Are a lot of children diagnosed under age 5?

[sww817]

I was wondering how old your children are? I get a lot of information from reading the board but then there are a lot of differences in my child as well. He is only 4 and I am wondering how many children are under age 5? This age can make it hard to distinguish development / personality from symptoms sometimes.

[thereishope]

My sudden had his first sudden onset on his 5th birthday. He was diagnosed about 3 weeks later.

 

The age does make it very hard to determine what is their age and what is PANDAS. For me, this was the case esp during recovery or when I would think I was starting to see another exacerbation surface. I truly had to get to know my child all over again.

 

For my son, during his first PANDAS epsiode, he did have obvious OCD like excessive hand washing and a new found fear of dirt and being contaminated that I knew wasn't just a 5 yr old being a 5 yr old. I originally didn't know what to think of it.

 

As for the other behvaior changes, I did give him more time to "get over it" thinking it was his age and it a result of all the excitement leading up to his bday. Because of that, we we didn't go to the dr sooner.

 

He is now 6 years old.

[Megs_Mom]

Our dd had her first episode at age 3.5, but unfortunatley was not diagnosed. This episode was sudden onset, but luckily had a clear end point. Her next episode was at 6.8 and morphed into the next 1-2 episodes, which then had sudden exaserbations, but had plenty of underlying "stuff" going on a low level even between episodes. She was not formally diagnosed until almost 8.

 

I am grateful that the early episode was "short" as I think now that she would have gotten some bad diagnosis along the way, given her age and relative inability to differentiate "disorder" from behavior.

 

To this day, I am often assured by doctors & other moms, that much of what Megan has is "just normal kid stuff". She put a lot of effort into presenting "normality" when she was around other kids or people she did not completely trust.

[dut]

Hello.

 

Our dd had her first noticed episode at 4. With hindsight, I believe, we were seeing things as early as somewhere between 2 and 3 yrs old. If it hadn't been for her obvious OCD and tics at 4 yrs, we could have easily put her behaviour changes down to other things and, in fact, did for those earlier minor episodes. Things didn't feel right but you question yourself.

[sf_mom]

Our son had his first TIC at 4 1/2 and did not realize what it was until he had a full blown episode at 5 1/2.... We think he was exposed to RF and got very ill at almost 4 and a delay response at 4 1/2 when he got his first TIC similar to SC. We are now having our younger son who is 2 1/2 evaluated because he also took ill at the time, treated with IVIG but no antibiotics and diagnosed with Kawasaki's but did exhibit all symptoms. The diagnoses was made only after there was heart involvement and it could have easily been RF. He is showing signs of OCD but it could also just a TWO year old thing. I think the most concerning symptom for me right now is the puffy eyes and dark circles.

[familyof4]

My son is now six and had his first episode at age four with an explosion of tics. He did see a neurologist but PANDAS was not even considered until he had his second episode just afer he turned 5. Although his doctors were open to the idea it might be PANDAS, it was not confirmed until just recently when he had extreme behavior changes and a positive strep test with no other symptoms of strep (his throat wasn't even red). I knew what it was but it is nice to have his doctors on board with me!

[P_Mom]

My younger son was only 3 when he had his first episode.....my older son was 7 1/2. They are now 7 and 10.

[OTSMITH]

We just turned 4 when my daughter got dx. Sucks!

[EAMom]

My dd had her first likely PANDAS episode (sudden onset urinary frequency, not a UTI but she acted like she had one) at age 4 3/4. She developed a fever 2 days later which was presumed viral. Throat cultures to check for strep were never done on her until she was in the hospital with PANDAS anorexia at age 7.5 years ...and we had to request that culture, they weren't going to do it otherwise!

 

She may have had other PANDAS episodes b-4 that...but you are right, if you don't already know about PANDAS, and you don't know what to look for, some symptoms (emotional lability, anxiety, hyper behavior, etc.) and easily be written of as a "normal" phase in a preschooler or toddler!

[ajcire]

I put it together shortly before my ds turned 6.... but his first sign likely related was a the age of 2 when I took him to the dr. over concern of a constant eye blink. They told me not to worry about it, that it was a common childhood tic that he would outgrow. Ironically the dr. actually said to me that I would probably see it be bad for a while and then it would go away and come back again.....he said it like that's normal to happen to kids... GRRRR..... In hindsight I should not have accepted that it was definitely normal. A normal tic.. what the heck did I think was normal about a constant eye blink... GRRRR....

[peglem]

I put it together shortly before my ds turned 6.... but his first sign likely related was a the age of 2 when I took him to the dr. over concern of a constant eye blink. They told me not to worry about it, that it was a common childhood tic that he would outgrow. Ironically the dr. actually said to me that I would probably see it be bad for a while and then it would go away and come back again.....he said it like that's normal to happen to kids... GRRRR..... In hindsight I should not have accepted that it was definitely normal. A normal tic.. what the heck did I think was normal about a constant eye blink... GRRRR....

I keep hearing stuff like this. I wonder if it really IS common to see transient tics in childhood (even in relation to strep), but that MOST kids DO get over it, but for some reason in PANDAS kids it doesn't resolve on its own. All these pediatricians being lackadaisical about it...just doesn't seem like THAT many could just be callous jerks. And if it was uncommon- wouldn't you have more pediatricians saying, "whoa, what's up with that?"

