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Post by amy708 on May 8, 2009 11:36:13 GMT -5
My son has jncl and recently he has gone through some tough times. His school is talking about not letting him come back! He tries to runaway everyday, he screams, cries, wishes he was dead, beats his bedroom door down and hallucinates alot. This has been going on for about 3 weeks now. Have had no luck with the neuro or psych calling us back either, same story many of you get as well. He has been in the ER and all they do is send him home after a few hours. I have calls out to several psychs and all they tell me is with in 24 hours I will get a call back but in three weeks not one has returned a call! My son no longer sleeps more than 2 hours a night. He has made his brother want to leave all the time and never be home, he is only 12yrs so of course I can't let him stay gone for long! Any advice would be greatly appreciated!!!!!
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Post by corrina on May 8, 2009 12:44:43 GMT -5
Amy do you already have your own psychiatrist? I mean is your own dr not returning your calls or are you calling trying to get an appointment? If it is the latter you might want to try for a referral from your pediatrition or family dr. Here in Illinois child psychiatrists can be rare and usually have a waiting list. When we lived in Peoria, one of the bigger cities in downstate Illinois, we had to go 45 minutes away to find a child psychiatrist who was taking patients. We found her with the help of our insurance company. So you might try them if you find you need to expand your search. We were fortunate when we moved to the Springfield area since there is a medical school here we got a dr without a problem.
If it is the former and your dr is not returning your calls I would definately change drs even though it might be difficult. It is unacceptable to me that they would not call you back. Clifford's neurologist and psychiatrists have always called back ASAP when we've had an issue. I would also call daily if you have put a call in and been to the ER and no one is returning your calls.
If your child is not on meds I would suggest getting an EEG. Your pediatrition or family dr can order one, usually, depending on your insurance. Some of these behaviours may be seizure related. As for the school they can't kick him out for being ill. They have to accomodate him in some way. If it is safer for him and the other students to hve a home program for a while they have to provide that. I'm not suggesting that, mind you, I'm just saying that they have to educate your child no matter his illness while at the same time proving the best learning environment for all students.
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Post by johnheuch on May 12, 2009 12:08:25 GMT -5
Hi Amy.
Please do not feel that you are alone with this. we have gone through much of the same with Nick. Sometimes waiting on the Doctors is more frustratiing than Batten Disease itself. I know it takes time to find good doctors and they may not be nearby, but ask around also ask some of our parents in your area. If you do not know any, please call Amy at the office.
We have given Nick Melatonine to help him sleep from time to time. Also what med's is he on. Our neuro had us supplement a vitamin that has seem to make a big change.
Trust me your 12 year old is not the only one that wants to leave all the time. Please have him get in touch with some of the Sibs they help each other tremendously.
His behavior needs to be addressed in his IEP and this gives them guidlines on what they should do. What is his IEP like? We found Nicks more to be for the school than for Nick.
Please call Nancy at the office and she what she has to say about the sleeping and behavior.
Please email me.
John Heuchan Nick's Dad age 12 JNCL
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Post by Glenda Flatt on May 12, 2009 21:09:27 GMT -5
Hi Amy, We are experiencing the same thing with our son Nick (JNCL). Alot of the same behavior problems. Sometimes I don't know what else to try...it's so frustrating! We do have a pretty good school system. But I'm not sure how much longer he will be able to go.
I wish I could help. Nick is taking Klonopin for hallucinations and Lithium.
It's such a struggle with Batten's!
