Re: Son with Pandas

[Guest guest]

Hi Janice,

Welcome to the group. I am so sorry to hear about your son's

difficulties with the OCD. I, too, am still rather confused by OCD

(even though I have it myself!). My son has his first visit with the

psychologist on Wednesday. He was having a lot of anger/frustration

when things didn't go as he planned, and he has problems touching

somethings and some odd bathroom behavior, too. There are some on the

list who are much more knowledgable than I am, though, so I assure you

that you have come to the right place and will get lots of support,

information, and friendship here. In fact, if you're on-line right

now (10:57 p.m.?), you might be able to reach some of them in the

chatroom. Just click on Chat to the left of your screen and it'll

take you right in. There's a chat every Sunday night from 10-11 p.m.

Good luck!

-Jean

> Hello,

> I am new to this group. My 10 year old son developed ocd after

> a bout with strep throat on February 20th of this year. Our whole

> life has been turned upside down.

>

> My son struggles with contamination fears (i.e., household cleaners,

> bleach, anything he thinks might poison him). His personality has

> also changed. He used to be stubborn being the baby of the family,

> but stubborness has turned to outright defiance! He is so angry and

> frustrated most of the time and it seems that 95% of his anger is

> directed at me.

>

> I took him to a counselor and he is taking 25mg of Zoloft a day. I

> have seen no improvement and he has been on the medication for about

> 3 weeks.

>

> The worst thing I am dealing with is my family. They all think he

is

> just being spoiled and needs a good spanking. Even at times I am not

> sure what is ocd and what is not.

>

> I can relate to the mother who wrote that she is greiving. That is

> exaclty what I feel. My child was one of the brighest in his class,

> scoring in the 98th percentile on his CAT tests. He was the captain

> of our local academic team. So far at school, he seems to be doing

> ok, but I wonder when the ocd is going to affect his schoolwork.

>

> I guess I just need some support. I am so angry that this has

> happened to my family. Some days it is pure hell around here.

>

> Sorry for rambling on, but venting does help.

>

> Any advice would be appreciated.

>

> Janice

[Guest guest]

Dear Janice,

Hi, we have all been there. There is hope. First of all my

psychiatrist, Dr.susan Young [who is considered as one of the best

pediatric psychiatrist in Los Angeles] told me it can take up to ten

weeks before you see the meds affecting the OCD. My son took luvox

for two weeks and developed a rash. We took him off for a week, and

put him on paxil (two weeks of that). helped be find different

CBT psychologists. After interviewing three (a luxuary as they are

rare!) we are going to start CBT in a week with a UCLA professor and

researcher in OCD. Meanwhile, I got four books mailed to me from

amazon. com on OCD. Three were so-so and did not tell me how to start

CBT myself. The fourth book was (for me) a god-send. (Read my post on

Tamar Chansky.) Her information got me going on the right path with

my son's own contamination fears.

Finally, to help your son, you also need to take care of yourself. On

the advice of some wonderful women in this group, I made a huge

effort to get my own anxiety down. I felt as if my bright, happy

child was being torn apart by the OCD monster, as was my family. I

now know better. I got myself on a small dose of luvox and as much

information as possible. I find myself back in control. As I calmed

down, so did my 7 year old son. It took a few weeks, but we finally

convinced him that the OCD was a glitch in his brain that was REALLY

NOT HIM. The glitch (he calls it the OCD liar) was something to be

fought. Once he caught on to this, we started getting him to touch

stuff that scared him. Hard at first, easier as fears started to peal

off like onion skins. There is HOPE. CBT helps over 70% of people to

reduce their OCD to virtually nothing. The other 30% can show some

improvement. Medication also tilts the odds in the direction of

relief for most who suffer with this disorder. Take care and stick

with this group -- they are wonderful people.

Lil Wallace

> Hello,

> I am new to this group. My 10 year old son developed ocd after

> a bout with strep throat on February 20th of this year. Our whole

> life has been turned upside down.

>

> My son struggles with contamination fears (i.e., household

cleaners,

> bleach, anything he thinks might poison him). His personality has

> also changed. He used to be stubborn being the baby of the family,

> but stubborness has turned to outright defiance! He is so angry

and

> frustrated most of the time and it seems that 95% of his anger is

> directed at me.

>

> I took him to a counselor and he is taking 25mg of Zoloft a day. I

> have seen no improvement and he has been on the medication for

about

> 3 weeks.

