Realizing YOU passed it onto your child

[thereishope]

This really isn't a question or anything, but more that I just need to post this somewhere. I've suspected that PANDAS was somewhere from my family tree, not my husband's. On my side, there is a long history of neurobiologic problems, autoimmune problems, the list goes on and on. My Maternal Grandmother almost died from strep as a child. A time when antibiotics for it were not yet discovered. Then, yesterday I received an email from my Maternal Aunt that pretty much gave me the confirmation I needed to realize the PANDAS "gene" came from me.

 

My cousin has BDD (Body Dysmorphic Disorder). This is an OCD spectrum disorder. He is in his 20's now but this surfaced I believe in junior high. It is dibilitating for him. He's even gone through brain surgery to try to find relief. Well, I finally got the nerve to ask my aunt if she ever thought, in hindsight, that he could have had undiagnosed PANDAS.

 

She responded by saying that her kids were never sick. Only colds. But now she realizes through me that people don't have to have symptoms to have strep and she wonders if he ever did have strep as a child. Then mid-email, she remembers that his sibling (my other cousin) once had a cold and went the the doctor for it. They ran a culture for strep and it came back positive. Over the next 2 months, she kept getting positives and the doctor deemed she was a strep carrier and no longer to be on antibiotics. So, she continued to walk around being a strep carrier. When I read that, shivers went down my back. My aunt said she thinks it might be best not to share that with my cousin with BDD. I understand why. He's been through such a bad time with this. To tell him thatit possibly could have been haulted could send one over the edge.Perhaps when the time is right, she will share.

 

Anwyay, my cousin's BDD is stable right now. My aunt said that the brain isn't fully developed until 25 years old so that is in his favor.

 

So, in my heart that was the final confirmation I needed to realize that I was the one who passed PANDAS onto my son. In one way, I'm not worked up about it. But I also hate that technically I did this to him. My aunt has said in the past that her son was just born too soon. Meaning in a time prior to all these new discoveries of the brain. I guess I need to remain thankful that my son was born in a time while these discoveries are being made and will continue to be made. I have so much hope for him.

 

I wonder if some day they will find a marker or something that will tell a parent if a child is a "carrier" for PANDAS. I believe it is genetic. I know that will not happen in this generation. But hopefully someday.

[smartyjones]

Vickie - i know what you are saying and i'm not trying to belittle it. please realize all the other things you have passed on to him. is he sweet, funny, smart - what is he good at that also came from you?

 

my brother is a diagnosed schizophrenic - we have a family history of it. (which i find interesting b/c i also think my nephew has undiagnosed pandas for a number of year - i've seen some mentions of schizophrenia having possible bacterial/viral link) i once took part in a dna study and asked the counselor about percentages and chances of me having a child with schizophrenia. her reply was that i could follow it up and end up with a .0x whatever chance but really what weight would that have in my decisions to have children.

 

i think it's certainly interesting to look back in the family tree for what it can tell us to move forward but to keep it in perspective that it is one thing among many others and no person or decision is really defined by single factors.

 

lately i've thought of that song from a number of years ago that was a college graduation speech put to music. it stated something about how it's never the things that we worry about that get us - it's the mack truck that smacks you out of nowhere on the highway. I think we've all been smacked by that mack truck with pandas. And even if you knew it was a slight possibility to get you - would you have changed your decisions?

 

you've given him plenty of good as well as this whacked gene!

~Kathy

[Kayanne]

I have been thinking about this a lot lately too. I know that genetically she got the vulnerability to strep from my side....My Uncle and Grandmother on my mother's side both had Rhumatic Fever. But my husband's side of the family has a history of anxiety, mild ocd, panic disorder and depression. My husband has been diagnosed with Panic Disorder.

 

But we have four children, and strep was rampant in my house this spring. Why didn't my other kids have PANDAS symptoms or at least the full blown shut down that my DD6 had?

