My son could have PANDAS? Help!

[Dakri]

Hi! Where do I begin? My son was diagnosed at age 7 with tourette's - he is now 9. He also has ADHD and Anxiety. We started medicating the tics and anxiety in May 2009 and my son has been extremely stable and we rarely see tics. In October he got sick with a bad cough and fever for a couple of days and he has continued to cough for 8 weeks now. The pediatrician thinks maybe asthma causing the coughing but he never wheezes and has no trouble breathing ever. We have tried a couple of inhalers (albuterol and xoponex) over past few weeks and that was a NIGHTMARE beyond belief. It made his tics and anxiety go crazy and he was having panic attacks. I do think that the majority of the coughing going on now is a habit or a tic and not really related to asthma. It is so hard to figure this all out. I saw the news story about the girl with PANDA who sneezes nonstop and wondered if that could be what happened with my son. Maybe he had strep in October and we didn't know and that triggered the onset of way worse tics and this nonstop coughing????? He has tended to be the kid over the years who gets strep but never has a sore throat so perhaps he had strep in Oct and we missed it? Today we saw the psychiatrist and she increased the dosage of Tenex for the tics so we'll see if this improves things.

 

Any suggestions on how to determine if this is PANDAS? I don't know if to bring this up Fri (we have an asthma treatment follow up) with his pediatrician. We live in a small town in AZ and I have a feeling she probably knows nothing about this.

 

Is it possible that his tourette's could be caused by PANDAS? Although he was diagnosed at age 7, we can look back to age 3 and see that he had tics throughout the years and they just weren't frequent enough to know it was anything more than bad habits at the time.

 

I would love any advice or direction!

 

THank you so very much.

Dakri

[Suzan]

Hi! Where do I begin? My son was diagnosed at age 7 with tourette's - he is now 9. He also has ADHD and Anxiety. We started medicating the tics and anxiety in May 2009 and my son has been extremely stable and we rarely see tics. In October he got sick with a bad cough and fever for a couple of days and he has continued to cough for 8 weeks now. The pediatrician thinks maybe asthma causing the coughing but he never wheezes and has no trouble breathing ever. We have tried a couple of inhalers (albuterol and xoponex) over past few weeks and that was a NIGHTMARE beyond belief. It made his tics and anxiety go crazy and he was having panic attacks. I do think that the majority of the coughing going on now is a habit or a tic and not really related to asthma. It is so hard to figure this all out. I saw the news story about the girl with PANDA who sneezes nonstop and wondered if that could be what happened with my son. Maybe he had strep in October and we didn't know and that triggered the onset of way worse tics and this nonstop coughing????? He has tended to be the kid over the years who gets strep but never has a sore throat so perhaps he had strep in Oct and we missed it? Today we saw the psychiatrist and she increased the dosage of Tenex for the tics so we'll see if this improves things.

 

Any suggestions on how to determine if this is PANDAS? I don't know if to bring this up Fri (we have an asthma treatment follow up) with his pediatrician. We live in a small town in AZ and I have a feeling she probably knows nothing about this.

 

Is it possible that his tourette's could be caused by PANDAS? Although he was diagnosed at age 7, we can look back to age 3 and see that he had tics throughout the years and they just weren't frequent enough to know it was anything more than bad habits at the time.

 

I would love any advice or direction!

 

THank you so very much.

Dakri

 

Hello and welcome. Tourettes, tics, adhd, anxiety... all things we see here related to PANDAS. Have you noticed whether his symptoms get better while he is being treated for anything with antibiotics? Many PANDAS kids don't have typical strep symptoms so I'd see this as a flag too. Would your doctor be willing to do a trial of antibiotics to see if it would clear up the cough and in that way have a test to see if other things improved?

 

Does he have any other symptoms, OCS type behavior? Good luck to you guys. I'm sure there will be others posting here with much more helpful info for you. Maybe there is a doc within driving distance to you who knows about PANDAS.

 

Susan

[peglem]

I think it will be harder to see if medication is masking symptoms, although we have tried many meds with my daughter and exacerbations still made things worse. I would suggest when you see tics waxing to get him swabbed for a strep culture. Even if that comes back negative, see if you get a reduction with a course of antibiotics. That's what I'd recommend for starters.

