Is suspecting PANDAS....please help shed light.

[Thinkandreceive]

Welcome to the forum!

 

Your son is similar to my son in many ways. My son is now 14 but we started seeing PANDAS symptoms when he was a toddler after he had his adenoids out. He had chronic sinus infections for many years - until he had his tonsils out at age 7 - and he lived on antibiotics the entire time. His behavior was always unmanageable on low dose antibiotics but improved greatly on high dose.

 

The strep pneumoniae that was in your son's nose is a common cause of sinus infections. It is not the same thing as the strep that PANDAS was named for - that is Group A Beta Hemolytic Strep (GABHS).

 

Many doctors mistakenly think that kids cannot have PANDAS if they do not have a GABHS infection in their throat (strep throat) or if they do not have elevated antibodies to GABHS (ASO and DNASEb titers).

 

Many of our children have neuropsychiatric symptoms with ANY infection - not just strep throat, and sinus infections are one common trigger for exacerbations in our kids.

 

I would recommend you have a good ENT workup and check for sinus infections. I would also recommend a good immunology work up. At his age, you may not find any problems (they all have lousy immune systems at 2 1/2), but at least it will give you some baseline information that may become important in the future. Also, the immunologist and ENT may want to give your son a vaccination to raise his antibodies to fight strep pneumoniae. Prevnar is commonly used for children now (your son may have already had this), but some get the pneumovax. You should talk with your DAN doctor about this before having the vaccine.

 

Best wishes - I look forward to reading your posts!

 

Thanks so much! I was wondering if he maybe got PANDAS from the ear tube surgery, or if that increased it. I was reading how another child that his DAN! DR. treated had gotten PANDAS after a tonsillectomy. This week was a really tough week behavior wise. I don't know if it was because he started school (although only for 2 weeks) and maybe picked something up there, but also I just found out this morning that the antibiotics I had JUST started him on a week ago has 750 million strains of the strepp. in it. Which I don't now if that triggered anything but I only checked that because of a blog i read that said her daughter and other kids have been shown to react from antibiotics and some yogurts that have it in that. Also, I am holding off from vaccines for a while...he has not had that vaccine though but that is GREAT to know! I will steer clear of that until I have definite answers!

[Thinkandreceive]

Welcome to the forum!

 

Your son is similar to my son in many ways. My son is now 14 but we started seeing PANDAS symptoms when he was a toddler after he had his adenoids out. He had chronic sinus infections for many years - until he had his tonsils out at age 7 - and he lived on antibiotics the entire time. His behavior was always unmanageable on low dose antibiotics but improved greatly on high dose.

 

The strep pneumoniae that was in your son's nose is a common cause of sinus infections. It is not the same thing as the strep that PANDAS was named for - that is Group A Beta Hemolytic Strep (GABHS).

 

Many doctors mistakenly think that kids cannot have PANDAS if they do not have a GABHS infection in their throat (strep throat) or if they do not have elevated antibodies to GABHS (ASO and DNASEb titers).

 

Many of our children have neuropsychiatric symptoms with ANY infection - not just strep throat, and sinus infections are one common trigger for exacerbations in our kids.

 

I would recommend you have a good ENT workup and check for sinus infections. I would also recommend a good immunology work up. At his age, you may not find any problems (they all have lousy immune systems at 2 1/2), but at least it will give you some baseline information that may become important in the future. Also, the immunologist and ENT may want to give your son a vaccination to raise his antibodies to fight strep pneumoniae. Prevnar is commonly used for children now (your son may have already had this), but some get the pneumovax. You should talk with your DAN doctor about this before having the vaccine.

 

Best wishes - I look forward to reading your posts!

 

Thanks so much! I was wondering if he maybe got PANDAS from the ear tube surgery, or if that increased it. I was reading how another child that his DAN! DR. treated had gotten PANDAS after a tonsillectomy. This week was a really tough week behavior wise. I don't know if it was because he started school (although only for 2 weeks) and maybe picked something up there, but also I just found out this morning that the antibiotics I had JUST started him on a week ago has 750 million strains of the strepp. in it. Which I don't now if that triggered anything but I only checked that because of a blog i read that said her daughter and other kids have been shown to react from antibiotics and some yogurts that have it in that. Also, I am holding off from vaccines for a while...he has not had that vaccine though but that is GREAT to know! I will steer clear of that until I have definite answers!

