You mean we're not alone?

[Kayanne]

In almost every PANDAS story that I have read on this fourm, the child has some bathroom issue...for us it was just crying and not getting off in a timely manner...she couldn't even tell us what had her so upset.

 

Even now, her only lingering issue is the bathroom...she is so reluctant to use it...she cries and we have to tell her that she must go. Now that she has begun to tell us a little about what she was thinking during her episode, I tried to get her to explain why she was so reluctant to go, and she doesn't even know why. She just says, "I don't know why I don't want to go potty, I just don't like it."

[Suzan]

In almost every PANDAS story that I have read on this fourm, the child has some bathroom issue...

 

For us it was urgent, unexpected need to urinate and night time bedwetting, excessive wiping and neither of my girls feels comfortable to properly wipe their bottom. Also, not sure if this is related, but dd8 ALWAYS has to have a BM when we are waiting for the doctor to come into the room at a doctor's office. What's up with that?!

 

Susan

[thereishope]

"Also, not sure if this is related, but dd8 ALWAYS has to have a BM when we are waiting for the doctor to come into the room at a doctor's office. What's up with that?!"

 

That might be just nerves. Actually, as a child, I remember always having to use the bathroom very bad while waiting for the doctor. I also remember everyone thinking I was just trying to avoid the appt. It wasn't the case.

[poetmom]

My ds is by and large very much past his episode. Someone sent me a private note "it sounds like he might not be PANDAS anymore". I haven't had a chance to email them back, but is that really possible in 2 years from ages 3-5?? I didn't think so, though I would SO like to believe it.

 

I also heard the 2nd and 3rd episode can be more intense --- anyone care to share experiences on this?

We've only had one major episode, though little "flair ups" that seem attributed to illness.

 

I'm frankly terrified of something more intense than the last one...

 

With regards to the hair (maybe just sharing some things we've done will trigger ideas for others. I'm always looking for creative ways to deal with the lingering issues), my ds still doesn't like to have his hair brushed. He will, however, oddly allow me to use a comb. At the worst of his fear of water/hair issues, washing his hair was a screaming nightmare...but I discovered by accident that he would sit albeit nervous and uncomfortable to allow a hairdresser to wash his hair. Later, I also discovered that leaning him over the tub or the sink with a sprayer and washing his hair was easier because simply being in the shower or bath cause sensory overload while limiting the water to his HEAD was something he could handle without quite the same level of intensity. Made perfect sense and I could have kicked myself for taking so long to figure out something that simple... ;-)

 

Is there a thread on here I haven't found yet with just little everyday "sanity savers" that people have tried?

 

Also - during the time he didn't like to be touched, he would sometimes give me very strict directions on how to rub his arm or his back - it was essentially a DEEP PRESSURE RUB, not light pressure and in the exact same area, not moving around from one limb to the other, one part of his back to the other. The consistent, deep touch was something he found sometimes (not always) more tolerable, even comforting.

 

Robin

[Guest asaxon]

In almost every PANDAS story that I have read on this fourm, the child has some bathroom issue...for us it was just crying and not getting off in a timely manner...she couldn't even tell us what had her so upset.

 

Even now, her only lingering issue is the bathroom...she is so reluctant to use it...she cries and we have to tell her that she must go. Now that she has begun to tell us a little about what she was thinking during her episode, I tried to get her to explain why she was so reluctant to go, and she doesn't even know why. She just says, "I don't know why I don't want to go potty, I just don't like it."

 

Compulsive urinary hygiene rituals are common in PANDAS kids. No one knows why.

[thereishope]

In my opinion,and it's just my opinion, the child will aways have PANDAS. It's just a matter if that trigger is activated. It's just remaining latent and controlled for the time being. You can have a PANDAS child w/ no symptoms at all. They've gotten better, they act "normal", etc. But the moment that trigger is activated again, it will resurface. I've experienced with my son three times now.

 

I say my son's PANDAS episode is over, but he has PANDAS.

 

Now if your son is exposed to his trigger and nothing happens, then please post it all over this board. I'm telling you, if I ever find out my son has a + strep test and his behaviors DON'T act up, I will be sure to let all of you know. That is the only way I will ever see my son as "cured".