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Post by GUEST on May 12, 2009 22:58:04 GMT -5
I am so sorry Amy that you and your family are going through this time. I remember what it was for me and my daughter when my son was going through that stage it is horrid. My sons lasted over a period of 3 to 4 years. He was 7 1/2 when I noticed him starting to have behaviors but i thought at first it was him being a boy. The behavior started out slowly then began to get worst. Trips to the ER was on a weekly basis and school if we made it there with out having to turn around and go home only would last 10 to 15 min. till they were calling me to come get him. Hopefully it well get better soon for your family. I can still remember what it felt like to be so scared for him I felt helpless. I had doctors just look at me like I was a bad mom and tell me that the ER was not the answer. He did have a doctor for behaviors and a psychiatrist but they didn't make house calls so when it got bad a trip to the ER was the only thing I could think to do. He was not correctly diagnosed in those days he was labeled blind, MR and ADHD/bipolar. Then came along autistic and so many others. I would see red when they would read off those diagnoses because I knew they was not correct and I wanted them to tell me what my Baby had and how I could fix it. (They were the doctors not me) So I ran doctor after doctor asking for help. Thankfully as of today and I am knocking on wood my son is not having those behavior problems. Something that used to help me through those times was I would try and imagine what it was like for him so that i could stay calm and help him through it. I would get on the other side of the room and start singing his favorite song Silent Night over and over again and I can not sing but it would help if I caught the behavior before it got out of control but like I said we would end up at the ER at least once a week so I was not always fast enough or they would come on in a split second. Still to this day I have to sing to him but it is because he wants me to not because he is mad. So through that hard time we found something me and him do together he tells me what he wants to hear and I sing it and we both love it. So hang in there .
So like everyone else here we have started a new journey we are now going through anxiety BADLY and sleep problems and nothing seems to be helping.
My son was very lucky we have a neurologist that has treated kids with this disease in the past. He did tell me that the behaviors usually come on gradually, peak, then gradually slow down and for me to keep in mind we could still have an out burst now and then but the worst should be over. So hopefully they will for your son soon. I feel so badly for all the children that are and have gone through this. No child should have to go through it and it breaks my heart that they are. Every child and their family's are in my prayers.
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Post by Tina Heuchan on May 13, 2009 8:25:54 GMT -5
I am sorry for you and your family...Its hard for the Sibs not to feel like they don't want to be home. Its hard on the entire family. We have worked very hard to keep our daughters life as normal as possible. Its a tough balance. Contact the sibs program they are a great group... Or If he has a good friend close and you can talk to parents and see if he can stay there on and off when he just needs to get away and you dont have to worry so much about him. We did this with our daughter worked out ok until we could get a little more control of things. It was also good cause she knew she always had a safe place to run and someone to talk to and they would just listen. No judgement. she still visits often with them to this day and she is now 18. I do not know where you live but I would look into the closest children's hospital to you or ask your general Doctor about a ped Psyc...The have the knowledge of the meds you may need... You can also contact your local school for the Blind they have GREAT outreach services. AT the end of Nicks 5th grade year we made the choice to move him to our local school for the blind and out of public school. But it was a natural move cause everyone was moving onto Middle school and going to different Magnet programs. It was a good choice for us... The Middle schools here are way too big and just wouldn't give him the services and help that is needed.
If you are not getting the help you need then the ER should have a social worker come talk to you and give you resources before you leave...They can at least suggest a Dr to get you started.
I called about 20 Dr in our area that accepts our ins. and cause I wanted to meet with them and discuss Nick before I just sprung the new Patient on them.... Well ...I only had 3 Dr. call me back. We did find a good one... He told us up front I know nothing but we can learn about this together. I felt ok with that...as it has turned out he is AWSOME... We just wish we could find a closer Neuro But DC is only about 1 hour away.. and she has experience with Battens So it works. My sons Psych Dr. has no clue but does understand behaviors and the meds we need...I am not real happy with her but I am working on her.
I hope you find some of this helpful Best regards
Tina
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Post by Nancy Peterson on Jun 12, 2009 16:25:52 GMT -5
Those years are etched in my mind forever. Lance told me to video tape the episodes. It took a little pressure to get the doctors to watch, but when they finally did, action happened. A neurologist can prescribe behavior medication. A psychiatrist is best and it doesn't always have to be a pediatric one. At first you think it is behavior, but looking back I now know it was frontal lobe activity in the brain and it had to be controlled by medication. It did finally end, but not without losing some of David. I highly recommend medication, even if it is sedating. Those behaviors can be very dangerous for the child and the people around them. Also, imagine if you were experiencing some of those painful behaviors. We would get medication and relief. We have to advocate for our children. Never hesitate to keep going over heads when you don't get responses. Hang in there. Don't let school people make statements like that to you. There are many laws to protect our educational rights. We have people in the Batten organization to help you. Their school needs should not be a drain on your energy. Use the resources we have to get the support you need. Call Nurse Nancy, Amy, Wendy Bills and Bob Wilhelm. If you need contact numbers call the main office. Their help will really ease your burden. Nancy
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Post by Barb from NY on Jun 12, 2009 18:33:24 GMT -5
Hi, I also am sorry about the behavior issues that you are going through. I remember going through those tough times also with my two boys---it isn't easy! I also used to describe the behavior as like a *switch* going off and on. Fine--then 30 minutes of out of control raging--and then fine again, with smiles and *I love you*. We did not use Keppra. Some of the outbursts could be the progression of the dementia process.
