Re: New to group/Mother of PANDAS (warning: long)

March 27, 2004

Wow! Tracey, you have certainly had your share of medical concerns! It has

been a long trip for you to get here. It sounds like you are doing all the

right things for your son. He is lucky to have you. I think you are wise to

check out PANDAS, considering all of the medical problems your son has had. In

your post you mentioned that the only doctor for you to see is 250 miles away.

Is this because there is no one on the insurance plan who is closer? If

there is someone closer who is not on the plan, the insurance company should

make

an exception for you. It is not reasonable for you to have to travel so far

from home for treatment. I have been through the insurance mill too and it

can be soooo much fun! I have two daughters with OCD--Hannah is thirteen and

was diagnosed at eleven. was diagnosed at seven, like your son, and is

now pushing eleven. It does get better so hang in there! Keep posting. This

site has been a life saver for so many of us. Kelley in NV

March 27, 2004

--- In , " buymoreoreos "

Hi Tracey, You have come to the right place for information and

support! I visit every day it is invaluable! I'm amazed at the time

and energy the moderators amd members give to this group! My 12y old

son has Tourettes with a comorbid of OCD. He does not have Pandas and

I understand how it has turned your world upside down! Yesterday we

had a meeting with his Psych M.D. because he is waxing with his tics

and OCD. My son ask if he has any information on Tourettes and or OCD

because he wants to do a paper on it for science. He wants people to

know more about about it. Anyway, he asked what he felt was the most

interesting thing about Tourettes and his doc said to it is that

Pandas (strep condition)has been proven to exist. Being in the

medical profession I am fully aware of the docs that are less than!

My husband is a doc and he is a good one. I used to be a nurse and

know first hand about the ignorance and hubris of some. The good new

is that you are taking charge and you will find a medical partner

that you can work with. We have gone through many ourselves and I

feel that we have such a partner now. You will receive many replys

from this group. They are seasoned, wise and first most parents that

will do anything to help their children. Hang in there, this group

will support and when needed guide you.

Los Angeles

March 27, 2004

> serious. I plan on searching these archives and joining in here.

> The NIH has pointed me in the direction of a doctor at the

> University of Florida who is an expert on OCD and PANDAS. I have a

> lot to learn. I welcome any information that will lead me to better

> understanding this disorder. Thank you for reading this.

> Tracey,

> Mobile, AL

>

Just a hi and welcome. My son has PANDAS too, but we were lucky that

it was recognized fairly quickly. We are in a study at the NIH and they

are wonderful. You are lucky to find someone near you as well. I guess

the best thing that I can say is that you do eventually adjust.

This list is great as well, for support.

Jeanne

jwestpha@...

NBCT - Exceptional Needs (2000)

March 27, 2004

Hi Tracey~

I'm so happy you found this group. There is such a wealth of

knowledge here and the support is awesome!

Your son's story sounds so much like my sons. My son is 7 also. In

August we were just sitting at home when my son came to me and

said " Mom, my head tells me I want to smoke. " Well I flipped. We

certainly don't smoke so why would he even think about it? He had

just gone to a new friends house he had never gone to before a couple

days before and I thought maybe he saw or the kids talked about

something like that there. I asked him but he said " No " . After

giving him the " You better not ever smoke! " lecture. things seemed

fine. Then days later he told me his head was telling him he doesn't

love us. I really started to panic. I would just cry and cry at

night to my husband because I didn't know what to do. My son kept

mentioning the fact that " his head was telling him. " I wondered if

he was hearing voices

or something. He started to withdraw and become very quiet and blank

looking. He was truly terrified. By then he was having thoughts

about killing us as well. I was just beside myself but when I

searched the Internet and typed in " hearing voices in head " . I never

found OCD, I found Schizophrenia. I myself have very mild OCD (of a

differnt form) and had never heard of having " bad thoughts " as a form

of OCD. The last straw for me was when we were sitting on the couch

and he told me he didn't feel safe because he thought I would let a

car drive into our house. I called an acquaintance that I knew had a

son that had seen a therapist and asked her for guidence of where to

go. She gave me a name and I called on the phone. The Dr. had just

happened to be waiting for a call and answered the phone himself. I

was bawling and he calmed me down and asked me to tell him what was

going on. I told him and he simply said " Sounds like OCD to me. " He

impressed me so much. Firstly the fact that he would talk to me over

the phone like that and then that he would give me a probable

diagnosis too.

He had an opening the next morning and we went. He read a book

about farm animals with OCD to help understand it. He talked

with and us and was sure OCD is what he had. We also talked

about PANDAS and the possibility of that. After that appointment and

learned what he had in about a week he was back to himself

laughing and smiling, he didn't have that blank stare anymore. Just

giving him the knowledge made him stronger. The thoughts didn't go

away but he was able to deal with them better and know that " it

wasn't him, it was the OCD. " He has good days and bad days, good

weeks and bad weeks, and even bad months and good months now. I live

for the good ones!

