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Parents of PANDAS children- did yoi have PANDAS?


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going to flip it the other way...just my experiences and thoughts...not a doctor, just laying it out there..and JMHO.

dh has pandas... so passed via either parent..

dh still chronic strep...aso and antidnas still high...

his older brother had scarlet fever, and a mild ocd incident he remembers..horrible allergies

this is the one with the son i recently mentioned..with mild, mild, tics all his life..they never did anything for them or went to a doc for them(ie under reported)..recently came down with some stomach/digestion condition they started to treat around sept...when i saw him for a full week at thanksgiveing...NO TICS!

dh younger brother had impetgo so many times their mom cant remember...he has auto immune rheumtoid arthitis and psorsisi so bad he is on ramicade and still has it pretty bad

 

 

but its with tics...i BELIEVE tics are underdiagnosed, under reported, under follow through as root cause..as some may not seen it as interfereing as may that compared with ocd...

but at start of this almost 8 years now..ds eye blink sent me in a tizzy..as i quickly correleted it each and every time with a strep infection...and remittance w/i weeks of starting abx...

 

when we went to 1st neuro..as i wanted to prove ds had something..something with strep...

dh was diaganosed with chronic tic.>>>some other nuero would have called it ts...

and ds with TRANSIENT TIC.....REALLY!!!!!..this was when he was 5..and his blink turned to shoulder shrug...(that was his new "TRANSIENT TIC" ) that would only oddly appear with the presence of strep!!!!! (over the next 4 years)

i also think boy usuually present with tics more often

 

this onset at age 9..took to 2 more nueros...diagnosed with TS (BULL Sh*^&*%$$^!)

NO such thing...I HAVE TO SAY IT.....if it takes years...they just havent found the cause yet or figured how to treat it with the right protocal!...

sorry if I offend anyone..JMHO

other than physical trauma, reaction to a drug/prescription ...it then is some autoimmune, infection...correlation...

SORRY...i am tired of docs sending us down the wrong ave...or even suggestin things that send us down the wrong path ...like its from the moms side...(i know he means well, but really?).....now.. maybe..lets say i have lymes..(don't know, havent' checked, is it possible, sure)..and if that is the case...then my sons inherited response (from his father) is pandas/ts like, to that, allergies and strep and infections.....I realize there are quite a few who don't agree with me..but that is ok..it makes th..e world go round...we'll know in about 50-100 years if i was right!

Edited by Fixit
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I did not have pandas or OCD as a child or an adult. I did have a lot of treated strep and mono. I still get strep as an adult, did not realize that was fairly unusual. I go In immediately, I know when I have it. I got it a lot when Meg was young. So far I am strep free since she went on abx. Actually feel great, knock on wood. We do have anxiety in the maternal line, and OCD in paternal, but neither parent.

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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!! :)

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I did not but my brother -- now in his 50s -- had SC as a child and was on prophylactic penicillin for years. Since his teens we have not seen any residual symptoms. It was caught early by our childhood pediatrician in the 50s who was researching strep back then. My brother has not had any health problems since.

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I remember having lots of ear infections when I was little. No tonsil or strep issues I don't think--didn't go to the doctor much even if I was sick. (BUT my husband was sick a lot & had a T&A when he was little & still gets strep). One of my older sisters had a T&A when she was 4. My dad had diptheria twice when he was a child. Looking at myself now at 40, I'll admit that I've had OCD & perfectionism tendencies over the years, including childhood. Auditory sensitivity when I was little and now...also sensitive to smells & lights & other things most people don't notice. (I like to think I'm just very perceptive. LOL) I'm sensitive to meds. CANNOT take birth control since it messes with my mind (it's effective in the sense that hubby does NOT want to be around me, so absolutely no chance of pregnancy). Can't take SSRIs (have done low dose before & combinations, but to try to take a regular dose either knocks me out or causes mania/rage...that's how I got my living room redecorated---bought a loveseat on a buying spree then needed a couch, drapes & new paint). I got shingles the day after delivering my son...have had 3 early miscarriages since then. Right now I have an enlarged left tonsil but don't test positive for anything & have no pain. I did have my EBV run back in Oct when this tonsil wouldn't clear up & it came back negative for IgM but my IGG (past infection antibodies) were high...didn't have mono, so it must've hit me as a virus at some point. No allergies as a child but got hit by a freight train last spring when every tree flowered at the exact moment here in KY...got tested & did shots over the summer since I'm allergic to almost every single tree & grass/weed now. (Stopped taking shots so I wouldn't have to take ds to ENT office/petri dish.) Saw Factor V Leiden mentioned on another post (a test a dr ran by accident), and I am heterozygous for that meaning that I have one gene & a slightly higher chance of clots. (Could actually be the cause for missed pregnancies.) Overall, I seem pretty healthly despite this kinda scary paragraph I've written. I have considered getting my medical records & trying to figure out if I had any behavior issues (depression, insomnia, OCD, etc...) during illnesses as an adult. I am planning to do a blood analysis a Natural Doctor here in town. And if I could get an infectious disease doctor to run every test known to man, then maybe I'd relax (assuming no positive results obviously).

