Realizing YOU passed it onto your child

[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.

 

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

 

Karen,

Yes, there was a waning before I was even 14...as to exactly what age, I am not sure. I am 44 now, that was a long time ago. I have tried to remember what it was like for me at school. I was in the 2nd grade when I was diagnosed with SC. I remember my mother telling my 2nd grade teacher about it, but other than this, I don't remember have any real issues at school. I mainly remember having a lot of tics in the evening, after being tired out from the day. This is my son's main issue as well. We have to give him benadryl every night to relax. As far as treatment, I was on monthly prophylactic intramuscular bicillin (shots in the butt that hurt!)...for 10 years. Bicillin is slow release penicillin. Then when I was 17, I went to pen vk oral, daily...until I was about 20, then stopped altogether. This prevented me from getting strep again. This was the only treatment I had. I seemed to just slowly get better over time, until it was pretty much a non-issue. Too bad my kids have it, now it's an issue again.

 

MMC

[EAMom]

RE SC...it's my understanding that SC tends to get better in 6 mo. or so (although there can be lingering OCD and reoccurances) vs. PANDAS which seems like it can rage on for years. ??

 

I suspect that my dd wouldn't have gotten to the point she did if she didn't have multiple untreated strep infections. I will make sure my (future) grandkids get throat cultures even if they don't have red sore throats (eg when they have a fever, etc, or start having acting like they have a bladder infection!). I feel like this is a very treatable (and even preventable) disease...and we just have to have faith that in the next 5-10 years Dr. Cunningham, Dr. K. , Dr. Swedo, and the Europeans that are doing great work will throw a big pie in the face of Dr. Singer so we won't have to deal with this ridiculous "controversy" and the kids that need help can get it in a timely manner. I think most of our kids wouldn't be where they are if:

 

1) docs were better about doing throat cultures, even when the throat isn't "sore and red"

2) pandas cases where hit hard with antibiotics (and even steroids) early on

 

 

Heck, nobody is going to have perfect genetics...and I'd much rather deal with PANDAS than so many other diseases. PANDAS is extremely treatable (antibiotics, pred, IVIG, PEX), if only we can get the medical community on the ball. That is one thing that makes this disease so frustrating. This disease is treatable (and the treatments already exist!) but we have to jump through hoops to find a doc with a clue who is willing to do so. What breaks my heart is the parents (and kids)who suffer needlessly b/c they have no idea what is going on and they get misdiagnosed with other psychiatric illnesses (bi-polar, tourettes, autism, odd etc.) for years on end. We are the lucky ones by at least knowing about PANDAS (and having found each other and this website)...that really is half the battle!

[mom md]

I am a firm believer than everything happens for a reason. For some reason we were all supposed to have this "mack truck" hit. We were the ones chosen, and my guess is it is up to us to figure this puzzle out and make it easier for those who come after us. We owe that to ourselves and to our kids. I promise that I will see good come from this.

On this forum, we have already accomplished that. The theme of this forum was very desperate back in Feb/March and now all the posts talk about how to be cured not just live day by day.

Looking back on all the ######...at some point I will view this as a blessing (not a curse), but I am in the early stages of healing and my wounds are too raw. I can tell you though, I get joy now beyond belief in the small things I see now. The smile on his face when he goes up to bat...the smile on his face when he gets off the bus. This has made me slow down and smell the roses.

[P_Mom]

Just to strengthen what EA Mom said about keeping your kids from progressing with early antibiotics.......

 

When my older son woke up one day, Sept. 17, 2007, twisting his neck (he was 7 1/2)...well, first I almost died because we were just turning the corner of my younger son's severe episode, and, we just figured out it was PANDAS, however, I knew what I needed to do and immediately took him to the doc. (2 days later, tics and adhd behavior progressing) Doc said "transient tics, don't worry, they will go away." I was getting confused in his office....I was a new PANDS Mom...still learning, and not nearly as strong . I was intimitated and was about to go with what he said and leave, when, by an undoubted miracle, my son mentioned his ear was bothering him...right before we walked out the door. Doc took a look....all clear, but, he says, I am going to give him a course of antibiotics "just in case." My sons symptoms were basically gone that evening...I am totally serious. It was unbelieveable and I had concrete evidence now. He continued to do completely well, went through a tonsillectomy, and then in January, 2008, started twisting his neck again one day (the 9th) as well as the adhd behavior. Took him the NEXT morning to the clinic...no culture done, had a sniffle, but I knew they always give out antibiotics there. Same thing...gone in a day. Since that end of full dose antibiotics...he has been on prophylactic antibiotics....first Pen VK, then Augmentin, now Pen Vk again. He is doing VERY well....never had the chance to get bad like my younger son unfortunately did. At this point, we have no concerns with him. Socially, academically, etc...no problems. No behavior problems at all, no ocd. He is most of the time symptom free, however, he will get a very mild, infrequent tic here and there with some illnesses. He had Pertussis this summer (pretty decent bacterial illness) and I saw the neck tic done three times one day (while pitching in a baseball tournament...nervousness)...that is it. I have no doubt the fact he is doing so well is because of the very early, almost continuous antibiotics. His Cam Kinase (during Pertussis and the minor tic) was 112...normal is 110. He is still considered in the PANDAS range....but, very low.

