Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

colleenrn

Parents of PANDAS children- did yoi have PANDAS?

Recommended Posts

My 4 children have PANDAS. It was not until my oldest child was diagnosed with PANDAS in 2001 that I realized I had PANDAS as a child. I still deal with some issues (minor tics when I am sick)and some minor anxiety. I am wondering how many of us parents had/have PANDAS. IMO, it has to be a large number.

Colleen

Share this post


Link to post
Share on other sites

Whoops. Meant to hit review, but hit send instead. I was trying to make a poll of how many parents of children with PANDAS also believe they may have had or still have PANDAS. Not sure what happened with the poll- guess I need to figure out how to do it correctly.

 

I didi not realize until I was 31 years old that PANDAS is what I suffered with from age 5 or 6 until the age of 14-16.

 

TIA.

Colleen

Share this post


Link to post
Share on other sites

Funny, I have been wanting to ask this for some time now, but thought I shouldn't. Answer for me, YES.

 

I believe that I have had "issues" associated with infection since about grade 2. I was very sick as a child, with allergies, strep related illnesses, and asthma. I had many severe chest infections into my twenties. The thing I always felt so uncomfortable about was the rages I would have. I did self-injure as a child during a rage. I had very serious attention issues (ADHD not known then). My mother had scarlet fever before having me. She also has a sister who had rheumatic fever. I have never thought too much about it, other than I must be "moody" and have a horrible temper.

Share this post


Link to post
Share on other sites
Guest fr88

I am assuming my children would have PANDAS since I have it. I currently don't have any. I emailed Dr. K this question and he said that he only followed one patient up until she had children and her child did in fact have PANDAS. He also told me that he believes PANDAS is passed down through the MOTHER and extremely inheritable.

Edited by fr88

Share this post


Link to post
Share on other sites

Yes - whatever my son has I had as a teenager. I was a healthy, happy child, although I remember my brother being chronically ill. I got sick around age 12-13 and was sick for over a year with one thing after another. After that I had depression, anxiety, rage, and mania when treated with prozac. Due to the age of onset and family history of depression and anxiety I was diagnosed bipolar. I had never-ending physical pains and complaints. I saw a rheumatologist, bone specialist, etc. They never found anything significant. I broke my foot at age 18 which led to RSD - reflex sympathetic dystrophy. The specialist who treated my RSD said "You have some kind of autoimmune thing going on. You might never know what it is." Then in my early 20s I gradually became well - physically and mentally. I have occassional flare-ups of pain, sometimes with years inbetween. It always scares me, but always goes away after a few days.

Share this post


Link to post
Share on other sites

I'll have to answer no. I did, however, have chronic strep infections (5-6 per year) and was hospitalized in junior high because they couldn't eliminate the infection. (Turns out my sister was a carrier, always had the bacteria when I got sick, but never had a symptom.)

 

As for any OCD/tics/ADHD/rages, etc... Can't say I had any of that as a child.

 

However, in my adult years I have developed several anxieties and OCD tendencies. Primarily OCD about how clean my house is and how to get it clean. But no strep to go along with it.

Share this post


Link to post
Share on other sites

We adopted our son and have no family medical history on him. Its not relevant for me to answer but I did not have PANDAS. I had a few strep infections as a child. Always took erythromycin (I have a penicillan allergy) and it always cleared up. The last strep I recall was when I was a senior in high school.

Share this post


Link to post
Share on other sites

For you parents who think you had it but then it cleared up for you, I've read here and on another post like this from a while back, a sort of vague answer that things started feeling better in your "twenties." I was wondering if you could weigh in on whether you think it was early twenties, mid twenties or late twenties. I'm doing really well on my proph abx, but I would like to try going off at some point to see if I have "grown-out" of PANDAS. Just wondering when that might be :D Thanks for the input.

Share this post


Link to post
Share on other sites

I definitely had it and still have it-- I think many of the parents on here do, and it further complicates our ability to cope with and for our children.

 

I had pneumonia as a baby (almost died), then chronic bronchitis, irrational feelings of guilt as a young child, then a bad case of mono as a teenager and finally mumps at age 17-- and at this time also extreme emotional problems that no one could explain (my family thought I was faking and I also thought I was faking and felt horribly guilty) (also terrible acne which certainly made the emotional pain and the OCD worse) and by age 19 I was in and our of psychiatric hospitals several times because I could not thinking about suicide. I had a full scholarship to NYU and continued to get straight As even while in and out of hospitals and unable to shake thoughts of suicide.

 

Emmalilly-- In my twenties I did begin to feel better, though I was still emotionally hobbled, I functioned, I wrote several novels (which I am still proud of) and no longer caused embarrassment or inconvenience to my family. Pregnancy at age 31 cured me.

 

I remained symptom-free-- HAPPY for the first time in my life-- until age 35 when strep hit my son. Now I am struggling again -- rages and obsessions etc-- though on some level it is nice to know that I was not faking it as a child!

 

So perhaps we could advocate surrogate motherhood as a cure for young women??? (just a joke obviously...)

