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Hi,

Although my daughter is only five, she has ADHD type issues and OCD.

She also lost weight as her dose of prozac was increased. Kids with

ADHD type issues often do better on SSRIs other than prozac, or drugs

other than SSRIs. For example, my daughter did much better on

zoloft, at a low dose--and many do well on paxil. Others will

probably have very good advice on this. My daughter does well with a

low dose of an SSRI and clonidine. Others do well with an SSRI in

combination with risperdal. There are so many ways to go,

unfortunately finding the combination that works is difficult, but

worth striving for. Good luck.

Stephany

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Hi Dana.

My 9 year old son has OCD, ADHD, depression, and mild TS. We have noticed similar effects from the Prozac (I think). His biggest problem was rages so we had him on Wellbutrin 300 mg and 5 mg of Prozac to combat irritability. The rages and meltdowns went away but so did his concentration at school. We dropped the Wellbutrin and added Adderall for the ADHD. His concentration greatly improved but his mood was pretty ugly. We upped the Prozac to 10 mg, and lost the concentration again and his mood got worse. Now we're in the process of dropping the Prozac completely. We are going to go with 100 mg of Wellbutrin and 10 mg of Adderall. I am a little concerned that he will have no front line meds for OCD, but am actively looking for a CBT therapist for him. He really loves his current therapist, but she does no E & RP. She has been supposed to buy and read the March protocol and Teaching the Tiger for about a month now. When I interviewed her, she assured me she was trained to do CBT. Unfortunately, her training didn't include E & RP. I feel like she misrepresented herself but I guess it was just a case of misunderstanding. I doubt her commitment to learning about E & RP so I'm looking for a new therapist. So far the only one I've heard of isn't on our insurance and since I have 3 OCD kids, therapy might be too expensive.

As far as weight loss, I haven't noticed any. The only SSRI I noticed weight gain on was Paxil. I guess I haven't helped much but I do understand what you're going through.

Advice anyone?

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Hi Dana: I have a 15 year old son that has the same problem with loosing

weight on the prozac and he takes 30 mg per day. He has lost alot of

weight but they say this happens until the body becomes used to the new

dosage. Now I have noticed that he is very unhappy to so I phoned the

doctor and he said that it could be seasonal depression. If you find out

any new information PLEASE LET ME KNOW.

Thanks

Kathy - (Canada)

At 02:46 AM 11/30/00 +0000, you wrote:

>Hi everyone. My 10 year old daughter has OCD, ADHD, and depression.

>She was diagnosed with ADHD when she was in lst grade and in August

>of this year received the OCD & depression diagnosis. The doctor

>started her on 20 mg of Prozac and also Trazadone to help with

>sleeping.(She also takes Adderall for the ADHD). After a couple of

>weeks, we noticed that she was in a better mood, more relaxed, and

>seemed to be happier. After a month on 20mg, the doctor then said

>that she needed to be increased to 30mg followed by 40mg for therapy

>to be most effective. I started to notice that she seemed more

>anxious and less happy on the higher dosage. After having a

>difficult time getting answers from her teachers, it looks like she

>is having difficulty with concentration and keeping on task. She is

>also not as happy as she was. She has lost weight taking the

>medication and I'm somewhat concerned about that. Has anyone had a

>similar experience with Prozac? I don't know whether the dosage is

>too high or if it's the wrong one. I do worry about weight gain on

>the other medications and the effect this will have on my daughter's

>self esteem. With her distractability, I don't know how much is the

>ADHD & how much is the OCD.

>

>I spoke with her therapist today, and asked if she was doing CBT.

>She said yes, she had tried 5 or 6 times, but my daughter would not

>do it. She doesn't want to answer questions and continuously changes

>the subject with the therapist. Even though she often changes the

>subject, I know that my daughter feels comfortable with this

>therapist, but I am concerned that she is not receiving CBT and ER & P

>like she should to get better. She has never treated a child with

>OCD, but has treated adults. Our insurance is changing, and it's

>uncertain if we'll be able to continue with this therapist. Should I

>be looking for someone else since it seems like they do more talking

>than anything else? I don't know how my daughter would respond to

>going to someone new. Any help or guidance you all could give would

>be appreciated.

>

>Thanks!

>Dana

>

>

>

>You may subscribe to the OCD-L by emailing listserv@... . In

>the body of your message write: subscribe OCD-L your name. You may

>subscribe to the Parents of Adults with OCD List at

>parentsofadultswithOCD . You may access the

>files, links, and archives for our list at

> . Our list advisors are

>Tamar Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators

>are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy

>, Roman, and Jackie Stout. Subscription issues, problems,

>or suggestions may be addressed to Louis Harkins, list owner, at

>harkins@... .

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In a message dated 11/29/00 9:48:44 PM Eastern Standard Time,

drmorris2000@... writes:

<< is having difficulty with concentration and keeping on task. She is

also not as happy as she was. She has lost weight taking the

medication and I'm somewhat concerned about that. Has anyone had a

similar experience with Prozac >>

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In a message dated 11/29/00 9:48:44 PM Eastern Standard Time,

drmorris2000@... writes:

<< is having difficulty with concentration and keeping on task. She is

also not as happy as she was. She has lost weight taking the

medication and I'm somewhat concerned about that. Has anyone had a

similar experience with Prozac >>

Hi Dana,

My son is taking prozac and he has gained a lot of weight. When I read your

post, I thought about what Dr. Grayson had said at the OC Conference last

year. He said that he found that if the person was prone to be thin, the

medication would have the effect you are talking about, and if you were prone

to gaining weight, then you would probably gain weight from the med. I was

just curious if this holds true with your daughter. It does with my son.

Has anyone else found this to be the case?