>

> The worst thing I am dealing with is my family. They all think he

is

> just being spoiled and needs a good spanking. Even at times I am

not

> sure what is ocd and what is not.

>

> I can relate to the mother who wrote that she is greiving. That is

> exaclty what I feel. My child was one of the brighest in his

class,

> scoring in the 98th percentile on his CAT tests. He was the

captain

> of our local academic team. So far at school, he seems to be doing

> ok, but I wonder when the ocd is going to affect his schoolwork.

>

> I guess I just need some support. I am so angry that this has

> happened to my family. Some days it is pure hell around here.

>

> Sorry for rambling on, but venting does help.

>

> Any advice would be appreciated.

>

> Janice

[Guest guest]

Hi Janice:

Welcome to the list. It sounds like your son is really struggling with OCD

right now and this is very hard. My son, Steve, was also 10 when his OCD

became obvious.

Please know that your son is by no means spoiled and needing more

discipline. He is suffering from a serious mental illness which luckily is

highly treatable to an extent which will amaze you. In time you will have

your son back. It takes a lot of hard work and determination and he is

lucky to have a supportive and understanding mom like you.

One of the first things you can do is to learn how to externalize OCD.

When your son's OCD is flaring up, he is operating from a place of total

fear. One psychiatrist explained it in a talk I attended as being similar

to the fear we would feel if our seven year-old child was kidnapped by a

serial child molester/murderer and we had no idea how to help. When we do

things which unfortunately trigger their anxiety more when they are in a

state of extreme arousal they will show defiance or oppositionality to the

nth degree! We had physical and verbal abuse happening here and we

wondered how the fabric of our family life had become so unravelled.

Externalizing OCD means you recognize it is the illness that is making your

son behave in this way and it is not his fault. However he is responsible

for learning how to cope with his illness. This takes time. A bright guy

like he is will be able to learn, given a competent therapist to guide and

encourage him, how to get his life back relatively quickly.

Another important early step is to learn all you can about OCD so you can

be sure that your child is getting the correct and effective therapy. The

dosage of Zoloft he is on is rather low for treating OCD. Please check out

the OCF web site for its information of medicating kids with OCD. I am not

a doc but know from experience that it can take a few months at the highest

dosage to see a response to medication.

The most effective treatment for OCD in young children is cognitive

behavior therapy (CBT) with exposure and response prevention (E & RP) and

this can help with mild to moderate OCD (uncomplicated by any comorbid

disorders) so no meds are needed.

Janice, OCD is a cruel disorder and it knows how to attack the sufferer

where they are most vulnerable. It is common for our kids to show their

symptoms most severely with those that they are closest too. Somehow they

are less able to control their symptoms when more relaxed around those they

love. Do not take this personally, it is part of the disorder.

Good luck, Janice, keep writing, know your family are mistaken in their

views and stick to your guns, trusting your intuition, take care, aloha,

Kathy (h)

kathyh@...

At 01:46 AM 05/14/2001 -0000, you wrote:

>Hello,

>I am new to this group. My 10 year old son developed ocd after

>a bout with strep throat on February 20th of this year. Our whole

>life has been turned upside down.

>

>My son struggles with contamination fears (i.e., household cleaners,

>bleach, anything he thinks might poison him). His personality has

>also changed. He used to be stubborn being the baby of the family,

>but stubborness has turned to outright defiance! He is so angry and

>frustrated most of the time and it seems that 95% of his anger is

>directed at me.

>

>I took him to a counselor and he is taking 25mg of Zoloft a day. I

>have seen no improvement and he has been on the medication for about

>3 weeks.

>

>The worst thing I am dealing with is my family. They all think he is

>just being spoiled and needs a good spanking. Even at times I am not

>sure what is ocd and what is not.

>

>I can relate to the mother who wrote that she is greiving. That is

>exaclty what I feel. My child was one of the brighest in his class,

>scoring in the 98th percentile on his CAT tests. He was the captain

>of our local academic team. So far at school, he seems to be doing

>ok, but I wonder when the ocd is going to affect his schoolwork.

>

>I guess I just need some support. I am so angry that this has

>happened to my family. Some days it is pure hell around here.

>

>Sorry for rambling on, but venting does help.

>

>Any advice would be appreciated.

>

>Janice

[Guest guest]

Hi Janice, I can't add much to the excellent input and advice others have

already posted, but I wanted to welcome you to the list. You are absolutely

in the right place and I know you will find this bunch of parents, who are

or were where you are right now, helpful and supportive as you work to turn

your family's and your son's lives back right side up.

