specialbabies
01-05-2006, 08:01 PM
I have a son who is almost 7. H was born with pierre robin syndrome, pulmonary stenosis, mastoid aircell diease, cleft palate, asthma and is being treated for seizures as well. although Im not sure on the last diagnosis. I have seizures, he had a head injury in 2003 witch does not help doctors much.
He was tested by the school for adhd and she said he does not have it. the therapist was in the class twice for an hours time, and on his good day, we did that twice. So I left that alone.
he has been falling in to walls and everything since he could walk. He started having head drops this year, had 3 big seizures and was put on meds, his seizures have gotten better to a degree, but his violent behavior is out of control. he gets that way than, he may sleep abit in school. He does get violent at home, bangs his head into walls ect...
I follow through at home if he misbehaves at school, he will lose a privilage at home. Im not a mom who is very strict but I have bouderies, he cant play me. I know something is going on neurologically but what I dont know.
I go to a big teaching hospital with him in a few weeks, to try to get to the bottom of this.
Is it true epilepsy or, autism, adhd, or something else?
He has a good teacher but knowing he has conciquences at home, I dont think he goes to school to be bad, because then he will lose a favorite thing at home for the night.
I think he does not get it somehow, am I wrong?
The teacher keeps well notes and some sound like seizures other behavior sounds like adhd and others I just dont know. I want him well and the teacher can only do so much. His teacher is correct if he cant pay attention, he wont learn, on the flip side I would feel bad for disaplining him for something he can not truley control, but until I get an answer from all the specilists at Shands Hospital, I need to keep a united front with the teacher..Im down and out please help????? :confused:
He was tested by the school for adhd and she said he does not have it. the therapist was in the class twice for an hours time, and on his good day, we did that twice. So I left that alone.
he has been falling in to walls and everything since he could walk. He started having head drops this year, had 3 big seizures and was put on meds, his seizures have gotten better to a degree, but his violent behavior is out of control. he gets that way than, he may sleep abit in school. He does get violent at home, bangs his head into walls ect...
I follow through at home if he misbehaves at school, he will lose a privilage at home. Im not a mom who is very strict but I have bouderies, he cant play me. I know something is going on neurologically but what I dont know.
I go to a big teaching hospital with him in a few weeks, to try to get to the bottom of this.
Is it true epilepsy or, autism, adhd, or something else?
He has a good teacher but knowing he has conciquences at home, I dont think he goes to school to be bad, because then he will lose a favorite thing at home for the night.
I think he does not get it somehow, am I wrong?
The teacher keeps well notes and some sound like seizures other behavior sounds like adhd and others I just dont know. I want him well and the teacher can only do so much. His teacher is correct if he cant pay attention, he wont learn, on the flip side I would feel bad for disaplining him for something he can not truley control, but until I get an answer from all the specilists at Shands Hospital, I need to keep a united front with the teacher..Im down and out please help????? :confused:
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BetsyAnn
01-05-2006, 09:04 PM
I am so sorry that you and your son are having to go through so much. I just wanted you to know that my thoughts are with you. I hope they are able to you give you some answers and some help when you have your appointment.
I can relate to your issues with discipline. It is often hard to know when a special child has crossed the line of choosing a behavior ( or lack of behavior) and having no control over it. I have 1 autistic child and 2 with adhd and I face this dilema all of the time.
I can relate to your issues with discipline. It is often hard to know when a special child has crossed the line of choosing a behavior ( or lack of behavior) and having no control over it. I have 1 autistic child and 2 with adhd and I face this dilema all of the time.
specialbabies
01-06-2006, 01:37 AM
Betsyann, thank you for your shoulder. I did tonight for the first time find a medical journal artcle that linked pierre robin syndrome to epilepsy. It took me almost 7 years but I found it. However ill let the doctor come to his conclusion then chime in, if need be. I just want him well and his anger gone. Some seizure meds can make you violent, but he was that way before.
Even seizure activity can bring on violence, depends on where in the brain it is. Neuro stuff is hard and so many things can mimic others, I'd hate to treat him for the wrong thing
I will be yellin your name soon, THANK YOU
Even seizure activity can bring on violence, depends on where in the brain it is. Neuro stuff is hard and so many things can mimic others, I'd hate to treat him for the wrong thing
I will be yellin your name soon, THANK YOU
specialbabies
01-06-2006, 02:41 PM
He has speech and langue delays, is having operation #8 in summer of 2006 for velopharyngeal insufficiency, His head injury his father caused after our seperation( he was 3). I wish I could give more info, but like your idea's.
