Here we go again...

[mom md]

I will give you the cliff note version. My older two sons have both been diagnosed with PANDAS and have been through the ringer. PEX and IVIG for one and IVIG for the second. Interesting though, their disease presented more with hyperactivity, sleep disturbances, mood swings, tics, and sleep disturbances. They are both doing well now. My oldest has not had symptoms in two years (he was very severe) and my 8 year old is finally almost back to baseline (he was caught much earlier).

My daughter, 6, started kindergarden and right around the beginning of school I noticed some anxiety and a hugging ritual. She has had some separation anxiety, ramped up OCD, and now just yesterday started touching things two times. I know this disease can have a 40% sibling rate, but come on! Have we not been through enough! I made an appointment with a behavioral psychologist who has experience with the disease to get documentation and we have an appointment with her pediatrician tomorrow.

She is VERY early. I do not think a non-PANDAS parent would even notice her behavior. My husband is not even convinced, although it took my oldest to get to full chorea before he agreed it was not a behavior issue. He agrees though my maternal instinct has never been wrong before. She did have an ear infection (psuedomonas it turns out) that went for almost three months before we got it cured that may have been the catalyst. What is the current thought is you catch these kids this early? Antibiotics to shut antibody production down? antibiotics and steroids??? She is not severe enough for the NIMH study. Thanks for your thoughts. I know what to do when the kids get bad but what if you catch them this mild and early?

[airial95]

Just wanted to share our experiences/observations - my daughter has presented drastically differently than my son. She's far more emotional, obsessional thoughts rather than rituals, perfectionism is a big deal. Where with our son it was undeniable that something was going on (hyperactivity, rages, violence, etc...)

 

She was caught early, partly because everytime my son tested + for strep the whole family was dragged in for swabs and more than once she tested positive with no physical symptoms, so she was treated.

 

Like you - I saw it about a year before anyone else was willing to entertain the idea - she was acting out, seeing the attention her brother was getting, I was a paranoid maniac (probably some truth there ) But eventually, it was undeniable.

 

She got dx last year in kindergarten - and thankfully so. We have seen her symptoms more clearly in the academic setting than anywhere else - thankfully her K teacher had a special ed background and was wonderful!

 

We consider my daughter "mild" - she also wasn't severe enough for the NIH trial. On a scale of 1-10 at her worst, she probably ranks a 5. I would describe her outbreaks similar to a teenager going through REALLY bad PMS. (Which makes us dread those years all the more!!!)

 

One of the fellows at Dr. Murphy's office even confirmed that boys tend to present differently than girls.

 

As for catching it early - I feel that we have. And although she got strep 4 times last spring (I think they were just giving it back and forth to each other) and already 1x this fall (first week of school!!) - she tends to clear completely with an extended round of abx (4-6) weeks, with no lingering symptoms between infections.

 

While we're still struggling with my son significantly - we feel that because we were proactive in getting the family tested/treated early on, we helped catch hers early enough that she's a "manageable" case.

[bulldog24]

I would have blood drawn (aso antidnase b, Lyme western blots, etc) then throat culture and abx. I personally would wait on steroids and try to get bloodwork before the abx start as they can skew lyme tests etc.

[JAG10]

Mom MD,

 

I have to admit your post gave me a chuckle. I mean, you're a doctor and if your husband gives YOU the skeptical hairy eyeball.....how do any of us stand a chance???

 

God bless the dads who fight for their pandas/pans kids. My husband is a great guy who trusts my instincts....especially when my instincts and his wallet do not intersect. But the pandas dads who take this fight head on are truly exceptional fathers.

 

I thought of you when it was reported that Swedo said not to chase titers as we both have kids whose DNAseB titers had risen and fell with degree of behavior. My younger dd9 is mild and we have managed with abx and a steroid taper or two. Her IgG is on the low side, low 600's when the bottom of normal range should be high 600's. Dr. B said not to use her IgG level as a measure of her health.

 

Jill

[PowPow]

I have the same as you. Two older kids, both pex and IVIG (though they are 13 & 14) and a 7 yo who was "mild and caught" early. I am working on catching our 4 yo NOW before the potential spiral down!

Our doc gave the 7 yo steroids ( a month's worth) and zithro at first. That was almost 2 years ago (she is 7) and she is just starting her 4th steroid month and now, cefdinir for this most recent exacerbation. It started with only a vocal tic, squeaking. At 5 years old, that could easily have been a wait and see deal. Well, wouldn't you know, the subsequent exacerbations included OCD, frightening thoughts, wetting, the whole nine yards- though not all at once.

