Is this PANDAS?

[JulieMc]

Hi everyone, I am a new member. My son (now 6) was diagnosed with Asperger's just less than a year ago and before that with sensory processing disorder. He had speech delay at age 2 that responded quickly to speech therapy. He has had positive strep infections at least twice in the last year. He recently (3 weeks ago) had his tonsils and adenoids out and tested positive for Strep when they cultured his tonsils during surgery. Although we had treated him for strep after a positive throat culture and it had been treated with antibiotics. He still had it at the time of surgery. They also did ASO test and that was a 91. His DNASE B was 245 (High according to the lab). We have been seeing a neuroimmunologist since last June and he was responding very well to the protocol of antivirals, methyl B-12, and so forth. His meltdowns completely stopped, his echolalia went away almost completely, his social skills improved. Then when he got this last round of strep, his echolalia went through the roof and he is having some stimming, both verbal and physical. He was on 10 days of cefdinir after the surgery but it was mainly to prevent infection after the surgery. And he's never responded to cefdinir anyway. I treid to tell the doctors that but they don't seem to care. After talking to his neuroimmunologist about the increase in his echolalia and such with the strep throat, she recommended starting a one month round of azythromycin to screen for PANDAS. HOWEVER, he is only taking it every other day, 200 mg/5ml. He is getting 5ml per dosage. We are only on the 3rd dosage of it. We are also taking diflucan/fluconazole to help combat yeast.

 

So, I'm reading about PANDAS and while he seems to fit the symptoms for increased hyperactivity, compulsions (echolalia), and sensory issues, his anxiety has not drastically increased. He has always had a certain level of anxiety but it's not obsessive and hasn't increased really. His anxiety comes around anything that changes or is new in his schedule or environment. His aggression stopped with the antivirals and methyl B-12 and hasn't returned. Although I will say that he has been more defiant which is really unlike him.

 

So, I guess my question is, does this sound like PANDAS and if so, should I ask for an increase in the antibiotics? It doesn't seem like enough according to what I've been reading. We've been on Custom Probiotics for awhile and I give him a strain of S. Boulardes as well.

 

This is all so confusing and overwhelming. Sigh...I thought I had his stuff under control because I have studied Asperger's so well. Now, I'm wondering, does he really have Asperger's or is it PANDAS?

 

Julie

[peglem]

His anxiety comes around anything that changes or is new in his schedule or environment. His aggression stopped with the antivirals and methyl B-12 and hasn't returned. Although I will say that he has been more defiant which is really unlike him.

 

Fixation on schedule may be OCD related. Also, what looks like defiance (oppositional behaviors) often stems from the child "obeying" obsessions/compulsions that are more powerful than the need to obey and follow rules, even if he really wants to do the right thing.

[Phasmid]

Well, it sure sounds like it especially with confirmed strep problem. The echolalia can be part of it- my son has it, and others here too. If I am not mistaken, I believe most docs specializing in PANDAS treatment offer a 30 day DAILY azithromycin regimen, from 250mg. to 500mg. per day. Azithromycin works miracles for my son. About the probiotics- several of us, my son included, have found that adding one of these super-concentrated, super-selected monoculture probiotics causes symptoms to increase. My doc knows of this and has explained that it may indeed be a problem to an already overwhelmed immune response. So, instead, we use a fresh, liquid Kefir found in the grocery. That really should be sufficient to repopulate the gut. You may not get the response you hope for from a specialist who does not have first hand experience with many PANDAS cases. We all try, and some succeed at getting our docs to follow the protocols used by top PANDAS docs, however, many of us have had to travel far and wide to get to someone who really knows how to treat this. Where are you located?

 

 

[SarahJane]

Welcome. I was also going to say that the schedule fixation could be OCD. When my ds(6 almost 7) was in school last year, and PANDAS hit, he was VERY focused on his class schedule. Perfectionism is also a biggie with him. My son will sometimes balk at something new or a new plan, but only until he gets used to the idea (which can take a few seconds sometimes)...then he's fine. I would suggest that you consider your son's medical history & if you saw behaviors just before/after illnesses. And I'd especially look at what was going on during the autism dx. My son also had a speech delay that responded very quickly to speech therapy, BUT it was what the drs got stuck on to say he had development issues. And as you know, when you ask people to evaluate to see if there's something wrong...they usually find something despite the fact that all kids develop differently. Once you get on that path, it's hard to get off of it. And despite having the drs who were qualified to dx autism saying NO autism, the other drs seem to get caught by the fact that he was even ever evaluated. And PANDAS can look like autism in young children (and during exacerbations). There is also a high co-morbidity, so having PANDAS doesn't necessarily mean no autism. For the most part, you will need to find a dr who understands PANDAS to help your family and determine if it's there or not. A PANDAS dr can also help determine the best treatment.