Take care,

Noelle

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Hi Dana,

I don't know why your doctor increased her dose from 20mg, since that seemed to

be working. I know that usually the higher doses are recommended for OCD but

since everyone is different I think he should be open to just going with what

works. When my 12 yr old was on Paxil she only took 10mg. When I was at the

OCD Conference in Chicago I asked Dr. Jenike about this and he said for some

people the lower doses work best, not for most people but for some.

As far as the therapist goes, talk therapy isn't recommended for OCD. In fact,

spending an hour worrying or complaining (my daughter would mostly be

complaining) can just exacerbate OCD. My daughter doesn't want to do E & RP right

now so she is seeing a therapist who is working with her on the basics of

" self-talk " as a way to develop the idea that you can use inner resources to

deal with stress rather than always relying on acting out or trying to control

the situation. She will see this therapist 4 times and then they will do some

E & RP, if Ava is willing.

Since your daughter has a good relationship with this therapist maybe you could

have the therapist help her transition to someone who is experienced with

children and E & RP. Your daughter might be more agreeable if she sees it as a

continuation of treatment guided by her therapist, rather than you changing

things on her.

Good Luck!

Dana in NC

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Hi Dana, you wrote:

> The doctor

> started her on 20 mg of Prozac and also Trazadone to help with

> sleeping.(She also takes Adderall for the ADHD). After a couple of

> weeks, we noticed that she was in a better mood, more relaxed, and

> seemed to be happier. After a month on 20mg, the doctor then said

> that she needed to be increased to 30mg followed by 40mg for therapy

> to be most effective. I started to notice that she seemed more

> anxious and less happy on the higher dosage.

How long has your daughter been on the increased dose? Each time my child's

meds were increased, things got worse for awhile before they got better.

Others have told me this can be a sign that once the child has acclimated to

the med, it will be effective.

> After having a

> difficult time getting answers from her teachers, it looks like she

> is having difficulty with concentration and keeping on task. She is

> also not as happy as she was. She has lost weight taking the

> medication and I'm somewhat concerned about that. Has anyone had a

> similar experience with Prozac?

My daughter took Prozac for about three months, had very little appetite

while taking it, and lost about five pounds. For my child, Prozac had a lot

of side-effects on mood, behavior, sleep and so on, which is why we switched

her after three months.

> I spoke with her therapist today, and asked if she was doing CBT.

> She said yes, she had tried 5 or 6 times, but my daughter would not

> do it. She doesn't want to answer questions and continuously changes

> the subject with the therapist. Even though she often changes the

> subject, I know that my daughter feels comfortable with this

> therapist, but I am concerned that she is not receiving CBT and ER & P

> like she should to get better. She has never treated a child with

> OCD, but has treated adults.

I believe a good therapist would be able to work around your daughter's

resistence. I think your instincts are right on, and a different therapist

with experience doing CBT with E & RP with children may be in order. The

current therapist may be trying to work too high on your daughter's

heirarchy, for example, but not realize this. Your daughter feeling

comfortable with this therapist could simply be due to the fact that they

are not confronting the OCD!

> Our insurance is changing, and it's

> uncertain if we'll be able to continue with this therapist. Should I

> be looking for someone else since it seems like they do more talking

> than anything else? I don't know how my daughter would respond to

> going to someone new.

Since the current therapist has said she's unable to do E & RP with your

daughter, also that she's inexperienced in working with children, she may be

willing to work toward a transition to a new, more experienced therapist to

smooth this process for your daughter.

Kathy R. in Indiana

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Hi Noelle, Dr. Grayson's comment confuses me. It makes sense when applied

to adults, but all children are supposed to be growing and gaining weight.

It brings us back to height/weight ratios and weight percentiles, gaining

too much too quickly. Weight loss in any child should be cause for concern.

In any case, my daughter lost weight rapidly on Prozac, regained the pounds

she lost fairly quickly on her next SSRI, Luvox, then didn't gain anymore

weight for several months, so I don't know how if at all SSRIs affected her

weight. I've personally wondered if pre- or post-puberty factors in to

whether a child gains, loses or has no weight change on an SSRI.

Kathy R. in Indiana

----- Original Message -----

From: <larkspurmr@...>

> My son is taking prozac and he has gained a lot of weight. When I read

your

> post, I thought about what Dr. Grayson had said at the OC Conference last

> year. He said that he found that if the person was prone to be thin, the

> medication would have the effect you are talking about, and if you were

prone

> to gaining weight, then you would probably gain weight from the med. I

was

> just curious if this holds true with your daughter. It does with my son.

> Has anyone else found this to be the case?

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HI Kathy:

Weight loss can also be a symptom of depression. If you are noticing a

mood problem you might want to ask your son's psychiatrist to augment his

OCD meds with another non-SSRI anti-depressant. Depression is very

treatable and untreated it can interefere with doing E & RP which will help

the OCD and probably indirectly help your son's depression.

I have a son who is now 13 and he has major depressive disorder (MDD) along

with his OCD. Thanks to E & RP for his OCD, which was quite severe, our

major concern now is his MDD and keeping that under control. Puberty can

be such a tough time anyway and to deal with NBDs on top is a real

challenge for our beloved children. Good luck, take care, aloha, Kathy (H)

(Hawai`i)

kathyh@...

At 08:44 PM 11/29/2000 -0800, you wrote:

>Hi Dana: I have a 15 year old son that has the same problem with loosing

>weight on the prozac and he takes 30 mg per day. He has lost alot of

>weight but they say this happens until the body becomes used to the new

>dosage. Now I have noticed that he is very unhappy to so I phoned the

>doctor and he said that it could be seasonal depression. If you find out

>any new information PLEASE LET ME KNOW.

>Thanks

>Kathy - (Canada)

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I think it's time to consider a different medication, such as anafranil, luvox, or celexa. Prozac can really get on some people's nerves. If she felt better, she would cooperate better with CBT.

Judy

Advice anyone?

