PANDAS or ts/ocd

[momofgirls]

Hi everyone I don't know if my daughter now 6 has PANDAS. About 3 yrs ago she had strep and developed a cough. The strep was treated but the cough remained. Pediatrician checked her for allergies and a pulmonarty dr ruled out asthma. She coughed for 6 mos. Looking back I wonder if it were her first tic. After 6 mos the cough resolved on its own in the spring. The next fall the cough returned and lasted about 3 weeks again resolving on its own. The next spring she got sick not strep but an antibiotic was prescribed and about two weeks later she started ticcing ie sniffling and tongue clicking. This lasted most of the summer but resolved. First day of kinderg she had and explosion of tics and severe OCD symptoms. She was not sick but stressed perhaps with school starting. Psych prescribed prozac and she improved over the next couple of months but symptoms continued up and down all winter. Finally we saw a DAN dr and strep titers were checked all negative. Her symptoms have been up and down since but relatively mild. She is no longer on prozac. Our psych agreed recently to try a 10 day course of keflex. What should I expect? If pandas would she improve? If she doesn't improve can I ruld out pandas? I am at a loss so any thoughts would be appreciated. Kim

[momofgirls]

Someone please respond

 

 

uote name='momofgirls' date='Sep 5 2009, 09:58 AM' post='37373']

Hi everyone I don't know if my daughter now 6 has PANDAS. About 3 yrs ago she had strep and developed a cough. The strep was treated but the cough remained. Pediatrician checked her for allergies and a pulmonarty dr ruled out asthma. She coughed for 6 mos. Looking back I wonder if it were her first tic. After 6 mos the cough resolved on its own in the spring. The next fall the cough returned and lasted about 3 weeks again resolving on its own. The next spring she got sick not strep but an antibiotic was prescribed and about two weeks later she started ticcing ie sniffling and tongue clicking. This lasted most of the summer but resolved. First day of kinderg she had and explosion of tics and severe OCD symptoms. She was not sick but stressed perhaps with school starting. Psych prescribed prozac and she improved over the next couple of months but symptoms continued up and down all winter. Finally we saw a DAN dr and strep titers were checked all negative. Her symptoms have been up and down since but relatively mild. She is no longer on prozac. Our psych agreed recently to try a 10 day course of keflex. What should I expect? If pandas would she improve? If she doesn't improve can I ruld out pandas? I am at a loss so any thoughts would be appreciated. Kim

[KeithandElizabeth]

Hello:

 

I would definitely consider PANDAS. Depending on where you live, you may want to consult with either Dr. Kovacevic in Chicago (he gives consultations via the phone) or Dr. Latimer in Washington. Dr. K has a great website, webpediatrics.com, that explains symptoms and treatments for PANDAS.

 

I know you must be feeling stressed while you try to figure out on you own what is going on with your child. This is a great website with so many resourceful threads.

 

elizabeth

[momofgirls]

Thanks so much for your reply. I am desperate for help. Do PANDAS kids always have a dramatic onset? Her symptoms after strep were mild and I didn't think of anything like this. They seem to have progressed more slowly over time.

Hello:

 

I would definitely consider PANDAS. Depending on where you live, you may want to consult with either Dr. Kovacevic in Chicago (he gives consultations via the phone) or Dr. Latimer in Washington. Dr. K has a great website, webpediatrics.com, that explains symptoms and treatments for PANDAS.

 

I know you must be feeling stressed while you try to figure out on you own what is going on with your child. This is a great website with so many resourceful threads.

 

elizabeth

[dcmom]

Hi momofgirls,

 

I am sorry you are going through this.

 

Unfortunately so much of pandas is unknown. You need to find a great doctor- tell us where you live.

 

The "hallmark" of pandas, is sudden onset. However, I think many parents here, with pandas kids, did not have that. This may be a criteria imposed by doctors and researchers. Also, an initial episode could go undetected if it is mild. My daughter did have an overnight onset, but also gradually worsened. Really, no one knows enough about the mechanism to know...