After reading your story I feel blessed to have not had to go through

the Dr. nightmare. I'm so sorry that you had to go through that. To

have a Dr. question your parenting skills. What a nightmare. You

are doing the right thing. Keep searching for a Dr. that is the

right fit for you and your son.

Hugs~

Lori in WA

> Hello All,

> Almost 2 weeks ago, my 7 year old son had a sudden onset of severe

> OCD symptoms. Since that day, we have been in a whirlwind trying

to

> get help for our son and trying to deal with this devastating

> situation. I'll never forget that day when he came home from

school

> and said " my little voice told me to kill you Mama " . For the next

> three days he was barraged with thoughts that he no control over

and

> represented the worst concepts he could possibly ever imagine. He

> was confused, ashamed, and deeply distressed. Since that day, we

> have visited 4 doctors and no one is willing to help us out. One

> doctor told me I was an irresponsible parent. Another told me I

was

> in denial. One told me to put the internet " crap " away and pursue

> psychosis. One almost jumped up and down and clapped his hands in

> delight with the chance to treat my son for " freaky symptoms " .

> They all agree that he needs to see a Child Psychiatrist and we are

> certainly willing to take him to one but even with our insurance

> company searching we have only been able to find an appointment 6

> weeks from now in a city 250 miles away. I did wrangle an ASO

titer

> out of our Pediatrician and hope to get those results Monday.

>

> I have OCD myself but did not recognize this in my son. As soon as

> the shock from this onset wore of, I immediately began to search

the

> internet for resources on childhood mental illnesses. When I found

> info on OCD, I was stunned to see that strep is linked to sudden

> onset OCD. In May of 2003, I took my son to his pediatrician

> because I sensed that something was wrong but I just couldn't put

my

> finger on it. For weeks he had been tired but showed no other

> symptoms – no fever, no pain. The lymph nodes in his neck were

a

> little swollen but he had frequent ear infections, so I didn't

think

> that much of it. When we got to the doctor, she decided to do a

> throat culture since lots of kids were coming in with strep. Sure

> enough he had it. And there was no telling for how long since he

> had not shown the tell tale signs. After a 10 day round of

> antibiotic, we went back for a re-check and he still had it. After

> that round of medicine, a week passed then he tested positive

> again. The rest of the summer he continued to feel tired and have

> swollen lymph nodes. Sometimes he would test positive, sometimes

he

> wouldn't. At about this same time, he began to tell me that he was

> worried that he was going to get in trouble at school because he

had

> gotten a drop of urine on the rim of the toilet. At least once

> every 2 or three days, he told me he was upset because he got a

drop

> of urine on his pants, or that he was scared he was going to get a

> drop or urine on the floor. I began to question him about what had

> happened to make him upset. I wondered if he had actually gotten

> into trouble at school and hadn't told me. I wondered if somebody

> had scared him. I would assure him that there was no way he could

> get in trouble. I talked to him about how everyone has little

> accidents in the bathroom and that's why we clean.

>

> In October, after a year of chronic ear and sinus infections, our

> ENT told us that his sinuses were totally clogged so he had a

> sinusotomy. The ear infections continued. Now he had fungal

> infections and yeast infections. He had chronic pharyngitis and

> throat pain. He was tested for immune deficiencies and CF. He was

> tested for allergies. One throat culture isolated e-coli. Finally

> in January, we had his tonsils removed. The adenoids were removed

> for a second time and tubes were put in his ears. However, the ear

> infections and sinus infections have continued. This chronic

> illness was alone enough to drain us. The dozens of doctor visits,

> the pain, the financial aspect, the medicine, the missed

school…all

> of this already had us on the edge. Then this OCD occurs.

>

> I am almost certain that he has PANDAS but of course, none of the

> doctors we visited had heard of it and none certainly wanted to

> treat us for something they had never heard of. I am joining this

> group because I need support, help and resources. Kathy has

already

> reached out to me and given me some info. A mother of a child with

> PANDAS and autism heard about us through from a receptionist of a

> Child Psychologist where we had tried to obtain an appointment.

She

> contacted me and has been a wealth of info. We have been in touch

> with the NIH and the NIMH. I guess I was just one of those people

> who think doctors know everything but I am now realizing that I

know

> my child better than anybody, even when it comes to something this

> serious. I plan on searching these archives and joining in here.

> The NIH has pointed me in the direction of a doctor at the

> University of Florida who is an expert on OCD and PANDAS. I have a

> lot to learn. I welcome any information that will lead me to

better

> understanding this disorder. Thank you for reading this.