 

 

 

 

 

My ds is by and large very much past his episode. Someone sent me a private note "it sounds like he might not be PANDAS anymore". I haven't had a chance to email them back, but is that really possible in 2 years from ages 3-5?? I didn't think so, though I would SO like to believe it.

 

I also heard the 2nd and 3rd episode can be more intense --- anyone care to share experiences on this?

We've only had one major episode, though little "flair ups" that seem attributed to illness.

 

I'm frankly terrified of something more intense than the last one...

 

With regards to the hair (maybe just sharing some things we've done will trigger ideas for others. I'm always looking for creative ways to deal with the lingering issues), my ds still doesn't like to have his hair brushed. He will, however, oddly allow me to use a comb. At the worst of his fear of water/hair issues, washing his hair was a screaming nightmare...but I discovered by accident that he would sit albeit nervous and uncomfortable to allow a hairdresser to wash his hair. Later, I also discovered that leaning him over the tub or the sink with a sprayer and washing his hair was easier because simply being in the shower or bath cause sensory overload while limiting the water to his HEAD was something he could handle without quite the same level of intensity. Made perfect sense and I could have kicked myself for taking so long to figure out something that simple... ;-)

 

Is there a thread on here I haven't found yet with just little everyday "sanity savers" that people have tried?

 

Also - during the time he didn't like to be touched, he would sometimes give me very strict directions on how to rub his arm or his back - it was essentially a DEEP PRESSURE RUB, not light pressure and in the exact same area, not moving around from one limb to the other, one part of his back to the other. The consistent, deep touch was something he found sometimes (not always) more tolerable, even comforting.

 

Robin

[fuelforall]

In almost every PANDAS story that I have read on this fourm, the child has some bathroom issue...for us it was just crying and not getting off in a timely manner...she couldn't even tell us what had her so upset.

 

Even now, her only lingering issue is the bathroom...she is so reluctant to use it...she cries and we have to tell her that she must go. Now that she has begun to tell us a little about what she was thinking during her episode, I tried to get her to explain why she was so reluctant to go, and she doesn't even know why. She just says, "I don't know why I don't want to go potty, I just don't like it."

 

Compulsive urinary hygiene rituals are common in PANDAS kids. No one knows why.

 

 

Never thought about this. My son always goes to the bathroom at mealtime.

[DawnMCH]

I could've written this post! Well, except my daughter wouldn't let me wipe her. She ended up being red and sore from so much wiping, which led to more bathroom avoidance. She is 9 now and it's not an issue, we've moved on to different issues. But she still wipes BMs way more than necessary - we had to get a new toilet b/c she ruined the old one with too much toilet paper. We have a super flusher now!

-Dawn

 

 

Pixiesmommy

 

One of my daughters major issues during her initial pandas episode were urinary. She started with having to go frequently and/or never able to get a dry feeling when wiping. This got worse, until she would sit on the potty and wipe for 40 minutes after urinating. This eventually led her to avoid urinating at all expense, including many accidents. She eventually wanted me to wipe her (for some reason this relieved her from having to struggle to get dry), I would wipe, and she would yell that I don't do a good job, but then she could get on with her day. She is much better now, but still has me wipe her if I am available.

 

Public bathrooms are very difficult to her, although she is doing better with that as well.

 

I know at least one other pandas girl that had almost the exact issue. I also saw a write up in a pandas study that many of the kids had "excessive toileting issues".

[EAMom]

Now if your son is exposed to his trigger and nothing happens, then please post it all over this board. I'm telling you, if I ever find out my son has a + strep test and his behaviors DON'T act up, I will be sure to let all of you know. That is the only way I will ever see my son as "cured".

 

Not all strains of strep are created equal. It is possible that only certain strains of strep will trigger PANDAS. So just b/c your son doesn't react to strep once doesn't mean he's really cured.

[colleenrn]

In my experience, which I learned the hard way, subsequent episodes can be worse. That is why I strongly feel PANDAS children must be on prophylactic antibiotics. I believe PANDAS must be treated as if they had rheumatic fever, which requires prophylactic antibiotics through childhood.

 

When things would get much better with my daughter, I would let her go months with NO antibiotics and then all ###### would break loose eventually and I would kick myself for not keeping her on antibiotics. That is just my experience.

