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We are looking for answers. Here is a synopsis I wrote up about what has happened with my son. Before this happened he was an easy going loving kid. He's always shy around strangers and new environments but other than that no anxiety. Just normal kid behavior. He is 5 years old.

 

He had a very bad sore throat the end of May. The doctor described it as big white patches. His glands were swollen. I remember that some time around this they did a strep culture and it was negative. Then he kept getting worse and his glands got really swollen. I took him in a couple more times and then they had me take him to the lab and get a blood test done. He tested positive for mono. She said not to do antibiotics because mono is a virus. We went to the beach the first week of July and when we got back he told me his throat was really hurting and he did not feel good. He started telling me that he loved me all the time - like yelling it at me. Started being concerned about things being wet and germs. Took him back in and they said it was just the mono and it needed to run its course.

 

The obsessive behavior got worse. Became more obsessed with germs. I started working in the mornings then and I thought he was just getting stressed because of it. Then school started and we thought now that he would be in this new routine he would do better and were just hoping that all the stress he had been going through would go away. He had a horrible first week of school - major separation anxiety. We had to push in the door (literally-lots of crying). That weekend he started having to go pee like 5 times an hour. That was the weekend he learned to swim under water and I remember my husband and I just could not believe how many times he got out of the pool to go and pee.

 

Then the next week on Monday night I noticed that he was doing some counting stuff on his hands when he was going to bed(this is the only time I have ever seen him do this). His Kindergarten teacher mentioned to me that Ethan is shaking at school. It was horrible - it was like it had taken over his body.

 

I got on the computer that night and did a search for sudden ocd symptoms/dramatic change in behavior. I found all the stuff on PANDAS. I made him an appt the next morning and we went in to the pediatrician. I took in all the stuff on PANDAS and wrote down all the stuff he was doing. She did a urinalysis to see if he had an infection and it was negative and then after reading the PANDAS stuff did a throat culture and it was positive. She started him on Omniceft. Within 3 days he was 95% back to normal. It was amazing!! We were so happy. Then after day 10 when the medicine ended the next day after he started obsessive stuff again. I took him back in to dr and they did culture and it is still positive - they put him on Clindamiacyn. He was on it for about 4 days and it did nothing. Then they put him on Keflex for 3 days and did nothing. Then put him on Omniceft again and within 7 days we saw dramatic results. He was 95% better. We took him in and they did a rapid strep and it was negative. They also sent away for culture. He had a great afternoon. He then started coughing. Friday he started saying a lot of anxious things. Friday night he ran a fever of 102.5...over the weekend it got to 103...104. Took him to the dr yesterday and she says he has croop. His obsessive behaviors are back ... he is worried about things being wet, germs, things being dirty, etc. I just called the pediatrician again to see if the culture she sent away was negative or not. He also spends a lot of time on the toilet and has had an upset stomach for awhile.

 

My husband and I are trying to figure out what we should be doing. What kind of medical specialist should he go to? Should I start him in therapy? Did you all work through your pediatricians? I see that diet and omegas and probiotics are very important. He also has very bad allergies...

 

Thanks for responding. Also how do all of you handle the grief of something is wrong...I guess I am starting to accept it but also feel like this can't be happening to my baby. : (

 

 

Hi.

 

