Opinions

[P_Mom]

Okay, so of course it didn't take long for my son (younger one..more severe PANDAS) to get sick since school started....4 days actually.

 

Anyway, he complained of a belly ache in the middle of the night Thurs., then started to vomit in the am. He was wiped out all day vomiting a little, then started to run a fever.

Today, the vomiting has gone south, if ya know what I mean.

 

This came out of nowhere because I can Always tell, from the last 3 years of PANDAS, when he is getting sick because of an increase in PANDAS symptoms BEFORE physical symptoms of illness hit...and sometime they, the physical symptoms don't even surface, just the PANDAS does, but, someone is always sick around them when it happens. THis time...no increase of PANDAS symptoms before illness, and, no increase during....first time EVER!

 

Here is where I need opinions. Do any of you have PANDAS children who increased with PANDAS symptoms because of a stomach bug with fever? I certaintly want to think of this as a good sign..of some healing, but, I think the lack of PANDAS symptoms could be due to the

type of illness he has. Although he always increased in PANDAS symptoms prior to this with any illness, this time he didn't, but, this is his first stomach illness in the 3 years also. Follow??

 

Thanks for any input!

 

Also, does anyone think tonsil removel can affect Cam K results? Has anyone had Cam K done proir to T&A and then , say, a year after? I was speaking with Dr. Latimer the other day, and she posed the same thing. (before I said anything) She commented on how my older sons Cam K was much lower than my younger sons.....she wondered if that could have anything to do with T&A removal because my older son has his out...younger son doesn't (yet..we have the script..just need to schedule) She said she has seen a few kids fully recover after t&a?

 

Just some thoughts today!

[thereishope]

When was the last time he was sick prior to this stomach virus? See this as a HUGE leap forward. My son was having a ramp in symptoms with any illness and allergies and now he doesn't.

 

As for the illness itself, that exact one is going around all over. With some it's the vomitting, diarrhea, and fever and for others it's just the fever (that's the one my 2 got). Luckily, it seems to be a rather short lived virus and hopefully he will feel better soon. As you know some kids will expereince a ramp in symptoms a few days post fever so continue to keep an eye on him....I know you will

 

Hope he feels better soon!

[mama2alex]

This bug hit our house last weekend. My ds10's PANDAS symptoms started ramping up on Saturday (4 weeks post 2nd HD-IVIG) and we were wondering what was going on. Then on Monday he woke up with nausea, headache, extremely tired - no fever, but then he rarely gets one. He was back to school for partial day on Wed, and full day on Thurs. On Wed night I started vomiting, extremely tired, headache (could have had a fever, but too tired to check). I think it hit me harder b/c he has those antibodies from IVIG, but I'm sure we had the same thing.

 

As I see it, the fact that your son has had NO increase in PANDAS before or during illness is a very good sign!

[peglem]

My daughter did not have CamK tested before T&A (it wasn't even available in 2006), but 2009, 3 years after T&A, her camK was 242. I suppose it could have been higher before, but not much!

[P_Mom]

Thanks for all the replies!

 

Vickie....the last time he was sick was in the Winter......and he did have a mild increase of symptoms with it, as usual. This is really mind blowing for my husband and I to see nothing happening with him as it did every time for the last 3 years. I sure will keep an eye on him...and my gut says nothing will happen if it hasn't already just based on his history...I pray I am right!

 

I want so bad to think of this a a leap forward....but, it is hard to get your hopes up with this PANDAS stuff. The big test will be when/if he gets sick this school with an upper respiratory infection...if I see nothing then....then, I'll be dancing a jig.

He has never had this kind of bug before...I know...I don't know how he escaped it for 8 years! That is why I am hesitant to ....well....dance a jig.

 

He is already feeling better now and the fever is gone...so, yeah...one day thing!

 

Mom to Alex...was the ramp significant and noticeable? Or, just mild?

