Diagnose my 2 yr old - PANDAS or developmental?

[pixiesmommy]

Peri is stuttering. It started about a week ago.... and coincided with her rash and not feeling well and being "I scared, mommy!!" when I would put her down for a nap. Of course, all I can think is Strep and PANDAS, but I am trying to take a breath here. She tested negative on the rapid and 72 hr strep cultures we did last Wed.

 

 

 

She is saying all in one breath, "Mommymommmymommmy mmmm mommy mommmy mommmy LOOk... (and then telling me what she wants to say.) Today there are about a million more mommies attached and it is EVERY time she says something, not just a few times a day like it has been. It's a DRAMATIC increase and she is doing it with DADDY today as well. She is also stuttering the first word after the "mommy" or "daddy" sequence and doing a very hard blink of her eyes while saying it.

 

Now, to rule out a couple of things, Pixie doesn't stutter and she has been around no one who stutters. Also, even though Pixie will occasionally have an eye tic now and again, she has not had a very hard eye blink like Peri is doing, so we know she is not mimicking. Pixie has not had an eye tic since IVIG either, which is about 2 months, and we have no reason to think Peri even ever noticed it, etc.

 

 

I know of another little boy (whom Peri has never had contact with) who did the "mommy" thing at about 4 yrs old but he did not become verbal until 3 yrs, so I can't compare the ages/stages as well with that. He is 6 now and does it less but also has had some extensive speech and motor therapy.

 

Anyone??

 

*As a side note, we are starting her on abx because I'm still concerned that her diaper rash is strep even though her throat swab was clear. The PA would not test her bottom for strep. She has rash on her bottom which started on her tummy (2 boil-like bumps that made me first think Chicken Pox as she is unvaxed... then raw bottom with some bumps, then sandpapery rash on trunk which came and went with the wind, then 3 bumps on face and now a runny nose and still a raw red bottom.) The PA prescribed Zithromax 15mg/day because she thinks she "may have a sinus infection." Whatever. I have have abx but I don't think sinus infection. She initially diagnosed her with diaper rash (duhhhhh on her face too??)

 

 

Also, just to add to the craziness- she has (like Pixie, my confirmed PANDAS dd, 9 yrs old) had unexplained fevers. 2 of them now and both in the past few months. Each lasting just a few hours with no other symptoms like pain, runny nose, etc. One so high that the dr had us take her to the ER for observation, who of course sent us home with suppositories to bring it down. After the first one she didn't have any symptoms that we really noticed, other than maybe a slight increase in head-shaking (side to side) which she had been doing since about 9 months. Then that disappeared altogether and she got VERY clingy after second fever and now is "scared" of everything.

 

 

Where is the hair-pulling, screaming, I'm-going-to-ram-my-head-into-a-brick-wall smiley????

[sf_mom]

Our 2 1/2 year old is on 200 m.g. of Azithromycin daily (as of today). He was on 125 m.g for about the last three weeks and just switched. We had him tested because of the history of events. It turns out, Adrian was diagnosed with RF and treated with IVIG last week. Our older son, looks like it might have been Kawasaki's at the time but went undiagnosed. Romy was confirmed Kawasaki's. Romy has also had the sand papery rash similar to Scarlet Fever that is slowly disappearing with antibiotics.

 

I've attached the brief history and our test results for your review. You might want to have similar test run (we did IgG subclasses today). We will most likely treat with IVIG if his IgG Subclasses are low or lower end of normal indicative of many PANDAS kids. I was upset, angry, worried and now I'm moving forward with testing. Better to know now instead of 2 to 3 years from now. We have some emotional issues too but so hard to tell with a 2 1/2 year old we are depending on test results to guide our decision.

 

CaM Kinase: 147 Mid Range PANDAS

 

White Blood Cell Count: 4.8: Low end of normal range is 6.0

 

Red Blood Cell Count: 32: Low end of normal range is 33

 

ASO: Negative

 

Anti-DNAse-B: Negative

 

Strep Pneumoniae Antibody IGG

 

Serotype 1: < 0.3

 

Serotype 3: < 0.3

 

Serotype 4: < 0.3

 

Serotype 5: < 0.3

 

Serotype 8: < 0.3

 

Serotype 9: < 0.5

 

Serotype 12: < 0.3

 

Serotype 14: < 2.4 (The only serotype that is considered protective)

 

Serotype 19: < 0.4

 

Serotype 23: < 1.2

 