> Tracey,

> Mobile, AL

March 27, 2004

Welcome to the list Tracey and thank for your informative post. You wrote:

>They all agree that he needs to see a Child Psychiatrist and we are

certainly willing to take him to one but even with our insurance

company searching we have only been able to find an appointment 6

weeks from now in a city 250 miles away.

*****There *has* to be someone appropriate closer than this...you won't be

able to return to this doctor very often for follow up, med management or

whatever without seriously disrupting your lives with all the traveling.

It's unreasonable for the ins. co. to expect you to travel this far

repeatedly. In the beginning, we were seeing the psychiatrist every week or

two (later appointments were stretched out to monthly and later still,

quarterly.) Can you search yourself and then present any doctor you find to

your insurance company for approval? It might help to ask anyone you know

whose child has a diagnosis (ADHD, OCD, TS, autism) who they see and if they

are satisfied. Sometimes doctors will agree to become approved by your

insurance carrier.

>In May of 2003, I took my son to his pediatrician

because I sensed that something was wrong but I just couldn't put my

finger on it. For weeks he had been tired but showed no other

symptoms - no fever, no pain. The lymph nodes in his neck were a

little swollen but he had frequent ear infections, so I didn't think

that much of it. When we got to the doctor, she decided to do a

throat culture since lots of kids were coming in with strep. Sure

enough he had it. And there was no telling for how long since he

had not shown the tell tale signs.

*****A lot of us have noticed that our PANDAS kids don't show the typical

physical strep-infection symptoms, and sometimes none at all except the

sudden worsening of OCD and/or TS symptoms. I also spent the months before

my daughter's OCD onset taking her back and forth to the ped, I can really

relate to that " something's not right " sense but being unable to put a

finger on it.

>At about this same time, he began to tell me that he was

worried that he was going to get in trouble at school because he had

gotten a drop of urine on the rim of the toilet. At least once

every 2 or three days, he told me he was upset because he got a drop

of urine on his pants, or that he was scared he was going to get a

drop or urine on the floor. I began to question him about what had

happened to make him upset. I wondered if he had actually gotten

into trouble at school and hadn't told me. I wondered if somebody

had scared him. I would assure him that there was no way he could

get in trouble. I talked to him about how everyone has little

accidents in the bathroom and that's why we clean.

*****Among the signs of PANDAS according to Dr. Swedo, is urinary

frequency or urge at the first episode.

>In October, after a year of chronic ear and sinus infections, our

ENT told us that his sinuses were totally clogged so he had a

sinusotomy. The ear infections continued. Now he had fungal

infections and yeast infections. He had chronic pharyngitis and

throat pain. He was tested for immune deficiencies and CF. He was

tested for allergies. One throat culture isolated e-coli. Finally

in January, we had his tonsils removed. The adenoids were removed

for a second time and tubes were put in his ears. However, the ear

infections and sinus infections have continued. This chronic

illness was alone enough to drain us. The dozens of doctor visits,

the pain, the financial aspect, the medicine, the missed school.all

of this already had us on the edge. Then this OCD occurs.

*****Your son's medical history is similar to my PANDAS child's except hers

was compressed into about six months and she did not have any surgeries.

(((Hugs))) what an ordeal for you and your son.

>The NIH has pointed me in the direction of a doctor at the

University of Florida who is an expert on OCD and PANDAS.

*****Is this Dr. at Gainesville? If so I don't think there

could be anyone better to treat your son. We took our daughter to see her

shortly after her onset, our daughter participated in a study she was

running at that time. We were so very impressed with her in every way, we

seriously considered moving to Florida so she could be our child's doctor.

Again welcome Tracey,

Kathy R. in Indiana

March 27, 2004

Dear Tracey,

My heart goes out to you - what a nightmare you've been through this

year! I hope that you will soon find someone to treat your child. It IS really

appalling that there is such a lack of child psychiatrists in this country -

there are a few states that have only ONE in the entire state. I live in Nevada

and feel unbelievably fortunate to have a good one here in town - this must be

the only area in which Nevada doesn't rank at the absolute bottom!

My daughter, now 11, had a sudden onset of OCD when she was 4 as the

result of a viral infection. It took three years before I found a doctor who

would

listen to me. I saw many doctors of all different varieties in the

Philadelphia area who told me *I* was nuts, or that my daughter was just jealous

of her

brother and other ridiculous things. I eventually did enough research to

diagnose her myself, and when we moved to Nevada and she got worse, I went to

our

pediatrician and said, " she has OCD as the result of an illness - it's called

PITANDS (like PANDAS only not related to strep). " She immediately sent us to a

neurologist and a child psychiatrist and they both immediately agreed with me.

I couldn't believe it took moving to Nevada to find a doctor who would

listen!!!!! Anyway, she is so much better now that she isn't even the same kid.