[ajcire]

I put it together shortly before my ds turned 6.... but his first sign likely related was a the age of 2 when I took him to the dr. over concern of a constant eye blink. They told me not to worry about it, that it was a common childhood tic that he would outgrow. Ironically the dr. actually said to me that I would probably see it be bad for a while and then it would go away and come back again.....he said it like that's normal to happen to kids... GRRRR..... In hindsight I should not have accepted that it was definitely normal. A normal tic.. what the heck did I think was normal about a constant eye blink... GRRRR....

I keep hearing stuff like this. I wonder if it really IS common to see transient tics in childhood (even in relation to strep), but that MOST kids DO get over it, but for some reason in PANDAS kids it doesn't resolve on its own. All these pediatricians being lackadaisical about it...just doesn't seem like THAT many could just be callous jerks. And if it was uncommon- wouldn't you have more pediatricians saying, "whoa, what's up with that?"

 

Peg, I know... I keep thinking about this too. I do know a few other people who told me their kids had the eye blink and their doctors had told them the same thing.. and to the best of my knowledge so far their children are just fine. I keep thinking.. maybe some kids just outgrow it, maybe for some a tic is just a tic as the dr. put it to me...... but what might we have discovered if they had said... you know, just for kicks... let's just run a strep test. I mean, it might have come back negative anyway but .... oh what if... and then at the age of 4 when I went back because he was clearing his throat I accepted their answer AGAIN that it was a common childhood tic. I blame myself for just accepting that. They mentioned I could get an MRI to get a baseline in caes it got worse but seemed to think in unnecessary. I just wish I didn't just let it go at the time.

[Stephanie2]

I believe my son was 18 months when he first had a pandas episode (sudden onset of severe separation anxiety which lasted for 2 months...wouldn't let me out of his sight, had to be on my hip at all times, hit a lot, cried A LOT!). He got his first positive throat culture a few months later. I did not figure out that his problems all along have been pandas until this past summer. He is now turning 5 next week. He suffered with this for 3.5 years!

 

Stephanie

 

My dd had her first likely PANDAS episode (sudden onset urinary frequency, not a UTI but she acted like she had one) at age 4 3/4. She developed a fever 2 days later which was presumed viral. Throat cultures to check for strep were never done on her until she was in the hospital with PANDAS anorexia at age 7.5 years ...and we had to request that culture, they weren't going to do it otherwise!

 

She may have had other PANDAS episodes b-4 that...but you are right, if you don't already know about PANDAS, and you don't know what to look for, some symptoms (emotional lability, anxiety, hyper behavior, etc.) and easily be written of as a "normal" phase in a preschooler or toddler!

[faith]

If the question is about kids being actually "diagnosed" before age 5, my feeling is that it does take a little while because you kind of have to see the 'trend' or 'pattern'. As most of you said, its hard to decipher what might be normal behavior for a pre-schooler, but I feel that seeing tics at that age and knowing about the connection to strep or illness would put anyone knowledgable or educated about his on alert. I saw my son's first tic (a facial grimace) at 3 1/2. I had no idea about all this, but to be fair, my son was born in 1999, so that study of Susan Swedo was just going on at that time. Those with younger kids NOW, at least have the heads up. I know he had some progression of tics one after the other, and now looking back over his records, I do see there was a bout of wet cough and fever and I know he wasn't treated with antibiotics at that time. who knows, maybe it was more than bronchitis. don't know, but at least I could've started to look at the pattern of his illnesses and then the waxing of his symptoms. he had all the other symptoms, but I really didn't know they could be part of the bigger picture. As far as I was concerned, I had a difficult child, and he is an only child, so alot of the blame sort of went on me, that I catered to him too much.

 

So the older kids are going to be the ones who will be diagnosed later, as we are seeing here with some of our kids, but I think over time, it will be younger or as soon as one sees a pattern of something going on. It should take two or three episodes to see what might be happening. and if they're treated early enough, maybe just antibiotcs would nip it and it won't get to where some of us here are.

 

Faith

[Stephanie2]

Faith, that is really an excellent point, it does seem like most on this board have older children, I guess b/c when your children were younger there just wasn't enough information about pandas to come up with a dx. How sad! I guess I should consider myself lucky that my child was born AFTER this disorder was discovered/researched.

 

Also, I wanted to add that I do suspect that my 20 month old may have pandas, as I noticed an eye tic develop at the age of 15 months, the same week my older son had strep. I though it was seizures and took him in to have a 24 hour EEG done. It came back negative and I was shocked when the neurologist asked if he recently had strep! So, he did have strep, but I have not seen enough of a pattern to definitively decide if he has pandas. Right now he is very emotional, but he is also 20 months old and he is teething...no way to know at this age. He does not currently have tics, they went away.

 

Stephanie

 

So the older kids are going to be the ones who will be diagnosed later, as we are seeing here with some of our kids, but I think over time, it will be younger or as soon as one sees a pattern of something going on. It should take two or three episodes to see what might be happening. and if they're treated early enough, maybe just antibiotcs would nip it and it won't get to where some of us here are.

 

Faith