Share this post


Link to post
Share on other sites

I just feel that there is so much to learn by studying us parents who had/have PANDAS/PITANDS. My PANDAS began around 5 or so. I mainly had tics and anxiety- do not remember any OCD. When I was 6 I went through a period of anorexia- I refused to eat anything for over a week, but someone began eating again. My theory is that during that time of refusing to eat, I must have had an ear infection or strep, was treated with antibiotics, and the symptoms subsided. I clearly remember having an increase in tics that had seemed to go away for a while (Don't remember how long) when I was in 8th grade (age 13) and part of 9th grade. For me, it seemed to "go away" by age 15 except for minor tics when i am sick and probably also when I am stressed. I wrack my brain trying to rtemember in case it would help my kids, but I did not even know I had it until 9 years ago.

 

I also had multiple pneumonias, ear infections, strep, mono. My sister has3 kids- 2 are definitely PANDAS and possibly the third child also. My brother has 2 children who get strep a lot and at a very early age, but so far they don't seem to have PANDAS (ages 3 and 8). My mom had scarlet fever as a child and rheumatic fever as a young adult (18 or 19).

 

 

I want PANDAS researchers to research me, to research any parent who had PANDAS b/c I think there could be so much learned from us. I tried to get my old medical records from my pediatrician and they had already been destroyed. I will offer myself up for any testing if anyone knows of any genetic studies going on or any physician interested in looking into parent's histories.

 

Colleen

 

 

 

That is very interesting that Dr. K thinks it is passed by mother. My husband is ADHD (NEVER diagnosed or treated...) so I was not 100% sure if it all came from my side. I guess we both could have had PANDAS, with his symptoms primarily being ADHD symptoms.

Share this post


Link to post
Share on other sites
Guest fr88

For you parents who think you had it but then it cleared up for you, I've read here and on another post like this from a while back, a sort of vague answer that things started feeling better in your "twenties." I was wondering if you could weigh in on whether you think it was early twenties, mid twenties or late twenties. I'm doing really well on my proph abx, but I would like to try going off at some point to see if I have "grown-out" of PANDAS. Just wondering when that might be :D Thanks for the input.

 

 

You can't outgrow an autoimmune disease. It will always be there. B-cells remember no matter what age you are.

Edited by fr88

Share this post


Link to post
Share on other sites

I wonder. One may say you would know but sometimes the mind has ways of distorting memories to help you cope with the past. Every year, I had multiple dx of tonsilitis as a child. The doc never did strep tests, always gave penicillin when I had white on my tonsils. I had/have some OCD tendencies, had some sensory issues (especially with noise...I have sensitive hearing, couldn't go to movies as a child, and the buzzing sound from department stores lights was like nails on a chalk board yet no one else would say they could even hear them), rages, anxiety, separation anxiety, etc. Maternal side has history of autoimmune disorders. I think the issues I remember having helped me know ways to work my son when he had problems. I, myself, have had rare side effects from meds and certain vitamins results in severe inflammation and I had preeclampsia in first pregnancy so I know I have some type of suspectibility to inflammation. Maternal side has hx of clinical OCD and other mental disorders. It wouldn't suprise me if I did/do.

Edited by Vickie

Share this post


Link to post
Share on other sites

I forgot to mention about history of strep. My maternal Grandmother almost died from strep as a child and lost hair and some hearing from it. My maternal aunt's child (my cousin)is a known strep carrier.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

Well here's what I was told and what I remember. I had scarlet fever age 2 (or was it 4 - don't remember). Somewhere around that age I stopped eating fruits or veggies abruptly. No one knew why, but I remember being afraid of them as an older child and completely grossed out even looking or smelling. I had to teach myself to eat veggies again at age 22. It was a huge effort for me to cut a pear for my my son, because I would get the juice on me. No idea why this was so horrible - it just was. Facial tics started around age 8 I think. No idea if this corresponded to any illness or not. I do remember being on the pink medicine (penicillin? tasted like bubble gum) quite a few times. My parents were going through a divorce at the time and figured it was stress. Still have tic urges to this day. Learned to supress them mostly, but apparently still do the eyeblink unconsciously when I am stressed. Age 16 caught mono and strep throat. Don't remember any emotional side effects specifically linked. Was a depressed, angry teen. Somewhere that year though, after those illnesses, I began leaving my purse in strange places. Like all the time. Losing my car in the parking lot, keys, forgetting to bring home textbooks. A lot of what I recognize as ADD symptoms. Also some compulsive drawing (stilldo) and chewing of pens and pencils. Also as an adult I learned to recognize my own sensory disorder to noise - it's worst in the morning when I first get up or sometimes late at night, but the volume on everything gets turned up and I can't filter out the small noises. Even now my typing seems SO loud to me. Sometimes it's painful. Currently diagnosed with Fibromyalgia.

 

So I don't know if I can say "Yes, I had PANDAS". But I can say there are somethings I look back on now that certainly fall into that "area of the brain" and it's dysfunction. Genetic testing studies have been done on Tourettes. are going on for OCD. Maybe someday we'll get to that point with PANDAS/PITANDS (gosh I hope they change that name soon!)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...