PURE Obsession OCD & Pandas

[ip_s]

I just joined the forum today.

 

Two years ago in April of 2007, my son had 2-3 reoccuring streps and then for a 4-6 week period all my happy go lucky kid could do was worry about swears, privates, and his middle finger (He was 5 at the time and just knew it was bad). By summer, he was back to his happy self until October when he had another confirmed strep...needless to say from late October to early December, he was again "confessing constantly" about privates, his middle finger, and swears. In December, 2007, he had his tonsils removed and by Christmas was completely back to himself. By this time, we were seeing a neurologist out of Boston Children's Hospital and was diagnosed with PANDAS.

 

For two years, we had no issues. My son has always worried about right or wrong, but definitely no obsessions. Then in October, he was not feeling well, went to the doctor and didn't test positive though his two cousins (who he had slept in the room the night before) did. Also around this time, he had the flu shot and H1N1 shot (a decision I will regret the rest of my life). Needless to say, we have now been through a month and a half of pure heartbreak. My happy third grader is so worried about sex (he is not even sure what it is, just knows there are privates involved) that he tattles on himself constantly for his thoughts (a few weeks ago it was violent thoughts). His only obsession is to tell on himself - very painful for us because the thoughts are disturbing though we know it is the OCD talking.

 

Two weeks ago, on the neurologists advice, we placed him on Zithromax for a time period and also started Zoloft (50 mg now) for OCD. His titers have not been elevated this time though in 2007 they were (not outrageous though). We are at a loss.

 

On Saturday, he seemed to come back 100% but then Sunday was very bad. We are seeing a OCD therapist experienced with children and PANDAS, but because my son's only compulsion is to tell, he often sneaks it out before we can apply any strategies.

 

Do other children have these types of obsessions? Are they violent or sexual (completely out of character)? Did anyone have flu shots? What about the Zoloft (very torn but had to try)? How long do others symptoms normally last? Needless to say, this is not my normal child. He is not an angel, but these are so bizarre. He is also moody and math and his writing definitely have diminished since the beginning of the school year. Looking forward to hearing from others. Thanks.

[MomWithOCDSon]

I just joined the forum today.

 

Two years ago in April of 2007, my son had 2-3 reoccuring streps and then for a 4-6 week period all my happy go lucky kid could do was worry about swears, privates, and his middle finger (He was 5 at the time and just knew it was bad). By summer, he was back to his happy self until October when he had another confirmed strep...needless to say from late October to early December, he was again "confessing constantly" about privates, his middle finger, and swears. In December, 2007, he had his tonsils removed and by Christmas was completely back to himself. By this time, we were seeing a neurologist out of Boston Children's Hospital and was diagnosed with PANDAS.

 

For two years, we had no issues. My son has always worried about right or wrong, but definitely no obsessions. Then in October, he was not feeling well, went to the doctor and didn't test positive though his two cousins (who he had slept in the room the night before) did. Also around this time, he had the flu shot and H1N1 shot (a decision I will regret the rest of my life). Needless to say, we have now been through a month and a half of pure heartbreak. My happy third grader is so worried about sex (he is not even sure what it is, just knows there are privates involved) that he tattles on himself constantly for his thoughts (a few weeks ago it was violent thoughts). His only obsession is to tell on himself - very painful for us because the thoughts are disturbing though we know it is the OCD talking.

 

Two weeks ago, on the neurologists advice, we placed him on Zithromax for a time period and also started Zoloft (50 mg now) for OCD. His titers have not been elevated this time though in 2007 they were (not outrageous though). We are at a loss.

 

On Saturday, he seemed to come back 100% but then Sunday was very bad. We are seeing a OCD therapist experienced with children and PANDAS, but because my son's only compulsion is to tell, he often sneaks it out before we can apply any strategies.

 

Do other children have these types of obsessions? Are they violent or sexual (completely out of character)? Did anyone have flu shots? What about the Zoloft (very torn but had to try)? How long do others symptoms normally last? Needless to say, this is not my normal child. He is not an angel, but these are so bizarre. He is also moody and math and his writing definitely have diminished since the beginning of the school year. Looking forward to hearing from others. Thanks.

 

Yes, when OCD/PANDAS is very active, our son is what we call "compulsively confessional." Sometimes, he'll bring up things that happened two years ago and tearfully confess them, sometimes for the second or third time.

 

He, too, has had his moments when he seemed to be confessional mostly about "naughty" thoughts inspired by something he saw on TV or on the computer or in one of his computer games. It will distress him to the point of tears, no matter how much we remind him that this is the OCD talking, and it's okay, and thinking about some sexual/body things is normal for a boy of his age (he's 12 now, but I would say some of this began at least a year ago), but the OCD is making it bigger than it should be. Ultimately, when it's not been about truly harmful thoughts, when he asks if he can tell us something, or even if he doesn't ask first but just blurts out the confession, we'll say something like, "You know, I really don't need to hear any OCD confessions."

