Hello from Alberta Canada

Hi, My son Jack was diagnosed with epilepsy at 1 month old. He has full tonic clonic seizures as well as some small absence seizures. He is currently on a Ketogenic diet, Sabril, Topamax, Keppra and Frissium (Clozapam). He is still struggling with many seizure a day (15-60). He is still undiagnosed with any disease or symptom...which frusterates us greatly. We spend alot of time researching and asking questions in our search for answers. We are currently home from a 2 month stint in the pediatric itensive care unit and are working on getting a 2nd (and third) opinion from a different nuerology team.

we are here for you and you can ask us any thing you want and we will try our best to answer your question for you

Hi My name is Hazel I am 36 years old have been epileptic ever since I was six month caused by a bang on the head I had a rough time at school only because my mum passed away when I was young and only had my sisiter to look after me but now I seem to count numbers when an epileptic turn comes on me and somtimes see myself getting to one hundred It really doesnt have to destroy live please believe me. Think positive.

welcome to the forum any questions please ask

Welcome to the forum, take care luv Juliexx

Thanks so much everyone for all the support. Jack came home from the PICU with his seizures under control for the first time in his short 16mths. He is on 5 different medications now and has been 3 weeks without a single seizure. Still no diagnosis but we have a confirmed date for recieving a second opinion on Feb 26th. This is very exciting news for us all! Hope you are all well. Take care
Salene

Hey jack's momma, What drugs is jack on at the moment? is he still seizure free?, So from what i gather jack has no yet be diagnosed with epilepsy? but on epilepsy drugs?.

Hey hazel welcome to the forums also,

Jack has been diagnosed with epilepsy ( All epilepsy means is that he has had more than 1 seizure). What is causing the seizures is a mystery...He has had a multitude of tests and explorations all to no avail. He is currently on Sabril, Topamax, Keppra, Frisium, Vitamin B6 and Vitamin D as well as the Ketogenic diet 4-1 ratio. In spite of all this he continues to have seizures although thankfully not everyday now. Jack went 3 1/2 weeks without a single seizure then he had 4 seizures in the week that followed. He has since gone 2 weeks without any again. He had a very hard seizure this morning putting him at 5 seizures in almost 7 weeks!!!! This is awsome since he used to have 10-50 a DAY. Our meeting at the epilepsy clinic in Calgary was amazing they seem to want to try to help and continue on looking for the cause of Jack's seizures. (Our nuerologist thinks there is no hope and doesnt want to continue looking for the cause. He is the third nuerologist we have had- the other two have quit Jack's case.) We are so excited to finally find someone that seems to care. We will continue to fight as long as Jack fights Hope all is well out there Take Care and I will update again soon.

Just a quick note to update everyone on baby Jack's progress. He has been doing very well since being released from the PICU in February. He had only a handful of seizures since going on the Keppra and Clopazam (Frisium). He unfortunately caught a small cold 2 weeks ago and had a seiries of seizures for about 5 days (only 2 a day though) and since then has not had a single seizure YAH!!! We are so completely excited! We actually got to see him smile about a week ago. This is the first time since last May (almost a year ago) that he has been able to smile. He also has started to try to roll himself over which to us is amazing! We always thought this was a skill he had lost indefinately. He is much more awake and not sleeping day in and day out now either. So much exciting news. We are so thankful that things seem to be evening out now. Thanks for all of the kind wishes.
xxx Jacksmomma xxx

Just a quick note to update baby Jacks progress. He set an all time record and went 2 days short of a whole month without any seizures!!! YAH! He is gaining strength in his neck and muscles due to some physical therapy. However a new issue has cropped up that they(the doctors) attribute to the seizure meds. Jack has been fracturing his little body since October he has fractured his leg, hip, ankle, collarbone and recently in the last 2 months, both of his legs again. Has anyone ever heard of this??? I can find NO research on this issue at all being attributed to seizures themselves?? He is not yet walking or crawling and the fractures only occur during the seizures. He is on a high dose of vitamin D and a supplement meant for combating Osteoparosis all to no avail??? Any suggestions or similar issues?

Well just a quick update We have had some incredible news!!!!! They now know what is causing Jack's seizures YES he has a diagnosis!!!!! He has been diagnosed with a nuerotransmitter deficiency and an enzyme deficiency. We are so excited as this is great news for our son. There is no cure for this but there is a treatment available! Jack is one of 3 people in Canada with this disease. The Dr. who tested his samples is the Dr. who actually discovered the disease so hopefully the info is correct!! We are so excited at the opportunity to actually try a treatment that may work! Also he gets to come off of the anti- epileptic meds and the Ketogenic diet now. They say it will take one year to wean him off the meds completely after they introduce the treatments. Unfortunately there are 40 different variations of his disorder so it may take some tweaking and trying different things untill we get the right treatment! Still it is HOPE and something to look towards. They say he may gain back alot of his motor and speech skills (although they cant repair the damage the seizures have already done to his brain) We are so glad that we sought opinion after opinion after opinion for Jack we found a superb doctor who shared our vision and NEVER gave up. He even kept Jack's file on his desk showing it to all of his associates and it was one of those associates who finally figured it out!! We travel to Calgary children's hospital on Monday to begin the treatments. Iam an excited and nervous wreck lol. Keep the faith guys and keep asking for answers even if they tell you there are NONE!!!!!xxxxxx and love Jacksmomma

Just a quick addendem... Jack has something called BH4 it is a metabolic disorder which is causing the seizures.

well another update this one not so exciting... one of the tests to determine if Jack actually has BH4 came back inconclusive so it is with alot of trepidation that we wait. Results should come in about a month untill then no treatment can be started. However in the meantime Jack went 6 weeks with no seizures an all time record for him.

Well another quick update on Jack. Two tests came back saying that BH4 the metabolic condition they swore he had is now officially ruled out. lol welcome to the rollercoaster we call life. So we are basically back to square one starting all over again with no diagnosis. Despite all of the comings and goings of our rollercoaster news Jack seems to be doing fairly well. He set a new record for him and went 2 days less than 12 weeks with only 3 seizures!!!!! Then he had 4 seizures in 3 days but seems to be rebounding once again. He is showing signs of regaining some of his early aquired skills however it is very slow progress but progress none the less. His second birthday is fast aproaching in just over a month so we are very excited for that. We also are in the process of ordering him a wheelchair... not sure how i feel about this yet i only know that he is much to large and heavy to be carting all over the place. I was really hoping that he would be walking by now but we'll see. Well that's all for now. Ill update again later
Take care all
Jack's momma