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Lightning can't strike twice right?! Please no!


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My son (now 5) was hit hard with PANS when he was 2.5. Complete personality change & tics overnight. He is doing okay, not great, but life is now bearable by starting antibiotics at the first sign of an illness.

 

His little brother just turned 2 last month. He has been an angel baby, so happy go lucky, perfect eater (my 5 year old has severe food anxiety), the sweetest and most loving cuddly little guy. Never had any of the sensory issues my oldest had. We have all been sick on and off over the past month and out of the blue my 2 year old stopped eating...like he eats less than half of what he would before and calls things he LOVED yucky....won't even take 1 bite. He has become super clingy wanting to be held all the time & won't even go to daddy, it has to be me. He stared saying "stupid" and "you are stupid" all the time, has a hard time getting to sleep, and started pointing things out like pieces of trash on the ground and dirt or marks on things and asking "what's that?"

 

So much of this reminds me of my older son, but no tics, although of my older sons first tics or compulsions was saying the f word hundreds of times a day and calling himself stupid.

 

I am so scared...I can't lose 2 boys to this disorder! I have an ongoing prescription for antibiotics...once my older son is done with his round should I give them to my toddler? I can't mention this to my husband...it took 2 years for him to finally be convinced our older boy has PANS to begin with and he would think I am crazy all over again if I did say something. But I know if you can catch this early enough with antibiotics sometimes it will never come back again! Thank you for listening...

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Off topic... why are guys always the ones who are so clueless? I'm the Pans savvy one in the house and my wife fights it all the time.

Unfortunately, there is no good news for you. Yes, PANS can run in the house, in the family and even if they are not blood related. My younger son has a case of his own with tantrums that last 45 minutes and historically high strep titers (never gets strep though). Lots of throat clearing tics.

 

Better run tests. He's young, maybe it can be checked quickly.

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Sorry to say yes- pandas runs in families- I have 2 daughters- both have it. There are many families on here with multiple kids suffering.

 

Many of us go through this with spouse (husbands usually). He will eventually get on board (somewhat).

 

Very hard on a marriage.

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We have two with PANDAS. While we didnt recognize it at the time each of our kids flared and suffered from PANDAS symptoms for 1-2 years before diagnosis. We can also look back and realize that parenting was difficult consuming time and emotional energy, and even before diagnosis neither mom nor dad was able to enjoy things that most parents do. The same goes for the kids. PANDAS has brought us very far from the life we imagined that all of us would be enjoying.

 

What I would like to know is this - diagnosis aside - is that if PANDAS presents early in a kids life, does it make the course of the illness more or less severe and more or less tractable?

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early intervention is important. One could thing is that you know what to do, so do it. Start with ibuprofen, find a dr willing to treat, and hope for the best.

Look at it this way, you are in a better position to help the second child.

I am sorry about your husband. It is really important that parents are the same page. I have the same problem with my wife. It seem sometimes that I have three PANDAS around me.

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Unfortunately, there is a prevalence in siblings. Murphy published research indicating a high incidence in siblings (upwards of 60% I think, can't remember), particularly in families where there is a history of chronic strep, rheumatic fever, or autoimmune disease. The correlation was even more significant when the history was on the mother's side.

 

If you are unsure, keep a daily log of your child's symptoms. At that age, it is often difficult to differentiate between PANDAS symptoms and a toddler testing their boundaries and typical developmentally appropriate stages. We kept a log grading each behavior we suspected to be a symptom on a scale of 0-9. 0-3 being normal, age appropriate behavior, 4-6 being worse than typical, but not unmanageable, and 7-9 being WTF happened to my kid.

 

It really helped us with our first PANDA in identifying patterns, and when we suspected our daughter had it 2 years later, it was our most helpful tool in figuring it out.

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