 

 

Peg....wow....your post always blow me away! I hope so much your daughter sees improvement as time goes by.

 

I will be getting my younger sons t&A soon....then perhaps will run Cunningham on him again. Wonder if there would be a difference. But, then again, if there is....who is to say it was from t&A and not just time and healing?

 

Ahhh...such a mystery.

Edited September 4, 2010 by P.Mom

[Fixit]

Thanks for all the replies!

 

Vickie....the last time he was sick was in the Winter......and he did have a mild increase of symptoms with it, as usual. This is really mind blowing for my husband and I to see nothing happening with him as it did every time for the last 3 years. I sure will keep an eye on him...and my gut says nothing will happen if it hasn't already just based on his history...I pray I am right!

 

I want so bad to think of this a a leap forward....but, it is hard to get your hopes up with this PANDAS stuff. The big test will be when/if he gets sick this school with an upper respiratory infection...if I see nothing then....then, I'll be dancing a jig.

He has never had this kind of bug before...I know...I don't know how he escaped it for 8 years! That is why I am hesitant to ....well....dance a jig.

 

He is already feeling better now and the fever is gone...so, yeah...one day thing!

 

Mom to Alex...was the ramp significant and noticeable? Or, just mild?

 

 

Peg....wow....your post always blow me away! I hope so much your daughter sees improvement as time goes by.

 

I will be getting my younger sons t&A soon....then perhaps will run Cunningham on him again. Wonder if there would be a difference. But, then again, if there is....who is to say it was from t&A and not just time and healing?

 

Ahhh...such a mystery.

 

just skimmed other posts...and not trying to be a poop

my ds when not in pandas, would not get pandas symptoms with stomach bugs...

and actually,during this long epsisode we are still trying to recover from...ds did have 1 stomach bug at close to onset...and i thought maybe he was healing as his pandas symptoms, i would say, almost completely went away...then once he was done vomiting..24 hrs later..pandas returned.....

then last winter i thought we healing again...ds then said he had a bad headache..didn't feel good..i gave him an ibuprofren..and next day(i guess once the bug passed) his syptoms ramped again

 

this was realtively 1 week out from onset...and then once 9 months out

 

But..who am i too say what your child reacts to...AND YOUR DS IS HEALED/ing....i'm gonna hang onto my last statement

[Fixit]

Also. Doc l put thought about ta for ds in my thought process..but it was her first week back..and didn't readdress the issue and that is why i am in process now of getting panda opinions...and trying to ins approval and new 2 weeks ago...

[P_Mom]

Hey Fixit! You are not being a bummer...that is what I was looking for...opinions and experiences!

 

I would never use the word healed for my son.....possible further healing and less reactivity....hopefully....healed....no way!

 

It is still in my mind that this is just a different illness that he just doesn't react to...we'll see with an URI. I am hopeful, though! Gotta have hope..right?

 

Still holding good here....vomiting,etc., fever gone...still no symptoms. I'll update tomorrow!

[mama2alex]

It was definitely noticeable, but not the worst he's ever been either. He had been doing better (though not 100%) since a steroid burst we did a month or so before IVIG. But on Sat. we suddenly saw mood swings, tantrums, and then finally lots of fear at bedtime (needing us to check for the old "robber" again) along with more bedtime rituals cropping up. Separation anxiety within the house came back too. Oh yeah, I could feel my blood pressure going up, so I knew it was real!

[thereishope]

Kelly, if he goes a week post fever with no PANDAS symptoms, let yourself do a happy dance...and let us know too! :)It's great to see that he isn't following his usual pattern! Since he hasn't been sick since winter, his immune system has had a few months to calm down. That's wonderful!

[P_Mom]

Okay....3 days post fever and no PANDAS symptoms.... (woo-hoo)

Today...my husband and older son are vomiting.. (and we had a picnic today..)

 

Does it ever end??

 

(I wonder when I'll be down for the count??)