 

You see, I'm not fully convinced that the strep didn't effect my other kids...it's just very, very minor that everything looks normal...DS 4 1/2: just a difficult phase--he doesn't really like to draw--he would rather just scribble...DD 8 1/2: an emotional phase with a lot of crying, and everyday some complaint about pain (usually when we ask her to do something she doesn't want to do)....I am seeing PANDAS everywhere, and my DH thinks I am looking far to hard for it. He is fully supportive of me with regards to my PANDAS daughter, but he is reluctant to put her through any tests and such because she is doing so well. I know he would not agree to having my other three kids go through a blood withdrawl for the Cunningham test because I have a weak suspision that they have PANDAS...

 

Sorry about that side note...so I've also asked myself how come it seemed to completely skip my generation?

 

And the only conclusion that I can make is that it has to do with how aggressive the strep is treated.

 

When I was a child, I was told numerous times that Uncle Bobby had to be in the hospital for six months because he had a sore throat that he didn't take medicine for. If my or my sibling's throat even looked a little red, my mother took us to the doctor immediately.

 

I don't know when the rapid strep test became popular, but I was never swabbed as a child (I'm 36). If the doctor was reluctant to prescribe antibiotics, my mother told them about my uncle, and then I was given the antibiotics--doctors knew that untreated strep and family history contribute to RF. I can tell you of at least two times when I took advantage of that....sucked on my throat a little to miss school, but had to take medicine.

 

So, my mom and her siblings were told to make sure strep gets treated right away to prevent RF--thus the generation skip.

 

Three things are thought to have to happen in order for RF to rear it's ugly head: 1) the right strep strain, 2) genetic vulnerability, 3) and strep that is not properly treated. With the use of antibiotics, it has declined dramatically.

 

Back to why did only one of my children get PANDAS. I believe it all has to do with how the antibiotics were prescribed in the first place. DS4 and DD8 were the first to test positive, and they were each put on a 10 day course. Next I brought in DD6 (my PANDAS child) and DS17mos. Neither were tested....doctor said he was going to assume it was strep because of my other two (and I had also tested positive), however; he only prescribed a 5 day course of OMNICF for them both. A five day course is the low end of the treatment range...It never occured to me to disclose the genetic link to RF because at the time, I didn't really understand it and hadn't thought about it for years (in fact, I kind of thought that my mother was a little fanatic about it).

 

PANDAS D6 was back in the office 8 days later...(according to Swedo five days is all it takes). This time they prescribed 10 days of amoxicillian--a step back to a weaker antibiotic, and if it was intracellular then forget it. It was only a few more weeks that we started to see the PANDAS symptoms. I believe her initial symptoms were mild compared to some of the stories that I read about---particularly the ones whose children started with PANDAS symptoms, and then found out about the strep.

 

But the ped's office did get it right after that. The third round of positive tests DD8, DD6 & DS4 were put on Rifampin simultaneouly with other antibiotics--PANDAS DD6'S rifampin was liquid, and I think some settled into the bottle so that she didn't get all of it. DS17mos never came up positive on rapids and cultures so he was only on OMNICEF for 5 days in the beginning. PANDAS daughter needed one extra course of anitbiotics: 10 days of clindamycin 300mg/3Xs day.

 

I really believe that the ped's office being aggressive with her strep has made all the difference. The last time she tested positive, the doctor said her throat looked "beautiful", but they didn't put forth a "carrier" theory. But at this time we already suspected PANDAS, and the peds office had set us up at CHOP with an appointment.

 

I realize that this is an extremely long post, but I really think that antibiotics are the key to either preventing it, making sure the autoimmune mechanism is slowed down and eventually stopped because if we don't clear the strep...where does that leave us...constant antibodies assulting the brain.

 

I also would like to note that I think many more very, very mild issues could possibly be attributed to strep...that's why I put in the paragraph about my other children's issues. It could potentially revolutionize mental health treatments.