 

Good luck. This is really one of those things where the more you learn, the more you realize how much MORE there is that you need to learn.

[JulieMc]

Fixation on schedule may be OCD related. Also, what looks like defiance (oppositional behaviors) often stems from the child "obeying" obsessions/compulsions that are more powerful than the need to obey and follow rules, even if he really wants to do the right thing.

 

Peggy, I guess when someone else looks through those same glasses, it can look really different, huh? Thank you for this wonderful insight.

 

Julie

[JulieMc]

Well, it sure sounds like it especially with confirmed strep problem. The echolalia can be part of it- my son has it, and others here too. If I am not mistaken, I believe most docs specializing in PANDAS treatment offer a 30 day DAILY azithromycin regimen, from 250mg. to 500mg. per day. Azithromycin works miracles for my son. About the probiotics- several of us, my son included, have found that adding one of these super-concentrated, super-selected monoculture probiotics causes symptoms to increase. My doc knows of this and has explained that it may indeed be a problem to an already overwhelmed immune response. So, instead, we use a fresh, liquid Kefir found in the grocery. That really should be sufficient to repopulate the gut. You may not get the response you hope for from a specialist who does not have first hand experience with many PANDAS cases. We all try, and some succeed at getting our docs to follow the protocols used by top PANDAS docs, however, many of us have had to travel far and wide to get to someone who really knows how to treat this. Where are you located?

 

Phasmid,

 

I will be contacting our doctor tomorrow. She actually told me that she and one other doctor in the practice actually prescribe every other day but that another doctor in the practice (actually the guy who originated this protocol we are on for autism), prescribes it daily. So, I'm going to e-mail her about getting on a daily dosage. She has been really responsive to us so I will be surprised if she won't do it. OK, which probiotic are you referring to? The Custom Probiotics or the S. Boulardi or both? We can't do kefir because my son is intolerant to dairy. Or can you get water kefir in the store? I know you can make it at home.

 

I am located near Austin, TX. Do you have any doctor recommendations? Is there a list anywhere of doctors that effectively treat PANDAS often?

 

Thank you so much!

[JulieMc]

Sarah, what an insightful response, thank you. I do believe he probably has both autism and PANDAS but I am hopeful if we get the PANDAS treated, maybe it will decrease some of his autism symptoms. Do you have suggestions for PANDAS doctors if the doctor we are currently seeing doesn't work out? We live near Austin, TX.

 

Julie

[peglem]

Fixation on schedule may be OCD related. Also, what looks like defiance (oppositional behaviors) often stems from the child "obeying" obsessions/compulsions that are more powerful than the need to obey and follow rules, even if he really wants to do the right thing.

 

Peggy, I guess when someone else looks through those same glasses, it can look really different, huh? Thank you for this wonderful insight.

 

Julie

It took me 10 years of following the "expert's" advice and trying to deal with this behaviorally before I realized that my child doesn't like it when this stuff happens anymore than her caregivers do. Poor kids, trying so hard to "be good" and just never can seem to....this is a tough one on self esteem if the adults do not understand what's going on. Once I began treating this w/ understanding, validating her struggle and sort of coaching her through it- this symptom became easier for both of us to deal with.

[Malke]

Fixation on schedule may be OCD related. Also, what looks like defiance (oppositional behaviors) often stems from the child "obeying" obsessions/compulsions that are more powerful than the need to obey and follow rules, even if he really wants to do the right thing.

 

Peggy, I guess when someone else looks through those same glasses, it can look really different, huh? Thank you for this wonderful insight.

 

Julie

It took me 10 years of following the "expert's" advice and trying to deal with this behaviorally before I realized that my child doesn't like it when this stuff happens anymore than her caregivers do. Poor kids, trying so hard to "be good" and just never can seem to....this is a tough one on self esteem if the adults do not understand what's going on. Once I began treating this w/ understanding, validating her struggle and sort of coaching her through it- this symptom became easier for both of us to deal with.

 

It has been really helpful for me to be completely transparent (when I know I can explain it simply enough) to let my daughter know that her body is unhappy and why, but also that she has some control in the situation. I tell her she can use her 'big girl brain' to remember to take deep breaths for calming down, for remembering that it is her brain and not *her* that is mad at the world, etc. I did this with her SPD and I am doing it again over the last few days and it seems to be helping her. I can't imagine how out of control she must feel. Part of her reactions must be from confusion and angst about what is happening to her, and why she is feeling the way she is. I've noticed that even if I say these things while she's in the middle of a fuss or an episode, once she gets to a calmer place (even days later) she is able to use the coaching and the explanations I've given her to help herself.

 

Best to you Julie!