Hi everyone. My 10 year old daughter has OCD, ADHD, and depression. She was diagnosed with ADHD when she was in lst grade and in August of this year received the OCD & depression diagnosis. The doctor started her on 20 mg of Prozac and also Trazadone to help with sleeping.(She also takes Adderall for the ADHD). After a couple of weeks, we noticed that she was in a better mood, more relaxed, and seemed to be happier. After a month on 20mg, the doctor then said that she needed to be increased to 30mg followed by 40mg for therapy to be most effective. I started to notice that she seemed more anxious and less happy on the higher dosage. After having a difficult time getting answers from her teachers, it looks like she is having difficulty with concentration and keeping on task. She is also not as happy as she was. She has lost weight taking the medication and I'm somewhat concerned about that. Has anyone had a similar experience with Prozac? I don't know whether the dosage is too high or if it's the wrong one. I do worry about weight gain on the other medications and the effect this will have on my daughter's self esteem. With her distractability, I don't know how much is the ADHD & how much is the OCD.I spoke with her therapist today, and asked if she was doing CBT. She said yes, she had tried 5 or 6 times, but my daughter would not do it. She doesn't want to answer questions and continuously changes the subject with the therapist. Even though she often changes the subject, I know that my daughter feels comfortable with this therapist, but I am concerned that she is not receiving CBT and ER & P like she should to get better. She has never treated a child with OCD, but has treated adults. Our insurance is changing, and it's uncertain if we'll be able to continue with this therapist. Should I be looking for someone else since it seems like they do more talking than anything else? I don't know how my daughter would respond to going to someone new. Any help or guidance you all could give would be appreciated.Thanks!Dana

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wrote: " I am a little concerned that he will have no front line meds for

OCD, but am actively looking for a CBT therapist for him. He really loves his

current therapist, but she does no E & RP. She has been supposed to buy and read

the March protocol and Teaching the Tiger for about a month now. When I

interviewed her, she assured me she was trained to do CBT. Unfortunately, her

training didn't include E & RP. I feel like she misrepresented herself but I

guess it was just a case of misunderstanding. "

There is an excellent article in the current oc foundation newsletter addressing

the CBT issue. It explains that there are really two types of CBT -- one which

involves cognitive restructuring which is used effectively with depression; and

cognitive conceptualization and cognitive management to treat OCD. The

conceptualization involves removing the shame and guilt from the ocders by

providing a cognitive map of the hidden " rules " of ocd. CM is the ERP part.

Thus, your therapist may very well have been trained in CBT, but not for its use

in OCD. Does that make sense? And I would try an find one that is, BTW.

Jule

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:

My 12 yo son has OCD, depression, ADHD, PDD-NOS, and some learning disabilities

(mild -- mostly concerning expressive language and writing). He took 60 mg of

Prozac for two years before it pooped out. He experienced no apparent side

effects from this dose. He also was on Adderall which ended up causing an acute

exacerbation of the OCD to the point he was hospitalized. As soon as the

Adderall was removed, he was a different person -- still OCD, but able to

function. At that point we added a small dose of Risperdal, and treated the

ADHD with Ritalin only at school. The Risperdal has caused a great deal of

weight gain, but he was a VERY skinny kid, and his weight has stabilized. Now

that he's growing faster, he's beginning to slim down a bit. Last spring we

switched from Prozac to Celexa, and a month or so ago added a low dose of

Wellbutrin to treat the depression. This combination seems to work pretty well.

Unfortunately, it can be difficult to ferret out what is ADHD behavior, and what

is depression as the symptoms can be identical -- agitation, irritation,

innattention, weight loss (or gain), etc. As others have said, there can be an

increase in behavioral side effects (BSEs) when meds are increased or otherwise

adjusted. SSRIs are the only meds that are effective in treating OCD. The

others are used to boost their effect -- for example an SSRI and Wellbutrin.

Risperdal is effective with kids who have trouble with rages or a lot of

anxiety, or for kids on the autism spectrum. I have tried lowering Aiden's

Risperdal dose, but can't get him down any lower than the 1 mg AM and PM.

It is difficult for kids to work on their hierarchies when their anxiety and/or

depression is not effectively treated. Like Kathy H, I am ever vigilant for the

signs of depression in my son.

Jule in Cleveland

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-Hi Kathy.

You brought up some good points. She has been on 40 mg for about 6

weeks. Would this have been a long enough time for her body to

adjust to this dosage? Her therapist after reading what her teachers

had to say about her, agreed with me that the medication should be

looked at. She is not happy with where my daughter is right now.

She feels that she shouldn't be having so many problems this far into

therapy and with the medication. Of course, with therapy going the

way it is, I can see why she wouldn't have made much progress there.

One concern I do have about her weight loss is her attitude toward

it. When I told my daughter that she weighed 89 pounds (she's 5 feet

tall), she was excited to be " light " . I told her that she didn't

need to lose any more weight. On weekends, she might not eat until

1:30 in the afternoon and at night we have to remind her often to eat

dinner. She's a very picky eater and usually doesn't eat what we

eat, therefore, she often eats at a different time because she's not

hungry, etc. I don't necessarily think her weight loss is because of

an eating disorder, but I do worry that this is coming. I've read

that anorexia often accompanies OCD. With her depression, I know

that that can be a factor in weight loss too.

We've also had to increase her dosage of Trazadone at night to help

her sleep. She originally started out taking 25-50mg. We now have

to give her 100 mg at night to help her sleep through the night. She

mainly has trouble sleeping on school nights. She was getting up

anywhere from 3am on. Now that she's taking 100mg, she's sleeping

pretty much through the night. I don't know how much of the

sleeplessness is due to the Prozac and how much of it is due to OCD.

Has anyone else had sleeping problems on Prozac? I hate to have her

on such a high dosage, but I'm told by the doctor and therapist, that

it is one of the safest sleeping meds out there.