[Dakri]

Hi! Where do I begin? My son was diagnosed at age 7 with tourette's - he is now 9. He also has ADHD and Anxiety. We started medicating the tics and anxiety in May 2009 and my son has been extremely stable and we rarely see tics. In October he got sick with a bad cough and fever for a couple of days and he has continued to cough for 8 weeks now. The pediatrician thinks maybe asthma causing the coughing but he never wheezes and has no trouble breathing ever. We have tried a couple of inhalers (albuterol and xoponex) over past few weeks and that was a NIGHTMARE beyond belief. It made his tics and anxiety go crazy and he was having panic attacks. I do think that the majority of the coughing going on now is a habit or a tic and not really related to asthma. It is so hard to figure this all out. I saw the news story about the girl with PANDA who sneezes nonstop and wondered if that could be what happened with my son. Maybe he had strep in October and we didn't know and that triggered the onset of way worse tics and this nonstop coughing????? He has tended to be the kid over the years who gets strep but never has a sore throat so perhaps he had strep in Oct and we missed it? Today we saw the psychiatrist and she increased the dosage of Tenex for the tics so we'll see if this improves things.

 

Any suggestions on how to determine if this is PANDAS? I don't know if to bring this up Fri (we have an asthma treatment follow up) with his pediatrician. We live in a small town in AZ and I have a feeling she probably knows nothing about this.

 

Is it possible that his tourette's could be caused by PANDAS? Although he was diagnosed at age 7, we can look back to age 3 and see that he had tics throughout the years and they just weren't frequent enough to know it was anything more than bad habits at the time.

 

I would love any advice or direction!

 

THank you so very much.

Dakri

 

Hello and welcome. Tourettes, tics, adhd, anxiety... all things we see here related to PANDAS. Have you noticed whether his symptoms get better while he is being treated for anything with antibiotics? Many PANDAS kids don't have typical strep symptoms so I'd see this as a flag too. Would your doctor be willing to do a trial of antibiotics to see if it would clear up the cough and in that way have a test to see if other things improved?

 

Does he have any other symptoms, OCS type behavior? Good luck to you guys. I'm sure there will be others posting here with much more helpful info for you. Maybe there is a doc within driving distance to you who knows about PANDAS.

 

Susan

Thank you for your quick reply, Susan! Josh has had OCD type behavior since he was in preschool - so for like 6 years. His drs have not officially labeled him OCD but they always note on the chart "OCD like tendencies". He has been obsessed with Pokemon for 5 years and now is very much obsessing over hockey. He doesn't do any of the typical OCD things like hand washing or counting things though.

 

I can't say I have noticed the symptoms clearing up with he has been on antibiotics. Maybe I just haven't noticed - not too observant I guess.

 

How would I go about finding a dr who is knowledgeable on PANDAS? We are 2 hours from Phoenix so I imagine there has to be someone down there. Is there a list some where?

 

thank you!

Dakri

[thereishope]

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Edited October 18, 2016 by vickie

[Suzan]

I can't say I have noticed the symptoms clearing up with he has been on antibiotics. Maybe I just haven't noticed - not too observant I guess.

 

How would I go about finding a dr who is knowledgeable on PANDAS? We are 2 hours from Phoenix so I imagine there has to be someone down there. Is there a list some where?

 

thank you!

Dakri

 

Here's a link to a post where people were adding their doctors. You could look there and see...

 

http://www.latitudes.org/forums/index.php?...;hl=doctor+list

 

Also, I thought I would mention, before I learned about PANdAS earlier this year, I knew nothing of what to look for and I never paid any attention to whether antiboitics made symptoms go away. I just figured, they must be feeling better, not sick any more, you know?!

 

Susan

[Dakri]

Have you taken him for a strep test since you began to wonder about PANDAS?

No, just really started learning about PANDAS this week. I am hoping when we see the pediatrician on Friday that she will work with me no this and do a strep test for starters.

[Dakri]

I think it will be harder to see if medication is masking symptoms, although we have tried many meds with my daughter and exacerbations still made things worse. I would suggest when you see tics waxing to get him swabbed for a strep culture. Even if that comes back negative, see if you get a reduction with a course of antibiotics. That's what I'd recommend for starters.

Thank you! His tics have been CRAZY for 8 weeks so I'm hoping the pediatrician will do the strep culture. We have an appt on Friday. Gosh there is a little hope inside of me that maybe this has been the cause of anxiety/tics all along for years perhaps. So interesting.