1. How is school going? Is the school work getiing too hard to remember or follow? School might be becoming too difficult for him to keep up with. Can you review where he is functioning and the expectations that are being placed on him? He has to work towards his IEP goals, not necesssarily the same functioning level as the class is. Jimmy used to hide under the desk when it got to be difficult, wanted to go home, or didn't want to get dressed to go.
2. What you might want to do is look at the *placement* where your son is going to school. The pace and activity might be getting to be overwhelming for him. Is he in a regular class with 25 or so kids? Does he have an individual aide to assist? Are there smaller classes? Less pressure?
3. The school still legally has to educate your child, and threatening you with not allowing hime to return is not the answer. Could you meet with committee and the IEP team to discuss other options? Request to see other classroonm settings.
4. You can request a functional behavioral assessment and a see about a functional behavior plan. Ask the school psychologist to observe to see if there are any triggers, specific incidents that are causing distress. You can also ask for an outside evaluation from a psycholgist, or maybe even a neuropsychological evaluation.
4. How is his communication? Is he having difficulty speaking or with word retrieval or with getting the words out? Has the speech pathologist implemented any communication systems or goals? Any simple manual sign language to communicate to you to let **you* know what he is sayning? Any assistive tech? Can he tell you that he has to go to the bathroom? Is hungry? Wants a drink? Can they understand him? The loss of the ability to communicate was soooo stressful for my boys. Jimmy and Steven always knew what they were saying----and were frustrated when no one else could understand!
5. You might want to look into some behavior management courses for you to take ---so you can learn strategies to help de-escalate the situation and so you all can be safe. Here in NY have SCIP training--strategies in crisis intervention and prevention. You could calll one your local provider agencies who provide services to people (children or adults) with disabilities to see if they are offering the training.
6. For when the kids were having drop attacks (myoclonic seizures) or the seizures were uncontrolled, both wore protective helmets, whenever they were walking around. Just in case there was a fall. I put stickers all over the helmet and sent them to school weraing them. I used a regular hockey helmets, a suggestion from the pediatric neurologist. I didn't have to worry so much about a head injury---they still fell beut there was some protection.
I hope some of these ideas are is helpful to you. My thoughts are with you.
Barb from NY
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Post by rreneedoyle on May 21, 2010 11:42:00 GMT -5
hello from Robin,
I have a son who lost all his vision between 5-8 years old. He started having petit mal seizures at the age of 9 in a regular school system. By age 10 he had his first grand mal seizure one week before he was going to Perkins School for the Blind in Boston. This is a fabulous school for the blind that is an option for anyone who has a blind child with other underlying issues. He lived there monday -friday and came home every friday night. At age 13 he was diagnosed with Battens disease and he also had a roommate that had Batten's disease. My son Jordan had to leave Perkins at the age of 16 graduating from the lower school program. He is now in CT living at a group home 5 miles from my house where he has a 24 hour watch. He attends new britain school for the blind but has gradually regressed. My problem is aggression lately and behaviorial issues. We are also having problems getting him to eat. He is having a behaviorial specialist coming to both the group home and school. I have found that putting on a familiar vcr movie or a dvd of harry potter would distract him and get him out of his fit. I was not aware of the hallucinations because Jordan is not very vocal anymore. He has limitations of utterances and one word answers. Although he knows what is going on and loves pokemon and harry potter...any help would be appreciated.
Robin from Bristol CT
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