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

[Thinkandreceive]

This is our story and it began fall of 2010. My healthy baby boy who was a happy go lucky kid became sick with a thick green runny nose. Although he had suffered from ear infections quite frequently prior to this he never had any health issues. Unfortunately he was on anti biotics for this runny nose and it didn't help. So, a month later he went on more anti biotics, and it STILL didn't help. Meanwhile he became more and more aggressive, and very hard to please. He would search for butter knives in the silverware drawer and would carry it around all day. He would wake the next morning and look for the RIGHT knife again. Eating yogurt he would switch hands repeatedly as if he had a system. He became more and more tactile defensive. He was then put on more anti biotics for the runny nose, and then topped with another ear infection.

 

Frustrated with this infection and it not going away he was on MORE antibiotics and then we decided to get tubes placed. Bad idea. The tubes were placed in the beginning of january. So, this runny nose had been going on for 4 months at this point. After the tubes were placed his anxiety increased DRAMATICALLY. He now to this day cries when our dogs bark and is afraid of people he used to love. After the tubes were placed the runny nose stuck around. I had a culture done (although I don't know why this wasn't don't MONTHS ago) and it came back as streptococcus phneomnia (sp). I do know that it is resistant to everything except penicillin although he was on azithromycin but was a 5 day treatment. I am suspecting he has had the strep. Infection though from the get go, and has had it for what would now be about 10 months. In the last 10 months his behavior has gotten so out of hand. He run by people and hits them, he jumps off of high places in the house, he crashes into things, he just has no impulse control. I know he is a boy, but this is far beyond that. I also noticed lately if someone is around that he is not sure of (even though those people are people we may see everyday) he will swing his head from side to side, as if he doesn't know where to look, but doesn't want to look at them...make sense? I need to video tape it.

 

I have seen his behavior go up and down and up a down. Also, he is still young, and also a late talker, so it's not like I can get info out of him other then the physical evidence. Ex. Bowels nose, behavior. We have had our first visit with a DAN doctor that we love but at the time of the visit I had no idea about PANDAS. I will definitely be bringing this up in 2 weeks. He is currently on a GFCFSF diet and we have seen huge improvements with his speech, and bowels, but not so much the ocd, and sensory behaviors. I would love some feedback and thoughts. Also if anyone knows any really good dr.s that are on the insurance plan and actually take pandas into consideration, in the michigan area I would be more then grateful for the information you can share.

 

Also, I know the age range for pandas is technically 3 yrs + but could it be possible for a toddler? I only started reading about pandas a few days ago after reading book about healing and preventing autism, and of course this was one of the last chapters! I am glad I kept reading anyway, whether it is the case for my son or not. I hope one day maybe I can lead someone in the right direction, and rule in or out for my son.

[LNN]

First, congratulations on being so persistent and observant. Many of us wish we'd known about Pandas as early as you (tho I know that to you, it feels like it took way to long to hear the word). It's hard to tell from your story which antibiotics you've tried and for how long. So it may still be a matter of finding the right abx (or a combo of two abx) for the right length of time (perhaps a month or more). The other thing you may want to look into is something called MARCoNs (multiple antibiotic resistant coagulase negative staphylococci) which is discussed often by Dr Ritchie Shoemaker (www.survivingmold.com). I'm no expert on it, but it's something that came to mind when I read your post.

 

Ironically, we were watching old movies tonight from when my son was 2.5 (he's almost 9 now). And I was struck by how different he was before he got sick with Pitands/lyme/strep. I kept my "OMG" feelings inside and then my husband said aloud "wow! he was so....normal back then!". It sounds like a cruel thing to say, but it actually made me feel validated - that he saw it too, then I wasn't kidding myself that the "real" kid is inside and who we see now isn't quite how he should be. He was so clear thinking, so focused, so...obviously bright in so many ways. So yes, the illness your son has experienced can be causing changes and you're probably not imagining it. And it's not a "phase". Keep fighting and trusting your instincts.

[Thinkandreceive]

Thanks so much for your response. I just googled dr. Shoemaker and will read what he has to say. This is all so new to me and boggles my mind what can happen to healthy happy kids with just one infection. How is your son now? How did you find out he had Lymes also? That had never crossed my mind nor would have if i hadn't seen it related with the PANDAS just today. Thanks again for your feedback!

[nicklemama]

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.

[Ozimum]

Hi there,

 

Welcome to the forum.

 

I'm a fan of DAN!s (my son's DAN! is my no. 1 hero!) so I would definitely talk to yours about PANDAS - a good DAN! should know the protocols.

 

I'm assuming your DAN! has ordered some tests for vit/mineral levels and stools etc? Those results can often be quite illuminating and will determine how to proceed. Getting the immune system back on track will take time but it's worth it! For us we saw slow but steady progress over some months, and DS17 is much happier and healthier for the diet (and so are we!) and supplements (including probiotics, omegas), as well as less anxious, less OCD, etc.