[thereishope]

.

Edited October 18, 2016 by vickie

[Dakri]

Don't ask if they'll do a strep test, TELL them you want one.

 

I think it will be harder to see if medication is masking symptoms, although we have tried many meds with my daughter and exacerbations still made things worse. I would suggest when you see tics waxing to get him swabbed for a strep culture. Even if that comes back negative, see if you get a reduction with a course of antibiotics. That's what I'd recommend for starters.

Thank you! His tics have been CRAZY for 8 weeks so I'm hoping the pediatrician will do the strep culture. We have an appt on Friday. Gosh there is a little hope inside of me that maybe this has been the cause of anxiety/tics all along for years perhaps. So interesting.

GOTCHA! I completely agree with being very proactive bordering on pushy with the drs. They are so passive when it comes to most things. So with the strep test it will be either positive or negative, right? And if postive, we may be dealing with PANDAS. From what I read, even if it is negative, it could still be PANDAS. What is the next step if it is Neg?

[peglem]

Don't ask if they'll do a strep test, TELL them you want one.

 

I think it will be harder to see if medication is masking symptoms, although we have tried many meds with my daughter and exacerbations still made things worse. I would suggest when you see tics waxing to get him swabbed for a strep culture. Even if that comes back negative, see if you get a reduction with a course of antibiotics. That's what I'd recommend for starters.

Thank you! His tics have been CRAZY for 8 weeks so I'm hoping the pediatrician will do the strep culture. We have an appt on Friday. Gosh there is a little hope inside of me that maybe this has been the cause of anxiety/tics all along for years perhaps. So interesting.

GOTCHA! I completely agree with being very proactive bordering on pushy with the drs. They are so passive when it comes to most things. So with the strep test it will be either positive or negative, right? And if postive, we may be dealing with PANDAS. From what I read, even if it is negative, it could still be PANDAS. What is the next step if it is Neg?

 

If the doctor is willing, try the abx anyway- full strength augmentin or full strength Zithromax. Also, try round the clock ibuprofen- it reduces inflammation and can sometimes help.

[T_Mom]

Dakri-- I am sorry you have had to find your way to this forum but glad you did, and hope it will benefit you as it has our family.

 

Our d had very bad OCD and accompanying mild ticcing--facial stretches, etc. She never tested positively for strep of any type--We believe this is because she may have had it previously, undetected at some point in time, and subsequently every illness that triggers inflammation triggers Pandas reaction inflammation.

 

At her worst exacerbation an MRI showed she had sinusitis -- and we treated it with antibiotics, she also had a short 5 day strong steroid burst according to Dr. K's protocol (www.webpediatrics.com) He will consult on the phone, well worth it in our case certainly--Very helpful.

 

Anyway, if I were you I would essentially beg the doctor to TRY antibiotics for a month. In our case it made our child essentially 95% well again-- IF it works, you will know, no doubt.

All the best--

[peglem]

Aye yai, yai! Can't believe we forgot to mention the "Cunningham test":

 

There is a doctor at the University of Okalahoma immunology lab who has been working on finding biological markers for Sydenham's chorea and PANDAS. It's only a study and they will not be testing anymore blood samples until the middle of January (I think mid Jan.), but she seems to be on to something and many here have gotten some guidanance from the results of that test, along with clinical presentation. The results of this test, and talking to Dr. Cunningham on the phone is what finally convinced my child's pediatrician that my daughter did have PANDAS and that there was more that can be done to treat it. He has since identified 2 other of his patients who have PANDAS as well. AND he's thrilled to the gills to be able to help these kids that he wasn't sure what to do about before.

[EAMom]

At her worst exacerbation an MRI showed she had sinusitis -- and we treated it with antibiotics, she also had a short 5 day strong steroid burst according to Dr. K's protocol (www.webpediatrics.com) He will consult on the phone, well worth it in our case certainly--Very helpful.

 

Strep can hide out in the sinuses. The same thing happened to Diana P.'s son....neg throat cultures, sinusitis on MRI, responded to daily Azith./Advil and later IVIG.

[EAMom]

Have you taken him for a strep test since you began to wonder about PANDAS?

No, just really started learning about PANDAS this week. I am hoping when we see the pediatrician on Friday that she will work with me no this and do a strep test for starters.

 

Do a 72 hour culture if the rapid is negative.