 

I would jump on it early- and for all my kids, steroids have been a real lifesaver. I counted my lucky stars when my preschooler (not diagnosed with PANDAS- but seeing the neuro next month) needed IV steroids and IV abx for pneumonia and asthma last fall-- it shut down her intrusive thoughts and other OCD symptoms in a few days! She has been in good shape until this summer.

We just saw our PANDAS doc and she said the rate is about 50% for siblings. That would be accurate here.

 

Best of wishes to you!

[mom md]

Took her in today and sure enough strep test was positive. She was shocked. I burst into tears. I knew it was coming but the conformation was just too much. I just told her, it was not that I did not know what to do but that the whole path is such a struggle. My daughter has no strep symptoms except OCD off the charts. Our pediatrician was great and gave everyone a cephalosporin for 10 days just in case the boys were exposed. I was able to get an appointment with Latimer early October just to get the "stamp" of approval for diagnostic purposes because the doctors here are good but still are timid to give a diagnosis. It will be interesting to see what she says. My guess is antibiotics and tonsils out but we will see. I spoke with my immunologist who has left her practice but hopes to start an immunology practice in the next 4-6 weeks and plans to focus on PANDAS as one of her specialities. I will definitely get the word out when she opens her doors. She assured me if we needed IVIG at some point we could get it in Charlotte but to just travel to DC to get Latimer's opinion. (And her office notes for insurance purposes/documentation).

My husband laughed tonight and said he promised never to doubt me again. I think he knows how consumed I get with this disease and thinks if he can just stay in the denial phase it will all go away. I am sure if he ever worried I would be really scared. I know we will get through this, I will just pull up my boot straps and fight. It still sucks though.

[EAMom]

Took her in today and sure enough strep test was positive. She was shocked. I burst into tears. I knew it was coming but the conformation was just too much. I just told her, it was not that I did not know what to do but that the whole path is such a struggle. My daughter has no strep symptoms except OCD off the charts. Our pediatrician was great and gave everyone a cephalosporin for 10 days just in case the boys were exposed. I was able to get an appointment with Latimer early October just to get the "stamp" of approval for diagnostic purposes because the doctors here are good but still are timid to give a diagnosis. It will be interesting to see what she says. My guess is antibiotics and tonsils out but we will see. I spoke with my immunologist who has left her practice but hopes to start an immunology practice in the next 4-6 weeks and plans to focus on PANDAS as one of her specialities. I will definitely get the word out when she opens her doors. She assured me if we needed IVIG at some point we could get it in Charlotte but to just travel to DC to get Latimer's opinion. (And her office notes for insurance purposes/documentation).

My husband laughed tonight and said he promised never to doubt me again. I think he knows how consumed I get with this disease and thinks if he can just stay in the denial phase it will all go away. I am sure if he ever worried I would be really scared. I know we will get through this, I will just pull up my boot straps and fight. It still sucks though.

 

OH...maybe she could qualify for the NIMH IVIG study? they still need kids.

[Bttrfly1]

Can anyone help me understand why PANDAS is passed genetically like this? Would you consider having another baby knowing that there is a 50 percent rate that your next kid could have this?

[MomWithOCDSon]

Bttrfly1 --

I'm neither a doctor nor a scientist, but I would venture that the tendency for multiple kids in a family to be susceptible to PANDAs/PANs is part and parcel of one or both of the following inheritable conditions:  1) the constitution of one's immune system; and/or 2) one's methylation cycle and any mutations that potentially impact one's inherent ability to properly process nutrients, maintain neurotransmitter balance and control the body's inflammatory responses.

The methylation cycle and all of the genetic code and mutations stuff is way over my head, but you can find multiple threads with some good information here on the forum.

I'm sure the prospect of a second kid with PANDAs/PANs challenges is a daunting one, but it might help to remember that susceptibility, and even genetic mutations, don't necessarily result in gene expression or manifestation.  And forewarned can be forearmed, so there are likely some steps you could take during your pregnancy and your new child's early months/years that might curtail or even potentially  prevent any future expression of PANDAs/PANs issues.  I'm not sure what part of the country you're in, but Dr. Kenneth Bock in New York State runs a medical practice which is aimed at promoting the healthiest possible in-utero environment and nutritional and health practices for infants and children that result in strong, healthy, "neurotypical" immune systems.  If his practice is an option for you, it might be something to consider.  I've heard him speak and read his book (Curing the New Childhood Epidemics:  Allergies, Asthma, ADHD and Autism), and he's quite impressive.

All the best to you!