Another question about the possibility in siblings?

[airial95]

I was on here several weeks back worried that now my 4 year old daughter was showing signs...it was all there - her PANDAS brother had a strep infection, and she was doing weird things, including rituals, seperation anxiety, etc...

 

At my doctor and husband's urging, we observed her objectively using a similar checklist as my son, and shortly thereafter most of the behaviors stopped so we concluded that she was doing it for attention (she is a bit of a drama queen that one )

 

Fast forward to this morning, happily dropping her off at her first day of pre-school and I recalled her pure fear of entering that classroom a few weeks prior during orientation and the terror stricken seperation anxiety of my leaving her in there during the parents meeting. This sounds normal for a preschooler in a new place - but her preschool is at the same place she's been going to day care her whole life, and she's been in that classroom a million times before, knew all of the teachers, etc... That was one of my big red flags at the time that I got worried about.

 

When she was doing things that worried us the most, her brother had a strep infection, and about 2 weeks later she had Scarlett Fever (also strep). Her behavior stopped after the scarlett fever was treated.

 

My question: Is it possible that she has it, but in such a mild form that she was reacting to her brother and her Scarlett Fever, but after treatment with the Omnicef went back to normal? Coult it have gone away with just one 10 day course of abx?

 

She's still a drama queen though - but she wouldn't be my princess if she wasn't

[AmySLP]

We have the same situation here. My youngest is 3 1/2. I had been questioning in my head if her "dramatic" behaviors were being the "baby"of the family, growing up in a house with my PANDAS daughter and just modeling those behaviors, or did she truly have a milder form of PANDAS. (my 6 y/o daughter was 3 yrs, 10 mos when her PANDAS started to become obvious) so as my little one began to get closer I started to wonder more and more. My 3.5 y/o had been in PT for gross motor delays (mild) and then referred to OT for sensory integration concerns. Her sensory things often waxed and waned so week to week I'd go in and report an inconsistencies in the behaviors. It just didn't match with my experience with SI kids (I worked as an SLP on a multidisciplinary team of OT/PT/SLP for 6 years with preschoolers). Anyhow, she got a skin infection that was treated as Impetigo, but when it did not respond to a topical treatment specific to that kind of bacteria, they cultured it and found it was strep, so she was treated with an oral ABX. A few weeks later she was having periods of seperation anxiety at home, if she found herself in a room alone. She was waking at night having rages that were uncontrollable. And lastly, her sensory system seemed to be heightened again. I still did not want to believe it could be PANDAS, until ouor second visit with DR. B. He asked about her and I told him I wondered if she was "on the fence"-very mild PANDAS...(mostly b/c I still wanted to believe it was just her temperment, young age, birth order etc, etc) HE did the full bloodwork panel on her. She had immune complexes that were elevated(C3 was 38 (norm <8). TIters were not increased, but my 6 y/o do not rise at all either despite many, many positive strep cultures. So we treated her with ABX to see what would happen and their have been no nighttime rages & NO separation anxiety..in fact she prefers to play alone in a room and will tell us to get out. Sensory is fine now (she is an intense thumb sucker, but so was I). I have finally gotten to the point where I can say both of my girls have PANDAS. It was really hard to admit for a long time, but the changes in behaviors from ABX have proved it to me. Dr. B has suggested Cunningham tests for both girls, so that wil be our next pursuit. I would urge you to have her looked at. Many parents are finding that siblings have PANDAS to some degree as well, maybe just not to the same degree. I also wonder if it's just that we are catching it at an earlier age in siblings, being more vigilant b/c we know all too well what to look for.

 

Best wishes,

Amy

[saidie10]

Absolutely same for us yet we just know that my younger son is a ticking time bomb. Had both sons bloodwork done together and DS7 who had IVIG last week had elevated titers, Immune Deficiency and Cunningham of 163. Younger son 5 had normal titers, still normal Immune Subclasses but one very close to being low, and Cunningham of 179! I know simply by the way he responded the last two times he had strep in February and in May that he is PANDAS too, just trying to find a doctor willing to treat him with abx to prevent it from getting worse with each infection. He did like your daughter and responded well to 10 days of abx, but I know that will not always be the case. It is truly only a matter of time

[AmySLP]

I was watching the videos under the post Dr. MDK page. Dr. Susan Schulman, a pediatrician treating PANDAS, in the segment called Possible Treatments stated that...

 

“The mildest form of PANDAS actually is irritability. The symptoms of PANDAS range from easily crying, very angry, not happy, not satisfied, irritable, fighting with his siblings, not satisfied with anything the parents give, restlessness...that is the mildest, most common symptom.”