[Thinkandreceive]

This is just all so interesting to me and opens my eyes to more and more clues that are there or I have missed along the way. I must say that when he was 9 months old was when he got his first infection, and i remember thinking how much had changed with just the one. Although it went away with antibiotics, they always came back more and more often and with more vengeance. Always hard to get rid of and always changed his behavior. I will keep updating on what we find out and what is going on. Thank you all for taking the time to help me get a better understanding of all this. My best wishes to you and your families who are struggling to keep your kids healthy, and happy!

[beeskneesmommy]

I also suggest that you check out Dr. K's website: http://webpediatrics.com/pandas.html He is in Il., not too far as the doc trek goes (we go from NC to Philly every 6-8 wks.), although he does not take insurance. However, the Site is helpful in identifying symptoms and providing a lot of info when you are new to the situation. Good luck & take care!

[Thinkandreceive]

My son was 20 months at onset and 26 months at dx. His case was confirmed by Dr Murphy (one of the PANDAs experts) at around 32 months...all before 3. Dr Murphy has written a case study on my sons onset at such a young age - don't know when/where it will publish though. So the answer you're looking for is. - absolutely YES it can happen as a toddler. I think the reason it's often missed is because many of the symptoms can be age appropriate for toddlers, so many folks think it's just the "terrible twos". I know we did at first - but eventually you just know something else is off.

 

We've been on and off abx for 15 out of 18 months, and there has been around 9or 10 strep infections during that time. We've gotten to the point where we manage well, he's mostly normal unless there's an infection, but the residual OCD is still there. We work with a therapist, and when he's healthy it works great, when he's sick, not so much. He's going to be 4 in the fall and we already got him an IEP for school (can be done at 3) and he attended a special Ed preschool most of the year last year that worked wonders for him, since many of his issues were at school.

 

PM me if you'd like to chat in more detail, but catching it early has really been a blessing for us!

 

Sorry i'm new to this, what is DX? Can you confirm PANDAS if you are not experiencing the typical symptoms? For instance, if my son were to undergo a month of an-bio and helped his symptoms, and then went for a confirmation with a PANDAS DR. a month after that, could they detect it? I have had so many people talk me out of this months before saying he is a boy and its his age, but now I think they are realizing what I realized a while ago and talked myself out of. Mothers intuition is there for a reason i do believe. I know he isn't autistic although his behaviors resemble an autistic child. Everyone would tell me how he isn't autistic, which I KNEW but I also knew this was NOT my kid! I knew SOMETHING had happened to him! Thanks for sharing your story with me!

[airial95]

When dr Murphy confirmed, we were on month 8 of abx, and our symptoms were massively reduced. She was able to confirm with a combination of history, medical records and our symptom tracking we were doing. (that was super helpful...I can send you my spreadsheets if you PM me).

 

Also, no one has mentioned here yet, but ibuprofen can reduce symptoms significantly when they flare. It's our magic pill. It reduces the inflammation in the blood brain barrier which is part of why causes problems in pandas kids. It might give you some temporary relief when you need it

[thereishope]

Dr Chugani was written up in this last newsletter

http://myemail.constantcontact.com/New-Studies---Exciting-Accouncements-from-pandasnetwork-org.html?soid=1103470649803&aid=SjHt1ahkGDg#LETTER.BLOCK12

 

 

edit...I now see others answered your question. Sorry...replied before reading all responses.

 

We have a small PANDAS message board for Michigan. I'll pm you w/ the info. Unfortunately, there are not a lot of PANDAS knowledgable docs in MI.

 

Have you heard of dr. Chugani at children's hospital? Was Going to try and book an appt. Was wondering if you've heard anything about him. I read about him on another message board but no one really mentioned if how good he was, although he is the chief so I'm assuming/hoping he knows his stuff. Although you never know anymore.

Edited June 24, 2011 by Vickie