 

If it is pandas, and your daughter has had it for a while, be prepared to do a longer term on the antibiotics. For us, we caught pandas (we think) 4 weeks after it bagan, first episode. She still needed a month of zithromax to see a dramatic improvement (this was after 2 wks cephalosporin, and 2 weeks amox). Time is also a factor.

 

Consider doing the "pandas test" by researching doctor Madeleine Cunningham.

 

Best,

 

Eileen

[momofgirls]

Thanks dcmom I will look into the cunningham test. I live in connecticut. Our psychiatrist is willing to try the antibiotics but isn't very experienced with PANDAS. She said she could refer us to a dr in new haven at yale but he is not an MD. If she doesn't improve with the ten days on Keflex she would rule out PANDAS. Would you guys agree? Or could it take longer for improvement with antibiotics?

 

Hi momofgirls,

 

I am sorry you are going through this.

 

Unfortunately so much of pandas is unknown. You need to find a great doctor- tell us where you live.

 

The "hallmark" of pandas, is sudden onset. However, I think many parents here, with pandas kids, did not have that. This may be a criteria imposed by doctors and researchers. Also, an initial episode could go undetected if it is mild. My daughter did have an overnight onset, but also gradually worsened. Really, no one knows enough about the mechanism to know...

 

If it is pandas, and your daughter has had it for a while, be prepared to do a longer term on the antibiotics. For us, we caught pandas (we think) 4 weeks after it bagan, first episode. She still needed a month of zithromax to see a dramatic improvement (this was after 2 wks cephalosporin, and 2 weeks amox). Time is also a factor.

 

Consider doing the "pandas test" by researching doctor Madeleine Cunningham.

 

Best,

 

Eileen

[monarchcat]

My son had only one "dramatic onset" episode (tic) which coincided directly with a strep episode at age 7 1/2, but I believe he had had PANDAS for 2 1/2 years prior, even though he hadn't had diagnosed strep. He had a major change in behavior/emotion/impulsivity right after his 5th birthday, but I don't remember any particular illness around that time. He began having tics (gradual onset of eye blinking) when he was six which waxed and waned over the following two years. At 7 1/2 he developed a dramatic, overnight new tic after being tic-free for several months. 2 days later he was diagnosed with a raging case of strep throat. That is the episode that got me started on my PANDAS "learning adventure". LOL.

 

He had another episode of strep a few months later, and while this one did not bring new tics, he did develop moderate separation anxiety and irrational fears about 2 weeks after antibiotics ended. He was on Amox for those two strep incidences. A couple months after that he had a severe sore throat which turned out NOT to be strep, but they agreed to start treatment before the results came back and put him on Omnicef for 10 days. I noticed no improvement after those ten days and believe that it would take a longer course of treatment to see results since it's possible that he has intracellular strep at this point. I will say that he had a fairly high exacerbation of tics during that illness (which WASN'T strep) but Dr. Cunningham told me that they believe that viruses can cause PANDAS kids to become symptomatic due to the blood-brain barrier being compromised.

 

I agree with the others that you may want to contact Dr. Cunningham's office and participate in her study. For me, having this information is so important for actually accepting that he has PANDAS since he's never been a "classic" case. I believe this is the closest thing we have to a PANDAS "test" especially for those of us who's PANDAS kids' cases aren't that clear-cut.

[Buster]

Hi Kim,

 

Was the strep isolated at the initial event (i.e., a culture). I ask because a cough is usually exclusionary to strep throat. However, you are right, some coughs and certainly sniffing and tongue clicks can be vocal tics.

 

You mentioned OCD symptoms, which ones did she have? How severe? Were they at the same time as the cough or just later during the kindergarten episode?

 

You mentioned Prozac -- how long was she on it -- I see she improved over 2 months while on Prozac but wasn't sure how long you kept her on the SSRI.