I'm too sure how to do this, but registered this morning and here I am. After reading your story, I am blown away. Brief history...I have three daughters, 11, 10 and 7. November 30th my oldest daughter spent the night at a friends house and called me by 10:00 pm to tell me that she didn't feel good - her asthma was acting up (she is very asthmatic and has been in the hospital twice), so I picked her up. When she got home she insisted she needed to go back to the hospital something was just not right. I checked her breathing and she was fine, no wheezing, etc., I couldn't seem to calm her down, we tried to lay down for awhile and she said her throat was closing (in June 07 she was hospitalized with Crepitas (sp?), her lung had popped from an asthma attack), just like when she had crepitas. I asked her if she could hear "rice crispys" that's when the air is trapped under your skin, she said no. So, as she is still freaking out, we laid on the couch and watched TV. I dosed off, but not her, she was too scared. She really didn't know what was going on with her body. Well, finally she fell asleep. The next day I took her to the doctor. He said she is probably coming down with a virus and showed her how to determine if she is having an asthma attack or not having one, which oh my gosh, we already know this, believe me, but it wasn't her normal doctor. The following week I kept her home from school for three days and still not feeling that great (dark circles under her eyes), she referred to it as feeling poopy, sent her back to school. The following week my youngest daughter came down with strep throat (which we have never had in our family before) so that was December 11th. By December 13th my oldest was tested and it came back positive. By December 18th, she told me after waking up she couldn't go to school, her throat her too much, so I took her back to the doctor and she tested negative (rapid test). Through our holiday she just didn't seem herself, crying a lot, very tired, and still the dark circles under her eyes, oh and telling me her stomach her every night. Well, yesterday, December 28, she had the same exact symptoms as Nov. 30th, so back to the doctor. On the way there, she again, starting freaking out like she her throat was closing, hyperventilating, fingers felt like they couldn't move and very tingly. The doctor cultured her and my middle daughter and the middle daughter came up positive, my older daughter no. The doctor said she didn't trust the rapid test so she will test and call us in the morning (today). The funny thing is my older daughter has always suffered from anxiety (had to home school her in 2nd because of anxiety), but we have learned to work through it and of course have had some visits with therapists. She is also a straight A student and has been every since she started school. When the doctor called me back yesterday after we had left she said she had researched this thing called PANDA..wow after reading this...I am lost. Is this really true? I don't believe in putting my daughter on any kind of anxiety medicine. I don't what to do? Did you get a blood work up on your son? I feel so bad for her...for 11 years old she knows her body quite well and knows she just doesn't feel right. If you have any other tips or could shed some light...I would love to hear from you.

 

Confused in California

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Hi!

Sorry to hear of your problem with your daughter. I just wanted to let you know that there is active discussion on PANDAS/PITANDS under the Tourette Syndrome/Tics Forum. Please look there, you will find a wealth of information.

 

God Bless!!!!

Kelly

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Sorry it has taken me so long to get back. Our situation began in August after our daughter came down with Fifths Disease. She's always had high anxiety, but nothing unremarkable. Two weeks after contracting Fifths, she out of the blue began hand washing, then thoughts popped in her head and caused a verbal tic reaction, then tongue flicking in and out of her mouth. All these things came out of the blue. Her strep tider was normal, but her antibodies were very high... this being done in December, months after beginning the tics and OCD. Our doctor (psychiatrist) said that our local hospital (we're in an area with cutting edge hospitals) would entertain a plasma exchange only after SRI treatments have proven to fail - i.e. her antibodies are dying off adequately to stop the tics and obsessive compulsive tendencies. We began Prozac 2 weeks before Christmas. Our daughter reported feeling "a little better", but ended up being a placebo effect as her symptoms worsened. It hasn't helped that at that same time her brother came down with strep! So we've upped her dose and will do so again in two weeks if things don't improve. I feel lucky to have these doctors (one being a psychologist who will help her cope and manage her OCD once th meds are working). Thanks for your positive thoughts. What is your story around PANDA/PITANDS?

 

I am really impressed with your doctor. Our ped was clueless she didn't even offer referrals just to go to a neurologist. She said it was out of her expertice. Please keep us informed. Possible the information you find could help many others here who are struggling because we can' find Dr's who get involved to find the best treatment plans. It is great that your Dr. knew these tests to run. Our neurologist said PITANDS is an old term that is not used anymore. I am interested where you go from here. Most of the PANDAS cases have antibodies to strep attacking the brain. How is your child behaving? How long has it been going on? I am so happy you are working so hard to get results. You are in our prayers.

Michele

Thanks for your encouragement. I am learning more and more each day. According to the doctor, my daughter most likily be a PITANDS - as her Fifths Disease started this intense OCD stint. From the reserach on PANDAS and PITANDS, it is the strep antibody that is interfering in the basil ganglia. So, where do we go from here as her antibody is over 570 (normal is 0-170)? Our doctor is consulting the experts who are in the forefront of these two recently discovered disorders. I've read that plasma exchange is a possibility as well - to elliminate the antibodies... I really am not wanting the SSRI medications... I'll keep you updated and our doctors is waiting to hear back from a dozen or more calls out.

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Hi,

Hope things are looking up for you and your daughter. You mentioned her "strep titer was normal, but antibodies were very high." Which titer was normal, and which antibodies were high? Also, your son had strep, right? A PANDAS child can get the same symptoms from just being exposed to the strep, also, PANDAS kids often show no signs of strep. If your son had strep and your daughter showed increase of symptoms, I would get her cultured for strep. This may be why the SSRI seemed to stop working, the strep exposure. Have you tried antibiotics?

 

Kelly

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