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| | From:  SamIam1084 (Original Message) | Sent: 5/26/2008 4:30 AM |
It's been a month since Dom's seizures and hospitalization and I'm finally seeing the impact it has on him. It's as if this year never happened! We had a meeting at the school the other day, more like an ambush! He had a bad morning and I got him to school. I get home and go back to bed. 9 a.m. they want me to come up to bring another shirt because it "bugs" him. I talk Dom into coping until noon. I was so exhausted and needed a nap. I get there at 11:30 a.m. and I change his shirt and get pulled into his speech therapy office. His teacher tells me what troubles he's been having all morning. The speech teacher also adds her $1 worth, then asks if I want to stay because an AI (Autism) Consultant is coming in a few min. I stay. Now he's freaking out because, "He's never seen Dom this way before." It's 12:30 and they all invite me to a meeting at 1:30. I go home, shower, eat and go back. I am ambushed by the aide, AI consultant, Social worker, Queen B (Special Ed Director), Speech, and Special ed teacher, but no regular ed teacher. They didn't invite her. They all tell me how worried they are about him. After being ambushed, I go home get ready for class. After a few days of digesting what happened, I am thinking, no wonder they are all freaked out! They've never seen Dom this bad after a seizure. They are worried as to what to do for next year, yet they don't even know what to do now for him. He's lost all his skills! He can't even go to the bathroom without being told how to do it! They think he had a stroke! They want me to insist that he get an MRI and yadda yadda yadda! I am thinking that these seizures were so bad that they did a heck of a number of him. It's been a month and he has not recovered. When he walks, he stumbles around. He is easily frustrated and meltsdown easier. I feel so bad for him. I know he senses that he's different. He has to. My plan is to just pick up where he is and move on, that is, to find out what level he is at and re-teach him. We've done it before. My poor baby.
Sam I am |
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Sam,
I'm going to play devil's advocate, because I've been epileptic all my life and I've been where Dom is now. First, did Dom hit his head at all? The problem he's having with comprehension and motor skills echoes two things that happened to me. One, I had a seizure and hit my head and thought nothing of it, but then later had problems walking, understanding what people were saying, keeping up in class, etc. Turned out I had a full concussion and skull fracture in two places. The second was reactions to my medicine, especially Dilantin. I'd become toxic on Dilantin about every 18 months. I was not doing it intentionally, it just built up to a level in my system that I couldn't use, and was all of a sudden OD'd. Each time I'd be in the hospital for a week, while they drastically reduced my meds and had a syringe of Valium strapped over the bed, just in case.
If you don't think any of this is applicable, then it is going to be just as you said - relearn again. I've had to do that a couple of times. Each time the blessing in it is that although I knew I didn't know any thing (or anyone in one episode) something in my system was suppressed and I just didn't become drastically depressed. I wanted to relearn. But each time it takes longer and longer. I told my sister it was llike my brain had to build a new highway, bridges and all, for me to be able to read and remember again. That's fairly close to the truth.
We'll all keep you and Dom in our prayers.
Milinda
From: [email protected]
To: [email protected]
Subject: Loss of skills
Date: Sun, 25 May 2008 20:29:59 -0700
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Loss of skills
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| From: SamIam1084 |
It's been a month since Dom's seizures and hospitalization and I'm finally seeing the impact it has on him. It's as if this year never happened! We had a meeting at the school the other day, more like an ambush! He had a bad morning and I got him to school. I get home and go back to bed. 9 a.m. they want me to come up to bring another shirt because it "bugs" him. I talk Dom into coping until noon. I was so exhausted and needed a nap. I get there at 11:30 a.m. and I change his shirt and get pulled into his speech therapy office. His teacher tells me what troubles he's been having all morning. The speech teacher also adds her $1 worth, then asks if I want to stay because an AI (Autism) Consultant is coming in a few min. I stay. Now he's freaking out because, "He's never seen Dom this way before." It's 12:30 and they all invite me to a meeting at 1:30. I go home, shower, eat and go back. I am ambushed by the aide, AI consultant, Social worker, Queen B (Special Ed Director), Speech, and Special ed teacher, but no regular ed teacher. They didn't invite her. They all tell me how worried they are about him. After being ambushed, I go home get ready for class. After a few days of digesting what happened, I am thinking, no wonder they are all freaked out! They've never seen Dom this bad after a seizure. They are worried as to what to do for next year, yet they don't even know what to do now for him. He's lost all his skills! He can't even go to the bathroom without being told how to do it! They think he had a stroke! They want me to insist that he get an MRI and yadda yadda yadda! I am thinking that these seizures were so bad that they did a heck of a number of him. It's been a month and he has not recovered. When he walks, he stumbles around. He is easily frustrated and meltsdown easier. I feel so bad for him. I know he senses that he's different. He has to. My plan is to just pick up where he is and move on, that is, to find out what level he is at and re-teach him. We've done it before. My poor baby.