 

She goes on to talk about milder symtoms & I would say many of those fall under the umbrella of "drama queen" like my youngest.

 

She also says in another clip...“...by the way, it does come up in siblings, it's not rare at all to see it in siblings.”

 

Makes the reality of my second child's dx. sink in even more.

[airial95]

I“The mildest form of PANDAS actually is irritability. The symptoms of PANDAS range from easily crying, very angry, not happy, not satisfied, irritable, fighting with his siblings, not satisfied with anything the parents give, restlessness...that is the mildest, most common symptom.”

 

 

Is she talking about PANDAS kids or teenagers?

 

I have a follow up appointment with Dr. Murphy in September, I may have to bring up his sister's behavior and our doubts.

 

I discussed it with my pediatrician, and he hinted that it might be "vulnerable child syndrome" - a situation where the parents of sick children are too overprotective, or begin to "project" symptoms onto otherwise healthy kids - from what I read about it, seems like almost a PTSD type of reaction. (Completely understandable for a PANDAS parent). As much as I was PO'd at his hinting that it was all in my head - our pediatrician has been AMAZING in that he has been DEAD ON with everything with my kids from day one - especially on the PANDAS thing. So I have to give him the benefit of the doubt that I might be a little nuts - but who here isn't?

 

As for the "drama queen" aspect being a PANDAS symptom - unfortunately, that may have more to do with the curse my mother put on me as a child - you all know the one "Someday I hope you have a daughter that's just like you!!"

[dut]

Hi - IMHO I think that PANDAS can present really mildly and/or without the obvious tell-tale signs of OCD or tics. I also believe that for some kids the difference comes down to the BBB. For some of those who present more severely or who take longer/need more aggressive treatment to get back to baseline their BBBs are more compromised.

 

Our dd has in the past responded to steroids within 12 hours of the first dose, with all, admittedly mild at the time symptoms, disappearing. This can't be down to lower production of antibodies considering they have such a long half life but has to be down to diminished inflammation and better BBB integrity.

 

I posted an opinion article recently that said that many children will develop self cross reactive antibodies and that it is in fact a fairly normal part of the immune system functioning and that the issues arise when the BBB isn't working to its fullest capacity. Not sure how much of that I buy into but certainly can see it's a possible and it makes sense that there might be many kids out there with the anitbodies but who never show signs, or just mild signs, but whose BBB never has enough of a breach to let them through or those whose BBB may have a lower integrity while ill but their BBBs bounce back quickly to full integrity.

Edited August 24, 2010 by dut

[colleenrn]

I have 4 children with PANDAS, but it is my oldest (age 14 who began at age 5) who has the most severe. She had the "classic" overnight onset of tics, OCD, anxiety. She continues to struggle )no where near as bad as years ago, but still not good) despite being on 2 years of Zithromax, with courses of other antibiotics added in.

 

My next child (now age 9) started to show more "emotional", labile behavior at times and would test positive at those times for strep. I have seen very few tics with him ever, just mostly irritability, forgetfulness, sometimes defiance, easily crying, etc..

 

My 3rd son (age 7), same as my 2nd.

 

My 4th child (age 4), pretty much the same, but began his PANDAS journey much younger, around age 1 or so.

 

I think that there is a wide spectrum of symptoms and severity with PANDAS. I also wonder if my 3 younger children were treated more agresively (quicker to give antibiotics, longer courses of antibiotics) and that is why their symptoms are not as severe.

 

My niece and nephew (my sister's children) have "classic" PANDAS, yet I am very suspicious that their youngest sister has a "milder" case of PANDAS, yet still has it although not yet diagnosed.

 

My other set of niece and nephew (brother's children) make me very suspicious that they also have PANDAS. They get freuquent strep and ear infections. When they are sick they have behavior changes, with very occassional tics, night terrors, emotional behaviors.

 

I think one sibling can have a more severe case of PANDAS, but I also beleive maybe some of that is b/c we "know" more b/c of the 1st child and jump quicker to treat the 2nd b/c of our increased knowledge.

 

With all of that said, I know that things can always change for the worse, but I hope and pray my children with the "milder" form of PANDAS, do not worsen.

 

Colleen

[kimballot]

When I was watching the new DrMDK videos I noticed that Dr. Schulman identified Mild, Moderate, and severe PANDAS and talked about what you see in each. She talks about irritability and difficult behavior being mild PANDAS.

 

As I watched more videos of hers it was clear to me that she now treats PANDAS from very early on and I wonder if many of her kids never get to the severe form.

 

Here is the clip on mild, moderate, and severe.