PANDAS - OCD

[eaccae]

Hi - I'm new here and was wondering how is PANDAS diagnosed and who does the diagnosing?

 

My DD (5) was hospitalized 3 years ago for a week due to an inflammed lymph node under her arm. It was the size of a plumb and when they were finally able to drain it - they found it FULL of the strep A scarlet fever virus. (She had tested negative on the throat culture although the rest of us tested positive - we ALL had the rash.)

 

Upon her release - she became a fictional character. For the next 9 months we were not allowed to call her by name - "she" was gone. Then one day, out of the blue, "she" returned along with some MAJOR OCD rituals/obsessions (we had to go down the stairs a certain way, open the doors a certain way - in certain orders, etc.) After about 5 months they practically disappeared. Some issues lingered but weren't a problem. Last year we did have a couple of issues - she wouldn't go to the bathroom for 5 months at school because it wasn't "blue" . . . but nothing that we couldn't deal with. This fall - out of the blue - it hit full force again - we can't say "hot cocoa" - it MUST be "hot chocolate" - we stir the cream of wheat the wrong way, etc.

 

It was dibilitating before but then it all but disappeared. The pediatrician and I have been keeping an eye on it but it hasn't seemed a problem. It is now rendering us almost nonfunctional.

 

I asked the pediatrician about PANDAS - I was concerned becasue it seemed cyclical and she did have a history with the strep A . . . the pediatrician dismissed it because she felt that it only dealt with tics. She directed me to a psychologist. We have state health insurance for the kids because we are self employed and DS doesn't qualify for any individual policy due to his adhd. There are only two clinics and they both have a waiting list of 4 months or so. The school psychologist thinks that this is definitely OCD-PANDAS but directed me back to the doctor to either do the testing or refer me to someone who does this. If she can't help me he is going to try and figure out who to send me to. In the meantime - for my own knowledge - who exactly should be doing the testing? And what tests should I be asking for - looking for?

 

Thanks,

Elizabeth

[ad_ccl]

Hi Elizabeth,

 

I am also new - my son was diagnosed with PANDAS in August. I just wrote a fairly lengthy reply to you and lost it due to a computer problem at my end. I only a few minutes but wanted to respond. Ronna is the PANDAS expert but I can answer a few questions based on my experience and research.

 

YES - OCD can occur with PANDAS, I think about 50% of kids get tics and 50% get OCD. My son had severe motor and vocal tics. ADHD also occurred when tics were bad, along with a personality change where nothing was going right for him, and he was lacking empathy ( very unlike his character) He was diagnosed by our pediatrician based the results of blood work, throat swab and symptoms. The Blood work was the ASO titer and the other one ( it was recently asked about by Mommy07 - something link DNase -- I should know this) and the throat swab was positive for strep. He was put on antibiotics and within 3 days the tics went away almost as quick as they came. I have written about my story under a New Here thread so won't repeat it all here. I did get a lot of info from the NIMH site ( national institute for mental health) you could google it along with PANDAS - there are MANY articles etc on the internet that talk about sudden onset of OCD with PANDAS. You should print them off and share the info with your doctor. If it is PANDAS you do need antibiotics - not a psychologist as your ped. is suggesting. MANY doctors do not know about PANDAS, I continue to be amazed that each doctor I have come across since then - emerg doctors and walk in clinics - no one has heard of PANDAS. Even the neurologist I saw admitted knowing little about it. I was VERY lucky that my ped. was familiar with this disorder or who knows where we would be now.

 

Good Luck.

 

 

edited - opps - I had meant to reply to this on the tics forum as that is where my New Here thread is.

[Guest Jessie]

Elizabeth, I know I'm coming into this late but our daughter's sound so much alike. I have wondered for months why my dd (also 5) has been exhibiting OCD-like behaviors. She always needs to go up and down stairs right foot first, hoards food, doesn't want to throw ANYTHING away, has to be the "last" person to kiss another goodbye, has to be the one to open/close doors, turn on/off TV/ lights, etc. It is wearing us all out and I have finally called our naturopath about looking into this further.

 

I'm not sure she has ever had strep (as we don't usually see doctors) but she is prone to EXTREMELY high fevers. Whenever she gets sick it is not uncommon for her fevers to hit 106. It has happened several times. We have always just alternated Motrin and Tylenol as well as luke warm baths to bring her fevers down.

 

Anyway, I am anxious to hear back from our naturopath and hope she can pursue this with us. If not I will be looking to call a pediatrician.