Sam I am | |
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Reply
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Thanks Melinda,
I don't know if Dom hit his head when he fell down the stairs. When he had his seizures he was laying on the couch that doesn't count. I just think these seizures were really bad and it's taking him longer to bounce bad. I think the staff at school is over reacting. We'll have his IEP June 3rd and we'll come up with some ideas.
My e-mail is: [email protected] for anyone who wants to e-mail me privately.
Thanks again,
Sam I am
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I'm very sorry to hear what you are going through. I hope the doctors can do some kind of testing and figure out what kind of meds will really do the work to help with the seizures. I can truly understand your frustration as it took quite some time to figure out a good mix of meds to control mine and undergoing a couple surgeries. Hang in there. I hope there are good teachers and other understanding students to give the support at the school to you.
Jana |
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Thanks. It's been stressful and I know it has to be hard on him as well. He has to know. I'm thinking of calling his therapist and setting up an appointment to help him. I don't know what else to do. I've tried talking to him but I don't know if I'm getting through to him. Maybe his therapist can.
Please send prayers,
Sam I am |
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Reply
| | | From: vickie | Sent: 5/28/2008 4:01 PM |
May I ask sam, is that at a school or a hospital? And if a hospital which one. I think I would want a second opinion. even if some of what they say if true. Sometimes some places stretch things. I have been epileptic my whole life. The schools I went to in Maine tried to prove me unfit to be in a public school because I had epilepsy. So if it is a school dept. Don't believe everything you hear. Even with doctors your better to get a second opinion. It doesn't hurt especially if your son got hurt at one time or another. If you want to talk some time give me a call. (603)752-5642 (home) (603)723-3447(cell) Take care Vickie |
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Yes SamIAm, we will keep you in our prays.. Like Milinda, said meds can do that as well it can do some reall bad things as any of us, I would think most of us have been through that. I used to pee my pants in school all the time. I was so embarresed. I bet we all would just like to hold him and tell him he will be ok, but the Drs. have to be a big part of the and so does the school. If you want to chat call me hun. Hugs, withangels |
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Hi Sam, Im sorry for the late reply but I was in the hospital myself. I read your e mail carefully and agree with the need for an MRI. Ive had seizures that made me regress terribly for some time and now that I am back I dont remember all the hell I went thru or my daughter except for the pain in my limbs and head from the fall. I am praying for your strength and Dom's recovery. I wanted to ask what kind of school Dom is in and why everyone is 'freaking out'? My daughter is a special ed teacher at a BOCES and teaches children with all kinds of disabilities. If something major shifts the teachers will have a meeting but the parent is always included and in a respectful manor. There is no need for you to be ambushed. It doesn't help your anxiety or Dom. My son was learning disabled and I had to do the yearly IEP meetings as well. I remember one year around 3rd grade having a special meeting because they thought my son had another problem. I did feel I was being cornered but I set the tone for this meeting. Nothing was going to be said or done without my being there. Make sure you have your parent advocate with you at this meeting and if you can, set up a meeting with this person in advance. I hope you get the answers you need and your anxiety eases up as well. take care sweetie..Dom needs you. Lori  |
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Thanks Everyone for your prayers! Dom called me a Dumb A$$ this morning. It's his favorite choice of swear word lately. He's swearing more, being mean to everyone. He even swears at my mom's house! It's like someone pulled the switch in his inhibitions. There's no filter, no control. I'm calling his behaviorist tomorrow because I know she works closely with his neuro. I can't get through to him but she can. I'm desperate. I made an appointment with his therapist. She's in the same office as my therapist. No school relation. The school is freaking out because they have never seen his behavior like this before. We have. We live with the kid. But there is something going on and I want tests done. Something happened on that Sunday night that took away my baby. It's been over a month and he's not back to himself. It's like this year never happened. Do you know my 5 year old can wash himself and wash his hair and yet Dom is 9 years old and I'm still bathing him? It breaks my heart. I feel like that mom in "Mr. Holland's Opus" where she is screaming, "I want to talk to my son!" I am screaming, "I want my son back!!"
Thank you all of you for being here for me. I want to slap every doctor when they say, "Seizures are benign or harmless". They lie.
I need to go to bed and dream about Hawaii and just relax. On a good note, I finally got my cast off and went shopping today. I'm trying not to overdo it. I'm so excited to get that darned thing off.
Take care,
Sam I am |
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I completely agree with Vickie. If you aren't 100% sure that you agree with the neurologist that you are seeing I would suggest that you see your PCP and ask for a referral to ask if they know of another one in your area. I know now personally that I had been seeing one for years. Ya, I may have liked him or didn't have a problem with him but my parents I know personally didn't really care for him all that much. Now though since that one that I was seeing himself referred me to a different one 'cause he wanted a 2nd opinion on how I was doing and after that we liked that doctor so much better we just continued to see that doctor. So never hurts to try.
Jana |
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