Sunday, December 12, 2010

Heartbreaking update :(

My poor, sweet Jayden is just not doing well lately. We saw the signs. I guess I should say we expected this to happen once the current neurologist screwed up his medications. A little refresher: Jayden was on 2 different seizure medications prior to being seen by this current neurologist (he also very frequently had to have a 3rd added when his seizures were out of control) and he was still having at least one seizure a week, from what we were seeing. Well her treatment plan was to wean him off one of his meds and start another. He reacted to the one she started him on and she (not so happily) agreed to take him off of it but never replaced it with anything. So now, he's on only one seizure medication. One that has NEVER worked for Jayden on it's own. She does have him taking 1/2 of a tranxene at night to calm his spikes that occur right before he falls asleep, but nothing to protect him throughout the day. At his last appt with her, which was over a month ago, she told us that she fully expects the seizures to return. She also said some other rude things to me and about my child and simply suggested a behavior evaluation and a psychiatrist. She was supposed to call me back that same day with referrals but it's over a month later and I haven't heard a thing from her.

For a few weeks now, Jayden's teacher has been meeting us outside at pick up time telling us that he is just not behaving well at all. He's hitting other students, hitting the teachers, and spending most of his day in time out for not listening. If he's spending most of his time in time out, then he's not receiving his therapy. I know they try hard with him, but I also know that Jayden has not been cooperative at all lately. Last week, his teacher told me that she's concerned b/c it's a personality change. We've had a very difficult time at home with him as well. He is going completely backwards. Honestly, I feel like we are back to those days where we were so frustrated with him and were beating doors down trying to find out exactly what is wrong with him. He no longer makes eye contact. He screams at the top of his lungs again. He breaks EVERYTHING that he comes in contact with. He cannot sit still for even a second. He's not sleeping well. I've seriously considered begging a Dr to give him something for ADHD. It's gotten just that bad and this is EXACTLY where we were prior to the epilepsy diagnosis. Yesterday was THE WORSE.

I had to work. Mike had to work. My mom had a Drs appt and my dad is still recovering from a knee replacement. My job is wonderful in that I can bring Jayden with me anytime I need to. What's not wonderful is Jayden's behavior lately, whenever he attends. He does not listen to anyone, including me. I had a talk with him before we left and he agreed to be on his best behavior but I knew something was wrong b/c he was clenching on to his blanket and on a good day, Wayne is usually left in his bed all day. Then as we walked out of the door Jayden said "Mommy, I scared." Oh man. This is what he says before a seizure. I texted Mike and warned him that he may have to come get Jayden as soon as he gets off. We got to work and Jayden played for about 5 minutes before he started whining. Then he asked to sit down. Then his eyes got glassy. Then he started the high pitched screaming. His siezures were started. One little girl in childcare said "Oh he's really attached to you!" and the other childcare workers were just walking past him as if there was nothing going on. His seizures are not your typical falling to the floor and jerking around violently. His are quick tensing of the body and loss of equilibrium. He gets extremely dizzy so he clings to whatever is close to him. In this situation, it was the table. I was trying to calmly move him and ask the other workers to help me, but they didn't realize that he was seizing and that this was serious and I needed help. When I said he was having seizures they'd look over like "Really?" but then do nothing to help. I couldn't waste time explaining to them b/c I had to help him so I carried him and grabbed a kindermat and slowly laid him on the floor as he screamed b/c laying flat while you are very dizzy is not easy. He hyperventilated for a minute and I just hugged him real tight until he calmed down. He screamed and whined for about 15 minutes. I ended up moving him to the baby nap room and putting him in a crib. It's cool, quiet, and dark in there. He actually laid in the crib and said "Wooo, thank you!!" Bless his heart! I let him lie down for a few minutes and after about 10 minutes he was climbing in and out of the crib so I knew he was ok. I took him out and he sat with me for a while then asked to go play with the bigger kids (I was watching toddlers). I agreed, but I warned the girl that he'd be extra difficult and probably wouldn't listen well so she could send him back to me. He immediately went over there and started throwing toys, hiting kids, and just not listening, He couldn't make eye contact. It was awful. This was not Jayden at all. Everyone always comments on how well he listens, but yesterday that wasn't happening. The girl sent him back to me. I tried putting him in time out (which he usually goes without a fight) he slapped me, kicked and screamed at the top of his lungs and fell out all over the floor as if something was wrong with him. It was awful. I tried to get him to look at me and he wouldn't. We went in the bathroom so I could try to calm him down and he attacked me. Who WAS this child?! My heart was broken :( He proceeded to break two big toys in the toddler room by throwing them down on the floor. He was OUT.OF.CONTROL. He was being very mean all day. Mike got there to get him just as I was giving him his lunch so we agreed to just let him finish his lunch then he can go home with Mike. He finished his lunch and put on his jacket and I tried explaining to him that Mommy would be home a little later and he was going home with Daddy. He wasn't listening. Instead his eyes darted from side to side. He was pulling his arms away from me. He moved his body all around and paid no attention to a word I said. When he walked out and I closed the door behind him he screamed and hollered to the very top of his lungs. I heard him screaming all the way to the parking lot. I felt sorry for Mike :( I later found out that the entire scene looked as if Jayden was being kidnapped. He kicked and screamed and clawed at Mike. He bit and hit. And when Mike picked him up, Jayden tried to claw Mike's eyes out. Mike couldn't even sign Jayden out, another of my coworkers had to do it. Not only am I humiliated, but I'm hurting for my child. This is not him. He is suffering. I came home and all I could think of was how bad I want to yell and scream and punch out the Dr who has neglected him!! She deserves to suffer the way she has caused my baby to suffer. The way she has caused my family to suffer. It's awful and no one can comprehend how hard this is for us. I'm so glad I have my family to reach out to and to vent to in hard times, but I think that, unless it's your child, you will never fully comprehend the pain and anger that goes into it.

