Friday, September 19, 2014

Moments that still impact - Our journey into Epilepsy

     Writing about the initial experience we had with our daughter and her seizures left me reliving some of the experiences that I was finally able to look back on. Because of the way the seizures started I never had time to ask the questions I really wanted to ask. I was blindly following all of the instructions and overwhelming information because initially we were reacting to the emergency that happened.  Once  we started the road to the medicines that stop seizures and I was able to take a breath and start researching I knew that I needed a second opinion.

We are lucky enough to live very close to the Cleveland Clinic and they are on the top 10 list for epilepsy. I called and made an appointment and we went trekking to the massive and state of the art hospital known in our area as "The Clinic".  

The physicians and staff at the Clinic are really amazing. They are informative and our pediatric neurologist as well as our pediatric geneticist were familiar with our other pediatric neurologist at the Children's hospital so I knew we had plenty of great minds on 
the case.



Here is a fact: 7 Hours after my child received her vaccines for her 4 month appointment she began to have seizures. The doctors at each hospital stated over and over that the vaccines were not the issue. My husband and I couldn't and still do not believe that this was NOT an issue. We asked repeatedly if they would at least consider this could be an issue as our seemingly normal 4 month old now has a serious medical condition and that having vaccines 7 hours before could not be purely coincidental. 
The amount of denial that happens over this subject almost drove us mad. 

To this day only one of our doctors will concede that after every test turned up normal that possibly our baby could have had issues with the vaccines.



Fact - We believe in vaccines and the good they do for children and society. We aren't going to take up a poster and start marching outside of any clinics, but for us, for my family we now look at them differently. I reported this to VAERS(Vaccines reporting agency) I never heard back and of course knew that I wouldn't. 

Down this long road we had our child being tested for genetic issues and four of the above mentioned doctors kept telling me that it was more likely that our child could be on the scale for Dravets Syndrome. I waited 5 months and 3 weeks for the results all the time looking for possible signs and symptoms for Dravets(convinced that the doctors were right) and I have never been more worried for every single second, minute, hour or day in my existence. NEVER. I could barely tell my friends how I felt, I couldn't share my fear and I sent up every prayer I could for my daughter.

When her results came in they discovered my daughter did have a mutation on a gene- the gene is categorized as early onset of childhood epilepsy. They have only studied this particular gene for 5 years so the data isn't much but it continues to be studied

This gene is not on the Dravet's scale and the prognosis for this particular gene may have our daughter possibly growing out of the seizures after 2 years old. We hope this is accurate and true for her. 



Fact - We have a 1 year and 3 months of medicine left before they will consider backing her off the medication. We are okay with this as anything that keeps her safe and developing makes us comfortable. We will pray for this day and hope that the prognosis rings true.

Upon further genetic testing they have discovered that the gene for the baby was passed down by me. They aren't sure why I do not now, nor have I ever had a seizure. They do not know why Hayden was triggered by the vaccines. They want to study more and make sure to test my 3 year old daughter so that going forward if she tests positive we can be aware and make sure that her future vaccines don't also trigger her.

I do not know what the future looks like but I have learned many things about epilepsy, uncomfortable couches in hospitals, tests, doctors and the maddening definition of the word Diagnosis. If ever there was a word with barely a definition it would be Diagnosis. 

We have begun to get our now 15 month old daughter vaccinated again and the neurologist has upped her seizure medication to give her extra coverage in case a vaccine gives her a seizure (this was the closest we ever got to them admitting anything about the vaccine). So far we are okay, for safety reasons our pediatrician will push the MMR vaccines until she is older than 18 months because of the likeliness to cause seizures.

Our first neurologist told me that our daughter caused an auditorium full of pediatric neurologist and epilepsy specialist to scratch their heads. She doesn't present in the text book way and so still they study. 

Fact - We will keep watching and waiting and holding our breath every time our daughter is given a vaccine. We will be paranoid for the day she finally gets her own room (see post on building) because her seizures only happen in her sleep we have the security of having her close.  We will continue to hope for a seizure free existence.

During the time I waited for the outcome of our genetic testing I read every thing I could find on Epilepsy and Dravets Syndrome and for each family that put their story out there I want to thank them. I saw such emotion and concern with both positive and devastating outcomes. I pray and think of all of the families and the children. Thank you for putting your hearts out there to share with others. I was scared out of my mind at the beginning and gained knowledge with each click of a link and story from a loved one. 

I do not know our path as we are still early on in our diagnosis and with many questions remaining. If you have questions about our situation, ask me. I am here to share and to offer any support I can. 


This is my daughter now at 15 months, currently seizure free for 9 months and counting.
                     It is for her and the love for my child that I will continue to learn and advocate and fight and have faith.

Part one of our journey can be found here - Moments that impact






5 comments:

  1. I'm so sorry to hear this! She is adorable! I don't know anything about seizures. I will be sending prayers your way! Pinned from Tickle My Tastebuds. I wish you the best of luck!!!

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  2. God bless your little one, she has gone thru so much already. Prayers that she will be seizure free. Thank you for sharing with the Clever Chicks Blog Hop! I hope you’ll join us again next week!

    Cheers,
    Kathy Shea Mormino
    The Chicken Chick
    http://www.The-Chicken-Chick.com

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  3. I'm so sorry, this has to be so tough--I can't even imagine. Warm wishes your way <3

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  4. I'm so sorry you and your beautiful baby girl have had to go through this. Your story was so moving, and I'm sending thoughts and prayers your way. Thank you for sharing it at the Manic Mondays blog hop... I hope your story can make others who've dealt with illness feel less alone. Best wishes!

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  5. I am so sorry you had to go through this! Your daughter is absolutely beautiful God bless her!!

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