Re: S.I. and meds

December 28, 2001

Dear Robin,

Hi. My daughter Annie is now nine and has been on medication for OCD

for most of two years now. She has always had problems with tactile

defensiveness also, and for what it's worth, medication has helped

tremendously. Her worst issues are hair brushing and washing , which peer

pressure is gradually defeating, and teeth brushing. Anything in her mouth is

difficult and always has been. Even as a weaning toddler she wouldn't eat a

banana (never has eaten one without gagging), or any cereal or mashed food

or, or, or.... Recently we took a break from SSRIs because she had such

miserable side effects from Luvox (behaviorial stuff - extreme recklessness,

hyperactivity, etc.) and she gradually quit eating altogether. Putting

anything in her mouth -even liquids - made her cry. After ONE WEEK on a very

low dose (5 mg.) of Celexa, she was able to eat again and is getting better

and better. She now has about 10 things she will eat, instead of one or none.

We had great success with Paxil for a year as well, but then it seemed to

quit working. She may just have needed an increased dose, but her psych.

switched her to Luvox instead and a nightmare ensued. So far (about one

month) we have seen no side effects to Celexa at all. Her OCD is still not

completely controlled but the sensory issues are much, much better. And she

is happy, which is a big thing. A month ago she was either furious or in

tears all the time.

For Annie the combination of a wonderful therapist who works with

her on the sensory stuff (they brush their teeth together at each

appointment, in wonderful silly creative ways) and on E & RP for the OCD

stuff, plus medication, has made the difference between existing in misery

and living as a nearly normal nine year old.

Hope this helps. Feel free to ask more questions if it hasn't!

in Nevada, mom to Annie (9 with OCD and way too many raw nerve endings)

and Ben (6, with an attitude )

December 28, 2001

Hi List,

I've been away long enough that I feel the need to re-introduce myself and

my daughter. Robin here, from Hawaii. I have a daughter Carly who has just

turned 6 years old . She has been diagnosed with GAD, OCD and S.I. We were

fortunate enough to find a great pediatric neuro-psychologist early on and

have had assistance from this therapist since Carly was barely three years

old. Her predominant most problematic illness of the three remains to be the

SI. We have worked with and had great success on her OCD symptoms with CBT.

We have tried CBT and have and are currently working with an OT for the IS.

Nothing has worked for her tactile defensiveness. Getting dressed, hair,

nail trimming, teeth brushing is all so difficult. It remains a huge act of

creative energy on my part just to get her dressed so that she can

participate in life.

I am for the first time wondering if meds might bring us some relief for her

tactile defensiveness. I am planning to meet with a pediatric psychiatrist

who specializes in meds to ask questions about treatment. I am wondering if

anyone on the list has experience with med treatment of tactile

defensiveness in a child with OCD. My questions are if so, what type of

improvement did they experience ie, 10% improvement, 60% improvement? What

type of side effects from the meds did they experience. Is there anyone on

the list who's older children have tactile defensiveness? I know there are

members who's children out-grew this symptom. I would like to hear from you

also. Any input would be appreciated. I would like to feel better informed

before I meet with the doc. I am assuming that he will be pro meds as he is

a psychiatrist. I am afraid that I will be pushed in a direction I don't

want to go. Information gained from this list has always been helpful. I

look forward to hearing back from whomever.

Thanks and Happy Holidays!!

December 28, 2001

Hi

My daughter, age 6, seems to have similar sensory issues to your

child. Getting dressed IS that hard for us too. It's horrible.

SSRI's do make some difference, however, those positive effects wear

off a bit after a few months even at increased doses. What helped

more than anything is combining an SSRI with a stimulant if your child

can tolerate it. It's part of an " over focusing " problem with some

kids. Dr. Amen writes a lot of about it, if you are familiar with his

work at all. Unfortunately, my daughter is also bipolar so can't

handle a stimulant very well unless very doped up by a mood

stabilizer. So for now, I am back to having her helped somewhat by

zoloft and just being creative. For instance, I notice low arousal

levels in the morning and irritability have a huge bearing on her

sensory problems. As the day wears on her arousal level goes up and

she's much better able to tolerate clothing, etc. Unfortunately most

people get dressed in the morning! Sometimes she wears her next day's

clothing to bed if I can convince her--but she is attached to her

favorite soft nightgown, so that is hard too.

Anyway, meds help somewhat, but not completely for us. I hear most

kids outgrow this by age 11 or so. I'm counting down the days!

Stephany

Mom to , age 6, with OCD, ADHD and bipolar

on zoloft and risperdal

December 28, 2001