behavior problems

[Guest guest]

and Gwen and anyone else interested, I understand locking

yourself in a room to get away. We used to have to place Hannah in

the the foyer and watch her through the window to keep her from

hurting herself and others. I rarely took her anywhere while she

was like that because she would just flip out with no warning. It

was a nightmare. We tried the Zoloft first and saw minor improvement

and then added the Risperdal and saw more improvement. Then they

upped the dose of Risperdal and she was better but slightly

depressed so they upped the Zoloft and that worked the best. It was

scary for me but not as scary as the behaviors! We added the Focalin

when school started this fall and that really calms her so that she

can sit at her desk and focus and do her work and so her frustration

is so much less. One of you asked if I saw any Risperdal side

effects and I only saw the slight depression and I am not convinced

that it wasn't actually there all along but hidden by the

behaviors. However if your child is anywhere on the autistic

spectrum, Risperdal is often prescribed for these kids. I know with

Hannah that once she was taking it regularly she had much better eye

contact, her echoing occured much less often, she was much more

interactive with others and affectionate etc. She still would not

be mistaken for a " normal " child but she really has improved. Please

understand that I don't mean any of this as medical advice, I just

want you to know that there is hope. Don't give up until some Dr

listens to you and helps you.

[Guest guest]

All this time I really thought that what we were seeing was autism, high functioning but autism none the less...

for years we have been told bi polar, but he gets so intense and rocks and drools and then goes back to being a toddler acting age where he sobs and needs someone to hold him as he cannot snap out of it...then other times he becomes so verbally abusive with swearing and screaming. It is really bad. He has found any object he can and uses them as if they are weapons and has grabbed at knives and told people to stay away from him. He has never ever gone after anyone with a knife and when he is not in this "episode" he would just as soon die as realize he has done this. Its the drastic flipping that gets me all upset. He cannot accept change, confusion, noise, anything out of his patterns that he has created. he definitely has been diagnosed as having sensory integration issues. Being tired makes it all the worse, he seems a little better with his CPAP but he refuses to use it all that often...(another story) and then I have also noticed it comes in cycles...but cant figure a trigger except if it is out of his pattern or order. We have also questioned seizures as he absolutely acts like he is having one, then has the periods of sleeping for hours and days...it begins with wandering, confusion, and builds up to screaming and swearing all the way to anger and throwing, ripping or destroying things. once it is over he is exhausted, acts like he is 2 and then cries for a long time until he has I love u'd to death and then sobs himself to sleep...once he is done he often forgets what has taken place, but a lot of time he remembers...so it may be more than one thing going on. I am just really tired of it all and he is getting stronger. the behavioral dr just says he is angry with mito and that he needs counseling. we have done therapy, therapeutic afterschool programs...and even meds..NOTHING! We are frustrated and certainly not sure where to go.....somedays I just want to admit him to a psych hospital but afraid it is not the right choice. No one has ever said Mito is to blame, but I am wondering now.....

but boy do I feel better knowing others are dealing with this as well....

Donna

mito mom to 5 mito kids

behavior problems

and Gwen and anyone else interested, I understand locking yourself in a room to get away. We used to have to place Hannah in the the foyer and watch her through the window to keep her from hurting herself and others. I rarely took her anywhere while she was like that because she would just flip out with no warning. It was a nightmare. We tried the Zoloft first and saw minor improvement and then added the Risperdal and saw more improvement. Then they upped the dose of Risperdal and she was better but slightly depressed so they upped the Zoloft and that worked the best. It was scary for me but not as scary as the behaviors! We added the Focalin when school started this fall and that really calms her so that she can sit at her desk and focus and do her work and so her frustration is so much less. One of you asked if I saw any Risperdal side effects and I only saw the slight depression and I am not convinced that it wasn't actually there all along but hidden by the behaviors. However if your child is anywhere on the autistic spectrum, Risperdal is often prescribed for these kids. I know with Hannah that once she was taking it regularly she had much better eye contact, her echoing occured much less often, she was much more interactive with others and affectionate etc. She still would not be mistaken for a "normal" child but she really has improved. Please understand that I don't mean any of this as medical advice, I just want you to know that there is hope. Don't give up until some Dr listens to you and helps you. Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Donna and all here dealing with the behavior nightmare. Donna what you desrcibed was our to a T. She did attack me twice in my sleep with a knife and all the other things you described we have been there.