Serotype 26: < 1.6

 

Serotype 51: < 0.3

 

Serotype 56: < 0.3

 

Serotype 68: < 0.7

 

 

Brief History of Exposure in 2007

 

November 2007 (IMPORTANT HISTORY) Sunday, November 4, 2007 we had a play date with a boy named Adrian who had a swollen gland on the left side of his neck the size of a golf ball. Exactly 10 days after play date Corsa had what looked like pink eye in both eyes and a high fever for 4 or 5 days. Exactly 10 days after the start of Corsa‘s illness our 5 ½ month old baby boy Romy started showing signs of a similar illness. However, Romy symptoms seemed to be much worse with extreme restlessness and vomiting even after IV fluids. Within 24 hours of Romy getting sick he was admitted to the hospital and eventually diagnosed with Kawasaki’s. Romy was treated with IVIG on day 5 of high fever. I asked if Kawasaki’s was contagious and explained my older sons symptoms. I was told that they didn’t think Kawasaki’s was contagious and it was highly unlikely our other son had Kawasaki’s the week prior. I have recently discovered that our son‘s friend had peeling palms and feet (skin coming off in sheets) with a prior fever and rash at the time of play date as well as the swollen gland. The peeling palms and feet was not communicated to Adrian‘s Dr. when his mother sought treatment for swollen neck gland. Adrian was diagnosed with strep throat Monday, November 5th, 2007 and treated with several courses of antibiotics. It was eventually determined he had weak immune system, sinusitis and irritated adenoids that were eventually pulled June of 2008. THE SWOLLEN GLAND DID NOT RESOLVE ITSELF UNTIL ADRIAN’S ADENOIDS WERE PULLED. Our sons friend, still suffers from headaches, daily joint pain, weak immune system, extreme shyness, separation anxiety, OCD behavior, TICS, chapped lips with cold sores and is repeating Kindergarten.

 

Corsa: CaM Kinase 124 (Blood Draw taken 11 days post 5 day steroid burst), Deficiencies in 10 of 14 Strep Pneumococcal Antibody Titers, ASO 244, Anti-DNAse-B Negative

 

Romy: CaM Kinase 148, Deficiencies in 13 of 14 Strep Pneumococcal Antibody Titers, ASO Negative, Anti-DNAse-B Negative.

 

Adrian: CaM Kinase 147, Deficiencies in 12 of 14 Strep Pneumococcal Antibody Titers (Blood Draw in Feb. 2007, Retested Pneumococcal Antibodies 11/12/09), ESR and CRP Elevated in 2007, Anti-DNAse-B 680 - Confirmed RF Diagnosis 2009

 

 

 

I BELIEVE THE FOLLOWING IS IMPORTANT AS TO WHY CORSA’s and ROMY’s Anti-DNAse-B are not elevated but still have a response in their CaM Kinase.

 

 

Kawasaki's & RF streptococcal superantigens!!!!!

 

In summary, emerging evidence strongly suggests an involvement of streptococcal superantigens in the pathogenesis of RF and Kawasaki disease. Changes in HLA class II alleles appear to affect superantigen functions, dramatically leading to the proliferation of specific T cell clones, which appear to target cardiac and vascular tissues. The pressing need at this time is to examine the role of superantigens from M18 strain (known to cause RF) in SC and PANDAS. We speculate that subsets of other psychiatric disorders such as anorexia nervosa, body dysmorphic disorder, and ADHD may also share pathophysiology similar to that of RF. Findings from these studies, if affirmative, would have a profound impact for the practicing physicians in psychiatry and pediatrics.

 

http://neuro.psychiatryonline.org/cgi/content/full/16/3/252

 

 

 

AND, a study PROVING that ASO Titers do not rise in Kawasaki's but S. Pyogrenes is Present.

http://www.springerlink.com/content/l34qj830548q4q46/ Summary attached.

 

 

 

ROMY's (Our younger son) RED BLOOD COUNT IS LOW, WHITE BLOOD COUNT IS LOW

 

Streptococcus pyogenes.[1] Beta-hemolytic streptococci produce a toxin that forms a clear zone of hemolysis on blood agar, demonstrating its ability to destroy red blood cells. This hemolysis is attributed to toxins formed by Group A streptococci called streptolysins. Streptolysins can destroy not only red blood cells, but also the white blood cells responsible for fighting off bacteria and disease, as well as other body cells.[2]

http://pyogenesgonewild.com

 

 

Adrian was sick - November 4th (confirmed strep November 5th, 2007), Corsa was sick - November 14th, Romy was sick - November 24th, 2007...... exactly 10 Days apart.

