PANDAS in a very young child

[airial95]

We got an email from Dr. Murphy last night asking if we would object to her using our son for a case write up of PANDAS in a very young child (under 3)! I know we just recently had a discussion about if the age of onset is important (over 3), etc...

 

She sent over her draft, asking me to fill in questions and details she was asking for, and I have to say, I'm very impressed. She has details highlighted in there that we discussed, but seemed to be just passing points in conversation. I'm impressed on how well she knows my child's history - even the things that we spoke about that weren't in his medical records. She even made note of his habitual thumbsucking with his particular way of holding the blanket (something my husband and I have remarked about, but haven't discussed with any of the doctors - it was just something she observed.)

 

I hope this will be a step towards helping folks identify PANDAS in young kids vs. thinking it was just the terrible twos!

[Fixit]

Though i am sorry that your child or any child should be a part of this paper/study...

i think it is great that doc m is willing to look at younger kids...i think they all do...but maybe now that we are getting some traction..we can push into the other realms...

and yes i think it can be just more than terrible 2's...

thank you for posting this and thanks for possibly letting your child lead the way!!!

[Johnsmom]

Thanks from me too for posting this. I know my son got pandas at a very young age, quite possibly at the age of one.

 

He is now 9 years old. He had IVIG with Dr K 14 weeks ago. We had a 16 day streak of "typical" 9 yr old behavior just a few weeks ago. It was just like the steroid burst. It was amazing!

 

Things changed for him though, almost overnight last Thursday. It hurts beyond words to see it disappear. I know he has been re-exposed. i just know it. He told me "My mind is over taking myself".

 

We see Dr K next week for our 3 month post IVIG appt.

 

Please tell your doctor that this is so desperately needed for kids like my son. I know there are children out there that are mis-diagnosed like my son was and they are not getting the help that they need and deserve.

 

johnsmom

[Stephanie2]

If she is looking for more under 3 kids, let her know my 5yo started at 19 months and my 2.5 yo started at 15 months!

[Sylvia]

I'm so sorry to hear that johnsmom. I don't have any words of wisdom or advice, but I am going through the same things at know how it hurts.

 

Thanks from me too for posting this. I know my son got pandas at a very young age, quite possibly at the age of one.

 

He is now 9 years old. He had IVIG with Dr K 14 weeks ago. We had a 16 day streak of "typical" 9 yr old behavior just a few weeks ago. It was just like the steroid burst. It was amazing!

 

Things changed for him though, almost overnight last Thursday. It hurts beyond words to see it disappear. I know he has been re-exposed. i just know it. He told me "My mind is over taking myself".

 

We see Dr K next week for our 3 month post IVIG appt.

 

Please tell your doctor that this is so desperately needed for kids like my son. I know there are children out there that are mis-diagnosed like my son was and they are not getting the help that they need and deserve.

 

johnsmom

[smartyjones]

arial -- so interesting! my ds6 had 'sudden onset' at age 4.5 with behaviors that certainly were disruptive, new and needed attention. however, previously, he occasionally had what we thought was normal 2, 3, and 4 year old stuff that was totally age-appropriate. now, i have a different view on it.

 

intense potty phobia was the one big issue -- no one (relatives, friends, drs) wanted to hear me that it was not normal potty stuff.

 

3 months prior to onset, he had an episode of cognitive inflexibility on a vacation a few days after vomiting. we thought it was vacation and altitude related.

 

somewhere around age 2.5, he had two instances of intense separation anxiety and cognitive inflexibilty. at the time, ALL this was seen by everyone to be 'normal' toddler stuff -- even by me.

 

now, i really belief the potty is related and that began about a year and 3 months prior to onset -- but of course, when we began potty training. at the time, the dr even thought his throat 'looked like strep' but he was neg on rapid and culture.

 

i think your son being part of this study is very exciting b/c the implications could be astounding if/when it becomes common knowledge to tie behavior to infections! kudos to you for participating in it! good luck with your son's treatment.

Edited September 23, 2010 by smartyjones

[Megs_Mom]

Really cool! And so glad you are willing to share your child's history. Our dd's "first" episode was at age 3.5 - it was clearly PANDAS. But we had one time before she could communicate the "why" of things - maybe age 2 - when she suddenly became terrified of swings. To the point of screaming when she saw another child approach one. It lasted about 2 weeks, and then faded away. I lost the timeframe, so have no idea what was going on healthwise at the time. It was so out of character that I have never forgotten the moment it happened. She went from being a child that would live on the playground, to refusing to go at all. We spent about a week or two unable to even walk her near a playground. Wierd what you remember and see in retrospect.

[airial95]

I think we have been really lucky to have such a great network of people around us that helped identify issues. My son has always been way ahead of the curve developmentally - he was even talking in full sentences ay the time he was 18 months old. So when he started having bad problems at school (which is where most of his anxiety acts up), at first we thought it was cause we switched day cares. After we moved them back to the old one he was perfect again - for a week. Then we thought, well, he's really bored in this classroom, he's to mature for it, so that's why he's acting out. We moved him up - it got better - for a couple of days. Finally, after a nightmare of a vacation and the most stressful holidays trying to keep from setting him off - it was the director of our day care (whose known him since birth and has a PhD in special ed) who bluntly said - somethings wrong - this isn't your kid. Something we already suspected - but to hear it from an outside point of view who wasn't judging it as our parenting skills set off a light bulb. And our pediatrician was fantastic. He kept such good records of all of our visits, phone calls, emails where we were asking questions about Bummy's behavior and what we could do about it (parenting tips) that he was able to track the start of those calls to the impetigo infection.

 

For months - we thought what he was doing was "age appropriate" - but our pediatrician put it best. You're his parents - as long as you have realistic expectations of your child at this age, and you don't think it's normal - it's probably not.

 

I think the thing I'm most excited about with Dr. Murphy doing this case write up on my child is I'll have a great, detailed description of his disorder and history to give to the schools, doctors, etc... rather than trying to describe it all myself and them looking at me like I'm a loon!!!