> I am new to this group. My 10 year old son developed ocd after

> a bout with strep throat on February 20th of this year. Our whole

> life has been turned upside down.

My daughter, now seven, is also a PANDAS kid (our date is Dec. 8, 1999, a

day that lives in infamy!!) I can certainly sympathize with the utter

bewilderment an abrupt OCD onset causes.

> My son struggles with contamination fears (i.e., household cleaners,

> bleach, anything he thinks might poison him). His personality has

> also changed. He used to be stubborn being the baby of the family,

> but stubborness has turned to outright defiance! He is so angry and

> frustrated most of the time and it seems that 95% of his anger is

> directed at me.

This is very common, unfortunately for us parents who are also struggling

with our own feelings and grief about the OCD. He directs his anger and

frustration at you because you are safe and he is sure of your continuing

love and support despite his appalling behavior. He may not be this sure of

others in his life.

> I took him to a counselor and he is taking 25mg of Zoloft a day. I

> have seen no improvement and he has been on the medication for about

> 3 weeks.

As others posted, this is a low dose to treat OCD. However, perhaps his

psychiatrist has planned a slow schedule of dose increases until he's in the

therapeutic range. This is a good thing as it gives your son a chance to

acclimate to the medication and minimizes side effects. You should be aware

though that some doctors are uncomfortable with prescribing " adult " doses of

SSRIs for children. But kids, with their revved up metabolisms, often do ne

ed the higher dose to suppress OCD symptoms. A good book to consult is

" Straight Talk about Psychiatric Medications for Kids " by E.

Wilens, MD.

Your son also needs Cognitive Behavior Therapy to include Exposure and

Response Prevention Therapy. No other type of therapy or counseling

minimizes OCD symptoms. IMO this therapy is more important and effective

that the medication. The two together can be dynamite, and many kids on

this list (including my own) have experienced spectacular recovery from

these treatments.

> The worst thing I am dealing with is my family. They all think he is

> just being spoiled and needs a good spanking. Even at times I am not

> sure what is ocd and what is not.

We've all been through this. Turn a deaf ear to your family, you can not

discipline a child out of having OCD or showing its symptoms. They are just

wrong. Provide them information about the disorder if you like, but for

your own sanity look to the professionals who are treating your son, and

this list!, for support and understanding. Your son is suffering from a

biological, brain-based autoimmune disorder, not a sudden-onset behavior

problem. Your family will likely come around in time, but if not your

priority is still getting your son the treatment he needs for OCD whether

they ever agree with his diagnosis.

> I can relate to the mother who wrote that she is greiving. That is

> exaclty what I feel. My child was one of the brighest in his class,

> scoring in the 98th percentile on his CAT tests. He was the captain

> of our local academic team. So far at school, he seems to be doing

> ok, but I wonder when the ocd is going to affect his schoolwork.

OCD and intelligence seem linked somehow (just my opinion.) It's weird how

many outstandingly bright, competent and accomplished kids are represented

on this list. I'm sure your son still is one of the brightest in his class.

OCD does not reduce intelligence.

OCD can certainly affect schoolwork as it can affect anything in the

sufferer's life. If OCD causes your child difficulty at school, he may need

special accomodations at least for a while. I encourage you to share your

son's dx with his teachers and others at the school with a need to know.

They can be your eyes and ears for OCD behaviors that may be affecting his

ability to perform in the classroom.

Right now your son is struggling under a huge burden, and this can affect

his performance in every area, BUT there is no reason he can't return to his

former level of functioning with proper and effective treatment.

> I guess I just need some support. I am so angry that this has

> happened to my family. Some days it is pure hell around here.

(((hugs Janice))) I wish I lived near and could come over for a cup of

coffee and help you sort this whole thing out. Early days following dx,

before treatments have begun to show much effect, are so hard and

bewildering it can seem nearly impossible to have hope for better days

coming. But if my girl (much younger than your son at OCD onset) can

recover, so certainly can your son, and you are started on the right path to

his eventual success.

>Sorry for rambling on, but venting does help.

Yes it does, vent away :-)

> Any advice would be appreciated.

Make a concious effort to take care of yourself, FIRST, before you play hero

for your son and the rest of your family. Also, do all you can to be calm

around your son, and not respond in kind when he is angry and upset. This

requires a lot of faking to begin with. Many of us found that things

quickly improved once we minimized our own dramatic negative reactions to

the OCD.

Well it turned out I added a lot :-/, hope some is helpful.

