diagnosing early

[adkmom]

Just wondering how many on the forum have had their child diagnosed early, like 4/5? And what the treatment and results have been? So many here, seem older.

[PhillyPA]

One child diagnosed very early-within a couple weeks (age 6). Total remission. Second child diagnosed after 2.5 years - still sick (he is now 8).

Edited December 10, 2010 by PhillyPA

[Megs_Mom]

started at 3, treated, Full remission for 3 years. Onset again at 6.5, diagnosed at 7.5, full remission for 16 months, but can't (yet) get off abx. Still has blips, but very manageable. Overall a happy child. Crossing fingers.

[thereishope]

Onset was on my son's 5th birthday. Diagnosed 2 weeks later. He's now 7.

Edited December 10, 2010 by Vickie

[Erin3]

My son will be 6 the end of the month but symptoms have been for at least year and a half. Only officially diagnosed in October.

[Fixit]

Just wondering how many on the forum have had their child diagnosed early, like 4/5? And what the treatment and results have been? So many here, seem older.

 

I knew it was pandas when ds was 3 and no one would listen...just shrugged off the rolling eyes...as ds would always get abx and remit in full in 4 week period...

this onset was was when he was 9 and would not remit and could not get abx......no one listening...didn't get formal dx till he was almost 10...we are still in episode 20months later....

[fsilverpsych]

Son was 4.5 when multiple ocd and tics started... raised the alarm... he was diagnosed within a week or so... Dr. T saw us on a Sunday! He started an antibiotic and 5 day steroid burst... worked great... then strep again... did the cycle again ... strep again ...and he also had high mycoplasma titers.... abx and month long steroid taper... that worked best... few months remission ...then strep again! I now realize he just can't be off azith. He's on 200 mg bid... but as he gets a little better we will try to go to a maintenance dose... not sure what that will be yet. Oh... and we're getting his tonsils out soon even though I know it's not curative ... but he's had strep 7 times this year.

 

Last but certainly not least... although I caught the first BIG PANDAS episode quickly, I now realize he likely has had it for several years ... chalked up the other symptoms to his being a 2, 3, then 4 yr old who was smart, quirky, stubborn, sensitive, and neurotic . But hey, he comes from a long maternal line of high functioning yet neurotic individuals ... I only did the research after the cluster of symptoms hit hard following sequential bouts of strep, swine flu, then strep within a month and a half period. I now wonder if tx might have been more curative if caught earlier.

 

Frannie

[adkmom]

Frannie,

 

Just curious, if you don't mind sharing what some of your observations were before age 4? And what is an OCD behavior actually like? My son is 4 1/2 when the tic caught our attention combined with a horrendous report from school (hyperactive, not focusing, meltdowns) He has some behaviors but not sure if they're considered OCD or OCD tendencies, if there is such a thing. (He'll sometimes want to shut off all the lights in the house but ONLY when a movie comes on. Sometimes he'll insist that the door be closed when he's playing in a room. He'll have a FIT if his twin brother sits in his car seat. He'll chew his sleeve, shirt collar but on/off throughout the day.) Figuring out the behavior part is so tough with a toddler! Before age 4, he was hard to get to sleep/soothe, extremely energetic, extremely daring and unafraid of getting hurt. Because he has a twin brother it was VERY hard to recognize as anything but sibling rivalry for my attention.

 

darlene

[butterflymom]

=

Edited February 3, 2016 by tampicc

[thereishope]

Here is a link that was put together to see how OCD has manifested in PANDAS kids...

 

Signs of OCD in a young child

http://www.latitudes.org/forums/index.php?showtopic=6153&hl=

[smartyjones]

darlene -- my ds had a fairly quick diagnosis from 'sudden onset' at age 4 1/2, (about 3 months). he had intense, disruptive school phobia as his major symptom and many other lesser -- clingy, loud talking, chewing on shirts, intense thirst at times, irritable, not cooperative, very tired in the afternoon, bad breath, obnoxious and out of control at times (he called it 'funny manners'), hyper-sensitive, silly rhyming, repeating words, 'butt talk'.

 

our ped was pretty useless but referred us to a behavior therapist. at our 3rd appt, she said she was a little stumped b/c he'd seem to have behaviors characteristic of something -- like aspergers -- then he'd strongly prove that wrong. she said to me, "what you're describing sounds like OCD, but he's awfully young." she then looked up pandas on the internet. he had high titers and a positive throat culture. funny thing was -- i didn't think ANY of what i was describing sounded anything like OCD!

 

many people i talked to looked at me with a kind of condescending look and 'he's just a boy' attitude. well, he wasn't that obnoxious boy 3 months prior! also, it was hard to explain if you didn't see it -- his actions were infused with this odd, wild, 'wrong' energy.

 

my son does something like you describe of having a fit if his brother sits in his seat -- he can have inappropriate possessive reactions. for him, i think it's more a 'just right' OCD that that's not the way things are supposed to be.

[mom love]

.

Edited December 11, 2010 by mom love

[adkmom]

Thanks to everyone for commenting.