 

Malke

[GraceUnderPressure]

It is possible that there is more going on than he is sharing with you. My ds18 was always very secretive about his "habits" as we used to call his compulsion-based tics. His problems began at age 4 but to this day, he cannot (possibly will not, but I think he is being honest here) explain why he felt *compelled* to hide it. I suspect that it is in some way actually part of his condition because it has led him to lie & disobey & get into all kinds of trouble over the years rather than telling me honestly what was going on - and that is totally NOT the little boy he was before the storm took over his brain. Only recently have I learned of the anxiety & compulsions that have possessed him all these years, increasing with each illness.

 

BTW, we thought he had Asperger's when this first began or possibly NVLD. I believe there is a definite overlap between ASD conditions and PANDAS/PITAND conditions somewhere along the line. I have long believed that the autoimmune theory of autism was the most credible as it seems to make sense of all the puzzle pieces we have of that disorder at this point.

 

My ds13 would fit a PDD-NOS diagnosis if we bothered to have it done. But in his case, I know that he was damaged by mercury because I had an amalgam replaced while I was 5 mos pregnant with him - peak brain development time. I read the govt's 1997 report on mercury and my ds's issues fit in perfectly with the symptoms they reported of low level mercury exposure on the fetus. Not only did it damage the speech areas of his brain as well as his attention span, but his immune system has always been hyper-reactive to any little thing that comes along.

 

My ds18 was the opposite. I discovered that I had my 5th amalgam placed approx. 2 mos before I would have conceived him - they say it takes mercury ~6 mos to clear or store (mostly store). I always thought his immune system was hypo-reactive as he never seemed to get the bugs that the rest of us passed around, but several dr's have told me that his immune system is super-efficient. So maybe that's why his immune system has been fooled by some mystery germ into attacking his basal ganglia...

[JulieMc]

Peggy and Malke, great explanations and insight. I've already started using it in my mind which helps me to cope and will start using it with my son as well.

 

Julie

[JulieMc]

Grace,

 

Yes, he has had one particular activity that he's been doing for quite some time that actually is what got us on the road to getting help. While I don't SEE him do this anymore I do know that he sometimes hides it. Sigh....

 

I think both of my sons' issues had to do with my getting the flu vaccine while pregnant. I had asthma so that always put me in the high-risk category and meant I was one of the first ones to get the flu shot. I will never get another flu shot gain in my life and neither will my kids as long as I have anything to say about it.

 

Thank you for sharing your experiences with your sons. It's always helpful to know what others have experienced.

[SSS]

Hi Julie, welcome :-)

I know you too from the old sensory board.

It is really strange- for years now, I had not fully understood OCD. What was OCD, I put off on sensory issues.

Now that I see clearer, it's so revealing to me. And I'm honestly not a hammer thinking everything is a nail- it's just I'm more educated now? I actually see tourette type episodes in my daughter now, and can't believe how I could not have seen all the OCD before. (Didn't help every professional would shrug their shoulders at me when I tried to describe it.)

Sending you some prayers and PV's---

Hang in there-

Sarah &

Samantha 5

Edited February 4, 2011 by S & S

[JulieMc]

Hi Julie, welcome :-)

I know you too from the old sensory board.

It is really strange- for years now, I had not fully understood OCD. What was OCD, I put off on sensory issues.

Now that I see clearer, it's so revealing to me. And I'm honestly not a hammer thinking everything is a nail- it's just I'm more educated now? I actually see tourette type episodes in my daughter now, and can't believe how I could not have seen all the OCD before. (Didn't help every professional would shrug their shoulders at me when I tried to describe it.)

Sending you some prayers and PV's---

Hang in there-

Sarah &

Samantha 5

 

Hi Sarah! It's funny how we all end up on the same boards. Sad, too, I guess. But good that we are all working to find solutions for our kids. Thank you for the prayers and PV's. I will definitely take them.

 

Julie

[LNN]

It has been really helpful for me to be completely transparent (when I know I can explain it simply enough) to let my daughter know that her body is unhappy and why, but also that she has some control in the situation. ... Part of her reactions must be from confusion and angst about what is happening to her, and why she is feeling the way she is. I've noticed that even if I say these things while she's in the middle of a fuss or an episode, once she gets to a calmer place (even days later) she is able to use the coaching and the explanations I've given her to help herself.

 

Young kids are great candidates for Cognitive Behavior Therapy (CBT) and Exposure/Response Prevention (ERP). I highly recommend a few books for you - "What to do when your brain gets stuck" (which may be a bit over her head but it will give you, the mom, some great coping ideas),"What to do when you worry too much" (which is easier for a 6 yo) and "Tiger, Tiger is it true?" which isn't about OCD but about doing a reality check when bad thoughts enter your head that aren't true. You'll have to help bring these concepts down to her level but they're a great way to give her coping tools - it's terrifying for a young kid to not understand what's happening and learning tools that empower them is incredibly helpful - now and for the rest of their lives.