Your

poor son will also be back to nearly normal before too long. You're at the

absolute worst point right now - waiting for someone to help you. I wish I could

add something to the advice you've already received, but I can't. Just push,

push, push the insurance company to get you an appt. with a child psychiatrist

somehow. Have you contacted the OCFoundation for help? Their website has

information about finding doctors and therapists. If you can't find a child

psychiatrist, try a neurologist. They often treat people with OCD and Tourette

Syndrome, and can prescribe medication. If worst comes to worst, you can see a

doctor like the one in FLorida for an initial assessment and medication, and

then

have her consult with your local doctor. Not ideal, but better than nothing.

How about calling the local mental health association? Or the medical school at

the university? Just ideas.

Hang in there. This WILL get better. Keep in touch and let us know what

happens!

in NV

March 27, 2004

dghfxhvm,mz.bnz ad

March 27, 2004

There are several Child Psychiatrists in our area but not a single

one of them is accepting new patients. Our insurance company has

agreed to set us up an appointment out of network but they called

yesterday and said they are still working on it, with no luck. I

have asked some to make exceptions, saying this is an urgent matter

and they have suggested that we take him to the emergency room. I

don't think a Child Psychiatrist is likely to be in our local

emergency room on a Saturday night when he only chooses to work

Monday thru Thursday anyway. I was never aware of this mental health

care crisis until this happened to us and I think it is absolutely

tragic that society is letting down our children with substandard

mental health care. I have a call in to the University of Florida,

Dr. , and hope to hear back from her Monday. Gainesville

is within driving distance.

I was stunned to hear that PANDAS patients have the urge to urinate

frequently. My son has the urge to urinate frequently and I have

mentioned this to all of our doctors. I wanted him tested for a

bladder infection also. I was told it was probably just a yeast

infection since he had one in his throat.

Thank you for all your responses and support. I really appreciate

your words of encouragement.

Tracey

March 27, 2004

> There are several Child Psychiatrists in our area but not a single

> one of them is accepting new patients. Our insurance company has

> agreed to set us up an appointment out of network but they called

> yesterday and said they are still working on it, with no luck. I

> have asked some to make exceptions, saying this is an urgent matter

> and they have suggested that we take him to the emergency room. I

> don't think a Child Psychiatrist is likely to be in our local

> emergency room on a Saturday night when he only chooses to work

> Monday thru Thursday anyway.

It very much depends on where you live. It drives me crazy, but in our

town the emergency room really isn't primarily a place for emergencies.

My family doctor (primary care physician) has sent me to the emergency

room with a sore throat and also for a tooth ache rather than call in a

prescription and/or come in to the office to see me on a weekend. (I

keep wondering how he would feel if I sent him the bill!)

If you go to the emergency room, you probably won't be seen by a child

psychiatrist right then and there, but the doctor on call will probably

make an appointment with a local child psych to see you within the next

day or two. (One of the ones you couldn't get in to see because he/she

wasn't seeing new patients).

Again, I can only speak from experience in this area, but the child

psychiatrists aren't really my first choice anyway. They are all

heavily booked, and usually only spend 5-10 minutes per patient mostly

for medication management. My son actually sees a person who is

licensed as a social worker, and my daughter sees a psychologist. Both

are incredible. The social worker, in particular is phenomonal and

very, very knowledgeable about OCD. (We chose him because I knew of

him from having worked with some of my students previously. Boy was I

shocked to find he was actually a social worker).

>

> I was stunned to hear that PANDAS patients have the urge to urinate

> frequently. My son has the urge to urinate frequently and I have

> mentioned this to all of our doctors. I wanted him tested for a

> bladder infection also. I was told it was probably just a yeast

> infection since he had one in his throat.

>

Our pediatrician recently told us that this is common enough that he

routinely tests all kids who come in with frequent urination for strep.

That was also one of my son's first complaints. At the time, I

remember him asking if he had had a sore throat recently, but he

hadn't. (We now know that my son gets upper respritory strep

anyway...)

Jeanne

jwestpha@...

NBCT - Exceptional Needs (2000)

March 27, 2004

((Hugs to you and your family))

I am so sorry to hear about your son. I too am new to this whole OCD

thing. My son was just diagnosed a couple of weeks ago. He is 5

yrs. old. I understand how devastating it is to hear that your baby

is suffering from such a disorder. I felt the exact same way. I

initially took him to the doc for an ADHD vs. Asperger's (Autism)

dx. When she told me he was OCD with Autistic tendencies, I went

silent. I didn't even ask for literature or information or

anything. I just got home as soon as I could and went to my room to

cry and wonder where I went wrong.

You have a long road ahead of you but you sound like a very strong

mother, so I'm sure you and your family will make it through this.

I'm sorry I didn't have any advice for you other than to let you know

that you are not alone in this and your family will make it

through! Please feel free to vent to me anytime. I always have

open ears!

Joannie