He is certainly back at square one. I know I can look back on this blog alone and see where things were just as difficult in 2009 prior to the EEG findings and started him on the seizure medications. Once Jayden was started on meds for seizures, his prognosis was WONDERFUL. One thing that stands out the most to me, though, are the results of his appts with the developmental pediatrician and the timing of him being started on anti seizure meds. You can read about his first evaluations here and here. And can I just take this moment to say that the second eval post is proof why you should NEVER trust a Dr's opinion over your own mommy instinct. In his "opinion" Jayden was typical and appeared to have no genetic disorder. If you are a followers of this blog, you know that Jayden has since been tested by a different genetics Dr and is missing a piece of a chromosome so he does have a genetic disorder associated with autism. Anyway, those evaluations were done prior to the start of the seizures medications. In August, we went to Florida and noticed strange behaviors so asked for an EEG which came back abnormal. He was started on one medication which was soon increased once the seizures got worse. Then he went back to the developmental pediatrician in June of this year for a follow up. You can read that here. It's in the 2nd paragraph or so, but as you can see, he had made a complete 180. He improved enough to where the Dr no longer felt the PDD-NOS diagnosis was even warranted. Now, though...Now, I believe he would be diagnosed with even more than PDD-NOS. He is right back to where he was prior to the first evaluation. Since he has a history with this Dr, I think it is important for us to followup with her for her opinion on this matter. I'm waiting for a nurse to call me back on Monday to get him on to the February schedule. He also has his first appointment with the Epilepsy Center at Children's Hospital on January 4. It's still a while a way, but it's closer than it was 2 months ago. He's also having another MRI done at the hospital on Tuesday. This was not ordered by the current neurologist (since she believes it's "just who he is" and nothing to do with the epilepsy) but by his geneticist who is extremely concerned with extreme regression and behavior changes. Please keep Jayden in your prayers. Thank you all!

ETA: I want to apologize in advance bc/ I will also begin using this blog as a daily journal now until his appt with the Epilepsy Center. He's been having multiple seizures daily so I need to keep track of them and his behaviors. We are also getting daily video footage b/c I want to be armed with information. I need this Dr to be able to help save my son.


Jess said...

I'm so sorry to hear this. :(

Laura said...

Keeping you all in my thoughts and prayers!