About incidence in siblings

[matis_mom]

I hesitated posting this as I don't want to cause more grief or worry to anyone. I ordered a second Cunningham kit today (for my dd), and they said they see this A LOT. One family has 5 out 5 kids with PANDAS. This is not what I wanted to hear, as I have 8 children. But, if you suspect something, be proactive. It stinks, I know, but with some many people getting their second diagnosis or worrying about a second child, I thought it was important to pass this along. I scheduled a visit with Dr. L, and will change the LLMD appointment I had lined up for my son and have them see my daughter instead. At least he is already in the pipeline and on full strength antibiotics. She is VERY afraid of needles (so was ds), but I guess she'll just have to get over it as he did.

[Rowens1214]

I just got back our caM results for my youngest son. (have an older son with PANDAS) I read the numbers, had a good cry and woke my husband who said, now tell what that means again!!! I was not a happy Mom this morning..... but you know today when he did his neck tics it didnt worry me so much. i am sad that it does appear he has PANDAS but knowing what is going on is giving me some peace. It took 3 weeks to get results once we sent in the bloodwork. Not sure when we will get his other nunbers in. let me know how it turns out for you.

 

Robin

[ajcire]

I feel like there is no point in knowing numbers on my other 2 even if I do suspect pandas until I can figure out what the heck to do with the info I have on my first.

[matis_mom]

I feel like there is no point in knowing numbers on my other 2 even if I do suspect pandas until I can figure out what the heck to do with the info I have on my first.

So sorry! Has nothing worked for your first? I apologize again for being able to keep track of people's stories.

For us, at least we know where to go for help. She may or may not respond to treatment as her brother, but at least now we understand better the whole OCD thing, we know there are some things that help, it is not hopeless. We'll just have to be a lot more cautious about the cost of different diagnostic/treatment options, as we may in this for the long haul. But I know they'll get better, eventually.

[matis_mom]

I just got back our caM results for my youngest son. (have an older son with PANDAS) I read the numbers, had a good cry and woke my husband who said, now tell what that means again!!! I was not a happy Mom this morning..... but you know today when he did his neck tics it didnt worry me so much. i am sad that it does appear he has PANDAS but knowing what is going on is giving me some peace. It took 3 weeks to get results once we sent in the bloodwork. Not sure when we will get his other nunbers in. let me know how it turns out for you.

 

Robin

I kind of have the same feeling. Not that I know anything about what her problems is right now. Last night I was just so overwhelmed. Today I took some of the kids to the pediatrician and her throat is red, tonsils swollen, but negative rapid. The other ones where negative too. DS seems to be doing ok (except yesterday he complained of knee pain). They did send in a culture, we'll find out about that next week I guess. One thing at a time. We can do it.

[Fixit]

I feel like there is no point in knowing numbers on my other 2 even if I do suspect pandas until I can figure out what the heck to do with the info I have on my first.

So sorry! Has nothing worked for your first? I apologize again for being able to keep track of people's stories.

For us, at least we know where to go for help. She may or may not respond to treatment as her brother, but at least now we understand better the whole OCD thing, we know there are some things that help, it is not hopeless. We'll just have to be a lot more cautious about the cost of different diagnostic/treatment options, as we may in this for the long haul. But I know they'll get better, eventually.

 

mati...i like your optimism..!!!!!! please continue to put it out there

 

aj..i fell ya...watching #3 doing some eye thing...took to dr..had ear infection....

 

i'm toast...ds1 would remit completely and once i new what i was looking for jumped on it,ignoring drs, as ds would tic as only sign he had strep...and look where we are today????

[Worried_Dad]

Yeah, we just did this, too - re-tested our PANDAS son and did 1st test of our middle son, who's starting to show some symptoms. Good news: our recovering PANDAS son's CaM K II is down from 187 to 125. Not as good news: our middle son's CaM K II was 117, which is just below the "positive" level of 120.

 

Like you said, Mati's Mom, it feels good to take precautions. Our middle son's still on the borderline, I guess, and maybe his currently mild symptoms (slight motor and vocal tics, mild OCD, anxiety, enuresis) won't get any worse. But if we see any signs of deterioration, you can bet we're gonna jump on it with abx in a hurry. Don't want to ever go through the nightmare of "exorcist syndrome" again!