All of you have been great at replying to my message. Any further

comments or suggestions would be welcomed. Take care.

Dana

-- In egroups, " Kathy " <klr@s...> wrote:

> Hi Dana, you wrote:

> > The doctor

> > started her on 20 mg of Prozac and also Trazadone to help with

> > sleeping.(She also takes Adderall for the ADHD). After a couple

of

> > weeks, we noticed that she was in a better mood, more relaxed, and

> > seemed to be happier. After a month on 20mg, the doctor then said

> > that she needed to be increased to 30mg followed by 40mg for

therapy

> > to be most effective. I started to notice that she seemed more

> > anxious and less happy on the higher dosage.

>

> How long has your daughter been on the increased dose? Each time

my child's

> meds were increased, things got worse for awhile before they got

better.

> Others have told me this can be a sign that once the child has

acclimated to

> the med, it will be effective.

>

> > After having a

> > difficult time getting answers from her teachers, it looks like

she

> > is having difficulty with concentration and keeping on task. She

is

> > also not as happy as she was. She has lost weight taking the

> > medication and I'm somewhat concerned about that. Has anyone had

a

> > similar experience with Prozac?

>

> My daughter took Prozac for about three months, had very little

appetite

> while taking it, and lost about five pounds. For my child, Prozac

had a lot

> of side-effects on mood, behavior, sleep and so on, which is why we

switched

> her after three months.

>

> > I spoke with her therapist today, and asked if she was doing CBT.

> > She said yes, she had tried 5 or 6 times, but my daughter would

not

> > do it. She doesn't want to answer questions and continuously

changes

> > the subject with the therapist. Even though she often changes the

> > subject, I know that my daughter feels comfortable with this

> > therapist, but I am concerned that she is not receiving CBT and

ER & P

> > like she should to get better. She has never treated a child with

> > OCD, but has treated adults.

>

> I believe a good therapist would be able to work around your

daughter's

> resistence. I think your instincts are right on, and a different

therapist

> with experience doing CBT with E & RP with children may be in order.

The

> current therapist may be trying to work too high on your daughter's

> heirarchy, for example, but not realize this. Your daughter feeling

> comfortable with this therapist could simply be due to the fact

that they

> are not confronting the OCD!

>

> > Our insurance is changing, and it's

> > uncertain if we'll be able to continue with this therapist.

Should I

> > be looking for someone else since it seems like they do more

talking

> > than anything else? I don't know how my daughter would respond to

> > going to someone new.

>

> Since the current therapist has said she's unable to do E & RP with

your

> daughter, also that she's inexperienced in working with children,

she may be

> willing to work toward a transition to a new, more experienced

therapist to

> smooth this process for your daughter.

>

> Kathy R. in Indiana

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HI :

I am with you on the approach to violence. Even if an OCDer is sorely

tried and not in control of the feelings and thoughts, they can work on

controlling their behavior. This understanding is part of the C part of

CBT and it well explained in Dr. Baer's excellent book " Getting Control " .

With successes at E & RP this control becomes easier to manage.

The only part that Avery can find helpful is that Ian is not in control and

that she can understand this behavior is a result of OCD and other problems

and not something personal against her. She should definitely not feel

responsible in any way for Ian's behavior. If she has to walk on

eggshells all the time waiting for him to blow, that is a tremendously

unfair burden to a sibling. We found that we had to apply very consistent,

prenegotiated but parent approved, consequences for violent behavior. Also

discussing violence as a problem for our family during a calm time (oh yes

just less agitated time!) really helped. Even more helpful was to reward

those times when Steve managed to control himself when things might easily

have moved to violence.

Our beloved OCDers often feel very, very guilty about these violent

outbursts and don't believe at first there is anything they can do about

it. At least that was our experience. We found it necessary to train

Steve by modelling anger management techniques and tips. It was almost as

thought his brain was in such a state of confusion that he could not access

his intelligence and creativity to figure out ways to control his anger

without our guidance.

Although it is hard, I am sure it will be more than worthwhile to your

entire family to have Ian receive competent E & RP for his OCD. These

techniques of facing our fears and understanding our emotions and responses

are very helpful for anyone, and absolutely essential (IMO) for anyone

dealing with OCD.

Good luck, take care, aloha, Kathy (H)

kathyh@...

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HI Dana:

It sounds like you need the services of a skilled pediatric

psychopharmacologist. If you live near a large metropolitan area this

should be relatively easy to accomplish. If you live further away it might

be harder to accomplish. We take STeve on a 500 mile round trip flight to

his psychiatrist who is very skilled at prescribing and also takes

psychotropic meds himself, as does much of his family. It certainly has

helped Steve's attitude to taking meds to have a doc who takes medication

for one of their mutual diagnoses.

Another thing you might consider looking into it getting a consult with a

clinic that specializes in OCD comorbid with eating disorders and other

alphabet soup. I understand there is one at Brown University in Rhode

Island.

Steve did initially have trouble with his first SSRI and sleeping. It

really activated him and he had serious insomnia. Now when he has insomnia

I know it is due to obsessing. A bit of cat cuddling and some music seem

to help him and distract his mind from obsessing. OCD is sneaky and comes

up when our beloved OCDers are at their most relaxed.

If your daughter's therapist is skilled and experienced at E & RP and your

daughter has not made progress after 5-6 sessions, you might want to ask

the docs to reassess what comorbidities are interfering with success at

E & RP. Steve tried three times before being successful at E & RP. Some of

the problem was unskilled therapists, but probably a greater part was his

serious depression. Other comorbid severe anxiety disorders can also

interfere with success at E & RP.

WHen Steve had trouble sleeping due to activation by medication he found

taking some Benadryl very helpful. Hope this helps. take care, good luck,

aloha, Kathy (H)

kathyh@...