 

PANDAS is considered a sub-group of OCD and/or tics (meaning to have PANDAS your child would typically have a DSM-IV diagnosis of OCD or a diagnosis of a tic disorder). Since PANDAS is primarily defined by the onset and by the abrupt severity of episodic symptoms, this makes it more difficult to identify if there is not significant differences between convalescent state and exacerbation state. Changes of > 20pts in YGTSS or > 15 pts in CYBOCS scores are common for PANDAS kids.

 

In terms of treatments, our dd9 had remarkable improvement after 10 days of azithromcyin. Later, we found that her symptoms corresponded to her sister having strep (i.e., our dd9 was a canary for strep in our dd6). I mention this, because it is likely good to check the family for strep when trying to isolate the cause of an exacerbation. We have kept our daughter on propholactic antibiotics but it took having our psychiatrist, rheumatologist, letters from experts, ... to convince our pediatrician to overcome her reticence to antibiotics. In our case we did try several antibiotics because we frankly had no other explanation for the "demonic possession" of our child who was quiet literally incapacitated by OCD requiring hospitalization due to the severity of her condition.

 

Wishing you the best and hope you'll reply with more details,

 

Regards,

 

Buster

 

Hi everyone I don't know if my daughter now 6 has PANDAS. About 3 yrs ago she had strep and developed a cough. The strep was treated but the cough remained. Pediatrician checked her for allergies and a pulmonarty dr ruled out asthma. She coughed for 6 mos. Looking back I wonder if it were her first tic. After 6 mos the cough resolved on its own in the spring. The next fall the cough returned and lasted about 3 weeks again resolving on its own. The next spring she got sick not strep but an antibiotic was prescribed and about two weeks later she started ticcing ie sniffling and tongue clicking. This lasted most of the summer but resolved. First day of kinderg she had and explosion of tics and severe OCD symptoms. She was not sick but stressed perhaps with school starting. Psych prescribed prozac and she improved over the next couple of months but symptoms continued up and down all winter. Finally we saw a DAN dr and strep titers were checked all negative. Her symptoms have been up and down since but relatively mild. She is no longer on prozac. Our psych agreed recently to try a 10 day course of keflex. What should I expect? If pandas would she improve? If she doesn't improve can I ruld out pandas? I am at a loss so any thoughts would be appreciated. Kim

[T_Mom]

Hi MomofGirls--I am so sorry you are going through this--For us, it was up and down as to "what in the world was causing OCD and tics" ... until we saw our d respond (as in there was a noticeable decrease in symptoms that we could observe) when she was on Amoxicillan...One time it was within 48 hours.

 

Some of the best advice I have ever gotten was reading that we should consider a month of antibiotics--and Yes, then we saw a continuing elimination of symptoms. I truly hope the Keflex works for you. Amoxicillan worked for our d.

 

ps--Our d must have had undetected strep at some time prior to the first episode (which we thought was anorexia) -- she has had OCD and tics which go away with antibiotics or steroids. Cunningham results were high but we are one of those families that never had a pos. strep test to "show the doctor"!

[momofgirls]

Thanks buster so much for replying. I will look into the test. Can you guys give me an idea of fees for this type of test?

 

 

 

My son had only one "dramatic onset" episode (tic) which coincided directly with a strep episode at age 7 1/2, but I believe he had had PANDAS for 2 1/2 years prior, even though he hadn't had diagnosed strep. He had a major change in behavior/emotion/impulsivity right after his 5th birthday, but I don't remember any particular illness around that time. He began having tics (gradual onset of eye blinking) when he was six which waxed and waned over the following two years. At 7 1/2 he developed a dramatic, overnight new tic after being tic-free for several months. 2 days later he was diagnosed with a raging case of strep throat. That is the episode that got me started on my PANDAS "learning adventure". LOL.