[Guest Guest_Sherry]

I am back... My DS was doing great and we thought we had this thing licked and then he got worse again! I wrote about 2 weeks ago - my 10 y/o had just finished his first round of antibiotics. Two days later I took him back in for another strep test. His tics had gotten worse again. Sure enough, this time he even had a belly rash and a very positive strep test. The doctor was floored! My family practice doctor has been great but he said bluntly, " I don't do tics!" So I have had to kind of go between both the family practice doc and the pediatric neurologist who has been absolutely wonderful! We are so blessed to have such a good, caring pediatric neurologist here in town. He called me last Friday and said he definitely believes that Geoff's tics are a result of the strep and again encouraged me to treat the strep very aggressively. Again, Geoff was getting so much better, almost completely tic free about the fourth day of antibiotics and then closer to the end of the prescription (about day 7) the tics once again began explosively. We had to bring him home from school today because he was so uncomfortable due to tics almost every minute - and this is a child who loves school and was very upset he had to come home!

 

The neurologist mentioned doing a tonsillectomy to prevent future strep infections but my husband says it's not the strep in his throat that is causing the tics but strep antibodies causing the problem. The neurologist also mentioned that we could do a trial of medication to prevent the tics (he mentioned Haldol) but I am so adamant against any of those anti-tic meds - the family practice doctor said to avoid them as much as possible because they have so many really bad side effects. We have been trying 5-HTP at night to get him to settle down and sleep and that works very well. The family practice doc said he had no problem with that.

 

My questions are: 1. Will a tonsillectomy really help in the long run if this is PANDAS? 2. What other natural remedies can we try to help him during the day? 3. We went on a family trip this weekend and the tics seemed to really intensify after spending over 2 hours in the car. Also he gets the tics a lot at bedtime - after being really exhausted. Is this what you guys have noticed with your children? My husband really things the car trip may have made Geoff much worse but I think it's the same old cycle we went through with his first round of Amoxicillin.

 

Thank you - you guys are a source of great support.

Sherry

[ad_ccl]

Hi Sherry,

 

Sorry to hear that your son ended up with tics again. Your story is sounding very similar to how mine started out. I have written a lot on the tic forum ( I don't check this board very often, only when I see a thread with PANDAS) - under New Here - I kept a running log in hopes of it helping someone someday. If you have the time you might get some ideas and learn from what we finally have discovered. I won't repeat it all here. I can answer your questions from what I know - others probably know more.

1. My son does not have tonsils, they were removed at age 2 - he is almost 7. I would think that if the strep infection is in the tonsils that it should help prevent further infections, but I think there is conflicting info on this. It was not something I have researched as it was not an issue for us.

2. We started a supplement program that seems to help. I have the info on my thread

3. My sons tics were ALWAYS worse when in the car. The two obvious triggers for us were the car and the tv. Hard to eliminate the car rides but we were able to eliminate the tv then introduce the LCD tv. The car and tv are both related to light and flicker. In the car the light flickers through buildings, trees etc. Keep an eye on how he does with florescent lights. This is also a trigger for my son.

4. My son's tics were also always worst at bedtime. I think it was probably a combo of being tired as well as having just watched his bedtime show. Others have also said their kids tic more when tired.

5. As you will see from my log - it seemed that each time we went back on antibiotics they did not work as well - we are currently using prophylactic antibiotics but had used full doses for over 4 months. Ultimately the antibiotics were not the solution for us.

 

Please read the thread and feel free to ask any questions. If you post on the tic forum I will be sure to see it. To give you hope - my son is doing so much better, and I truly believe that with the proper treatment, both antibiotic to get rid of the strep, and boosting the immune system that this is a temporary illness and he will grow out of it.

[mychildatnine]

I too have a child that started suddenly showing OCD symptoms. I didn't know what they were at first, we moved, started a new school, had a new addition to the family. I should have noticed, but hind sight is 20/20.

 

The Ped. tested our daughters ASO and it was unusally high. We are awaiting her Dnase test results. We are awaiting as well for our Ped. to contact a CBT(Cognitive Behavioral Therapist). I don't really know where to go from here. I'm hoping to get a lot of information on a mix of sites. thank you.

[Guest Guest]

We took Geoff for his 3rd strep test in the last 6 weeks. After another 2 week round of Amoxicillin and 2 days off it, he had another positive instant strep test! He also looked like he had a strep rash all over him today!

 

I did read up on natural remedies from this board and ordered some liquid cal/mag and a good chewable multivitamin from my vitamin supplier. I have some advantage because my husband is in the medical field so I can get them wholesale (which is great since I am a vitamin junkie!) and we will start Geoff on those when they get here. Now it looks like it's time to read up on strep from this site. The family practice doc just shakes his head and passes out the prescription but this is getting really ridiculous - 3 positive strep tests in 6 weeks! The tics are finally better somewhat today too - Tuesday it was so bad the teacher called me to come get him and he was really, really frustrated and upset.

 

thank you guys for all you have posted on this board! I don't know what I would do without your experience and advice.