At 02:19 AM 12/01/2000 -0000, you wrote:

>-Hi Kathy.

>

>You brought up some good points. She has been on 40 mg for about 6

>weeks. Would this have been a long enough time for her body to

>adjust to this dosage? Her therapist after reading what her teachers

>had to say about her, agreed with me that the medication should be

>looked at. She is not happy with where my daughter is right now.

>She feels that she shouldn't be having so many problems this far into

>therapy and with the medication. Of course, with therapy going the

>way it is, I can see why she wouldn't have made much progress there.

>

>One concern I do have about her weight loss is her attitude toward

>it. When I told my daughter that she weighed 89 pounds (she's 5 feet

>tall), she was excited to be " light " . I told her that she didn't

>need to lose any more weight. On weekends, she might not eat until

>1:30 in the afternoon and at night we have to remind her often to eat

>dinner. She's a very picky eater and usually doesn't eat what we

>eat, therefore, she often eats at a different time because she's not

>hungry, etc. I don't necessarily think her weight loss is because of

>an eating disorder, but I do worry that this is coming. I've read

>that anorexia often accompanies OCD. With her depression, I know

>that that can be a factor in weight loss too.

>

>We've also had to increase her dosage of Trazadone at night to help

>her sleep. She originally started out taking 25-50mg. We now have

>to give her 100 mg at night to help her sleep through the night. She

>mainly has trouble sleeping on school nights. She was getting up

>anywhere from 3am on. Now that she's taking 100mg, she's sleeping

>pretty much through the night. I don't know how much of the

>sleeplessness is due to the Prozac and how much of it is due to OCD.

>Has anyone else had sleeping problems on Prozac? I hate to have her

>on such a high dosage, but I'm told by the doctor and therapist, that

>it is one of the safest sleeping meds out there.

>

>All of you have been great at replying to my message. Any further

>comments or suggestions would be welcomed. Take care.

>

>Dana

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Hi Dana, yes I think 6 weeks would be enough time, or nearly so, for side

effects to diminish. Prozac is available in liquid which makes it possible

to make very small dose increases, this can reduce or avoid altogether med

side effects. Maybe this approach would work for your daughter? One

problem: liquid Prozac tastes nasty. Prozac wired my child, and from the

first dose she was unable to fall asleep until midnight or later (usual

bedtime pre-Prozac was around 8), then was wide awake around 4 or 5 a.m. and

it was go, go, go all day. We did this for three months until this

side-effect and others caused us to change Kel to Luvox, and her sleeping

problems vanished.

I'm concerned about weight and eating issues too, even though my child was

only 4 at onset she suddenly had disgust for fat people, worries about being

fat herself (she wasn't and isn't), plus a zillion little eating-related

compulsions and obsessive thoughts. I remain amazed at the common themes

OCD attaches itself to, even in a small child who had yet to be much

affected by images on TV, culture's support of thinness, etc. I think a lot

of OCD kids have " disordered " eating, not necessarily to a diagnosable

degree.

I don't have any experience with Trazadone but know that several kids

represented on this list have taken it or take it currently. In our family

(following our Prozac experience) we've decided solving sleep problems,

whatever their cause, is a top priority because being chronically

sleep-deprived works to OCD's advantage.

Kathy R. in Indiana

----- Original Message -----

From: <drmorris2000@...>

> You brought up some good points. She has been on 40 mg for about 6

> weeks. Would this have been a long enough time for her body to

> adjust to this dosage?

>>snip<<

> One concern I do have about her weight loss is her attitude toward

> it. When I told my daughter that she weighed 89 pounds (she's 5 feet

> tall), she was excited to be " light " . I told her that she didn't

> need to lose any more weight. On weekends, she might not eat until

> 1:30 in the afternoon and at night we have to remind her often to eat

> dinner. She's a very picky eater and usually doesn't eat what we

> eat, therefore, she often eats at a different time because she's not

> hungry, etc. I don't necessarily think her weight loss is because of

> an eating disorder, but I do worry that this is coming. I've read

> that anorexia often accompanies OCD. With her depression, I know

> that that can be a factor in weight loss too.

>>snip<<

> I don't know how much of the

> sleeplessness is due to the Prozac and how much of it is due to OCD.

> Has anyone else had sleeping problems on Prozac? I hate to have her

> on such a high dosage, but I'm told by the doctor and therapist, that

> it is one of the safest sleeping meds out there.

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We had just the opposite effect with Josh--With in a week of starting on Prozac he would get in bed & be asleep within a few minutes. Before that he would lay there for hours..or run around the house till 11-12 at night & then just drop where ever he was....now many nights I don't even have to say " GO TO BED " he just takes his meds & gets in bed..turns on the radio.. & goes out fast. Sleeps till 7:30 wake up every day. Good luck--Joy

--

Joy- Mom to 13 (CP, Mosaic for s Syndrome, Bilateral Cataracts-left eye / IOL & Developmental delays ) & Josh 11 ( SID, OCD, ADHD) PATH Parent Resource Library- CT

From: " Kathy " <klr@...>

Reply-egroups

Hi Dana, yes I think 6 weeks would be enough time, or nearly so, for side

effects to diminish. Prozac is available in liquid which makes it possible

to make very small dose increases, this can reduce or avoid altogether med

side effects. Maybe this approach would work for your daughter? One

problem: liquid Prozac tastes nasty. Prozac wired my child, and from the

first dose she was unable to fall asleep until midnight or later (usual

bedtime pre-Prozac was around 8), then was wide awake around 4 or 5 a.m. and

it was go, go, go all day. We did this for three months until this

side-effect and others caused us to change Kel to Luvox, and her sleeping

problems vanished.

