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Parents of PANDAS children- did yoi have PANDAS?


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I don't have OCD or PANDAS and none in my side of the family. I never had strep throat and don't remeber being ill that much. My sibs used to get strep and tonsillitis together at the same time, I remember twice as a kid. My mom diagnosed with RA in her fifties ( autoimmune) and I was dx'd with mild Ulcerative colitis ( also thought to have an auto-immune component) in my late 40's. Currently in remission without any meds.

DS with PANDAS ( and Lyme, Bartonella) is a fraternal twin. His twin doesn't have PANDAS. Their father has OCD which became more apparent after their birth, which he finally took meds for, but has since come off his meds in the last year or two .

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Oh yes, I believe I do have PANDAS and did as a child. My husband is convinced he also had PANDAS as well. What is very timely about all of this is that my husband and I keep testing with elevated titers (mine in the upper 300's, his in the upper 200's). I have been severely depressed, increasingly OCD, can't sleep, moody, even urinating frequently (4-5 x's per night :()!! I had always attributed my depression etc. (except for the urination at night) to the stress from having PANDAS kids and my father passing away. (Side note--My Dad had mild Alzheimers in September 09. He tested positive for strep throat and completely tanked. He went from taking care of himself, carrying on a conversation and forgetting one to two words, to no intelligible speech, incontinence, and losing the ability to care for himself completely. By December 09, he had to be put in a nursing home. This was the same month my youngest had his first major PANDAS exacerbation. In January 2010, my father passed out, broke his neck and ended up in a hospice facility. He passed away later the month. I am mentioning all of this because after DS6 developed PANDAS, I started paying attention to strep. Could my Dad's sharp decline be a result of the strep infection in September 09???).

 

During our last phone consult with our son's PANDAS doc, I asked him if we could go ahead and get treated as if we are carriers. He put us on two antibiotics. We're still taking them, but I have to tell you I feel like a fog has lifted with me. I don't feel so depressed, I don't have to do any OCD things, I am less moody. I have even been sleeping!! Please understand, the only way I would get any sleep for months and months was either by taking tylenol PM, benadryl or simply sleep. Even with that, I was getting 3-4 hrs., waking up and not being able to go back to sleep or sleeping for maybe another hour or so. The other day, I slept 9 1/2 hours straight...no waking at all!! Also, because of the indication on the meds, I haven't been taking anything else (no sleep aids, 5 HTP--nada). Maybe it is too soon to tell, but honestly, I feel different...better. Also, my husband has reported that he doesn't feel the need to even things up that he touches and can walk away from OCD tendencies. I think that is huge! His history is pretty classic PANDAS--separation anxiety, rages, OCD, frequent strep infections. I think I had my own room reserved at our pediatrician's office because of my frequent strep infections. I know I was more on the ADHD side, but also fearful of being alone. When we were growing up, there obviously wasn't a name for it though. We were both just labeled difficult/sensitive kids.

 

The good news is, both of us function normally. I taught in public schools for eight years and my husband is a mid-level manager for an engineering company. I am just saying, if we actually had PANDAS as kids and made it through o.k., I have to believe that our children will as well. I don't know why things seem worse for our children though--maybe two parents with PANDAS, docs less inclined to prescribe antibiotics as when we were kids etc. We have a fabulous doc now, but it would be awesome if he was in the same state!! :)

This is totally fascinating! I also feel BETTER on antibiotics!

I did have strep a lot as a little child, after that I think I went under the radar. But I remember in high school I had a knee pain severe enough the doctor wrote a note so I didn't have to do PE all year, but they never gave me a reason. I also started having severe headaches. And every now I then the skin between my finger would just start peeling (I just saw a post about that a couple of days ago... it's strep related!). I've had my mood issues off and on during these years, and started having more depression about two years ago. I do believe I have strep issues (just got my tonsils out!), but I also know I have Lyme, so I don't know which to blame. But, coincidentally, the last couple of days I have not been feeling great (even though I had Bicillin shots last week and I'm currently on Cipro), and my non-PANDAS (supposedly) 15yo tells me his intrusive thoughts are coming back (he's had this off and on). PANDAS ds is not doing great, and PANDAS dd was heading downhill, but she got a Bicillin shot and that seemed to halt the deterioration... I really should take everyone in again, but I'm so tired of this!