 

Streptococci are catalase-negative. In ideal conditions, S. pyogenes has an incubation period of approximately 10 days.

 

This bacterium remains acutely sensitive to penicillin. Failure of treatment with penicillin is generally attributed to other local commensal organisms producing β-lactamase or failure to achieve adequate tissue levels in the pharynx. Certain strains have developed resistance to macrolides, tetracyclines and clindamycin.

http://en.wikipedia.org/wiki/Streptococcus_pyogenes

[fuelforall]

What do her tonsils/adenoids look like?

ds9's 3-year old brother (not related,adopted) has HUGE adenoids.

Maybe she should be evaluated for tonsil and adenoid removal.

Otherwise, don't panic... yet. I know, it's hard.

[dut]

Hello.

 

We have a dd6 with PANDAS. Our now 29 month old son had some PANDAS red flags possibly as early as 9 months (with hindsight). We did the cunningham test for him and it came back at 151% and elevated anti lysoganglioside. We have just done a 5 day steroid burst with good, if minimal results. Best result was much improved sleep from 6-8 wakings a night down to none in 5 days and an improvement in frustration tolerance. We may have had better results with longer steroids, who knows, but I didn't want to go longer with flu strep rampant at this time opf year. (Lucky 'cos our dd has just gotten the flu). We followed up with 2 weeks full zith and now going to do 2 more weeks of full zith and follow that up with proph abx.

 

Would your ped be willing to try a burst and some full strength abx for lonmger than the normal course? When the child is this young it's so hard to tell what is normal or not. I feel convinced that many of these kids are presenting with symptoms way earlier than originally thought.

 

Scary stuff when they are this young but better to catch it now if it is PANDAS. Catching it early has to make it easier to manage longterm.....

 

Good luck..

[peglem]

I don't think its a choice between PANDAS or development. I think PANDAS disrupts development.

[EAMom]

I would definitely Cunningham her and do an immune workup. (If you do want to try steroids I would hold off until you can get blood for Dr. Cunningham.)

 

Is this right?

The PA prescribed Zithromax 15mg/day because she thinks she "may have a sinus infection."

15mg/day sounds too low, even for a 2-year-old...did you mean 150mg/day? How much does she weigh?

[sf_mom]

I would definitely Cunningham her and do an immune workup. (If you do want to try steroids I would hold off until you can get blood for Dr. Cunningham.)

 

Is this right?

The PA prescribed Zithromax 15mg/day because she thinks she "may have a sinus infection."

15mg/day sounds too low, even for a 2-year-old...did you mean 150mg/day? How much does she weigh?

 

Possibly 15 ML, one tablespoon, 200 m.g.?

[pixiesmommy]

i meant ml... typo

[Suzan]

She is saying all in one breath, "Mommymommmymommmy mmmm mommy mommmy mommmy LOOk... (and then telling me what she wants to say.) Today there are about a million more mommies attached and it is EVERY time she says something, not just a few times a day like it has been. It's a DRAMATIC increase and she is doing it with DADDY today as well. She is also stuttering the first word after the "mommy" or "daddy" sequence and doing a very hard blink of her eyes while saying it.

 

After the first one she didn't have any symptoms that we really noticed, other than maybe a slight increase in head-shaking (side to side) which she had been doing since about 9 months. Then that disappeared altogether and she got VERY clingy after second fever and now is "scared" of everything.

 

 

Where is the hair-pulling, screaming, I'm-going-to-ram-my-head-into-a-brick-wall smiley????

 

 

At first when reading your post I was just thinking "I don't know, how can I know, my kids have been strange from the beginning, I don't know what normal is". But then I got kind of creepy thinking of the head shaking. My dd8 did this all the time. I totally forgot about it. She always shook her head. Very scared of things and clingy. We had the mommy mommy mommy thing too but that seems more normal to me, but who knows. My red flags are going up for Peri. Good to look strongly into, just in case.

 

Susan

[mama2alex]

I'm so sorry - this must be so hard, especially when Pixie is starting to improve and you might be feeling like you can see the light at the end of the tunnel. This doesn't sound like "typical" behavior to me - especially the dramatic changes that have a definite pattern to them. I think it's a huge red flag.