 

~Karen

[Megs_Mom]

I think we have all been where you are in one way or another. I know that every step on this path is hard. But PANDAS is just like any other autoimmune disease. It is a real knocker - but it can be overcome. You are so right - that the path that we are on is hard, but it is so much better than the generations before us. There is no way to know what you pass on to your children - we certainly have anxiety disorders on both sides of our family - so we both "gave" it to her. Not sure why it skipped me, maybe because my strep was alway so obvious, and therefore so aggressively treated - but I am quite sure my mom had it as a child, and it effects her today. We talk about it now. And my husband's side has tons of OCD. But who knew all that, when my husband and I were dreaming of a family!

 

Now she is a smart funny wild little girl, and I have no idea what contributions she will give to the world. I hope that the main one will be joy. Having a child is always a crap-shoot (pardon!!) - anything can happen in this life. I would not trade her for the world, and even a marker would not have prevented her - but it certainly would have made me more aggressive about treating her ear infections!!!

 

I know the path you are on - and only you can travel it. But I would encourge you to worry less about prior generations. It is an exciting time to be involved with changing the path that our grandchildren will follow. It is not the path we would choose, but it is the one we have been given.

[P_Mom]

Oh..Kathy...I like that about the mack truck.

 

I am a worrier....the anxiety type, impending doom type worrier.....have been for quite a while now. That statement really struck me....the things I worry about, well,........90% of them NEVER happen....the PANDAS.....I never had so much as a tiny inkling there may be something wrong with my children.......my older son was 7, younger son was 4 and we were crusing along just fine. I worried about all the stupid stuff back then, ya know? Then one day, PANDAS, THE MACK TRUCK, did slam into us out of nowhere!!! I know you can all relate. I was totally blindsided....no idea what happened to my son(s)....falt on my back for about a month....seriously! The good news....I don't worry so much about the small stuff now that I have PANDAS to consume my worries. That is half joke/half not!

 

By the way.....I never had any doubt it was my side, meaning me, that passed this to my kids. I can't/don't feel quilty because I had no clue.....I wouldn't trade them for the world.....PANDAS and all. I like what you pointed out about all the other good stuff they get from us! They did get a lot of good stuff, too! I know we will get through it.

 

What I do wonder about is my grandchildren...........here is what I think about (I think too much)....my kids do not know too much about their disorder...they know what is necessary at this point...they are both doing very well right now and are fully functional. They do know about tics, etc., and that they take Pen Vk to help them not get strep because they know they can have a bad reaction to strep (tics, etc.), however, of course, I have not gone into detail and explained the genetics of it all...they are young. I wonder how I would have felt if I knew beforehand that I may pass this on to my children....knowing me.... I still would have had them, no doubt, but, I would have been really worried....watching like a hawk....probably not enjoying the years prior PANDAS as much because of my worry. I am actually glad that I did not know. But, that is me. I go back and forth in my head if they should know about the probability of passing it on to their kids. Would that put too much worry on them/their wives? Would it make them decide not to have kids ?

I am thinking they should know...then they have the choice...and, then they can be aware and know what to do if it should happen to one of their children. Hopefully by then this will all be easily recognized and treated........you would think. But, man......that stinks.

[Megs_Mom]

Oh..Kathy...I like that about the mack truck.

 

I am a worrier....the anxiety type, impending doom type worrier.....have been for quite a while now. That statement really struck me....the things I worry about, well,........90% of them NEVER happen....the PANDAS.....I never had so much as a tiny inkling there may be something wrong with my children.......my older son was 7, younger son was 4 and we were crusing along just fine. I worried about all the stupid stuff back then, ya know? Then one day, PANDAS, THE MACK TRUCK, did slam into us out of nowhere!!! I know you can all relate. I was totally blindsided....no idea what happened to my son(s)....falt on my back for about a month....seriously! The good news....I don't worry so much about the small stuff now that I have PANDAS to consume my worries. That is half joke/half not!

