
 
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Thank you Dutch Mom!

Yes you are correct, His GLUT1 is associated with the Epilepsy. So far since starting this diet we haven't seen any seizure activity, just his inability to focus and having some twitching and swaying of the head and crossing of his eyes. Which is associated with the glut1. I am just getting so frustrated because they wont tell me anything about whats going on with his twitching and the eyes. I am very happy to hear your son is doing well on this diet. I surely hope my son gets such amazing results, even if its a few seizures here and there it sure would be better than him having over 20 every two weeks. I am very hopeful that things will turn themselves around and get better. thank you so much for the helpful information too! and I will keep everyone up to date on this condition. I want to pass my knowledge down to any other family that may not be getting the proper diagnosis. :e::nerd:
 
my dietitian and I have been going through CharlieFoundation and getting alot of useful information. We also have news from our neurologist that my sons little eye and head episodes are due to the GLUT1. My son is currently on the KetoCal Infant powder but in a low form because we are slowly introducing him to it. currently 2:1 tomorrow he starts the full 3:1 diet and will be being sent home on wednesday. So far no seizure and he is slowly being taken off the medication. We have been told that he will be on these for a long time until he is atleast seizure free or only having a few seizure here and there. The meds he is currently on are a very high dose and need to be taken down slowly to now cause shock to his brain. He also had an EEG done today showing the activity is in his Left frontal lobe. Hes is tolerating the new diet very well and we are having no issues. I am very hopeful of this new change and really looking forward to our future! Mommy is VERY happy!! I'm ready to move forward and start a new better hopefully seizure free life. Thank you everyone for your help and input. I will keep everyone up to date on how things are rolling.
 
Judessupermommy2011 said:
my dietitian and I have been going through CharlieFoundation and getting alot of useful information. We also have news from our neurologist that my sons little eye and head episodes are due to the GLUT1. My son is currently on the KetoCal Infant powder but in a low form because we are slowly introducing him to it. currently 2:1 tomorrow he starts the full 3:1 diet and will be being sent home on wednesday. So far no seizure and he is slowly being taken off the medication. We have been told that he will be on these for a long time until he is atleast seizure free or only having a few seizure here and there. The meds he is currently on are a very high dose and need to be taken down slowly to now cause shock to his brain. He also had an EEG done today showing the activity is in his Left frontal lobe. Hes is tolerating the new diet very well and we are having no issues. I am very hopeful of this new change and really looking forward to our future! Mommy is VERY happy!! I'm ready to move forward and start a new better hopefully seizure free life. Thank you everyone for your help and input. I will keep everyone up to date on how things are rolling.
Click to expand...

*not cause shock* typo
 
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