RE: Alina//Karmen

[Guest guest]

Margaret, we are taking him to his pshychologist this Fri. We had another bad

evening last evening. We were all in the van going for a drive when the baby

started crying. Talon started out grunting loudly and then got louder and

louder. I knew the crying was upsetting to him. We tried to stop the baby but

he just would not. Then Talon began to hit himself in the head repeatedly. He

was hitting with both hands at the sides of his head. It was awful. It went on

for quite a while. We came back home asap. Today, his face is swollen and

bruised. He looks awful. I called his psychologist about the episode and we

are going to see her on fri. I asked about Prozac. We are working on the PECS

too. He loves to sit quietly and look at books and for someone to read to him.

We have had a behavior specialist but our state has cut that program now...

Indiana I just can not stand this for him. I gave him Tylenol a bit ago to

see if he acts any different. It is 110 in the shade here and has been very hot

this spring and summer so he can not be outside all day....he loves to be out.

He needs his own personal helper to just keep him busy all the time!!!!! And a

very quiet environment!!! I am thinking of buying some gluten free, organic,

sulfite free wine and passing the bottle around!!!! hahahaha We are all just so

upset about what is happening to our little boy. My daughter says he needs

medical marijuana...... not legal in Indiana..... I am just ready to try most

anything to help him. Maybe next med will work

To:

From: mfroof@...

Date: Mon, 21 Jun 2010 16:29:59 -0400

Subject: Alina//Karmen

Hi, Everyone.....Alina.....many of the Respite services have trained nurses

on hand for complex medical kids. You are always encourage to have the

respite worker come a few times and stay, while you are there, to get use to

the child. This is usually covered expense wise, too. Once you are

comfortable with the respite worker, then you go out and enjoy yourself.....even

if it's only for an hour or two the first time. Happy 10th to you and your

hubby!!!

.....I hope made out OK today. I like the 'gruff' voice.......

Karmen.......Gareth was a wicked head banger when angry or sick. He

wouldn't hit himself, just bang his head on the wall, tile floor, stair steps,

etc. The time he hit the tile floor, repeatedly, and acted like it didn't

even hurt was when I decided to start him on meds. I didn't want him to

lose his eyesight or end up in a vegetative state. He started on Risperdal and

the head banging stopped......along with the Dr J/Mr Hyde persona, ODD,

teeth grinding, growling for communication, and sleepless nights. The good

thing about the Risperdal was that after we got his

anger/frustration/behavior under control, he could start communicating and

talking. Granted,

it's only 2-3 word sentences and lots of stuttering, but that's better than

the head banging and growling. Many kids can't handle the Risperdal, and

it's trial and error, but if it's a good fit for your kid, it can make all the

difference in the world. We have tried repeatedly over the yrs to wean

Gareth off it but the aggression/anger/ODD rears it's ugly head, and even

Gareth doesn't like *that* persona because he always apologizes for *being

mad.* If you don't like the results you see after a week or two, then you can

always take him off the Risperdal. Many times, Risp. is given in

conjunction with an SSRI or anxiety med since many of our kids have OCD, anxiety

issues, etc, along with the aggression, and Risp. doesn't do anything for

those. Also, with many of our kids, it's only a low dose that they

need.....othing like the normal population.

Take care, Everyone.

Margaret