Help from the group

[Guest guest]

I'm sorry this post is so long. I realize no of you are doctors, but you

all actually have more firsthand experience and I value your opinions and

input. I was just wondering if some of you might be able to tell me when

the OCD first started, when you speak of waxing and waning, how it was for

you and yours.

I feel pretty sure we are dealing with PANDAS, because my dd had 2 incidents

when she was little both when she was sick. Once the strep was positive and

if I remember right the other it was negative, but she was sick with upper

respiratory. At that time she had an issue where her panties were too

tight. We were buy size 8 when she needed a 4. This went on for quite a

while. The doctor brought up the fact about the connection between strep

and obsessive behavior.

The next time she had anything that I can say was tic type was winter before

last. She was terribly sick the whole winter. They didn't put her on an

antibiotic for a long time as they felt it was the flu and an antibiotic

wouldn't help. They said they were seeing tons of this type of stuff. Her

cough was horrible. She literally stayed sick for 3 or 4 months. They

finally put her on antibiotics, but by this time she had pneumonia and had

developed a horrible throat clearing, that was constant. But she did have a

lot of flem you could hear in her cough. Her throat looked bad and they did

the strep and it was negative. The doctor felt it was possible it had

become a sort of habit or tic, but because her throat looked so bad she

wanted me to take her to the throat specialist. We got in either the next

day or the next. He looked at her throat and told me he felt sure it was

strep. I told him they had done the strep and it was negative. He did the

strep and when he came back in he told me he was really surprised as her

throat looked so bad, he had felt sure it was strep. He said regardless he

was putting her on an antibiotic and to call if she didn't get better soon.

I think they also did the send away strep and it was negative, but I'm not

sure. I still think she had strep somewhere in her body that wasn't picked

up. Anyway, once again we were going into spring and when she finally got

well and the weather cleared up, the throat clearing thing finally was gone.

Last year was a great year. We did get 2 flu shots a month apart. Then

early this summer she got a bad throat. I regret now that I didn't take her

to the doctor but she has never been a complainer and she kept saying it was

getting better. Both Jerry and I got sick with throats later and had to

take antibiotics to get rid of them. We think this is about the time we

noticed a little uh sound, repetitiously. It was not all the time, and most

people wouldn't notice it, it was so quiet.

She went to camp the end of July and when we picked her up I was shocked to

see her eye. Her right eyelid was bright red and swollen almost completely

shut. As soon as she got in the car she said how bad it hurt. I was

surprised that they hadn't called us as she said it had hurt for 3 days. It

was late Friday afternoon, so we drove straight to the pharmacy to see what

we might use. When the pharmacist saw it, he told me that with an eye as

bad as that he felt we needed to call the doctor. We did and got eye drops.

It was Friday night so the doctor's office didn't see it, but they said they

usually clear up in 4or 5 days. This did not. We were close to 2 weeks

getting rid of it. I got on the internet and it said hot packs help, so we

tried that. When I did the hot packs, several times pus drained out, which

of course I thought was helpful. The internet also said that most styes are

caused by staph or strep.

It was right at the end of this stye that her worries started. It was

absolutely overnight. She can actually tell you what she was thinking about

when the worries started. All of a sudden she started coming to me with

little things she thought she had done wrong, or said wrong and maybe hurt

someone's feelings, etc. She is brought up things in kindergarten, first

grade. Then she asked me if I forgive her. I told her I forgive her. I

told her over and over, that nothing she has done was bad, that she is just

a little girl and I don't expect her to be perfect. But even though I told

her she is forgiven, she says she doesn't feel forgiven. It's like she was

caught in a loop. She would go on and on. You could see the torment on her

face. Sometimes there would be 10 or 15 in a row. Most of them are

trivial, absolutely nothing. She also seems very hyper, anxious, and

frustrated, which is not her personality at all. We were so scared. It

never stopped. School was ready to start and I was scared to death for what

was happening to her. I called the doctor and the doctor I normally see was

out for the whole week. I saw one of the other doctors. We talked about

what Dr. Collard and I had talked about with the strep and the obsessive

behavior. By this time, I had looked on the internet and saw about the

PANDA. They did the rapid strep but it was negative. I didn't think about

the eye until later. Anyway they gave me a prescription for Augmentin and

we went on it. She started 3rd grade. I guess she must have told the

teacher she had some worries, and she asked her if she'd like to go to the

nurse. I think in her mind that she thought maybe the nurse could help her.