 

He had another episode of strep a few months later, and while this one did not bring new tics, he did develop moderate separation anxiety and irrational fears about 2 weeks after antibiotics ended. He was on Amox for those two strep incidences. A couple months after that he had a severe sore throat which turned out NOT to be strep, but they agreed to start treatment before the results came back and put him on Omnicef for 10 days. I noticed no improvement after those ten days and believe that it would take a longer course of treatment to see results since it's possible that he has intracellular strep at this point. I will say that he had a fairly high exacerbation of tics during that illness (which WASN'T strep) but Dr. Cunningham told me that they believe that viruses can cause PANDAS kids to become symptomatic due to the blood-brain barrier being compromised.

 

I agree with the others that you may want to contact Dr. Cunningham's office and participate in her study. For me, having this information is so important for actually accepting that he has PANDAS since he's never been a "classic" case. I believe this is the closest thing we have to a PANDAS "test" especially for those of us who's PANDAS kids' cases aren't that clear-cut.

[momofgirls]

A huge thanks to everyone for responding. I am so overwhelmed and really appreciate you help especially since you all are struggling with you own children.

Hi MomofGirls--I am so sorry you are going through this--For us, it was up and down as to "what in the world was causing OCD and tics" ... until we saw our d respond (as in there was a noticeable decrease in symptoms that we could observe) when she was on Amoxicillan...One time it was within 48 hours.

 

Some of the best advice I have ever gotten was reading that we should consider a month of antibiotics--and Yes, then we saw a continuing elimination of symptoms. I truly hope the Keflex works for you. Amoxicillan worked for our d.

 

ps--Our d must have had undetected strep at some time prior to the first episode (which we thought was anorexia) -- she has had OCD and tics which go away with antibiotics or steroids. Cunningham results were high but we are one of those families that never had a pos. strep test to "show the doctor"!

[momofgirls]

Buster the first strep was verified by throat culture and was treated. But her cough never went away which is why I now understand that it may have been a tic. Since then she hasn't had strep that I know of so I don't know if she could be a pandas kid or just tourettes/OCD. Her OCD was sever about a year after that strep infection. So we did not see it right away. She was paranoid of windows doors people bathrooms and it was really wierd but the prozac did help over a couple of weeks. She is no longer on prozac and her OCD is mild.

 

Hi Kim,

 

Was the strep isolated at the initial event (i.e., a culture). I ask because a cough is usually exclusionary to strep throat. However, you are right, some coughs and certainly sniffing and tongue clicks can be vocal tics.

 

You mentioned OCD symptoms, which ones did she have? How severe? Were they at the same time as the cough or just later during the kindergarten episode?

 

You mentioned Prozac -- how long was she on it -- I see she improved over 2 months while on Prozac but wasn't sure how long you kept her on the SSRI.

 

PANDAS is considered a sub-group of OCD and/or tics (meaning to have PANDAS your child would typically have a DSM-IV diagnosis of OCD or a diagnosis of a tic disorder). Since PANDAS is primarily defined by the onset and by the abrupt severity of episodic symptoms, this makes it more difficult to identify if there is not significant differences between convalescent state and exacerbation state. Changes of > 20pts in YGTSS or > 15 pts in CYBOCS scores are common for PANDAS kids.

 

In terms of treatments, our dd9 had remarkable improvement after 10 days of azithromcyin. Later, we found that her symptoms corresponded to her sister having strep (i.e., our dd9 was a canary for strep in our dd6). I mention this, because it is likely good to check the family for strep when trying to isolate the cause of an exacerbation. We have kept our daughter on propholactic antibiotics but it took having our psychiatrist, rheumatologist, letters from experts, ... to convince our pediatrician to overcome her reticence to antibiotics. In our case we did try several antibiotics because we frankly had no other explanation for the "demonic possession" of our child who was quiet literally incapacitated by OCD requiring hospitalization due to the severity of her condition.