 

I'll say what I said to SFMom when she became concerned about her younger son. Jump on it and be aggressive. You have so much knowledge now that you can use to nip this in the bud. You don't have to go through years of wondering, things getting worse, alphabet soup diagnoses, only to find out it was strep. I'm sure you're exhausted and don't want to deal with any more, but you know what tests to run and how to help her. You'll get through this.

 

As for getting her bottom cultured, I can't believe they refused! Could you go to an after-hours clinic on the weekend and talk to a doctor? Anyone else have any ideas about how to get this done?

 

Also, maybe a phone consult with Dr. K at some point?

[matis_mom]

Many of the symptoms you mention sound so much like my PANDAS ds... Off and on since he was about three (or at least that's what I remember), he has had the following symptoms off and on: stuttering, eye-blinking, stomach/GI issues, swollen/painful joints, unexplained high fevers... I truly believe all of these were strep related. The problem is he never had the typical "strep-throat" symptoms. He has strep in the gut (found through stool sample, and confirmed by high streptozyme, ASO, and AntiDNASE titers). I would say for those of us who already have a child with PANDAS, we can't afford to wait and see... Keep us posted on how she does on antibiotics.

[sf_mom]

Buy rapid strep test on-line and do it yourself.

 

I'm so sorry - this must be so hard, especially when Pixie is starting to improve and you might be feeling like you can see the light at the end of the tunnel. This doesn't sound like "typical" behavior to me - especially the dramatic changes that have a definite pattern to them. I think it's a huge red flag.

 

I'll say what I said to SFMom when she became concerned about her younger son. Jump on it and be aggressive. You have so much knowledge now that you can use to nip this in the bud. You don't have to go through years of wondering, things getting worse, alphabet soup diagnoses, only to find out it was strep. I'm sure you're exhausted and don't want to deal with any more, but you know what tests to run and how to help her. You'll get through this.

 

As for getting her bottom cultured, I can't believe they refused! Could you go to an after-hours clinic on the weekend and talk to a doctor? Anyone else have any ideas about how to get this done?

 

Also, maybe a phone consult with Dr. K at some point?

[pixiesmommy]

We emailed Dr K. I sat here and read all the replies last night and thought about her history and really started worrying. There is already a pattern of behavioral things that look like OCD and tics that always follow bouts of either illness (runny nose, etc) and/or fevers with no other symptoms. Maybe it is paranoia on my part, but I have seen what this can lead to and I'd rather be wrong and paranoid than to let it go and it be PANDAS and she is then to the pt where Pixie is (or worse.)

 

I'm going to wait to hear back from him until this evening to see if he wants to do any tests with her or see her at all, and if he feels like the dosage they are giving her is enough, etc. If I don't hear back, then we'll just start with that abx tonight regardless.

 

She already has set for Monday and allergist appt (unfortunately he is not familiar with PANDAS, but I plan to educate him ) because we also know she has some food allergy issues (don't those seem to coincide too!!?? ::sigh:

 

I hate to have her blood drawn, but I'm really leaning toward doing the Cunningham blood work on her as well. I went against my better instincts to have it done with Pixie's and decided not to, but now I am kicking myself!!)

 

 

In other related news, since 2 weeks ago when all this started, Pixie has been off the wall. I can't even remember if I posted anything about it... I'm a zombie lately, but she is upped now to 600 mg Augmentin twice daily per Dr K since he knew Peri was sick and Pixie was reacting. I'm hoping hoping hoping we hear something from him by the end of the day.

 

As DH said, OMG if it is strep on her bottom, then we are in for it, because they BATHE together even. That is the only way we have been able to get Pixie to take baths, so that is going to be a real problem!!

[pixiesmommy]

No reply back yet from Dr K, so we started her on the Azith tonight. She has now added a funny penquin-like walk, but again, it could just be her being a silly 2 yr old or could be something related. I'm stressing to the max.

[pixiesmommy]

We didn't go into extreme detail with our email to Dr K, but did basically tell him what I said here. His reply was that he carefully read through it several times and could not see a PANDAS pattern in what we were saying, but he is not ruling it out. He'd like to observe her in person and get a feel for her.

 

We started the abx last night and today her "cold" symptoms have been worse and the diaper rash is just as nasty as ever. She has an allergist appt on Monday and I will try to see if he is able to swab her posterior for strep if it's still presenting.

 

I also need to find out where to order those strep tests... off to start a new thread!