 

Smartyjones?- Interesting you mentioned loud talking. I never thought of that before as a symptom. My dd has been doing that for at least the past year (another thing I chalked up to toddler behavior) He tested positive for strep about 6 weeks ago, so we're very new to this. The ped was terrible. I suggested the diagnosis having learned about it from my husband's colleague, another doc. The ped gave him abx and said see you in a month. That was it! Treated it like it was a cold. And we had not yet seen a specialist or done any testing....anyways. He's been on abx and we're seeing Dr. B in 2 weeks. He did well on 1 abx, was switched to another and the dose cut in half and he just slid back to where he was initially.

 

But just a side note if anyone can relate to this. His trip to a new ped this week made me realize the seriousness of his condition and for the first time I had my own private meltdown. With his abx dose cut in half, he slid right back to the beginning if not worse...This was my visit: him climbing on endtables, running into an occupied bathroom, throwing chalk on the lobby floor to break it, running through the doc's entrance and getting lost in the maze of rooms (nurses were looking for him!)doing a headstand on the doc's examing table, riding around on the doc's rolling stool, flipping it half dozen times, grabbing for his computer, grabbing for instruments, grabbing for papers on the table, then the newest one: yelling at me at the top of his lungs to keep my hands to myself when I tried to restrain him. Any discipline was out the window. He wasn't even hearing me. But leaving he politely said "thank you mommmy." what gives?

The only time I laughed was when the doc asked "do you know why you're here?" He responed "because of polar bears."

What a little smarty He's heard so much about Pandas. I went home and cried. Sorry...had to share that

.and yes of course, all the eyes of other parents on us!!!

[peglem]

Thanks to everyone for commenting.

 

Smartyjones?- Interesting you mentioned loud talking. I never thought of that before as a symptom. My dd has been doing that for at least the past year (another thing I chalked up to toddler behavior) He tested positive for strep about 6 weeks ago, so we're very new to this. The ped was terrible. I suggested the diagnosis having learned about it from my husband's colleague, another doc. The ped gave him abx and said see you in a month. That was it! Treated it like it was a cold. And we had not yet seen a specialist or done any testing....anyways. He's been on abx and we're seeing Dr. B in 2 weeks. He did well on 1 abx, was switched to another and the dose cut in half and he just slid back to where he was initially.

 

But just a side note if anyone can relate to this. His trip to a new ped this week made me realize the seriousness of his condition and for the first time I had my own private meltdown. With his abx dose cut in half, he slid right back to the beginning if not worse...This was my visit: him climbing on endtables, running into an occupied bathroom, throwing chalk on the lobby floor to break it, running through the doc's entrance and getting lost in the maze of rooms (nurses were looking for him!)doing a headstand on the doc's examing table, riding around on the doc's rolling stool, flipping it half dozen times, grabbing for his computer, grabbing for instruments, grabbing for papers on the table, then the newest one: yelling at me at the top of his lungs to keep my hands to myself when I tried to restrain him. Any discipline was out the window. He wasn't even hearing me. But leaving he politely said "thank you mommmy." what gives?

The only time I laughed was when the doc asked "do you know why you're here?" He responed "because of polar bears."

What a little smarty He's heard so much about Pandas. I went home and cried. Sorry...had to share that

.and yes of course, all the eyes of other parents on us!!!

Sorry, I had to laugh at your description of the doctor's visit, its so familiar! I once told a doctor that the other patients in the waiting room were d@mn glad to see my daughter called back! And she once threw a plastic block at her pediatrician's head (good thing he wears glasses) and in the same visit, kicked him in the groin. The thing is, it was obvious that she was not doing it out of anger- just popped up out of nowhere.

[Haileymadison]

darlene -- my ds had a fairly quick diagnosis from 'sudden onset' at age 4 1/2, (about 3 months). he had intense, disruptive school phobia as his major symptom and many other lesser -- clingy, loud talking, chewing on shirts, intense thirst at times, irritable, not cooperative, very tired in the afternoon, bad breath, obnoxious and out of control at times (he called it 'funny manners'), hyper-sensitive, silly rhyming, repeating words, 'butt talk'.

 

our ped was pretty useless but referred us to a behavior therapist. at our 3rd appt, she said she was a little stumped b/c he'd seem to have behaviors characteristic of something -- like aspergers -- then he'd strongly prove that wrong. she said to me, "what you're describing sounds like OCD, but he's awfully young." she then looked up pandas on the internet. he had high titers and a positive throat culture. funny thing was -- i didn't think ANY of what i was describing sounded anything like OCD!

 

many people i talked to looked at me with a kind of condescending look and 'he's just a boy' attitude. well, he wasn't that obnoxious boy 3 months prior! also, it was hard to explain if you didn't see it -- his actions were infused with this odd, wild, 'wrong' energy.

 

my son does something like you describe of having a fit if his brother sits in his seat -- he can have inappropriate possessive reactions. for him, i think it's more a 'just right' OCD that that's not the way things are supposed to be.

 

 

Smarty, What did you mean by "butt talk"? I am asking, because my almost 6 year old daughter felt the need to tell me every time she touched her butt or private. She would just randomly say " Mommy, I just touched my butt, am I gonna die?" She would be taking a bath and inform me that she just stuck her finger in her butt!!! It drove me crazy.

 

That was actually one of her last symptoms to go away. I was too embarrassed to tell people, even her doctor.