 

By the way.....I never had any doubt it was my side, meaning me, that passed this to my kids. I can't/don't feel quilty because I had no clue.....I wouldn't trade them for the world.....PANDAS and all. I like what you pointed out about all the other good stuff they get from us! They did get a lot of good stuff, too! I know we will get through it.

 

What I do wonder about is my grandchildren...........here is what I think about (I think too much)....my kids do not know too much about their disorder...they know what is necessary at this point...they are both doing very well right now and are fully functional. They do know about tics, etc., and that they take Pen Vk to help them not get strep because they know they can have a bad reaction to strep (tics, etc.), however, of course, I have not gone into detail and explained the genetics of it all...they are young. I wonder how I would have felt if I knew beforehand that I may pass this on to my children....knowing me.... I still would have had them, no doubt, but, I would have been really worried....watching like a hawk....probably not enjoying the years prior PANDAS as much because of my worry. I am actually glad that I did not know. But, that is me. I go back and forth in my head if they should know about the probability of passing it on to their kids. Would that put too much worry on them/their wives? Would it make them decide not to have kids ?

I am thinking they should know...then they have the choice...and, then they can be aware and know what to do if it should happen to one of their children. Hopefully by then this will all be easily recognized and treated........you would think. But, man......that stinks.

 

I love this mack truck analogy too! Here is the truth - you will have no choice about telling them, so you can quit worrying about that! Can you imagine how you would feel if they had kids and you did NOT tell them? You'd have a nervous breakdown. Besides they have to know. So they'll worry more about strep & less about diaper rash! You'll tell them more when they are older - and hopefully when you have been some small part of the cure. Whether by helping someone else, raising money for research, educating a doctor - telling your story. You are a part of it. The help is coming.

[P_Mom]

Well, okay, I agree I will need to tell them...but, I wish I had a switch that I could use to turn off the worry.....that won't happen! I was thinking in the beginning that if I didn't tell them, that they would still be covered because I would be there watching their kids like an insane person, ready to launch if anything "came up." I know that is not reasonable...what if I am not here. And, what if they then resented me because "I should have told them beforehand."

Geez, the more I write about it, the more obvious the answer is!!

[FallingApart]

Vickie, your post has made me realize something possibly very important! And, I don't think you should be beating yourself up about it. ALthough, how can you not. I know that is what we do.

 

But, I just realized with 100% certainty that my sister had undiagnosed PANDAS. And my uncle had RF as a child. Should I do anything with this information? Does it mean anything? Or is it just a genetic predisposition?

[thereishope]

I think with me, somewhere in my head and heart I knew something was going to happen with one of my children. That instinct was always there. When PANDAS entered my world, it was as if the waiting had stopped and I knew what I was destined to face.

 

I do not regret having my kids. Never. It's the same when you go thorugh testing when you're pregnant for Down's and such. I got the testing done, not because I would terminate the pregnancy if positive, but so we could be prepared. I also found out that way that I was a carrier for cystic fibrosis. Luckily, my husband is not. But, that is good info to pass onto my kids as they enter adulthood.

 

I definitely plan on telling all my kids about PANDAS. They need to know. Right now they're young, so I will wait until they are older. I lalso plan on sharing all my journal entries with my son when he's ready. I want him to realize and know what a strong person he is. If he can defeat this, he can do anything.

 

As for my other kids, they have had strep w/o any PANDAS symptoms surfacing,. I always assumed that meant no PANDAS. But now I also see maybe I just caught there's super fast before damage could be done. Like my PANDAS son, they did not have symptoms of strep. I brought them because my PANDAS son tested + on the rapid. Something for me to think about.

[P_Mom]

Fallingapart....you said your sister "had" undiagnosed PANDAS ......did she grow out of it?

[thereishope]

That's the thing, I don't know what to do with this information. It's a bad feeling to think you may have a piece to the puzzle but there's nothing you can really do with it. You can at least "warn" and inform those on that side of the family. But as I learned when I told family about being a cystic fibrosis carrier, they get very defensive. People really protect their family trees. I thought I was being helpful, and to my suprise I got a lot of bad responses back.

