Saturday, November 14, 2009

Seizures, complaints, evals, and comments

I haven't had time to update, so this post will contain some of it all!

First off, Jayden was evaluated for both the Rankin County (MS) school system and St. Tammany Parish (La) school system. Rankin County took place last Friday morning. Jayden actually only showed a delay in speech, and tested normal in all other areas. We were not surprised b/c we know we have a very smart, independent, observant little boy. However, in Rankin County, he has to be delayed in at least 2 areas in order to continue therapy through the school system. Jayden would be eligible for services in the school system due to his diagnosis, but the evaluation was to help us know what he would need assistance with. So I think the counselor was a bit concerned to see him only show a delay in speech. As we were discussing that, Jayden was with the SLP and she attempted to transition him from one activity to another and I believe he was just overstimulated by everything going on and he exploded. He started with his high pitched scream and ran through the room flipping over every single chair. I stopped him from flipping one chair over and he punched me then ran over to the LONG table the was filled with items and he swiped every single item off of that table and then punched the counselor who was trying to calm him and ran to the door and started beating and kicking it. All of this while screaming and it all happened in about a minute. He continued to scream and kick on the door b/c he was ready to go and he wouldn't calm down. Finally, we moved him to a room right next door with a little bike, for a change of scenery and he calmed down immediately. Now, the counselor looked at her eval form and was circling answers to about 12 questions without even asking us. She told me that she had her answers just by watching what had just happened and that he definitely will need behavior therapy. Funny, how just the week before his BEHAVIOR therapist told me that he didn't need the therapy. She just has yet to see what happens everyday. So we are waiting to hear back from Rankin County and to meet with the team of people who would be working with Jayden should he start school out here. But, honestly, I am going to avoid that at all costs simply b/c I do not want to go through, with the school system, what we are going through with EI.

Tuesday morning, he had his eval with St Tammany Parish. He walked in there on edge, so they got to see everything from the minute we walked in. He was first seen by a child psychiatrist. She asked what our concerns were and I told her mainly his behaviors. She asked what type of behaviors and he showed her. He screamed at her each time she told him to do something. She asked him to stack some blocks and he screamed at her and swiped the blocks off the table. He continued to knock them off each time she picked them up and then he threw them at her and tried to hide behind Mike's chair. She made Mike push the back of his chair against the wall so Jayden couldn't hide and Jayden tirned and faced the wall instead. She finally got him to come close to her by building a train with the blocks. He sat down next to her and played with the "train" but moved away from her anytime she even lightly touched her. From there she was able to see that he would benefit from behavior therapy and occupational therapy in the school system. Next he had his gross motor skills tested and of course he passed that with FLYING colors. They did a speech screening and did confirm that he's average with his receptive speech but delayed with expressive. Also, they needed detailed info on his health conditions. In the end, they told us that he would more than likely have behavior therapy, OT, ST, and even a nurse due to his celiac disease and seizures. He will have a complete evaluation by each individual therapist prior to entering the school system to determine his delay and the goals he needs to meet. I have to say that I was very pleased with that appt and I feel comfortable with them b/c they seemed to pick up on EVERYTHING without me saying anything.

Wednesday, we had his first behavior therapy session since I filed my complaint. Jayden's caseworker came to sit through the session to observe. The therapist arrived and immediately started trying to engage Jayden. He wasn't in the mood b/c he hadn't had a nap. She tried getting him to sit down and do flash cards, but he wouldn't and he kept flipping the chair over instead. Usually, she would just let him flip the chair and then go about his business until she could con him back to the chair with candy. This time, since I mentioned in the complaint that she doesn't work on his behaviors at all, she followed him when he ran off and carried him back to the chair and made him pick it up. Jayden was so upset b/c he is so used to her just being the "fun, candy lady". He actually even calls her "Candy". So to have her to all of a sudden change gears was probably frightening to him. She should have been addressing the behaviors all along though. So anyway, he continued to be naugthy (although it was NOTHING compared to what he could do. This was just exhaustion and frustration) and she continued t bring him back and correct him when he did something wrong, but I could tell it was VERY awkward for her. She eventually just sat back and sighed and said "It's honestly best to just ignore this as much as possible." To which my husband replied, "How do you ignore this (kicking, screaming, breaking things) in public?" She said, "Honestly, I have no idea what to tell you about that." There. She said it. She admitted that she doesn't know how to deal with behavior problems. She does so well with learning disabilities, but my son doesn't have a learning disability. He has a behavior problem. So she can't help him. I can accept that. What I won't accept is her telling me (and his other therapists) that he doesn't need the therapy. Her advice for home was, "Can you put him in his room and close the door until he calms down. Maybe he needs the escape." I told her, I can put him in his room but only if I want him to pull down the drapes, break his furniture, possibly the window, and hurt himself. Sure I could put him in the room, but I love my child and I don't want him hurt over his behavior that he obviously cannot control. The caseworker then chimed in and said "What you saw today is MINOR." and she went on to tell the therapist how he behaved at the school eval. Then, of course Miss I don't agree with Jayden's diagnosis asks, "Did he qualify for help in the school system? The caseworker told her that he did qualify for speech and behavior. So then she asks, "Well did you get his scores back b/c I would be interested in seeing how delayed he is in speech, if he is at all." You know what? When I do get his scores back, she can believe that she won't be seeing them b/c I doubt if she will still be coming to my house b/c I've had it with her attitude. If you don't agree with my son's diagnosis, fine. But don't constantly come to my house and go against everything that we're being told. It has taken us long enough to have closure with this and move on to getting him the help and care he needs, so I don't need her coming here telling me that there is NOTHING wrong and that it's "just us".