 

 

I hesitated posting this as I don't want to cause more grief or worry to anyone. I ordered a second Cunningham kit today (for my dd), and they said they see this A LOT. One family has 5 out 5 kids with PANDAS. This is not what I wanted to hear, as I have 8 children. But, if you suspect something, be proactive. It stinks, I know, but with some many people getting their second diagnosis or worrying about a second child, I thought it was important to pass this along. I scheduled a visit with Dr. L, and will change the LLMD appointment I had lined up for my son and have them see my daughter instead. At least he is already in the pipeline and on full strength antibiotics. She is VERY afraid of needles (so was ds), but I guess she'll just have to get over it as he did.

[ajcire]

I feel like there is no point in knowing numbers on my other 2 even if I do suspect pandas until I can figure out what the heck to do with the info I have on my first.

So sorry! Has nothing worked for your first? I apologize again for being able to keep track of people's stories.

For us, at least we know where to go for help. She may or may not respond to treatment as her brother, but at least now we understand better the whole OCD thing, we know there are some things that help, it is not hopeless. We'll just have to be a lot more cautious about the cost of different diagnostic/treatment options, as we may in this for the long haul. But I know they'll get better, eventually.

 

 

I guess what I mean is that nothing was different in the treatment of my son based on the results of the cunningham test. He scored 141 and all the other things on the test were elevated... but it didn't help me treatment wise. I guess it confirmed for me what I already know.. that something was going on. I have seen one of the big pandas doctors. I am one of the more cautious people in terms of treatment and because my son is mild I am not comfortable taking any drastic measures just yet. I know that could change in the blink of an eye.. So while I am curious what my other 2 kids numbers would be.. it will likely just make me crazy to know because I wouldn't jump on treatments based on that. I do feel better prepared to recognize signs in my others but at the same time sometimes I need to step back and remember that just because my 3 year old is throwing a fit and stubborn and repeating his request over and over.. so do many 3 year olds.. just based on the fact that they are 3. I watch my 6 year old because she has had chronic tummyaches and a few big meltdowns (but then I stop and say so do all kids at one point or another) and because she had constant documented strep throat I did get her tonsils/adenoids out. I guess I might not have rushed to do that if I didn't have pandas on the brain although in her case the recommendation came from the ped just based on the number of positive cultures she had.

 

I didn't mean to sound so negative.. I guess I still don't really understand the cunningham test results.

[Fixit]

I feel like there is no point in knowing numbers on my other 2 even if I do suspect pandas until I can figure out what the heck to do with the info I have on my first.

So sorry! Has nothing worked for your first? I apologize again for being able to keep track of people's stories.

For us, at least we know where to go for help. She may or may not respond to treatment as her brother, but at least now we understand better the whole OCD thing, we know there are some things that help, it is not hopeless. We'll just have to be a lot more cautious about the cost of different diagnostic/treatment options, as we may in this for the long haul. But I know they'll get better, eventually.

 

 

I guess what I mean is that nothing was different in the treatment of my son based on the results of the cunningham test. He scored 141 and all the other things on the test were elevated... but it didn't help me treatment wise. I guess it confirmed for me what I already know.. that something was going on. I have seen one of the big pandas doctors. I am one of the more cautious people in terms of treatment and because my son is mild I am not comfortable taking any drastic measures just yet. I know that could change in the blink of an eye.. So while I am curious what my other 2 kids numbers would be.. it will likely just make me crazy to know because I wouldn't jump on treatments based on that. I do feel better prepared to recognize signs in my others but at the same time sometimes I need to step back and remember that just because my 3 year old is throwing a fit and stubborn and repeating his request over and over.. so do many 3 year olds.. just based on the fact that they are 3. I watch my 6 year old because she has had chronic tummyaches and a few big meltdowns (but then I stop and say so do all kids at one point or another) and because she had constant documented strep throat I did get her tonsils/adenoids out. I guess I might not have rushed to do that if I didn't have pandas on the brain although in her case the recommendation came from the ped just based on the number of positive cultures she had.

 

I didn't mean to sound so negative.. I guess I still don't really understand the cunningham test results.

 

i don't think you sound negative..

it's like you said..it just confirms your fears, thought,,,but now what do you do other than treat with abx and wait, wait, wait, wait, treat, wait, treat more, wait

[Fixit]

Yeah, we just did this, too - re-tested our PANDAS son and did 1st test of our middle son, who's starting to show some symptoms. Good news: our recovering PANDAS son's CaM K II is down from 187 to 125. Not as good news: our middle son's CaM K II was 117, which is just below the "positive" level of 120.

