mom to justin

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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bbbecki78

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HI, I am new to this site. My son is Justin and he is ten months old today. He was diagnosed with a seizure disorder at 4 months old, the evening of his four month old immunizations. He has had three inpatient stays at the children's hospital and many ER visits over the past five months due to prolonged and frequent seizures. Justin has had a normal MRI and normal blood and urine tests. His EEG continues to be abnormal. Justin is also developmentally delayed and received physical and occupational therapy weekly for him. This has been such a struggle for my family. I have a healthy eight year old daughter and a husband and we all love Justin so much. It is so hard not knowing the cause of all this and worrying about the developmental milestones he is not reaching, although there is some improvement. Justin is on phenobarb and topomax. The levels are always being adjusted, increased rather due to break through seizures he has. Sometimes he goes a couple weeks at a time with no siezures and other times he will have 15-30 in one day. I am hoping to be able to talk with others who share similar stories and can relate to the heartache this causes, the fear and the hope.
 
Hi Becki,

Welcome to the group. This is a wonderful group of folks here. It has been truly wonderful for me..very supportive and informative. There are other parents here as well. You came to the right place for answers and support!!
We all try to help each other! I am a 41 yr. old Mom, married and we have 2 teenage children. Welcome again to the family! Hope your little guy is doing well!

Michelle : )
 
Hi there, Becki!

Welcome to CWE! You've found the perfect place to be!
This is a wonderful home away from home, full of friends and cheer and encouragment. Mr B is a WONDERFUL host, and Ms. Stacy a TERRIFIC hostess.

Settle in, and make yourself at home. You might want to check out the epilepsy 101 thread. I know I didn't put it in here right, but you can still get to it......
http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

Feel free to hang out, ask questions, and be a welcome guest!

Meetz
 
Hi Becki - WELCOME!

I have a Rebecca who is called Becky by many of her friends... and Becca.

I am so sorry your little one is going through this.
Have you looked at some of the sites that show kids with other neurological issues are being healed following vaccines?

We have started a few threads about this subject .. Happy Reading:

http://www.coping-with-epilepsy.com/forums/f22/vaccine-related-seizures-2607/
http://www.coping-with-epilepsy.com/forums/f22/common-foods-attacking-your-brain-toxins-3252/
http://www.coping-with-epilepsy.com/forums/f22/contaminated-vaccines-3387/
http://www.coping-with-epilepsy.com/forums/f22/mercury-toxicity-3027/
http://www.coping-with-epilepsy.com/forums/f22/mitochondrial-dysfunction-seizures-2849/
http://www.coping-with-epilepsy.com/forums/f22/virus-connection-seizures-1220/
http://www.coping-with-epilepsy.com/forums/f22/aluminum-vaccines-1945/
http://www.coping-with-epilepsy.com/forums/f22/food-intolerance-viruses-epilepsy-1315/
 
All I can say is that my thoughts are with you. I have a 10 yr old daughter with ?possible? Epilepsy (suspected absence seizures...diagnosed/then undiagnosed..) but I also have a 4 yr old who suffers with multiple medical conditions that has two years worth of development delay.I know how worrying it can be to witness seizures of any sort in one of your children and also to worry about how a child:rose: will cope when they are not meeting the milesones as they should.After LOTS of physiotherapy/occupational therapy,my son took his first steps at 2yrs and 7 months,and after speech therapy said mum for the first time at 3yrs and 1 month..it was the sweetest sound ever.As long as a child is loved,they will reach their full potential,and be happy,and that is what matters.i wish you and your family all my best wishes during this difficult time,and hope that there are better times round the corner for you.:rose:
 
thanks

thank you. I have tried other forums and have had such little success with responses. Thank you so much for welcoming me. I will check out some of the other threads that were mentioned.
 
Hi bbbecki78, welcome to the forum. :hello:

bbbecki78 said:
He was diagnosed with a seizure disorder at 4 months old, the evening of his four month old immunizations.
Click to expand...

Wow, that was some fast reaction to the vaccinations (assuming they were culpable, which seems plausible to me). Did he run a high fever at the time?

Make yourself at home here. Hopefully, you will find some useful nugget of information that helps Justin (or you) in his (your) journey.
 
There have been cases where the child is seizing in the car on the ride home.
So many cases to choose from but here is a doctor speaking about his theory:




there is a plug for a lab at the end, but the information prior is very informative

This video is worth watching too. Dr Healy is the former NIH Director (National Institute of Health):

http://www.cbsnews.com/sections/i_video/main500251.shtml?id=4088138n
 
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