Wednesday, Jayden also had his Neuro appt. Basically, the Dr confirmed that Jayden's EEG was indeed abnormal and that he needed to be started on antiseizure medication. I told him that we've seen Jayden stare off into space, tense up and look spaced out during a tantrum, and also just look spaced out for a few seconds, but never have we seen him behave in a way that we can certainly say he's had a seizure. The Dr said that he could be having seizures all day long that we just are not seeing, but there's also a chance that he's not having seizures at all and the abnormal brain waves could be from something else. So he ordered an MRI and another EEG so that he can read the results himself. He told us that at this point, since the EEG is abnormal we need to treat the EEG. But he wants to find out WHY the EEG is abnormal so that he can treat Jayden, specifically. For now, he is on an antiseizure medication called Trileptal. We have to slowly get him to his proper dosage of 5ml in steps. He takes 1ml twice a day for 3 days, 2ml twice a day for 3 days, and so on until we reach 5ml. I do believe we will have to wean him off of the meds again for his EEG. I'm calling the nurse about that on Monday. Today is day 3 on the meds, and I honestly see a difference in Jayden already. Last night, he stayed with a sitter while we went to dinner for my husband's retirement. After dinner, we called to check on Jayden and the sitter said that he had fallen asleep. This is unheard of for Jayden, to fall asleep when he isn't at home in his bed. He actually crashed on their couch. When we picked him up, he was so pleasant and he had no problem going back to sleep once we got home. And today I let him skip a nap since his Nana and Papa were in town. He was so well beahaved. We even had lunch before my parents left and not a problem out of Jayden. Then we went to Toys R Us to do some birthday and Christmas shopping. TRU was a madhouse, but Jayden handle it so well. Not one problem out of him. And now we are home and he is being so calm and well behaved. I do think that it has something to do with the meds. We will see! Especially when I wean him off b/c if the meds are helping to calm him, he will get very irritable when we wean him off.

So that's an update. I also wanted to mention something that offended me Wednesday evening. Ever since we started to notice that something just wasn't right with Jayden, we've been getting comments from family and friends (even strangers) about how he's "just being a boy", it's a phase, he just needs a spanking, he's spoiled, etc. But of course, you all know that I always went with my mommy gut. I'd be lying, though, if I told you that these comments do not make me feel like a paranoid, over protective, first time mom. Also, I admit to being a control freak, so sometimes these comments make me question myself and if I am just wanting my son to be perfect. On Wednesday evening (yeah we had alot going on that day!), we went to a Veteran's day gathering with some of my husband's military buddies. I was sitting at a table with some of the wives and Jayden was in my lap. He still had his bandage on his arm from his blood draw that morning and one of the wive's asked me what happened. I told her about his appt and she asked me about his seizures. I told her I hadn't actually seen what one would expect to see during a seizure, but he does starte off alot and get glassy eyed at times. She said "Please, I stare off! That's normal." I didn't respond. Why do I need to respond? He has an ABnormal EEG, proving that something is not right. She goes on to say how he's just all boy and everything he's doing is normal. I'm so glad that I never let these comments about what's normal and what's not stop me from fighting for my son. Had I listened to those comments, that him not eating or screaming at the dinner table was normal, I would still be stuffing gluten in my baby's belly and tearing apart his intestines. Had I listened to the comments that his out of control behaviors were simply b/c he is a boy/spoiled/needs a spanking, we wouldn't have had an EEG done and wouldn't be looking further into why that EEG was abnormal. I know that these people are only trying to be supportive, but I'm so thankful that God blessed me with the Mommy instinct to know when something is just not right. Thank you God.

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