 

 

 

this is what i'm saying about the score...how is 120 different from 117 or 105 for that matter..something isn't right..you know/knew that already...but your waiting on the number to tell you???

 

this is where this study scares me..if it becomes the determining factory

 

so if your recovering son gets to 117 is he not pandas anymore..is he fully recovered..i dont' think so and i think you will still be seeing things

 

ds' 1st was 105..i could have told you he was pandas as he still wasn't right..some tics...i think the number has to get to what ever normal is to be a signal that all possible triggers are probably gone

did i really need to get to 160 to say i told you so????

 

And this is in no way aimed at you worried dad...it's just a discussion/a thought

[Worried_Dad]

No worries, Fixit - I agree with you. Didn't mean to imply that we consider the Cunningham test to be "gospel." It's just another piece of evidence that helps corroborate our gut feel. For our oldest (definite PANDAS, way better after 11 months of Saving Sammy dose of IVIG), this provides a little extra assurance that he's on the road to recovery. For our middle son, the fact that it's well above the "healthy non-PANDAS" level confirms that we at least need to be vigilant (when added to his elevated ASO and emerging symptoms).

 

It's only one piece of the puzzle... but I have to admit that the Cunningham test results 18 months ago really did give my wife and me that extra burst of determination to keep pursuing PANDAS treatment after every local doc we saw refused to even consider that diagnosis. If we had listened to those local "doubting docs"... man, I can't even imagine where our oldest would be right now. As you point out, he's still recovering from a traumatic brain injury, he's not 100%, and he's still at risk. I don't personally think PANDAS is "cured," just managed.

 

 

Yeah, we just did this, too - re-tested our PANDAS son and did 1st test of our middle son, who's starting to show some symptoms. Good news: our recovering PANDAS son's CaM K II is down from 187 to 125. Not as good news: our middle son's CaM K II was 117, which is just below the "positive" level of 120.

 

 

 

this is what i'm saying about the score...how is 120 different from 117 or 105 for that matter..something isn't right..you know/knew that already...but your waiting on the number to tell you???

 

this is where this study scares me..if it becomes the determining factory

 

so if your recovering son gets to 117 is he not pandas anymore..is he fully recovered..i dont' think so and i think you will still be seeing things

 

ds' 1st was 105..i could have told you he was pandas as he still wasn't right..some tics...i think the number has to get to what ever normal is to be a signal that all possible triggers are probably gone

did i really need to get to 160 to say i told you so????

 

And this is in no way aimed at you worried dad...it's just a discussion/a thought

[mom md]

We found out in June my second son has it too. His titers were very high and his camkinase was 169. His brother's was 201 and his titers near 2000 so at least we may have caught it early. His immunology workup was also normal too unlike his brother's which was very abnormal. My hope is that we caught it early before his immune system got completely off track. We started azith 250mg qd and after 5 days his symptoms were gone. I still see a few mild ones occasionally but they are very manageable. We saw the neurologist this week. She said to keep him on azith, be very proactive if he gets sick, try to keep his immune system up (sleep, vit d, good diet,etc), and at the first sign of symtpoms ramping we will test him for strep and if negative hit him with a steroid burst. If that fails or does not hold, IVIG.

I do feel better though knowing he his "looped" in with the specialists and I can call them if we spiral down. My youngest (4) has a sporadic studder and some mood swings but her titers are negative. I am watching her though like a hawk.

My son though who has had PEX, and two IVIG's, is now 6 months out and we are seeing minor signs. Two kids went out of his class this week with strep. We had already planned on another IVIG but are just fighting the insurance company.

[JAG10]

Folks..... doesn't this sibling conversation fly in the face of "sudden onset" as a determining factor??? I mean talk about not getting hooked on a number...does it only have to be sudden for your first kid??? but if you're new to this party and read over and over again about "sudden onset" being the differentiating factor, yet you know your child's been simmering and brewing and something isn't right... you could conclude this isn't sudden at all...is it?

 

I sincerely believe this leads some concerned parents to dismiss PANDAS/PITAND erroneously. IMHO, the focus should be EARLY onset, not sudden. How many times have we heard the stories...when they first come out the child was completely normal to nuts overnight.....then as time goes on the parents share there were concerns before, things were far from "normal." Yes, most of us can identify a point in time when things went from "concerned" to FUBAR!!!!!

 

I understand the difference on that clinical rating scale defining sudden, I get it. Just seems like that term is too open to interpretation and it's always been the thorn in my pandas side..... or maybe its my guilt that it took me her entire childhood to figure it out. Maybe I feel like if I can more folks to focus on age of onset rather than its abruptness, that will be my redemption.......