 

Hang in there.

 

Edit for typos...

Edited June 24, 2011 by Ozimum

[Thinkandreceive]

Hi there,

 

Welcome to the forum.

 

I'm a fan of DAN!s (my son's DAN! is my no. 1 hero!) so I would definitely talk to yours about PANDAS - a good DAN! should know the protocols.

 

I'm assuming your DAN! has ordered some tests for vit/mineral levels and stools etc? Those results can often be quite illuminating and will determine how to proceed. Getting the immune system back on track will take time but it's worth it! For us we saw slow but steady progress over some months, and DS17 is much happier and healthier for the diet (and so are we!) and supplements (including probiotics, omegas), as well as less anxious, less OCD, etc.

 

Hang in there.

 

Edit for typos...

 

Our DAN dr did order test. We will find out results in a few weeks. Also he is taking probiotics, omegas, and gab a which all have seemed to help a lot! Looking forward to more progress!

[Thinkandreceive]

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.

[kimballot]

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!

[Ozimum]

I don't know anything about Dr Chugani but I did come across the following from the PANDAS Network:

http://pandasnetwork.org/strep-controversy/encephalopothy/

 

Possible Test for P.A.N.D.A.S. – Looking at the Basal Ganglia?

Basal Ganglia Imaging Study by Dr. Harry Chugani

 

The rogue white blood cells that cause P.A.N.D.A.S. affect the basil ganglia of the brain. The basil ganglia are several brain structures located in the center of the brain. They function as a communication route to other parts of the brain and are partly responsible for the movement of our body. Other parts of the basal ganglia are involved in memorization, cognitive and emotional processing, and again initiating movement. There is still much to be learned about how this part of our brain functions. It is theorized that P.A.N.D.A.S. causes an inflammation of the basil ganglia. A 1999 study by Ranjit C. Chacko, M.D. showed a connection between OCD and the basil ganglia.

 

Now, Dr. Harry Chugani at Children’s Hospital of Michigan, is studying the potential use of PET scans as diagnostic tools for P.A.N.D.A.S. Dr Chugani states that the basal ganglia are not hard to detect on an MRI scan. In fact, the basil ganglia are large structures. However, the MRI scan is not useful for detection of abnormal microscopic, neurological functioning in the basal ganglia because MRI scans look at anatomy, i.e., tissue density and damage, water displacement, inflammation of tissue (and not the neurological function of this part of the brain). PET scans, or Positron Emission Tomography scans, may be used instead of, or in addition to, magnetic resonance imaging (MRI) scans. This gives anatomic andfunctional information.

 

The PET scan works by using PK-11195, a radioactive material, to target the inflammatory cells of the brain. This chemical is attracted to inflammatory cells and gives information on how the basil ganglia are functioning. Some of the PET scans on P.A.N.D.A.S. children are identifying inflammation in the basal ganglia. This may be useful as the long awaited confirmation of P.A.N.D.A.S. that parents have sought.

 

Dr Chugani said, “By finding PET scan evidence of abnormality in the basal ganglia, we may now have a biomarker for P.A.N.D.A.S. Indeed, following IVIG in some P.A.N.D.A.S. subjects, the abnormality in basal ganglia has gone away on repeated PET scan. These studies are rather preliminary, on a limited number of subjects, and much more work needs to be done.”

[LNN]

Thanks so much for your response. I just googled dr. Shoemaker and will read what he has to say. This is all so new to me and boggles my mind what can happen to healthy happy kids with just one infection. How is your son now? How did you find out he had Lymes also? That had never crossed my mind nor would have if i hadn't seen it related with the PANDAS just today. Thanks again for your feedback!

 

How I found out about lyme is a very long story. But the short answer is that lyme became a hot topic of conversation on the forum and when my son didn't stay well by using a Pandas treatment protocol (he'd get well, then backslide even without new strep), we had to turn over additional stones. Would love to tell you that that was the end of the story, but I'm still on the forum, so that's a hint as to how my son is doing. Once the immune system goes rogue, it gets complicated - and expensive - to get things back on track. Our lyme doctor said the other day that while lyme is often called the "great imitator" because symptoms resemble so many other diseases, but he also thinks it's the great instigator, that it can trigger a cascade of events after getting into the body. So we continue to peel the onion and address issues. Not to discourage you - I can say my son is way, way better than he was when first got sick 3 yrs ago. We're just not at the finish line yet. There's no single path to wellness. Some kids find a protocol that works right away. Others are more complex. The good news is that you've made the connection between infection and behavior much faster than some of us and that bodes well.

[airial95]

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!

