RE: update on ocd behavior

[Guest guest]

Corrie,

I think finding the right psychiatrist who understands CHARGE is essential.

Nicky was put on Risperdal (I think thats how its spelled) to calm his OCD

and autistic like stuff he was doing. It really helped but he has doubled his

weight in the past 18 months.

By the way, Nicky too suffered with constipation. I tried everything

including " p " fruits (as suggested by my pediatrician) and the magic bullet

(laxative inserted into the tush). Since I don't have physical custody of

Nicky I

don't know for sure if he still has this problem.

Maybe someone can refer a psychiatrist with experience in dealing with

CHARGE in your area.

sincerely

Ellie J

Becca and Nicky

[Guest guest]

I too wish I could help. From what I understand and have lived through with

Patty is that sometimes her behavior changes when there are health issues

changing. Still today at the age of 20 Patty's behavior changes for a multidue

of

reasons. The most important is of health. When she is sick she exhibits

changes by being really moody and incredibly inpatient. Otherwise you wouldn't

know she is sick. Then there is the sinus issues, her body hurting in

different areas like her knees or her shoulders or her back. Then there are

headaches

or just a stuffy nose, constipation or just plain feeling ucky.

Next Patty's behavor canges due to her OCD and her tourettes. It really

isn't fair to her to not have hr on meds. It isn't anything to be afraid of

eithor. Finding the correct dosage and medication took some time but it helps

more than anything. Without it she climbs the walls. It is as though she is a

different person. I understand that much of OCD and tourettes, and some

behaviors have to do with the chemical balances and electircal misfireing

occuring

with in the brain itself. Her meds regulates things. She couldn't live

without them and neithor could we.

Then her behavior changes when she just doesn't understand what is occuring

within her environment. For example we had thanksgiving with 26 family

members. She became moody and iritable becasue she just couldn't keep up with

the

seeing, hearing, feeling, talking... that everyone else doesn't have a problem

with. It is a sensory overload and people just don't understand that.

Then yet again there are behaviors that occur because she perseverates on

things. She thinks and thinks about things until sometimes they are blown

out of proportion. We have to help her through those becasue she needs to

reamin realistic about life even if they aren't things she wants to hear.

Now with all that it sounds like Patty is a walking behavior. She really

isn't. It has taken years to understand the minute differences. Also she is a

happy, calm and a very sweet young woman. I can just see things coming and if

we don't help her see it then it turns into a train wreck.

Point is, we feel for you and hope with our sharing you might find more

places to look.

Oh, last thing, there was a child about a year or two ago that just had a

terrible time with behaviors and hitting his head if I remember correctly.

Through months and months of going to doctors it ended up that he had something

stuck in his ear canal that also got infected. Once that finally was removed

his

behaviors went back to his usual self.

I wish you all the luck and hope you find the answer soon.

Bonnie, mom to a 22, Patty CHARGE 20 and wife to

[Guest guest]

Corrie,

I wish I knew some solid answers for you. I believe so much of what goes on

in our kids is VERY PHYSICAL. Maybe sometimes explained by pain or a

medical problem, maybe other times being an extreme fluctuation in

neurochemicals that result in these " symptoms " , who knows what at other

times. Watching Dylan when he is " neurologically " out of control is

exhausting. His body goes non-stop and he is not even hurting himself, yet

he is not engaged with people or things, only his body moving. I get so

panicked about what is happen to him neurologically and fear that it will

progress to self injurious behavior etc.

I have tried hard to avoid the " psychiatric " route and am trying everything

I can think of to calm his nervous system without medication. It is not

that I am against medication, I believe often there is a need for medication

and our children's behavior can be communicating that need. I am just

concerned that meds seem to work for awhile and then they stop, so I want to

understand the fluctuations in behavior, and deal with that rather than use

an everyday medication if we can. Dylan meets the diagnostic criteria for

many psychiatric illnesses, but because they fluctutate so much I hesitate

to medicate him.

We had excellent response with HANDLE Institute. I do not think it is a

" cure all " for CHARGE, but believe they have great promise in respectfully

listening to the cues that our children's bodies and behavior are telling us

and then offering gentle exercises to help adjust their state. It is

expensive when paying out of pocket. I just got so concerned about Dylan's

nervous system getting more and more out of control that we were desperate

to try it. In addition Dylan does tend to have megacolon, so the stool does

not move through quickly and a large ball of stool collects stretching out

the colon. When he needs to pass one of these baseballs of stool he will

have definite changes in state. If this seemed to explain all of his

behavioral changes life would be a piece of cake, but I fear it is far more

complex than that. Addressing constipation if it is an issue might help

some.

I hope you find answers to what is behind Peyton's change in behavior and

find a doctor that can help you.

Kim L

Mom to Dylan 8 CHaRGE, Kayla 13, Tyler 16

update on ocd behavior

We are having more and more difficulty with our son.

If anyone knows any " experts " on behaviors they would

recommend, please let us know. We are to the point we would

go anywhere. We live 2 hrs south of St louis.

Meg, are you on the list. Can you recommend anyone? No one

at Children's could help us.

Peyton is inconsolable. He cries, hits himself and screams.

His " good " times are when he is in a neutral state and will

lay in the bath tub or his bed and they are less than half

the time. He's not sleeping much at all either.

It's making our family life quite hard. Our other two

children(2 and 4) are a little freaked by being around this

all the time.

Any recommendations would be appreciated.

Mike and Corrie Young

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[Guest guest]

update on ocdbehavior

      We are having more and moredifficulty with our son.

If  anyone knows any " experts " on behaviors they would

recommend,please let us  know. We are to the point we would

go anywhere. We live 2 hrs south of St  louis.

Meg, are you on the list. Can you recommend anyone? Noone

at Children's  could help us.

Peyton is inconsolable. He cries, hits himself andscreams.

His " good " times  are when heis in a neutral state and will

lay in the bath tub orhis bed and  they are less than half

the time.He's not sleeping much at all either.

It's making our family life quite hard. Our other two

children(2 and 4) are a  little freaked by beingaround this

all the time.

Any recommendations would be appreciated.

Mike and Corrie Young

  

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Get FREE email at:

http://CatholicExchangecom

Your Faith. Your Life. Your World.