My Struggle, My Pain, My Fears

When I was pregnant with my third child, I had the same thoughts as most of you~ it doesn't matter if it's a girl or boy, just as long as it's healthy. I was thrilled to find out it was a girl, especially after two boys. And I was even more thrilled to see a healthy baby arrive. We were blessed...three healthy kids! 

Five years later on the anniversary of the day of her birth, I honestly thought we were going to say goodbye to her. She had a seizure that morning. Not your typical type of seizure, I had no idea what was going on...she went from a confused state to a completely unresponsive state within minutes. It was the worst 10 minutes of my life...holding her lifeless body waiting for the ambulance to arrive. We left the ER that day thankful she was ok but with no answers. It took three months of hard work on my part to get her an EEG and with that came confirmation that it was a seizure and they gave us a diagnosis of a type of epilepsy. They said most children with this only have one seizure and don't need medication. We were happy that with... it sounded like a good and easy diagnosis...no problem. We could handle that. 
At the same time we were dealing with her having issues at school. She was in kindergarden and struggling. We kept hearing she "had trouble focusing" and she was so far behind her peers. Thank goodness my pediatrician encouraged me to have her tested for a learning disability. I admit I was completely shocked when her test came back with so many learning problems for this girl that I considered to be so bright. We were lucky to get her help right away and get her on medication to help her focus at school. But in the back of our minds we felt like the learning issues were due to seizure activity. They reassured us it wasn't related and we accepted that. 

After that, we thought everything was great with her health. She had a wonderful special education teacher at school and she loved her! She was still struggling in school but we were happy with her progress. She still struggles with her behavior (thank goodness for A.D.D. medications) and loses her temper quite easily. 

About 2 months ago she woke up with a strange stutter. It wasn't a normal stutter...it was a "lose your breath and no words come out" type of stutter. It was shocking to hear and frightening. It happened over the weekend and on Monday morning her teacher emailed concerned after hearing it. I called her pediatrician and told her something was off. She said to keep an eye on her and let her know if anything changes. When we saw the Dr that week, I mentioned how odd the stutter was and also told her that Ava had pooped during the night while sleeping that weekend. (Something she had been doing lately at least once a month) My Dr immediately said it sounded like seizure activity. I got her an appointment with her neurologist that next week. I had managed to video Ava while she was trying to talk and showed that to the neurologist. He seemed concerned after seeing that and wanted her to have an overnight video EEG. He mentioned a rare "horrible" form of epilepsy (his words) that we needed to rule out that caused speech issues. 
We went in for her overnight EEG a few days before Thanksgiving...and I'll admit I thought we had over reacted to her speech issues and she most likely wasn't having seizures. I would have known if my daughter was having seizures, right? The on-call neurologist acted the same way and seemed irritated we were there just because of a little stutter. After a miserable night in the hospital (I was miserable....Ava was uncomfortable and not happy...which made me miserable), the irritated neurologist came to our room in the morning and said Ava had some seizure activity while awake but once she feel asleep, her brain was constantly having seizures. She was not sleeping...it appeared that she sleeps but her brain is not resting. They ordered an MRI for the next morning and continued to monitor her that day. Thankfully her MRI was normal and she was put on a anti-seizure medication. Whew...I was relieved!  The MRI was good...so that meant everything was good!  Seizure meds will make it all better and we are good to go. 

The week before Christmas we met with her neurologist just to review everything. I wasn't worried...we already knew it was all good. And boy was I not prepared for that visit. He said what we already knew... she's having seizures at night...MRI was good...she on meds to stop the seizures...and the "horrible" rare epilepsy that causes children to lose their speech and cognitive abilities...we think she might have the early stages of it. WHAT? My face started burning...I turned so red I could feel the heat escaping my skin. I couldn't comprehend anything he was saying. He said he couldn't say for sure if she did or didn't have it. They know so little about it and he just didn't know. If they can stop the seizures, then they can stop the damage. The damage that is irreversible. Most of the children don't regain the speech they have lost or the cognitive ability. I really can't bring myself to write what the damage is if they don't stop the seizures... I just prayed that she didn't have it. 

I was devastated...I didn't want to google it...I knew it would break my heart. But after an hour of being home, I went to my computer. I read about it...and actually felt a little better about it after reading more. But I also felt in my heart she had it. She was such a bright child and I felt something was taking that from her. So many things I read sounded like what we were experiencing with her. I was just happy we had her on medication that was stopping the seizures and more damage.

And 10 days after that appointment, she had another seizure in the middle of the night. (we know this because had another "poop" in the night). I knew then we needed to get serious and see a specialist in this type of epilepsy. Every seizure takes more away from the child. We did notice her speech was affected a small amount by it but not a big change from before. The Dr increased her dose of medication and I started searching for a specialist. I got on forums and Facebook groups for this type of epilepsy... and one name keep appearing as the top Dr in the US that treats this condition. We have an appointment to see him at the end of January in New York. 

Five days ago, she had another seizure during her sleep. It took so much of her speech that I want to cry. I'm honestly heart broken...she can't ask me a question or even tell me something with struggling beyond belief. It's not a stutter anymore...it's a sad struggle with her brain thinking and wanting to say something but somehow it won't let it out. I'm scared...I'm so scared for her! We take our speech for granted...but when it's slowly taken away,  it's terrible. And from a child! A beautiful little seven year old girl! Kids are cruel...how will they treat her? Of course they will make fun of her, no matter how much I want to hope they don't, they will. They will judge her. People will hear her and make judgments about her... and I want to cry and change this for her! I want to make her better!
And with each seizure, she will lose more. Please let this medicine work...please God let this medicine work. 

I'm feeling helpless...but I can do something to help her. I can ask you, my friends, to pray for her. Please pray for my sweet Ava. Please.