 

 

 

Vickie, your post has made me realize something possibly very important! And, I don't think you should be beating yourself up about it. ALthough, how can you not. I know that is what we do.

 

But, I just realized with 100% certainty that my sister had undiagnosed PANDAS. And my uncle had RF as a child. Should I do anything with this information? Does it mean anything? Or is it just a genetic predisposition?

[dcmom]

I cannot find anyone to trace pandas back to. I mean on my side- there is some autoimmunity in underactive thyroid- but that is it. On my husband's side- he says he remembers having strep every year- so maybe there is no immunity to strep. But either way- I know pandas stinks- but there are so many worse problems.... I was reminded of this spending the day Friday at Georgetown Hospital's pediatric hematology/oncology clinic.

 

The other day I was (optimistically) picturing me fighting with her as a pre teen to take her antibiotics (assuming pandas was in her distant past). I hope that someday most of these issues will be behind us- but at the same time think it will leave our whole family with a new level of compassion and committment to those who are ill (especially mental illness). I try to imagine the positive this will bring to our lives, maybe one of my dd's will become the doctor that figures this all out!

 

I just know now- if my kids have a decent day- I am happy. I did worry way too much about the little stuff before.

 

Kayanne- I have totally felt that strep has ravaged my family. Non-pandas dd age 9, was NEVER sick, she had strep in first grade, and ended up missing over two weeks of school because she just couldn't get better. (strep, then "virus", then sleep apnea and eventually tonsils out). This time, when they both got the strep that caused pandas in dd 6- dd8 again couldn't get better. She was home sick with strep for a week, then another "virus" for a week. Since then- she gets daily stomach aches that cause anxiety. Things are not the same for her either. I am working on having her tested by Cunningham- I have to at least rule out a mild pandas for my sanity.

 

Oy!

[MMC]

Hello to all. I was diagnosed with Sydenham's Chorea as a child (age 7), so I know I passed this down to both my daughter and son. Not sure whether they have SC or PANDAS...or maybe I had PANDAS, and SC was the closest diagnosis they had in 1972. (Cam scores are on upper level of graph, towards SC for both) I am the Dad, the leader of the household, and the carrier of this awful condition...so, this has gotten me down since our son started showing PANDAS symptoms back in March. He caught strep from his sister in early March. We thought he might not get it b/c he was almost 11, and never had symptoms. But, we don't think he ever had strep until March of this year, which is quite amazing.

 

Anyway, I wonder if we could have prevented this by getting him on antibiotics a few years ago...but I seriously doubt a doctor would have prescribed this when he had no signs of PANDAS. Most doctors don't even want to prescribe antibiotics even after having this condition, as you know. Dr Latimer has him on penicillin now.

 

No one ever told me this could be passed down to my kids. So, what could I have done to protect my kids better from this...I am not sure. We just thought we wouldn't have to worry about our son getting this, 50/50 on our side...now he has it and is 5 times worse than his sister. Seeing my son suffer like he has...knowing this is from me...this has been the worse year of my life, I am sad to say. But somehow, this will make us all stronger. At least, we know to tell both they need to be aware of this if and when they have kids. We are still consulting with Dr Latimer about different options and have an appt to see her next month. We are in NC...we couldn't find a Dr here who recognizes PANDAS enough to offer treatment options. This just added to our frustrations, as you all can identify with, I'm sure.

 

BTW...as I wrote in a previous post, I mostly outgrew my SC/PANDAS by the age of 14 or so, and no one ever knew I had struggled with this by the time I was in high school and college. My main issue was tics, not OCD...kids are the same, slight OCD and ADD but main issue is with tics. So, this gives us all hope...get older and outgrow this stuff.