Thank you
Thank you
specialbabies
01-11-2006, 12:48 PM
Let me start by saying that my thoughts are with you. As a Developmental Therapist, I visit a lot of children with disabilities and their families, and it can be very challenging at times. Hang in there.
Without knowing your child personally, I am making some assumptions that may not be right. I assume that he has good receptive language and at age seven or older understands what consequences are (you mention a head injury, so without knowing more about your son, this may not be the case).
Many children with disabilities have a sense of frustration about not clearly being able to communicate their wants and needs. Frustration can result in acting out as their most extreme form of trying to communicate. Others "learn" that they can get their way by acting out (If I act out, mom will leave me along, or get me what I want).
In those cases, I recommend to parents that they present the consequences as choice the child makes (again, this will depend on the amount of receptive language your son has). Instead of saying: "you acted out, therefore you lose TV", you can say while you child is acting out: "If you choose to continue this behaviour, you choose to lose your TV. If you choose to stop acting out, you choose to keep your TV". Instead of TV, you can use any other reinforcing activity or treat your child enjoys.
The key here is to give your child the power to make the right decision. If they choose to make the wrong decision, they choose their own punishment. At that point, it is much less of a battle of wills between you and your son, but instead you empower him to control his own consequences.
This may take a few days for your child to accept his, but I haven't had a client yet for whom this has not worked in at least improving the behavior.
I wish you all the best and a Happy 2006.
Hey Erika,
Tony went to dr.stieg(PIERRE ROBIN SYNDROME EXP.) today, he is having a sphincter pharyngoplasty. his cleft doctor wants to wait until he is seen by Shands(Feb 8th), and then do the operation for safty reasons( seizuer meds ect...). he may at a later date still need a full closing of the velopharyngeal sphincter , but closing that could cause breathing problems, so he wants to try the lesser of the 2 evils first. He knows the Neurologist at Shands well so that helps. As long as the Neuro says Dr stieg can go ahead, Tony will have the operation ASAP. As far as his seizures Dr stieg feels it may be caused by another(seconary disorder) not accutually Epilepsy. so thats great and not great, depending on the disorder. Children born with antonio's condition have a 50 % chance of getting epiliepsy, but usually as a baby, but that does not mean it cant happen. Very good appt. today. He will stay over night in the hospital, It will feel like a toncilectomy to Antonio :cool: Your advice was helpful :)
Without knowing your child personally, I am making some assumptions that may not be right. I assume that he has good receptive language and at age seven or older understands what consequences are (you mention a head injury, so without knowing more about your son, this may not be the case).
Many children with disabilities have a sense of frustration about not clearly being able to communicate their wants and needs. Frustration can result in acting out as their most extreme form of trying to communicate. Others "learn" that they can get their way by acting out (If I act out, mom will leave me along, or get me what I want).
In those cases, I recommend to parents that they present the consequences as choice the child makes (again, this will depend on the amount of receptive language your son has). Instead of saying: "you acted out, therefore you lose TV", you can say while you child is acting out: "If you choose to continue this behaviour, you choose to lose your TV. If you choose to stop acting out, you choose to keep your TV". Instead of TV, you can use any other reinforcing activity or treat your child enjoys.
The key here is to give your child the power to make the right decision. If they choose to make the wrong decision, they choose their own punishment. At that point, it is much less of a battle of wills between you and your son, but instead you empower him to control his own consequences.
This may take a few days for your child to accept his, but I haven't had a client yet for whom this has not worked in at least improving the behavior.
I wish you all the best and a Happy 2006.
Hey Erika,
Tony went to dr.stieg(PIERRE ROBIN SYNDROME EXP.) today, he is having a sphincter pharyngoplasty. his cleft doctor wants to wait until he is seen by Shands(Feb 8th), and then do the operation for safty reasons( seizuer meds ect...). he may at a later date still need a full closing of the velopharyngeal sphincter , but closing that could cause breathing problems, so he wants to try the lesser of the 2 evils first. He knows the Neurologist at Shands well so that helps. As long as the Neuro says Dr stieg can go ahead, Tony will have the operation ASAP. As far as his seizures Dr stieg feels it may be caused by another(seconary disorder) not accutually Epilepsy. so thats great and not great, depending on the disorder. Children born with antonio's condition have a 50 % chance of getting epiliepsy, but usually as a baby, but that does not mean it cant happen. Very good appt. today. He will stay over night in the hospital, It will feel like a toncilectomy to Antonio :cool: Your advice was helpful :)