 

Colleen

[EAMom]

I agree with colleen. Susbsequent episodes can be worse (and more difficult to control/less responsive to treatment).

 

Also, with subsequent episodes, there can be a "baseline" change...where kids improve after an episode but don't return to "normal". Prophylactic antibiotics aren't the only answer (not a "cure") but they help greatly. With time, our dd had exacerbations (in addition to a baseline change) even on Azith (when exposed to family members who had strep, after non-strep illnesses)...which is why we went to IVIG. I don't know if that will be a cure or more of a treatment. But, it was clearly time to pull out a bigger gun...

[T_Mom]

So much of figuring out what helps has been retrospective--

 

I entirely agree that antibiotics are a necessary safe-guard as far as keeping kids "steady".

After a very bad incident our d got better and then with a bout of illness last winter she lost the ground she had gained...and that third episode was very bad. She was not on antibiotics at the time. It literally took 4 months to get her back--

How pathetic is it to be happy when your d expresses emotion about the dog--I can remember being struck by the fact that "normal" kid interactions were returning.

[poetmom]

I wanted to add an update on the below brief history of our journey through PANDAS and how my ds is doing as this school year comes to a close, in part because I think it is hopeful for others, and in part because I want to stress how close we came to complete disaster.

 

This is what he's like today:

My son is a happy, healthy little boy. At 6, he can read and loves to read. He sings. I can freely run my fingers through his hair without him spitting at me - he usually doesn't even seem to notice if I only do it once. He will wear his pants, although he sometimes is picky about how they fit. He still likes tight shoes and owns a pair of leather, lace-up shoes that buckle tightly over the laces, but lately he often just wears normal tennis shoes. He eats normally. He only has bouts of insomnia when someone turns up sick. He no longer has any verbal tics (though one reappeared briefly when his sister had strep a couple months ago). He held the slimy fish at SeaWorld over Spring Break to feed the sealions without freaking out and let the birds land on him to eat nectar. He played soccer last fall and actually got on the field during games. He got up on stage last month at the Kindergarten Circus and performed confidently - as opposed to the year prior when he was supposed to perform and stood plastered against the wall hidden behind my legs screaming bloody murder but not wanting to leave because some part of him actually wanted to perform. *sniff* He can reason out his emotions and regulate them as well as any 6 year old. He is, according to his teacher, above average academically and socially. And as the kid who people avoided because his rages and tics were annoying and scary, I have in the past few weeks had people who've just met him describe him as "the coolest kid". He is, in a word, fine.

 

So I consider the day the doctors handed me an autism assessment packet telling me he was either PANDAS or autistic. I consider the terror I felt filling it out and how perfectly he fit into some of the boxes they were clearly trying to size him up for in order to figure out where he was on the autism spectrum. I consider how I feared he would never be able to take care of himself, never have normal relationships, never want to hug me again, and what would happen to him if I wasn't there to take care of him. I consider how easily he could have been diagnosed as autistic. And then....I consider how quickly he responded to antibiotics. It was a long road back up, but it was clear from the beginning we were on the right path.

 

So today, I consider how many children are diagnosed autistic. In 1980, it was 1 in 10,000. Today, the CDC estimates it averages 1 in 110. How many are misdiagnosed as a product of questions we haven't yet answered? What kind of black hole would could have completely swallowed my son if he'd been diagnosed autistic and never received antibiotics? Would he ever have recovered at all? I have serious doubts.

 

Most doctors and nurses I've encountered don't know what PANDAS is...so they aren't looking for it! You can't diagnose an illness you don't know exists. No one at his school had heard of it (they all did great research and do now!)...so educators aren't looking for signs to alert parents! And parents aren't looking either, because no one knows a simple case of strep might turn your world upside-down.

We need research to determine causes and treatment, but we also need education, education, education.

 

I pray every day my son will remain in "remission". I offer hope to families still struggling, and I offer our story to medical professionals, researchers and parents so they might consider PANDAS more often as a possibility.

 

Hugs to all,

Robin

[kimballot]

Happy Mothers day to you... and to all of us! Thank you for sharing!

[earnestfamily7]

Thank you for the beautiful post and encouraging update! It is so nice to hear about the children that are doing well and to know how far others have come! Hugs to you!