I'm concerned about weight and eating issues too, even though my child was

only 4 at onset she suddenly had disgust for fat people, worries about being

fat herself (she wasn't and isn't), plus a zillion little eating-related

compulsions and obsessive thoughts. I remain amazed at the common themes

OCD attaches itself to, even in a small child who had yet to be much

affected by images on TV, culture's support of thinness, etc. I think a lot

of OCD kids have " disordered " eating, not necessarily to a diagnosable

degree.

I don't have any experience with Trazadone but know that several kids

represented on this list have taken it or take it currently. In our family

(following our Prozac experience) we've decided solving sleep problems,

whatever their cause, is a top priority because being chronically

sleep-deprived works to OCD's advantage.

Kathy R. in Indiana

----- Original Message -----

From: <drmorris2000@...>

> You brought up some good points. She has been on 40 mg for about 6

> weeks. Would this have been a long enough time for her body to

> adjust to this dosage?

>>snip<<

>>snip<<

> I don't know how much of the

> sleeplessness is due to the Prozac and how much of it is due to OCD.

> Has anyone else had sleeping problems on Prozac? I hate to have her

> on such a high dosage, but I'm told by the doctor and therapist, that

> it is one of the safest sleeping meds out there.

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Hi Dana,

I won't repeat the advice the Kathys have given you, but just wanted to

add two points based on our experience. Kathy H. mentioned

comorbidities - is it possible that anxiety is interfering with your

daughter's progress in therapy, as well as affecting her sleep? This is

the case for my daughter, and adding Buspar to her Prozac dose has

really helped.

Also, I would give your daughter a little more time to adjust to her

medication. Although Prozac is a terrific drug for andra, it was a

good three months before we saw relief from side effects, and she had

side effects reoccur at other times when her dose was raised.

Kathy H's suggestion about a good pediatric psychopharmacologist is a

good one. This type of specialist has been invaluable to us for

andra.

Take care,

Lesli

drmorris2000@... wrote:

>

> -Hi Kathy.

>

> You brought up some good points. She has been on 40 mg for about 6

> weeks. Would this have been a long enough time for her body to

> adjust to this dosage? Her therapist after reading what her teachers

> had to say about her, agreed with me that the medication should be

> looked at. She is not happy with where my daughter is right now.

> She feels that she shouldn't be having so many problems this far into

> therapy and with the medication. Of course, with therapy going the

> way it is, I can see why she wouldn't have made much progress there.

>

> One concern I do have about her weight loss is her attitude toward

> it. When I told my daughter that she weighed 89 pounds (she's 5 feet

> tall), she was excited to be " light " . I told her that she didn't

> need to lose any more weight. On weekends, she might not eat until

> 1:30 in the afternoon and at night we have to remind her often to eat

> dinner. She's a very picky eater and usually doesn't eat what we

> eat, therefore, she often eats at a different time because she's not

> hungry, etc. I don't necessarily think her weight loss is because of

> an eating disorder, but I do worry that this is coming. I've read

> that anorexia often accompanies OCD. With her depression, I know

> that that can be a factor in weight loss too.

>

> We've also had to increase her dosage of Trazadone at night to help

> her sleep. She originally started out taking 25-50mg. We now have

> to give her 100 mg at night to help her sleep through the night. She

> mainly has trouble sleeping on school nights. She was getting up

> anywhere from 3am on. Now that she's taking 100mg, she's sleeping

> pretty much through the night. I don't know how much of the

> sleeplessness is due to the Prozac and how much of it is due to OCD.

> Has anyone else had sleeping problems on Prozac? I hate to have her

> on such a high dosage, but I'm told by the doctor and therapist, that

> it is one of the safest sleeping meds out there.

>

> All of you have been great at replying to my message. Any further

> comments or suggestions would be welcomed. Take care.

>

> Dana

>

> -- In egroups, " Kathy " <klr@s...> wrote:

> > Hi Dana, you wrote:

> > > The doctor

> > > started her on 20 mg of Prozac and also Trazadone to help with

> > > sleeping.(She also takes Adderall for the ADHD). After a couple

> of

> > > weeks, we noticed that she was in a better mood, more relaxed, and

> > > seemed to be happier. After a month on 20mg, the doctor then said

> > > that she needed to be increased to 30mg followed by 40mg for

> therapy

> > > to be most effective. I started to notice that she seemed more

> > > anxious and less happy on the higher dosage.

> >

> > How long has your daughter been on the increased dose? Each time

> my child's

> > meds were increased, things got worse for awhile before they got

> better.

> > Others have told me this can be a sign that once the child has

> acclimated to

> > the med, it will be effective.

> >

> > > After having a

> > > difficult time getting answers from her teachers, it looks like

> she

> > > is having difficulty with concentration and keeping on task. She

> is

> > > also not as happy as she was. She has lost weight taking the

> > > medication and I'm somewhat concerned about that. Has anyone had

> a

> > > similar experience with Prozac?

> >

> > My daughter took Prozac for about three months, had very little

> appetite

> > while taking it, and lost about five pounds. For my child, Prozac

> had a lot

> > of side-effects on mood, behavior, sleep and so on, which is why we

> switched

> > her after three months.

> >

> > > I spoke with her therapist today, and asked if she was doing CBT.

> > > She said yes, she had tried 5 or 6 times, but my daughter would

> not

> > > do it. She doesn't want to answer questions and continuously

> changes

> > > the subject with the therapist. Even though she often changes the

> > > subject, I know that my daughter feels comfortable with this

> > > therapist, but I am concerned that she is not receiving CBT and

> ER & P

> > > like she should to get better. She has never treated a child with

> > > OCD, but has treated adults.

> >

> > I believe a good therapist would be able to work around your

> daughter's

> > resistence. I think your instincts are right on, and a different

> therapist

> > with experience doing CBT with E & RP with children may be in order.