 

So...do I think I had PANDAS...probably not. Did I have bits & pieces of the crazy quilt of symptoms...yes & still do. But saying it's a maternal passage would be stretching it since the dads have a role in the creation too. I do wish they'd do genetic testing on the parents. It could be that the variables are so vast that it'd be an infinite combination of genes that wouldn't particularly give any usable results. And we all know how love usually wins out in the end anyway. Even Beauty fell for Beast...he probably had lice/ticks...certainly no PANDAS mom would come near him tho'. ;)

Edited by SarahJane
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No Pandas or OCD for me. But my side of the family has history of mitral valve prolapse (no dx of SC or RF but not much money to run to doctors either, so who knows). DH and his brother have OCD, sub-clinical. But no history of physical ailments.

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FYI, there was a similar thread on here just over a year ago: http://www.latitudes.org/forums/index.php?showtopic=5963

 

I never had the guts to respond to that one. I pretty much try to block my teens out of memory because it was such a painful time. But I'll 'fess up: yeah, since we found out what our oldest son is dealing with, it sure clarified some things from my own youth.

 

I was sick all time, caught every bug that came along, had tubes in my ears due to chronic infections, had T&A due to chronic infections. At age 10 or 11, I remember that suddenly everything just fell apart. I recall sitting in class, barely able to see straight because of constant headaches. Out of nowhere, felt a relentless state of heightened anxiety (bordering on agoraphobia) for no good reason. Very OCD-ish about schoolwork and grades. Withdrawn from former friends and social life. Seriously considered suicide.

 

I hate even thinking about those days now. The "cloud" shrouded me from 10 until mid-twenties, I guess, although things did start to improve after that. I've never spoken to anybody about this, not even my parents. Back then, people just didn't talk about psychiatric problems. The stigma was huge. I remember doing everything I could to hide the inner turmoil from family, friends, teachers, etc.

 

And - about 20 years ago - I was diagnosed at Mayo with Crohn's disease, an autoimmune disorder. I don't believe that's coincidental.

 

On the positive side, for our brave teen posters (EA, emmalily) - things did get better over time even without any kind of treatment. And every year since has been better than the last. With proper treatment, PANDAS doesn't stand a chance against you!

 

(Deep breath....) If you're reading this, then I guess I finally found the guts to press the "Add" button. :unsure:

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I drive my husband crazy...One of the things I do is reassurance OCD and the questions will be directed to him.

 

no mono here.

 

I cannot take tetracycline or larger doses of Vitmain A.They cause swelling of the optic nerves and makes me look like I have a brain tumor.

 

I also remember getting yelled at in the 6th grade because my handwriting got really bad.I had 3 teachers approach me in the hall and question what was going on since I used to write so nice.

 

Worried Dad, you're very strong. I'm proud of you.

 

Very interesting stuff!

 

Bronxmom2 - "pregnancy cured me". I wonder if that's the case for me too? Not that I'm advocating anyone running out to get pregnant, hoping for a cure. :o I would say that my mental health was much improved by my early twenties, but not really 100% until after I had my PANDAS DS7 at age 26. Well, maybe not 100%, like Vickie I still have OCD tendencies (which amuse my husband) and mild sensory issues. I also have rare side effects from meds and vitamins. I can't take vitamin E or I get a terrible agitated feeling. Tylenol and codeine do absolutely nothing to me. Gravol makes me wired. SSRIs made me manic. Etc. I haven't taken any meds in at least 10 years other than an occassional ibuprofen. I also had preeclampsia during the last 2 weeks of my 1st pregnancy. I don't know how much is coincidence, but there must be some value to studying PANDAS moms and looking for patterns. Great thread!

Edited by Vickie
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I am Emmalily's mother and I believe now that I had Pandas too. Mine though seem to come in my early twenties.

 

I know someplace under my content on this board is more detail so I won't go into that.

 

History: My dad we think had RF when he was 16

My sister had a ton of throat infections when we were growing up, I never seemed to get sick that way.

