Re: Help from the group

October 1, 2009

>Hi Beth,

I'm only familiar with PANDAS from what I've read here and recently in the media

(yay, more awareness!), but regular OCD does wax and wane. Sometimes predictably

(illness, stress, etc) and sometimes unpredictably. ERP treatment is the best

known, and really can prevent relapse, however.

Your grandaughter is lucky to have so much love.

Terry

> 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

>

October 1, 2009

Beth,

What you described with your daughter is one of the most clear cut PANDAS cases

I have ever read. I have been dealing with PANDAS for 8 years with my children.

Your daughter has almost every single PANDAS symptom. Here are two websites

with tons of PANDAS info and lots of parents with lots of experience and advice

regarding PANDAS.

www.pandasnetwork.org and www.latitudes.org (there is a PANDAS section).

It is really good that she is currently on antibiotics, but 5 days on and 5 days

off is not enough at this point to treat strep or prevent it. I would really

recommend doing daily Zithromax for the near future. How much does your

daughter weigh? A common prophylactic dose for Zithromax is 250mg/day. After

the child is on that dose for a good long time, cutting it back to 125mg/day

works for some kids. There are other antibiotic options if your physician won't

give you Zith, such as Keflex.

I am glad your physician was aware that PANDAS existed b/c unfortunately so many

children are being misdiagnosed as just OCD or Tourete's and the strep

connection is never found. Many PANDAS children will have negative throat

cultures. The theory is that the strep is elsewhere in their body. There are

many places bsides the throat where strep hides.

Colleen