> The

> > current therapist may be trying to work too high on your daughter's

> > heirarchy, for example, but not realize this. Your daughter feeling

> > comfortable with this therapist could simply be due to the fact

> that they

> > are not confronting the OCD!

> >

> > > Our insurance is changing, and it's

> > > uncertain if we'll be able to continue with this therapist.

> Should I

> > > be looking for someone else since it seems like they do more

> talking

> > > than anything else? I don't know how my daughter would respond to

> > > going to someone new.

> >

> > Since the current therapist has said she's unable to do E & RP with

> your

> > daughter, also that she's inexperienced in working with children,

> she may be

> > willing to work toward a transition to a new, more experienced

> therapist to

> > smooth this process for your daughter.

> >

> > Kathy R. in Indiana

>

>

> You may subscribe to the OCD-L by emailing listserv@... . In the

body of your message write: subscribe OCD-L your name. You may subscribe to

the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access the

files, links, and archives for our list at

. Our list advisors are Tamar

Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are

Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy , Roman,

and Jackie Stout. Subscription issues, problems, or suggestions may be

addressed to Louis Harkins, list owner, at harkins@... .

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In a message dated 11/30/00 11:56:42 AM Eastern Standard Time,

klr@... writes:

<<

Hi Noelle, Dr. Grayson's comment confuses me. It makes sense when applied

to adults, but all children are supposed to be growing and gaining weight.

It brings us back to height/weight ratios and weight percentiles, gaining

too much too quickly. Weight loss in any child should be cause for conce >>

Hi,

I agree with you and I think Dr. Grayson was speaking on a broad scale about

this but just thought I'd ask if anyone else has found this to be true either

with their children or with themselves if they were on an SSRI.

Take care,

Noelle

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-Hi Kathy! You had mentioned finding a pediatric

psychopharmacologist. This may be a silly question, but how do you

go about finding one?

Thanks!

Dana

-- In egroups, Kathy Hammes <kathyh@i...> wrote:

> HI Dana:

>

> It sounds like you need the services of a skilled pediatric

> psychopharmacologist. If you live near a large metropolitan area

this

> should be relatively easy to accomplish. If you live further away

it might

> be harder to accomplish. We take STeve on a 500 mile round trip

flight to

> his psychiatrist who is very skilled at prescribing and also takes

> psychotropic meds himself, as does much of his family. It

certainly has

> helped Steve's attitude to taking meds to have a doc who takes

medication

> for one of their mutual diagnoses.

>

> Another thing you might consider looking into it getting a consult

with a

> clinic that specializes in OCD comorbid with eating disorders and

other

> alphabet soup. I understand there is one at Brown University in

Rhode

> Island.

>

> Steve did initially have trouble with his first SSRI and sleeping.

It

> really activated him and he had serious insomnia. Now when he has

insomnia

> I know it is due to obsessing. A bit of cat cuddling and some

music seem

> to help him and distract his mind from obsessing. OCD is sneaky

and comes

> up when our beloved OCDers are at their most relaxed.

>

> If your daughter's therapist is skilled and experienced at E & RP and

your

> daughter has not made progress after 5-6 sessions, you might want

to ask

> the docs to reassess what comorbidities are interfering with

success at

> E & RP. Steve tried three times before being successful at E & RP.

Some of

> the problem was unskilled therapists, but probably a greater part

was his

> serious depression. Other comorbid severe anxiety disorders can

also

> interfere with success at E & RP.

>

> WHen Steve had trouble sleeping due to activation by medication he

found

> taking some Benadryl very helpful. Hope this helps. take care,

good luck,

> aloha, Kathy (H)

> kathyh@i...

>

> At 02:19 AM 12/01/2000 -0000, you wrote:

> >-Hi Kathy.

> >

> >You brought up some good points. She has been on 40 mg for about

6

> >weeks. Would this have been a long enough time for her body to

> >adjust to this dosage? Her therapist after reading what her

teachers

> >had to say about her, agreed with me that the medication should be

> >looked at. She is not happy with where my daughter is right now.

> >She feels that she shouldn't be having so many problems this far

into

> >therapy and with the medication. Of course, with therapy going the

> >way it is, I can see why she wouldn't have made much progress

there.

> >

> >One concern I do have about her weight loss is her attitude toward

> >it. When I told my daughter that she weighed 89 pounds (she's 5

feet

> >tall), she was excited to be " light " . I told her that she didn't

> >need to lose any more weight. On weekends, she might not eat

until

> >1:30 in the afternoon and at night we have to remind her often to

eat

> >dinner. She's a very picky eater and usually doesn't eat what we

> >eat, therefore, she often eats at a different time because she's

not

> >hungry, etc. I don't necessarily think her weight loss is because

of

> >an eating disorder, but I do worry that this is coming. I've read

> >that anorexia often accompanies OCD. With her depression, I know

> >that that can be a factor in weight loss too.

> >

> >We've also had to increase her dosage of Trazadone at night to

help

> >her sleep. She originally started out taking 25-50mg. We now

have

> >to give her 100 mg at night to help her sleep through the night.

She

> >mainly has trouble sleeping on school nights. She was getting up

> >anywhere from 3am on. Now that she's taking 100mg, she's sleeping

> >pretty much through the night. I don't know how much of the

> >sleeplessness is due to the Prozac and how much of it is due to

OCD.

> >Has anyone else had sleeping problems on Prozac? I hate to have

her

> >on such a high dosage, but I'm told by the doctor and therapist,

that

> >it is one of the safest sleeping meds out there.

> >

> >All of you have been great at replying to my message. Any further

> >comments or suggestions would be welcomed. Take care.

> >

> >Dana

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HI Dana:

The best way I have found of locating good docs is to get recommendations

from other parents of kids with OCD in my state. This I have done through

networking with other moms with kids with different NBDs.