 

 

Now that I know about how long these kids can sometimes go before treatment....well, we, comparatively, got my younger son treated fairly quickly as well...although definitely not as soon as my older son. My husband, luckily (oddly enough) got the strep that was causing Ethan's sudden change in his arm and developed cellulitis. They swabbed him and he was positive and the doc recommended we get the kids tested. Ethan was positive(no symptoms, of course)...this was about a month into undiagnosed strep....not bad as far as timing goes....but his symptoms had already gotten bad by that point, but, still, on antibiotics within a month....he is doing well also, although we do have our concerns with him.

 

I read Against Medical Advice and I can't keep but wonder...if that child would have been given a simple course of antibiotics soon after he woke up needing to shake his head......just like my son woke up needing to twist his neck.......could it have all been avoided? Or, atleast, drastically reduced? What would have happened to MY son if no antibiotic were prescribed that day? God was definitely watching over us!

 

I would highly recommend any parent who has a child with a fairly sudden, doesn't necessarily have to be overnight, but, a child who changes in some way....tics, ocd, anxiety, anorexia, adhd, bi-polar behavior, rages, etc......that are unlike the child they have known.......do a course of antibiotics even if there is no visible illness.....or even if there is no detectable strep. I think a course of antibiotics is so benign....however, could alter the course of your childs life forever....you never know, it did ours.

[thereishope]

The horrible thing is some places are so strict on antibiotics. It's just impossible. You have no idea how much I struggled and fought to get my son on a proph antibiotic. No one will give it. It's not that I'm not trying. Trust me, I am. You have no idea how frustrating it is to stand their have the fight. They ust don't seem to grasp that if they get strep it damages their brain. They will mentally die. They just don't get it. If giving a simple antibiotic would prevent a child from having cancer, I guarantee you, it would handed out w/o hesitation.

 

I'll just stop my rant. It could go forever....

[P_Mom]

Vickie.............I DO have an idea how hard you struggled and fought.......and how frustrating it is. I have fought that fight, and struggled that struggle, numerous times also, and still continue to. I am still to this day running around locally to docs to try to get help here, so we won't have to travel so far. So far, after 2 1/2 years...nothing. Not even from an infectious disease doc who is doing a "PANDAS study" at the University of Pittsburgh....very lame!!! I cannot not find any help locally...no one will listen to me or give my kids proph antibiotics. I had to travel 10 hours (I know some have traveled farther) to get them on Augmentin from Dr. K. Then after 6 months, he would not prescribe any longer unless I went to see him every 6 months....that is when I found Latimer. I travel to her now for the antibiotics...she is "only" 4 hours away. I totally get it!!!!

[Kayanne]

Vickie.............I DO have an idea how hard you struggled and fought.......and how frustrating it is. I have fought that fight, and struggled that struggle, numerous times also, and still continue to. I am still to this day running around locally to docs to try to get help here, so we won't have to travel so far. So far, after 2 1/2 years...nothing. Not even from an infectious disease doc who is doing a "PANDAS study" at the University of Pittsburgh....very lame!!! I cannot not find any help locally...no one will listen to me or give my kids proph antibiotics. I had to travel 10 hours (I know some have traveled farther) to get them on Augmentin from Dr. K. Then after 6 months, he would not prescribe any longer unless I went to see him every 6 months....that is when I found Latimer. I travel to her now for the antibiotics...she is "only" 4 hours away. I totally get it!!!!

 

I can't tell how blest I feel that I found this forum and you all pointed me to Dr. Latimer, and she is only 3 hours away....I will be eternally grateful for the legwork that you have all done!

 

Thank you!!

 

I just don't get the antibiotic reluctance either.....anymore...I used to be so anti-antibiotic, and so quick to jump on the "established" medical profession for over prescribing drugs, but so far I've spoken to two other relatives whose lives were saved with steroids.

 

I am currently composing an antibiotic rant to start a new thread, but we've had some real serious issues come up in our house (not PANDAS related) and I have to step up into "crisis mode" for a bit...I probably won't be on the forum as much as I have been.

[thereishope]

Sorry, sometimes I forget you guys do "get it". I'm still not use to having that support.

 

 

 

 

Vickie.............I DO have an idea how hard you struggled and fought.......and how frustrating it is. I have fought that fight, and struggled that struggle, numerous times also, and still continue to. I am still to this day running around locally to docs to try to get help here, so we won't have to travel so far. So far, after 2 1/2 years...nothing. Not even from an infectious disease doc who is doing a "PANDAS study" at the University of Pittsburgh....very lame!!! I cannot not find any help locally...no one will listen to me or give my kids proph antibiotics. I had to travel 10 hours (I know some have traveled farther) to get them on Augmentin from Dr. K. Then after 6 months, he would not prescribe any longer unless I went to see him every 6 months....that is when I found Latimer. I travel to her now for the antibiotics...she is "only" 4 hours away. I totally get it!!!!

[EAMom]

Once we first learned about pandas, and our dd was in the hospital for malnutrion (Stanford eating disorder clinic) we were lucky to hook up with a well-respected private practice OCD specialist child psychiatrist (also Diana's son's psychiatrist). I remember the eating disorder docs were so against giving dd antibiotics. Our psychiatrist- to-be (who had previously been with Stanford) was so irritated, "what harm can it do?", but they wouldn't give in. Mind boggling. Finally, throat cultures on both kids (and perianal culture on PANDAS dd b/c I noticed blood in the toilet) came back positive, and we got the antibiotics. BTW, they wouldn't have even done the the cultures if we hadn't asked for them. They were only going to do the ASO/anti-dnase b (which came back normal).