Sibling PANDAS?

[BoyIowa]

I have read that many families have siblings that have PANDAS. Is it genetic? My daughter had 6 strep infections in 4 months last winter and my PANDAS son felt the effects. She had 2 sets of tubes for ear infections and had her T& A out. My daughter has never displayed any OCD type symptoms. Then, just last month she got walking pneumonia. They gave her a z-pack and it didn't get better. She is now on augmentin for bronchitis with a steroid cough medicine. Yesterday she had a meltdown. She threw a fit, was extremely defiant and has been very clingy.

I watch her every day and worry that she may have/get PANDAS like her brother. I have read on his forum that it can be tied to family members that have autoimmune disorders. My husband has ITP and my father-in-law has lupus. Is my daughter more likely to get it?

Is there something that I should be doing to be proactive with her?

[peglem]

There does seem to be a genetic predisposition to autoimmune issues.

[3boysmom]

Didn't have time to post earlier, but after our PANDAS onset with one son and then the PANDAS doctor pointing out the sibling connection and issues with our other boys that we did not know were signs of PANDAS, we were told to test them all. Well the other 2 had very high ASO & anti D nase titers and all 3 did the Cunninham test with results in the PANDAS range. Found that one childs cronic sinus issues were reallly strep in his sinus cavities. All 3 are on antibiotics and the issues with the milder 2 have mostly been resolved. The oldest improved on antibiotics but did not maintain....went onto IVIG.

[3boysmom]

You asked if you should do anything about your other child.... If you are suspecting things, then possibly test her titers and ask for longer doses of antibiotics when she does get sick. My Personal OPINION....I will not be vaccinating or flu shots any time soon (if ever). If you have a PANDAS doctor that you see.... Ask their opinion on how to prevent this with your other child. One other thing, it can be very hard for me to NOT see "everything" as PANDAS these days. Even half the kids at Walmart , school, or wherever look PANDAS to me. So be careful, it can be a fine balance between jumping to conclusions and lingering in denial. Blessings and prayers

[thereishope]

There may be a genetic factor to the autoimmune disorder, but it doesn't mean all children in the family will have it.

 

I have 3 kids. One is PANDAS. The other two have had strep and Mycoplasma Pneumonia with no associated PANDAS symptoms following infections. HOWEVER, that does not mean that I do not still worry. As stated in articles, I think one is Murphy's A Way Forward, it states that each child may have different thresholds for what their body can take before the autoimmune reaction finally activates. So, for that reason, I still worry.

 

You say your child that you thought was "non-PANDAS" is now having PANDAS symptoms? Well, it could be that the walking pneumonia was the the straw that broke the camel's back, but we also have to make sure there isn't another factor possibly causing the aggression and clinginess. Steroids can cause that and ceratin cough meds/allergy meds/decongestants can cause such behaviors. Did you chart when the symptoms started?

 

The bronchitis could still be the walking pneumonia. If a cough was present, that could take weeks to clear even if the bacteria was erradicated. If the doctor says the infection is still present, you can discuss another course of Azithro or try Biaxin. Biaxin is another antibiotic for Myco P that a decent portion of PANDAS/PITAND kids use. Obviously, any infection that is still present needs to be erradicated.

[airial95]

I was in the same boat as you - I started to see PANDAS symptoms in my non-PANDAS daughter about a year after my son presented. I was told I was PTSD - seeing symptoms that didn't exist because I was so stressed out about trying to deal with my son. A few months ago - we got a PANDAS dx from our pediatrician and are following up with Murphy in January to confirm.

 

I will be honest - if I didn't know all of the things to look for, if I wasn't as "well versed" in PANDAS presentation as I was because of my son and these forums - we absolutely would've missed it in my daughter - but her symptoms have gotten progressively worse with each strep infection she has had this year (4 so far) - with this last one a couple of weeks ago being her worst. She's still no where near as severe as my son - but this last go round was noticiable by anyone's standards.

 

Murphy was one who made the connection between autoimmune issues with the parents and high incidence in siblings (I don't remember what paper - but we have discussed it in our appointments).