The nurse told her that if she thought she had done something wrong maybe

she should go back and apologize to the people she thought she had wronged.

I kind of advised her differently on most, as they are not wrongs. When she

would get in the car after school, she would start as soon as she got in the

car with what she calls her worries. Over and over. But they are things

she thinks she is guilty of. I didn't know what to do, so I suggested maybe

if she would write them down, she wouldn't have to keep them in her head and

it would make it easier. She thought that was a good idea. I gave her a

notebook. The next day I called the nurse to make her aware that she was

going through some difficulties and she told me she was so glad we were

getting her help. I asked if she had ever seen anything like this and she

said never seen anything this severe. I emailed the teacher and asked if I

could see her and went to school that afternoon. I had only met her for a

moment the night they got their teacher assignments. She said she had asked

her if she had some paper that she had some worries and wanted to write them

down. I guess at recess she sat on a bench and wrote her worries. The

teacher also told me that she had noticed that she hadn't really played with

the others the other 3 or 4 days before that.

In the mean time I was trying through CHIPS to get some help somewhere. I

got on the internet finally and looked for information, hoping to find help

somewhere when I

found this group. She went on the Augmentin and after about 12 days we

started seeing a lot of improvement. It seemed like when she was busy and

playing with her cousin or something fun, she was like her old self. Then

It kind of started up again. Not as bad as the 2 weeks before, but they

were awful. She was so upset. You could see it all over her face. She

keeps believing she has done all these bad things. I took her to get her

hair cut, which is usually a really special treat for her, as we hardly ever

go. On the way out, she told me that the girl had asked her if she would

like her to use the curling iron and make some curls, which normally she

would just love, but she told her no. I said " Why, you love to get it

curled. " She said because she felt like she didn't deserve them.

We also think our daughter (her mother) had some issues (never really

diagnosed, but we feel sure our daughter had problems) and I'm not sure on

her biological father's side, but I think from something my daughter said,

something he said about his mother, sounded like she may have had problems.

They lived in Oklahoma, so she had never seen or met them.

Laying in bed trying to help her get to sleep she would just talk, talk,

rapid. Then one night she told me that ever since the worries started she

thought she should be dead. She had already told me one morning at

breakfast that her friends didn't believe her when she told them she would

be glad when she died. I said " What " Why would you say that? " She said

then I could go to heaven and be with Mommy. " (Another odd thing, she has

started to use Mommy during this time, instead of Momma, which she has used

for the last 2 or 3 years). She calls me Mommy most of the time now,

instead of Momma. She also calls me Grandma some. I really got upset over

the dying talk and decided to call the pediatrician to ask them to please

give me Zithromax to continue on after the Augmentin, as so many seem to

think that helps so much more if it is the PANDA. They gave me a scrip for

15 pills. She has been on the Zithromax, 5 days on, 5 days off, 5 days on,

5 days off and were ready to go back on this Friday. She has had huge

improvement on the antibiotics. She still comes with some worries, but not

the frantic over and over, worry after worry all the time. She is playing

at school, doing pretty well with her work. She is still very I guess you

would say unfocused. If I tell her to go in and brush her teeth, I might go

in 10 minutes later and she'll be in the bathroom doing something else. She

is still much more hyper and I would say still moodier, but from where we

were a month ago until now is like day and night.

I'm sorry this is sooooo long, but my question is, does the regular OCD wane

like this? I have nothing to really base it on. I'm crediting the

antibiotics as the improvement started after we went on them, and almost

every day since then we have seen improvement. But does the regular OCD

follow this same pattern. Does it develop over weeks, or months, etc. If

any of you can share your experiences with me, I would be so grateful. This

group has been a godsend, along with others I have met online.

Beth