At around age 18 or so I had impetigo, and somewhere in my early twenties.

I became sick for about 8 years with what I now know was severe separation anxiety, ocd (checking issues,

and intrusive thoughts) and anxiety.

I have had step since I have felt well and do not remember it bothering me other than the sore throat.

I don't remember it having any effect on Emmalily at that time either, but she was young and she said she

does remember from age 4 or so that she had some ocd issues but they did not prevent her from anything

always thought they were just quirks. So hard to tell if my strep may have bothered her.

I feel well, I did struggle for 8 years, was well for three before becoming pregnant with Emmalily had a

great pregnancy and small set back after her birth, but nothing like the first time around.

Now I only see glimpses of it when I don't eat well, I clean up my diet and that seems to get me back on

track. Nothing too heavy. I don't notice it when I am sick at all that I can remember.

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FYI, there was a similar thread on here just over a year ago: http://www.latitudes.org/forums/index.php?showtopic=5963

 

I never had the guts to respond to that one. I pretty much try to block my teens out of memory because it was such a painful time. But I'll 'fess up: yeah, since we found out what our oldest son is dealing with, it sure clarified some things from my own youth.

 

I was sick all time, caught every bug that came along, had tubes in my ears due to chronic infections, had T&A due to chronic infections. At age 10 or 11, I remember that suddenly everything just fell apart. I recall sitting in class, barely able to see straight because of constant headaches. Out of nowhere, felt a relentless state of heightened anxiety (bordering on agoraphobia) for no good reason. Very OCD-ish about schoolwork and grades. Withdrawn from former friends and social life. Seriously considered suicide.

 

I hate even thinking about those days now. The "cloud" shrouded me from 10 until mid-twenties, I guess, although things did start to improve after that. I've never spoken to anybody about this, not even my parents. Back then, people just didn't talk about psychiatric problems. The stigma was huge. I remember doing everything I could to hide the inner turmoil from family, friends, teachers, etc.

 

And - about 20 years ago - I was diagnosed at Mayo with Crohn's disease, an autoimmune disorder. I don't believe that's coincidental.

 

On the positive side, for our brave teen posters (EA, emmalily) - things did get better over time even without any kind of treatment. And every year since has been better than the last. With proper treatment, PANDAS doesn't stand a chance against you!

 

(Deep breath....) If you're reading this, then I guess I finally found the guts to press the "Add" button. :unsure:

 

Worried Dad I feel your pain. So glad you got through it all. I too don't think the Crohns is coincidental. Thanks for giving Emmalily hope as it is always better coming from someone other then your parent!

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When my ds got sick, my mom and I put our memories together. From what we remember, it looks like I probably had at least one pandas episode as a child, but then nothing else of significance. Putting more pieces together, I feel like my two sisters probably had it, but not my two brothers. One sister was anorexic, and one has some undefined autoimmune condition to this day that nobody can quite pinpoint. I also find it interesting that my father has alzheimers which is the result of protein getting through the blood brain barrier. And since pandas is the result of antibodies getting through the bbb, I feel like the pandas has probably come down from my father.

 

LaraM...you also mentioned your dad having Alz. I often wonder how many other families are affected by both. Feeling like this goes with what seems like more and more people are getting alz and, potentially, pandas. What are we doing as a society to the blood brain barrier to weaken it?

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Not really sure. I know that I have struggled with ADHD, although I have never medicated for it and I developed my own coping mechanisms for it.

 

Also, after the chicken pox as a child I developed reye syndrome which is a type of post-viral encephalopathy for lack of better words. When my mom describes how I acted during that time it sounds a lot like my boys during pandas.

 

My brother had kawasaki as a child and I have evidence to believe that his 2 daughters (and possibly his son) have had pandas exacerbations.

 

My cousin on my mom's side had an acute, transient episode of anorexia that lasted for one year as a teeneager. My other cousin (her sister) has a child with OCD/tourette's/possible autism that I feel very strongly may be related to pandas but she does not believe so.

 

With all that said, I do still think that I may have a mild form of pandas. I do get some subclinical tics/compulsions when I and my boys get strep.

Edited by Stephanie2
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I wonder... I have thought that if I had all the bloodwork DS has had, I'm sure I'd have the same immune deficiency. I've just always been on that gets EVERYTHING that may be going around.

 

I'd also like to forget my teens and even more sure my parents would ;) I was seriously depressed and attemped suicide several times. I was also a cutter. Oddly - I 'grew out" of it all around age 18.

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