 

Sherry

[Guest alyssa]

hi, my name is alyssa and im 18 years old. I was diagnosed with PANDAS when I was ten due to a strep infection that was never caught. I've been wanting to write for a while on this Forum to try and help other people since now im completely well. I live a competely normal great life at my university. However, PANDAS is something difficult for me to talk about because it was a very depressing and hard period in my life. I went through a lot of serious treatments at various hospitals in New York such as IVIG, and Puls Coritcal Steroids. Right now, I take Flax Seed Oil, Vitamen E, Vitamen, a Multi Vitamen, and other suplements as well as Zithromax 250 mlg three times weekly. My tics are very well controlled although it has taken alot of time to reach this point. Im open to helping anyone who wants to talk to me. From what i've seen no one writting on this forum actually has PANDAS, and I really think I might be able to help some of you because I've lived through what all of you are going through now.

[littlefoot]

Hi - I'm new here and was wondering how is PANDAS diagnosed and who does the diagnosing?

 

My DD (5) was hospitalized 3 years ago for a week due to an inflammed lymph node under her arm. It was the size of a plumb and when they were finally able to drain it - they found it FULL of the strep A scarlet fever virus. (She had tested negative on the throat culture although the rest of us tested positive - we ALL had the rash.)

 

Upon her release - she became a fictional character. For the next 9 months we were not allowed to call her by name - "she" was gone. Then one day, out of the blue, "she" returned along with some MAJOR OCD rituals/obsessions (we had to go down the stairs a certain way, open the doors a certain way - in certain orders, etc.) After about 5 months they practically disappeared. Some issues lingered but weren't a problem. Last year we did have a couple of issues - she wouldn't go to the bathroom for 5 months at school because it wasn't "blue" . . . but nothing that we couldn't deal with. This fall - out of the blue - it hit full force again - we can't say "hot cocoa" - it MUST be "hot chocolate" - we stir the cream of wheat the wrong way, etc.

 

It was dibilitating before but then it all but disappeared. The pediatrician and I have been keeping an eye on it but it hasn't seemed a problem. It is now rendering us almost nonfunctional.

 

I asked the pediatrician about PANDAS - I was concerned becasue it seemed cyclical and she did have a history with the strep A . . . the pediatrician dismissed it because she felt that it only dealt with tics. She directed me to a psychologist. We have state health insurance for the kids because we are self employed and DS doesn't qualify for any individual policy due to his adhd. There are only two clinics and they both have a waiting list of 4 months or so. The school psychologist thinks that this is definitely OCD-PANDAS but directed me back to the doctor to either do the testing or refer me to someone who does this. If she can't help me he is going to try and figure out who to send me to. In the meantime - for my own knowledge - who exactly should be doing the testing? And what tests should I be asking for - looking for?

 

Thanks,

Elizabeth

 

Hi Elizabeth, how are you? I am new here, so I'm not sure how this all works, but I thought I would try. I second your question about how the diagnosing of PANDAS is made. My son (8) was diagnosed with OCD a few months ago, and he just saw a psychiatrist for the first time. I mentioned to her the correlation between OCD and strep throat, and she suggested I get blood work done for him to check to see if he has the PANDAS. My dilemna is though, I called his pediatrician, and she had never heard of PANDAS, so she has no idea what blood work to give him. Do any of you have any idea the EXACT blood work that is needed???

I can't tell you how reassuring it is to read your posts and realize so much of what my son is going through is the OCD, and not just him. My husband and I are new at this, we have only had the diagnosis for a few short months, so it is still all new to us. I have a feeling this site will be very reassuring and helpful. I thank you all in advance for any info, and I will keep you all in my prayers!!

 

Julie

[faith]

Julie,

You would probably have to see an Infectious Disease doctor or a DAN Doctor (doctors who deal with autism) and the bloodwork is called anti Dnase B titer and ASO titer. Not all pediatricians will know about this as not many have dealt with it. I don't have any experience with this as my son has tested negative to this, but just wanted to answer your question since I don't see alot of activity on this thread.

 

Good luck

Faith

[MarkW]

hi, my name is alyssa and im 18 years old. I was diagnosed with PANDAS when I was ten due to a strep infection that was never caught. I've been wanting to write for a while on this Forum to try and help other people since now im completely well. I live a competely normal great life at my university. However, PANDAS is something difficult for me to talk about because it was a very depressing and hard period in my life. I went through a lot of serious treatments at various hospitals in New York such as IVIG, and Puls Coritcal Steroids. Right now, I take Flax Seed Oil, Vitamen E, Vitamen, a Multi Vitamen, and other suplements as well as Zithromax 250 mlg three times weekly. My tics are very well controlled although it has taken alot of time to reach this point. Im open to helping anyone who wants to talk to me. From what i've seen no one writting on this forum actually has PANDAS, and I really think I might be able to help some of you because I've lived through what all of you are going through now.