[thereishope]

There's so many what if's when dealing with this. I wonder how many times I should have taken my kids to the doctor when they had a "cold" that didn't go away or a cough. I'd look in their throats and say, "It's not red. there's no streaks, rash etc.". It never occurred to me that they could have strep. Now I wonder how many times they might have had it and I let it go. Perhaps my son had it many times and the last time in Sept 08 was the last straw that broke the camel's back ad PANDAS finally surfaced full force. I know there is no way of ever knowing, but when those thoughts enter your mind they are hard to get out.

 

I don't think our kids will resent us when for possibly passing this disorder onto them. I think, as parents, we worry about this but I don't think it will happen.

 

Like someone else has said, if I have to look at the positives of all this, I have a new outlook when it comes to my kids. My new motto to myslef is to "pick your battles". Why fight over trivial things. Why punish for silly things. Life is just too short.

[Kayanne]

Hello to all. I was diagnosed with Sydenham's Chorea as a child (age 7), so I know I passed this down to both my daughter and son. Not sure whether they have SC or PANDAS...or maybe I had PANDAS, and SC was the closest diagnosis they had in 1972. (Cam scores are on upper level of graph, towards SC for both) I am the Dad, the leader of the household, and the carrier of this awful condition...so, this has gotten me down since our son started showing PANDAS symptoms back in March. He caught strep from his sister in early March. We thought he might not get it b/c he was almost 11, and never had symptoms. But, we don't think he ever had strep until March of this year, which is quite amazing.

 

Anyway, I wonder if we could have prevented this by getting him on antibiotics a few years ago...but I seriously doubt a doctor would have prescribed this when he had no signs of PANDAS. Most doctors don't even want to prescribe antibiotics even after having this condition, as you know. Dr Latimer has him on penicillin now.

 

No one ever told me this could be passed down to my kids. So, what could I have done to protect my kids better from this...I am not sure. We just thought we wouldn't have to worry about our son getting this, 50/50 on our side...now he has it and is 5 times worse than his sister. Seeing my son suffer like he has...knowing this is from me...this has been the worse year of my life, I am sad to say. But somehow, this will make us all stronger. At least, we know to tell both they need to be aware of this if and when they have kids. We are still consulting with Dr Latimer about different options and have an appt to see her next month. We are in NC...we couldn't find a Dr here who recognizes PANDAS enough to offer treatment options. This just added to our frustrations, as you all can identify with, I'm sure.

 

BTW...as I wrote in a previous post, I mostly outgrew my SC/PANDAS by the age of 14 or so, and no one ever knew I had struggled with this by the time I was in high school and college. My main issue was tics, not OCD...kids are the same, slight OCD and ADD but main issue is with tics. So, this gives us all hope...get older and outgrow this stuff.

 

My husband really takes a lot of this on emotionally...he feels that the anxiety/ocd component was from him, and he has a hard time with that on some days.

 

When Diana asked about autoimmune issues or RF on the phone with me...she told me RF was autoimmune a lot clicked in my brain, and I was upset with myself for not realizing to disclose this to the peds when they tested positive for strep--the way my mom did when I was a child.

 

However, as I thought more about it...I really don't think anything would have been done different by my peds office. I just think this generation of doctors is very careful about antibiotics. My father often tells me that when he had a sore throat and went to the doctors...you got a shot of penicillian right away--I'm guessing this was because they had no way to know if it was strep without doing a culture.

 

I truly am hoping that this is a lot like RF. My uncle's experience was difficult...six weeks in a regular hospital, and a very long time in a heart hospital. However, he recovered and took pen for 20 years without any more issues. I am hoping for all of our kids, that once we get them back to their baselines--prophylaxis are enough to prevent relapses--just like RF. I'm probably making this out to be far more simple than it is, though.

 

MMC,

Did you take antibiotics after this first happened to you? You said you ticced until you were 14, was there ever a waning of symptoms for you prior to that--like the episodic course experiences by PANDAS kids? Did you receive any treatment that you were aware of?

 

Thanks,

Karen