Edited September 6, 2010 by P.Mom

[thereishope]

Time to do happy dance for son #1!

 

 

 

 

....Hope the others feel better soon.

Edited September 7, 2010 by Vickie

[smartyjones]

kelly -- cetainly happy to hear your ds is doing well with the virus and no pandas symptoms.

 

and i am hoping this would not be your situation. . . just wanted to share our experience. last fall, ds seemed to have a downspiral with a flu, then had seeming troublesome behaviors -- mostly at home, seemed good at school. unfortunately, this was also the time we tried to reduce meds. sometime in jan, he had a stomach bug and after was better with behaviors. i was laughing that he may have pooped out his pandas. however, this seemed to coincide with increasing troublesome behaviors at school.

 

i know many metion that many kids have better behaiviors at school or at home. my ds also seems to be able to hold it together better in one place -- just not consistent with which one.

so, for my son, what appeared to us as healing was in hindsight more of a switch in when and where the behaviors were occurring.

 

it seems a bit different from what you're describing b/c your son was doing quite well before the bug, so i am not saying it's similar. . . but just wanted to mention. good luck and hopes for continued recovery for him.

[P_Mom]

Thanks for all the response.

 

Smarty Jones...I welcome your experience...that is why I posted this thread....I wanted to hear what others have dealt with regarding their PANDAS kids and the stomach bug since this is the first time we have dealt with such an illness since PANDAS started.

Thanks for sharing!!

 

Yeah...I really don't know what to make of it. We all ended up with the bug...just getting over it myself...I was the last to go down. So, my younger son is now 1 week post stomach bug and fever with no symptoms! His behavior is no different at home or school. He is really stable right now. I don't expect anything to come from THIS illness...it has passed. Same for my older son...no symptoms with this illness/fever. He is about 4 days post. He is a ticcer...his behavior has always been good, so, no changes there, but, also, no tics. The last time he was "sick" was in July. Well, he didn't actually physically get sick...we just saw his famous neck tic reappear out of the blue one day. Nobody was sick at home, he wasn't in school...we were perplexed. Well, we overheard the coach from my son's baseball team say that a kid on my son's team was on the bench crying from a sore throat! Viola! We found our culprit and actually breathed a sigh of relief!

We did check a couple days later and the parents had the child swabbed and it was not strep. The exposure to the virus (we are assuming it was a virus) was enough to cause my sons neck tic to reappear.....that was his sign of "illness".....the tic disappeared in about a week as quickly as it came. I did up his antibiotic just in case! (and his tic did seem to settle immediately....don't know if that is just coincidence or what)

 

Anyway...back to the stomach bug. Yes...Vickie....doing the "happy dance" that both kids got through their first illness since PANDAS started without symptoms...however, I am EXTREMELY skeptical that this trend will continue. Oh, how I hope and pray...but, we'll see this year......I really think it was just the type of illness they had that didn't cause a vamp.

Oh how I'd love to be wrong. Also, weird thing..really weird...my older son has significant seasonal allergies. They are well controlled on Claritin and Nasonex (the nasonex has been great for him) He is allergic to several spring tree pollens, all grasses, and all fall weeds they checked for! (oh, and one strain of mold) He had his usual vamp in allergies in the spring, they die down in the summer, then, USUALLY, vamp back up in fall. I get notices sent to me automatically from the National Allergy bureau place (can't remember name) and the fall weed pollen has been HIGH for a bit now. I have been waiting for his allergies to flair so I can start to give him his meds (I hate to medicate if I don't have to)...I haven't seen a thing....so, this morning I asked him how his allergies were...he looked up at me with a big grin and said..."what allergies?"

 

Now, what is up with that???

 

Sorry for the long post...been couped up today sick and just kinda bored.

[P_Mom]

Scratch the above about the allergies...

 

they're baaaaaaaack!

 

I was hoping they "magically" disappeared...no such luck.