 

Wishing you the best and hope you'll reply with more details,

 

Regards,

 

Buster

 

Hi everyone I don't know if my daughter now 6 has PANDAS. About 3 yrs ago she had strep and developed a cough. The strep was treated but the cough remained. Pediatrician checked her for allergies and a pulmonarty dr ruled out asthma. She coughed for 6 mos. Looking back I wonder if it were her first tic. After 6 mos the cough resolved on its own in the spring. The next fall the cough returned and lasted about 3 weeks again resolving on its own. The next spring she got sick not strep but an antibiotic was prescribed and about two weeks later she started ticcing ie sniffling and tongue clicking. This lasted most of the summer but resolved. First day of kinderg she had and explosion of tics and severe OCD symptoms. She was not sick but stressed perhaps with school starting. Psych prescribed prozac and she improved over the next couple of months but symptoms continued up and down all winter. Finally we saw a DAN dr and strep titers were checked all negative. Her symptoms have been up and down since but relatively mild. She is no longer on prozac. Our psych agreed recently to try a 10 day course of keflex. What should I expect? If pandas would she improve? If she doesn't improve can I ruld out pandas? I am at a loss so any thoughts would be appreciated. Kim

[momofgirls]

Tmom, where are you in treatment? How are things now?

 

 

 

Hi MomofGirls--I am so sorry you are going through this--For us, it was up and down as to "what in the world was causing OCD and tics" ... until we saw our d respond (as in there was a noticeable decrease in symptoms that we could observe) when she was on Amoxicillan...One time it was within 48 hours.

 

Some of the best advice I have ever gotten was reading that we should consider a month of antibiotics--and Yes, then we saw a continuing elimination of symptoms. I truly hope the Keflex works for you. Amoxicillan worked for our d.

 

ps--Our d must have had undetected strep at some time prior to the first episode (which we thought was anorexia) -- she has had OCD and tics which go away with antibiotics or steroids. Cunningham results were high but we are one of those families that never had a pos. strep test to "show the doctor"!

[ShaesMom]

Thanks dcmom I will look into the cunningham test. I live in connecticut. Our psychiatrist is willing to try the antibiotics but isn't very experienced with PANDAS. She said she could refer us to a dr in new haven at yale but he is not an MD. If she doesn't improve with the ten days on Keflex she would rule out PANDAS. Would you guys agree? Or could it take longer for improvement with antibiotics?

 

 

Ten days is probably not enough to see an improvement. I would definitely request 30 days. Also, my daughter started on PenVK-we saw mild improvements. We then tried Keflex and saw some additional improvements. She is now on Eyrthromycin and we have seen the most improvements on this abx.

[T_Mom]

Tmom, where are you in treatment? How are things now?

 

 

Our d has been on full-strength Amoxicillan for 9 months and continues. She had a bad exacerbation (OCD and tics) last December and we could only "get" Amoxicillan at the time. So that is what we gave her and week to week we saw a steady improvement.

 

Slow and steady improvement for 3 months and then she seemed to plateau. She was about 85% herself and we tried a steroid burst to see if she would come back to 100%. She did. Last March, for the first time in over 5 months I saw my daughter again--I felt like all that time with her had been stolen from us.

 

Her personality came back, her academic abilities, even her mood was better. After the steroid burst her teacher called and said that for the first time all year they were seeing the child that we had been telling them about, it was April.

It had been a very bad year at school, many meetings. By the end of the year she was again getting A's and standardized testing indicated full potential again.

 

We had a few ups and downs this summer, but nothing like earlier.

During a mild exacerbation this summer (evident to only us and a perceptive doctor) she was having three to five compulsions a day and mild infrequent tics -- we had Cunningham's blood research done at that time and Cam Kinase was elevated (160.)

 

Three weeks later she was doing extremely well again--

As of yesterday, back at school and doing great...which means in her case: She said she felt only one compulsion to do something during the day, otherwise nothing to note, though I saw mild face-stretching or nose scrunching a few times in the car, which quite frankly concerns me, but overall we hope for the best, and continue the course--If it comes back we will continue upping the treatments to get rid of it.

All the best to all of our children.