Kathy R. in Indiana

[Guest guest]

Dear Janice,

I'm so sorry for what you are going through! My daughter, who is now eight, became suddenly sick with OCD after a viral illness in January 4 years ago. Like your son, she became SOOOOO angry - and violent toward me. I think I spent the whole first year crying. We also spent that entire year trying to get help and noone had a diagnosis or any helpful suggestions at all. We heard that a) I was doing a bad job as a mother and should spend less time with her - this from a psychiatrist, she had oppositional defiant disorder, c) she had ADHD, and d) most often, she is just a very sensitive child (which was true from birth) and she'd outgrow this phase. Most people just thought I was too involved with her - a typical nineties parent who is too focused on my child. We gave up looking for medical/psychiatric help and decided to just forget our old child and pretend that we had adopted this new girl, who was COMPLETELY unlike our old child. Everything in the world set her off, and I bore the brunt of it. I know exactly what you are going through. We finally moved to Nevada and our wonderful pediatrician listened to me, sent me to a good neurologist who had heard of PANDAS and to a psychiatrist. We are doing much, much better. She took Paxil for a year and it helped tremendously - for almost a year I had a normal life (although she still wasn't anything like the little girl she had been long ago). The Paxil has sinced quit helping and we are now in week three of trying Luvox - not better yet but we're hoping. The therapy - exposure and response therapy aimed at OCD - helps a lot, although my daughter definetly needed the medication to calm her down enough to even try.

Anyway, this list has been a lifesaver for me. I found it only a few months ago after several years of feeling completely alone with this. So vent away - there are so many wonderful people on this list with lots of experience, advice and support. Hang in there - it will get so much better. If the Zoloft doesn't help - and it does take time - something else will. A good therapist with experience in treating OCD is worth her/his weight in gold!!!

Best wishes to you and your family,

, mother of Annie

[Guest guest]

Dear Janice (again),

I just responded to you but forgot to say one thing - you mentioned being worried about your son's academic performance. Annie is also very bright and has been in a program for gifted children since she was in first grade. Her OCD has interfered with her school work in some ways, but trust me, she is no less bright and is still getting all A's. We have had to explain OCD to her teacher this year though - which I hightly recommend doing if the teacher is the type to handle it well. What we noticed right away when she got sick was sudden hyperactivity - real wigglyness - and a definite decline in handwriting. She was four when she got sick but had learned on her own to read and write - she quit doing both for a full year after getting so sick. We notice real handwriting difficulties when her OCD is acting up, and sometimes problems focusing on her homework, but nothing that some adjustments can't help. We have had to tell her teachers to leave her alone about messy handwriting since she honestly can't help it sometimes and it just makes her more anxious.

Annie recently told me that school is her relief from OCD - it keeps her too busy to worry about much. Even if your son's school work suffers for a while, he will still be your bright child and he will catch up later. For a while he will have to work on getting well, and that can take a lot of time and energy. Annie's therapist has said that her intelligence helps a lot with therapy - she can verbalize things well and understand the point of it all quickly. The same will be true for your son.

O.K. - I've rambled on way too long!

Again, I send you strength and lots of support!

[Guest guest]

Thanks everyone for your warm welcome, ideas, support

and encouragement. You can wake up one day and your

whole life be turned upside down.

I have also gone to the doctor and gotten myself some

medication (Paxil) to deal with this. I have also

gotten 2 books; the one by Dr. Chansky and also one

called Brain Lock. I am praying that things will get

better soon.

__________________________________________________

[Guest guest]

-

-- In @y..., xslav@a... wrote:

Hi and Janice

I read your post and had to respond to some of your comments.

> she is no less bright and is still getting all A's. >

This is the same for us. Our daughter was so relieved when she

returned to school after OCD onset last Christmas holidays, she

wondered if she would still be able to achieve as before and when she

did this did wonders for her confidence.

Annie recently told me that school is her relief from OCD - it

keeps her too busy to worry about much.

These are also my daughters words EXACTLY, in fact we believe school

is her saviour. The OCD returned briefly a few weeks ago in the

school holidays and then back to school and bingo everything is fine

again.

>

> > . Annie's

> therapist has said that her intelligence helps a lot with therapy -

she can

> verbalize things well and understand the point of it all quickly.

Once again, these are my thoughts too. although my daughter is a

little older I believe it was her ability to grasp concepts quickly

and being able to see the logic behind ERT that helped our therapy

enormously and her recovery was speedy>

I hope this helps in some way. Good luck to you both.

Kerrie