 

It gets harder, though, when the thoughts and keeping the confessions in are obviously painful for the kids. After having been exposed for about a week to a group therapy program at which the more typically discussed issues were suicide and self-harm, rather than the anxiety that could contribute to those concerns (we'll NEVER do group therapy for him again! Aarrgghh!!!), our son started confessing to having all sorts of suicidal thoughts. It was the first time, ever, in his entire life and we KNEW he'd just been inundated with such ideas from this group and then his OCD grabbed hold of it for all it was worth because it helped ramp up his anxiety. We had to handle that more gently, but we just kept re-assuring him that this was the OCD talking; that it wasn't in any way "real" or authentic to who he truly is as a person. After a couple of weeks, those thoughts seem to fade away entirely, and we haven't heard anything of that ilk from him since.

 

Because he was diagnosed with OCD long before we even knew about PANDAS, we have a long history with SSRIs. For us, they've been helpful. Lexapro was a godsend for almost 5 years, until this latest exacerbation.

[Kayanne]

I'm sorry that you are here...but your at the right place.

 

My daughter, too, had the tell on herself all time.

 

How old is your son, and what does he weigh?

 

Generally, where do you live?--we may be able to suggest a dr.

 

How long does the neurologist want to keep him on zithromax...many people have found that a longer course--minimum of a month is needed to see results--if you can get two months even better.

 

We did have our PANDAS daughter get the first dose of the H1N1 vaccine on Nov 17, and have not seen an increase in symptoms....I do think, however, this may be a bit of an exception....most people report PANDAS getting worse after either getting the vaccine or contracting the flu directly.

 

My husband was on zoloft for a few years, he had good results from it for his anxity/panic attacks. Is 50 mg the start dose, and they are going to start lowering it to find the right dose?

 

My husband's side effects on it were weight gain, drowsiness.

 

If you think your son is not improving from the zoloft, or is getting worse....PANDAS kids have been shown to not do too well on SSRI's

 

http://www.latitudes.org/forums/index.php?...p;hl=SSRI's

 

This thread discusses SSRI's and PANDAS

 

I hope the zith works for you soon!

 

~Karen

[thereishope]

Welcome! Some PANDAS kids react to strep exposure and some kids have reactions to vaccinations so that may explain what happened in Oct. He had a double whammy.

 

Others have had the compulsion to tell on themself or to only be honest. As for the sexual thoughts or worries, I know adults with OCD have those. I'm not sure about those on this forum. Hopefully mroe will chime in.

 

Also, if you were around the kids that had strep, you will want to rule out other family members having strep as well.

[dabel]

My son is now 12. Although he has just recently been diagnosed, he has had this since the age of 5 for sure and we think more likely the age of two. He has horrible intrusive thoughts. He was hospitalized at the age of 8 for being suicidal and at age 11 for being homicidal. He wanted to kill me. This was not part of a rage which was what was very concerning. There was no basis for this at all. He has also had thoughts of killing his friends. I am told that these intrusive thoughts are one of the hardest parts of OCD. I can't imagine trying to deal with this. These poor kids. My child has not had any sexual bad thoughts as far as I know. As far as how long these bad periods can last it really seems to vary for people. In our case, a bad phase can last over a year at times. My son did have IVIG not quite 2 weeks ago and we are seeing much improvement! Thank God! Hopefully we can conquer this! I am sorry that you are having to deal with this. I hope you take comfort in knowing that you are not alone and there are a lot of people here that can relate to you and support you.

[T_Mom]

Yes, last year our d had unusual "sexualized" dance movements that were surprising to us (in the worst of it she one day started break-dancing in suggestive manner???) 10 years old and we had never seen her do anything like that--it was very strange.

We saw glimpses of this when she was really sick with Ps...I put it down to some type of Basal Ganglia inflammation triggered issue--but who know! Others had shared with me that their kids had similar experiences--

 

The saying of "I am going to kill you" "kill myself" etc. was also something that has been present when in exacerbations--Opening of the car doors when moving, etc. This from two sweet little girls who would normally never say anything remotely close to this--

I chalk it up to the illness.

[Joan Pandas Mom]

I am fairly new to this site too. It has been so helpful. Thank all of you. My son can get bombarded with intrusive thoughts against God. This is very upsetting to him because he loves God. The intrusive thoughts are swears against God. The OCD part of PANDAS is so tricky. It tries to creep in anywhere it can. Once you cut one monsterous head off of it, another one grows. Most kids with OCD have to confess. They usually can't tell lies either. I would suggest when your son's PANDAS is under control, going to a good CBT/ERP Therapist. We went to Univ. of So. Florida, Dr. Storch runs the program there. We saw Dr. Ramen and Dr. Aldea. Also, Dr. Gorbis in Los Angelas, CA and Dr. Lee Fitzgibbons in Raymond, ME. They are all excellent. I found the ones that are the best have been trained under Dr. Foa at University of Pennsylvania. Hand in there. It will pass.