[beeskneesmommy]

This is our story and it began fall of 2010. My healthy baby boy who was a happy go lucky kid became sick with a thick green runny nose. Although he had suffered from ear infections quite frequently prior to this he never had any health issues. Unfortunately he was on anti biotics for this runny nose and it didn't help. So, a month later he went on more anti biotics, and it STILL didn't help. Meanwhile he became more and more aggressive, and very hard to please. He would search for butter knives in the silverware drawer and would carry it around all day. He would wake the next morning and look for the RIGHT knife again. Eating yogurt he would switch hands repeatedly as if he had a system. He became more and more tactile defensive. He was then put on more anti biotics for the runny nose, and then topped with another ear infection.

 

Frustrated with this infection and it not going away he was on MORE antibiotics and then we decided to get tubes placed. Bad idea. The tubes were placed in the beginning of january. So, this runny nose had been going on for 4 months at this point. After the tubes were placed his anxiety increased DRAMATICALLY. He now to this day cries when our dogs bark and is afraid of people he used to love. After the tubes were placed the runny nose stuck around. I had a culture done (although I don't know why this wasn't don't MONTHS ago) and it came back as streptococcus phneomnia (sp). I do know that it is resistant to everything except penicillin although he was on azithromycin but was a 5 day treatment. I am suspecting he has had the strep. Infection though from the get go, and has had it for what would now be about 10 months. In the last 10 months his behavior has gotten so out of hand. He run by people and hits them, he jumps off of high places in the house, he crashes into things, he just has no impulse control. I know he is a boy, but this is far beyond that. I also noticed lately if someone is around that he is not sure of (even though those people are people we may see everyday) he will swing his head from side to side, as if he doesn't know where to look, but doesn't want to look at them...make sense? I need to video tape it.

 

I have seen his behavior go up and down and up a down. Also, he is still young, and also a late talker, so it's not like I can get info out of him other then the physical evidence. Ex. Bowels nose, behavior. We have had our first visit with a DAN doctor that we love but at the time of the visit I had no idea about PANDAS. I will definitely be bringing this up in 2 weeks. He is currently on a GFCFSF diet and we have seen huge improvements with his speech, and bowels, but not so much the ocd, and sensory behaviors. I would love some feedback and thoughts. Also if anyone knows any really good dr.s that are on the insurance plan and actually take pandas into consideration, in the michigan area I would be more then grateful for the information you can share.

 

Also, I know the age range for pandas is technically 3 yrs + but could it be possible for a toddler? I only started reading about pandas a few days ago after reading book about healing and preventing autism, and of course this was one of the last chapters! I am glad I kept reading anyway, whether it is the case for my son or not. I hope one day maybe I can lead someone in the right direction, and rule in or out for my son.

[beeskneesmommy]

YES, it IS possible to have PANDAS as a toddler. My son was diagnosed at 2.5, but I suspect that it started much earlier as he had had multiple fevers/sore throats and no doc ever did a Strep test prior to 2.5. The key for us was that every time he got sick, the behavior would change, then he show + on a Strep test followed by antibiotics that virtually cleared away all PANDAS symptoms until he got Strep again. This process occurred about 10 times prior to getting a T&A last Fall. HOWEVER, the Pediatricians only treated the Strep with a typical 10 day run of meds, rather than treat the PANDAS. As a result, he had a major episode last Fall which prompted us to seek help from a PANDAS doc. PANDAS is confirmed and we have been on a roller coaster, but overall, he has improved and is able to lead a normal like with preschool, etc.

 

You should definitely bring it up with the DAN, but it concerns me that he/she did not explore it as a psossibility with you already. Maybe you should start to get in with a PANDAS doc right away, as they can take a couple of months to see you sometimes. What state do you live in?

 

Good for you for being on the ball - it's really hard but you are persistent and you will hopefully get some answers soon!

 

Kath

[Mary M]

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.

 

 

Dr Harry Chugani, MD is a Ped Neuro who has an excellent reputation in the care and treatment of children with seizures as well as Tourette's/tic/movement disorders. He stumbled upon PANDAS while using his special PK PET Scan while researching Tourette's. He discerned a different type of "activation" on the scan that has allowed him to now explore PANDAS with PET Scan imaging. He is new to PANDAS but seems to be working very hard to learn about it from the PANDAS experts.

 

Dr Diane Chugani, PhD also at Childrens- specializes in autism.

 

We took our dd for the PET Scan-PM me if you want more info.

Mary

from Michigan

Edited June 24, 2011 by Mary M

[nicklemama]

Dr Chugani is doing PET scans on kids suspected of PANDAS. Its a long wait for an appt but I think its worth it to make an appt and see how it goes. He's a neurologist at Childrens. My son has not seen him. After 1.5yrs w/ PANDAS, 1yr undiagnosed, I chose not to wait for the appt and my DS had IVIG in Chigago w/ Dr K.