[matis_mom]

Folks..... doesn't this sibling conversation fly in the face of "sudden onset" as a determining factor??? I mean talk about not getting hooked on a number...does it only have to be sudden for your first kid??? but if you're new to this party and read over and over again about "sudden onset" being the differentiating factor, yet you know your child's been simmering and brewing and something isn't right... you could conclude this isn't sudden at all...is it?

 

I sincerely believe this leads some concerned parents to dismiss PANDAS/PITAND erroneously. IMHO, the focus should be EARLY onset, not sudden. How many times have we heard the stories...when they first come out the child was completely normal to nuts overnight.....then as time goes on the parents share there were concerns before, things were far from "normal." Yes, most of us can identify a point in time when things went from "concerned" to FUBAR!!!!!

 

I understand the difference on that clinical rating scale defining sudden, I get it. Just seems like that term is too open to interpretation and it's always been the thorn in my pandas side..... or maybe its my guilt that it took me her entire childhood to figure it out. Maybe I feel like if I can more folks to focus on age of onset rather than its abruptness, that will be my redemption.......

Oh I can totally see what you are saying. The moment when all those title things add up to something that is way off. I had noticed so many little things on ds which I thought were totally unrelated. To have a doctor tell me on the first visit it's all strep related totally blew me away!

I think one should focus on the strep (or other infection/virus) connection. When my oldest kids were little, I didn't run to the doctor every time they had a sore throat (plus my kids don't show symptoms anyway). If had known then, and taken him in for a strep test, if my pediatrician had known (I did taken him repeateadly for stuttering, eye-blinking, swollen joints off and on, noise sensitivity off and on, and no one thought of connecting it all) we could have caught this so much earlier!!! I don't blame myself too much, he seemed like a happy and healthy little guy (although you wouldn't say that by what his tonsils looked like when they came out!) but I am mad at the docs who dismissed all these symptoms.

Of course the second time around is soooo different. DD only has the mental stuff, no tics or anything that stands out. It would be impossible to make a connection unless you knew what you are looking for. Thank God now we know, and hopefully can catch it early.

[airial95]

I agree that there are some issues with the "sudden onset" definition by nature. As ajcire said when she was describing her youngest - he does these things because that's what normal 3 year olds do. It makes it hard for parents of younger ones (like us) to identify "sudden onset".

 

We were actually a classic example of "sudden onset". But our "sudden onset" also came around the time of his 2nd birthday. It was so abrupt that we made jokes that he must have "gotten the memo" about the terrible 2's. But since what was happening was age appropriate - albeit to an extreme - we didn't suspect anything. It wasn't until things started to build up - and add up - that we finally sought help. Thankfully our pediatrician keeps excellent records, and we were able to amazingly see that our questions to him about our sons "terrible 2's" (which is what we ALL thought it was at first) correlated EXACTLY with a strep infection.

 

I think the classic definition of "sudden onset" is a bit more identifiable in older kids, kids well beyond the bedwetting years, the deterioration in handwriting/school skills, etc... are a more drastic and noticable than those types of things would be in a younger child. Even the tantrums and rages in a younger child are harder to identify since they're not as "verbal" to be able to express their feelings/issues like an older child would be expected too. So if they're older at time of the first exacerbation - sudden onset might make sense.

 

But this may why many parents don't see the "sudden onset" - it may have been sudden, but when the child was so young it wasn't as noticable - so as the child gets older, it's easier to see something's "not right" as things begin to add up.

 

This may not make sense to anyone but me - sorry. But as a parent of an almost 3 yr old with PANDAS - we've been doubted many times by family and friends. Told there's nothing really wrong - he's just a difficult child, or we're not strict enough, we let him get away with murder, etc... Until my parents had him overnight mid exacerbation - they were the worst doubters. Not only do they not doubt us anymore - if they ever take him overnight - my mom is the first to ck the bag to make sure all his medicine is there!!

 

As for the CamK test - which is what this thread was originally about - we've not done it yet, we're going to wait until he's a bit older. But we are going to test his older sister. We have seen some concerning things in her, but not to an alarming degree. She tends to be a drama queen that will do things for attention, especially if she sees her little brother getting away with things. But we figure having that info on here will at least tell us if we need to be more vigilant with her as well, and it will also give us something to go on when we get that gut feeling that something's just "not right".