We have known was ill since birth but always got the your the bad mother thing and she is just a bad kid story. Finally when she was 11 we got a diagnosis after a biopsy and seeing Shoffner in Atlanta. I know your frustrations and pain and the overwelming struggle of not being able to get a handle on this and the thought of loosing my mind and my child hurting herself or me or others was just horrible. We took for a ten day hospital stay so they could do more testing, try to find some medication that would stop these KAMAKAZI episodes.......thats a great word for it! and it was a total nightmare. They eventually put her in the psyc ward after she attacked a nurse and broke the nurses arm. We had armed guards at our hospital door and they kicked us outa the Mc House and we were 8 hours from home with no place to go. I can tell you be very careful because they can do things and recommend things that will emotionally affect your child and you forever. They took off all her meds cold turkey after I told them they could not do that and thats what caused her to go balistic and attack the nurse. The Dr left and told us not to call him because he was with his family. I finally had to call a lawyer and pitch a royal fit to get them to dial his number so I could blow him out and threaten him if he did not do something. They gave her benadryl and 8 attivan. I told them benadry made things worse and not to give it to her but they did not listen and lied and told me it was another med. * attivan would have knocked me out.....well Ms. was all over that room. She threw a pulse ox monitor, attacked me and she even took on the huge burley cop that was guarding our door. They put her under a net flat on her back in bead to restrain her. That was horible. She was vomiting all the time then and one time she was choking on her vomit because I could not get the net undone to sit her up. Called for help but no one came to help me. When they did finally come I had cut the net off myself. beat herself through us and ran into the hall pulling all the fire alarms as she ran. Everyone was afraid of helping me after the nurse got hurt so my child ended up in the elevator going who knows where with vomit all over her and you could hear her screaming I hate you all the way. When they put her in the Psyc ward things got even worse. The both of us have scars from this. I would never ever let them put her there again....ever! We had told them that she had never been away from us before and asked if she could keep her blanket during this time. They said oh yes. Well when I went back for twice a day during visiting hours the first time they would not let me see her. This happened the second time as well so I never saw her that next day. I was furrious and I know she was so scared. I finally had to get the hopital adm. to get me in and when I did she was sitting in a small room with no light, furniture or anything slumped down in the corner. They had taken everything that was hers away from her and she could not understand what was happening. Back then she went from being an infant to being a teenager back and forth. And she could not think on any more that a preschool level.

We had crib toys on one side of her room and teenager stuff on the other. Boy what a rollercoaster it was. Respite time will take a load off of you and will enable you to handle the rough times much better....it was a lifesaver for me....I was deffinatly on the edge. Also no meds or therapy ever worked for us. The best thing we found was to put her in her room when she was violent and we put an outside slide lock on the door to lock her in. We also put a peek hole in the door so we could see her and make sure she was not hurting herself. We kept telling her that if she broke anything that we would not replace it so she would not have it anymore. Believe me there was alot of things broken along the way. This kept her from hurting us and damaging and breaking things throughtout the house. Kept it to her room and her things. I also knew that alot of times she could not help what she was doing and when I quit trying to treat her like a normal child and realized she could not help it things got some better. Today she automatically goes to her room when she is feeling mad or frustrated and nothing has been broken or destroyed in a long time. She cools off by herself and then comes out of her room a different kid. We had a celebration and removed the lock from her door and we put white out over the peek hole as well. We celebrated her good behavior and know she has earned her privacy. But she knows if she starts this again we will put the lock back and take off the white out. She has been so much better since last May. No longer bound to her powerchair, no more meds....30 of them and back in school for a choir class and a special ed science class with three students and an awesome teacher two hours sometimes all week sometimes two or three days. One day is a miracle so I dont worry about it if she is tired and not doing well I dont send her. She also has a homebound teacher that comes to do socialization and fun stuff and field trips on Fridays when is doing good.

Sorry this got so long. I just wanted you to know that I have been where you are and it is extremely hard but DON'T GIVE UP! Things can only get better!

Get some respite are and it will make a world of difference. Try Medicade, Childrens rehabilitation services, Easter Seals, Rotary or Lions Clubs, Churches ect. Tell them what you need and see if they will pay for it. Make it a project for a youth group. Maybe they can do fundraisers to help. Dont be afraid to ask for help. There are those who are looking for ways to help others but they cant help if they dont know there is a need.

Know that I am thinking about ya and praying for you and yours.

Please email or call anytime.

Blessings,

Horsley

leehorsley@...

behavior problems

and Gwen and anyone else interested, I understand locking yourself in a room to get away. We used to have to place Hannah in the the foyer and watch her through the window to keep her from hurting herself and others. I rarely took her anywhere while she was like that because she would just flip out with no warning. It was a nightmare. We tried the Zoloft first and saw minor improvement and then added the Risperdal and saw more improvement. Then they upped the dose of Risperdal and she was better but slightly depressed so they upped the Zoloft and that worked the best. It was scary for me but not as scary as the behaviors! We added the Focalin when school started this fall and that really calms her so that she can sit at her desk and focus and do her work and so her frustration is so much less. One of you asked if I saw any Risperdal side effects and I only saw the slight depression and I am not convinced that it wasn't actually there all along but hidden by the behaviors. However if your child is anywhere on the autistic spectrum, Risperdal is often prescribed for these kids. I know with Hannah that once she was taking it regularly she had much better eye contact, her echoing occured much less often, she was much more interactive with others and affectionate etc. She still would not be mistaken for a "normal" child but she really has improved. Please understand that I don't mean any of this as medical advice, I just want you to know that there is hope. Don't give up until some Dr listens to you and helps you. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.