Another way would be to get consumer recommendations from your nearest OCD

support group (check out the OCF web site to find listings by state of OCD

support groups with contact phone numbers, etc.). If you have a

psychologist whom you trust you might ask them for a recommendation of who

they find good to work with. This is how I found Steve's current

psychiatrist who manages his meds. He works closely with Steve's

psychologist and agreed to work with Steve at the request of his

psychologist.

I have learned to be very careful of medical referrals as we have

frequently experienced referrals based on professional courtesy rather than

true knowledge of the psychiatrist's skill and knowledge in working with

OCD. Another good idea is to interview the doc before you take your child

to them. Money spent this way is a wise investment, a look before your

leap approach.

Hope this helps, good luck finding a suitable doc. Take care, aloha, Kathy

(H)

kathyh@...

At 03:57 PM 12/04/2000 +0000, you wrote:

>-Hi Kathy! You had mentioned finding a pediatric

>psychopharmacologist. This may be a silly question, but how do you

>go about finding one?

>

>Thanks!

>Dana

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  • 6 years later...
Guest guest

Hi Suzy,

I am big into books about going to the hospital for wee ones, Curious , lin, etc. Not to over do it just to acknowledge all they may be going through or go through. (Aedan)See what's free at AOL.com.

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Guest guest

Hi all,

My name is Suzy and I have a beautiful 4 year old daughter, Liliana.

She was diagnosed with Blepharophimosis as an infant but has not had

any surgeries as of yet. She's done great so far and we were told by

all of her doctors (we have met with ophthalmologists, a plastic

surgeon, and an ophthalmologic surgeon) that she had until she was 5

to have her first surgery. This would have placed her first surgery

late next spring. A couple of weeks ago we met with both her

ophthalmologist and found that her vision in her right eye was

weakening b/c her pupil is now being covered by her eyelid. Her left

eye has in turn compensated and is getting stronger while her right

eye is getting weaker (her vision and her eyelid both). So the Dr.

recommended that she proceed with her surgery now since her vision is

now being affected. We of course agree that it seems in her best

interest to proceed with the surgeries now due to her vision being

affected. The will be using a material called gortex (similar to

ptose-up) - is anyone familiar with this? It seems that I have seen

that many people still use the muscle from a cadaver or their own

leg. Also, does anyone have any tips for post surgery or even pre-

surgery? I am struggling with what to tell Lili. The surgery is

scheduled for July 11. She's old enough to question things but not

to wrap her mind around this and I think it will just scare her. I

am thinking we'll just give a simple explanation the day before that

we're going to see the Dr. b/c he's going to help her see better.

Also, all of the doctors we've seen have decided to only fix the

ptosis now and leave the transnasal wiring until she is at least 10-

15 years of age. Is this normal and recommended? We decided to go

through the surgeon that is an ophthalmologic surgeon and is

associated with Lili's ophthalmologist rather than the plastic

surgeon since the surgeon we're going through seems more familiar

with bleph as well as up on cutting edge practices. Does anyone have

any words of advice? This has all come about much sooner than we

anticipated. Also, what is the recovery time for this kind of

surgery? A few days? Weeks? I'm sorry for the long length of this

posting - I just have so many questions! I appreciate your help.

Thanks a bunch!

-Suzy

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Guest guest

Hi Suzy Just to let you know that our daughter Holly,then aged 18 months, had her first temporary eye lift surgery at Moorfields Eye Hospital last September because her pupils were covered by her lids at the time. I was dreading it but honestly I could not believe how brave Holly was and she was running around after the surgery the next day as if nothing had happened. I must admit she was a bit groggy after surgery because of the anaesthetic, but who isn't!, but after a drink and some food she was fine. There were no bandages either just three marks above each eyebrow! Holly is due another eye lift aged about 4 to 5 depending on whether there is enough muscle in her leg to use for the operation. She is quite small so who knows!! All the very best of luck, I think you will be surprised on how resiliant Liliana will be. Good

luck Lucy xx (Hampshire, UK)mysuzy_q <mysuzy_q@...> wrote: Hi all,My name is Suzy and I have a beautiful 4 year old daughter, Liliana. She was diagnosed with Blepharophimosis as an infant but has not had any surgeries as of yet. She's done great so far and we were told by all of her doctors (we have met with ophthalmologists, a plastic surgeon, and an ophthalmologic surgeon) that she had until she was 5 to have her first surgery. This would have placed her

first surgery late next spring. A couple of weeks ago we met with both her ophthalmologist and found that her vision in her right eye was weakening b/c her pupil is now being covered by her eyelid. Her left eye has in turn compensated and is getting stronger while her right eye is getting weaker (her vision and her eyelid both). So the Dr. recommended that she proceed with her surgery now since her vision is now being affected. We of course agree that it seems in her best interest to proceed with the surgeries now due to her vision being affected. The will be using a material called gortex (similar to ptose-up) - is anyone familiar with this? It seems that I have seen that many people still use the muscle from a cadaver or their own leg. Also, does anyone have any tips for post surgery or even pre-surgery? I am struggling with what to tell Lili. The surgery is scheduled for July 11. She's old enough to question things

but not to wrap her mind around this and I think it will just scare her. I am thinking we'll just give a simple explanation the day before that we're going to see the Dr. b/c he's going to help her see better. Also, all of the doctors we've seen have decided to only fix the ptosis now and leave the transnasal wiring until she is at least 10-15 years of age. Is this normal and recommended? We decided to go through the surgeon that is an ophthalmologic surgeon and is associated with Lili's ophthalmologist rather than the plastic surgeon since the surgeon we're going through seems more familiar with bleph as well as up on cutting edge practices. Does anyone have any words of advice? This has all come about much sooner than we anticipated. Also, what is the recovery time for this kind of surgery? A few days? Weeks? I'm sorry for the long length of this posting - I just have so many questions! I appreciate your help.

Thanks a bunch! -Suzy

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