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Yes, I had PANDAS. It was definitely strep induced and was diagnosed as Sydenham's Chorea...but it was really more like PANDAS in retrospect. Both my kids now have PANDAS, and this stinks. As I have posted before, at about the age of 15 and especially later at 18, it became a non-issue. I would say I am 95% clear of the disorder, although some days may be more like 90%...but it is still a non-issue. Was until my kids got it, especially ds12.

 

I do wonder what my life would have been like without PANDAS. Would I have excelled in school more? Would I have had less social anxiety? Less worry with trying new things, because of fear of failure, not doing whatever exactly right. PANDAS robs, but it doesn't defeat, at least it did not with me. A lot of folks struggle with many, many types of illnesses. I just hope my kids, especially my son can get past this like I did.

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After years of chronic strep throat & tonsillitis, in 6th grade I began to have joint pains-mostly in the legs and some anxiety/depression. (Prior to that was seen when I was in elementary school by an orth. doc due to leg pain as well-he said it was simply growing pains). I was dx at CHOP with fibromyalgia at 12. I ended up with a tonsillectomy the next year in an emergency situation where an abcess grew very large on the tonsil that it began to block my airway. I have no symptoms of fibromyalia now at 35-never did after my chronic tonsilitis cleared up. I am left with a touch of OCD (that type A personality) which comes along with anxiety. I have no doubt I had PANDAS....AS did my Dad (OCD, sick always as a child-wouldn't step on the cracks as a child per my 85 yr old grandma, who herself is OCD) and probably my sister, who ended up with joint pain in elementary school and some odd tics. She is now 27-chronic sinus issues, sore throats and recently tested for Rheumathroid Arthritis (no results yet)-I have no doubt this is hereditary through my Dad's family. Now both my little girls, 4 & 6, have PANDAS-the same as all of us before them-we just have a name for it now. So thankful that we are blessed to be in a period of remission (with daily antibiotics). Amy

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After years of chronic strep throat & tonsillitis, in 6th grade I began to have joint pains-mostly in the legs and some anxiety/depression. (Prior to that was seen when I was in elementary school by an orth. doc due to leg pain as well-he said it was simply growing pains). I was dx at CHOP with fibromyalgia at 12. I ended up with a tonsillectomy the next year in an emergency situation where an abcess grew very large on the tonsil that it began to block my airway. I have no symptoms of fibromyalia now at 35-never did after my chronic tonsilitis cleared up. I am left with a touch of OCD (that type A personality) which comes along with anxiety. I have no doubt I had PANDAS....AS did my Dad (OCD, sick always as a child-wouldn't step on the cracks as a child per my 85 yr old grandma, who herself is OCD) and probably my sister, who ended up with joint pain in elementary school and some odd tics. She is now 27-chronic sinus issues, sore throats and recently tested for Rheumathroid Arthritis (no results yet)-I have no doubt this is hereditary through my Dad's family. Now both my little girls, 4 & 6, have PANDAS-the same as all of us before them-we just have a name for it now. So thankful that we are blessed to be in a period of remission (with daily antibiotics). Amy

 

Interesting history Amy. I never did buy the theory it was ALL the mother's side hereditarily. I have that similar touch of functional OCD (and my goodness, please introduce me to an SLP who doesn't.) But NO auto-immune issues on my side whatsoever, those are all on my husband's side; his father had MS, a few of the girls have thyroid dysregulation, great grandma had RF. I guess our children made the perfect genetic predisposed storm that met the right microbe bolt of lightening.

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