Could my daughter have it too?

[airial95]

I've been stressing about this for a couple of weeks. Just before we went on vacation at the beginning of the month, my son got strep - even though he's on continual abx. Dr treated him with a shot of roceferin and 10 days of Omnicef, after which we continued with his standard azith. Prior to this infection, we were at about 75-80% I would say - dealing mostly with his OCD ritual behavior, but tantrums were age appropriate again. Since the infection, we're maybe only at 40-50% or so, but getting better every day. Since he wasn't improving as quickly as we'd hoped, we even had him back in 2x for cultures, all negative.

 

Now I'm beginning to wonder about my daughter. The whole time we were on vacation we noticed a very distrubing reversal in her manners (she is usually fantastic about that!), some snippy attitudes, and even a few tantrums (which for her are rare). Since we were on vacation, and they were staying up late, not napping well, we sort of figured it was a combination of being overtired and overstimulated. We've been back a few weeks now and things aren't getting any better, as a matter of fact, even with our son only at 40-50%, there have been several days where he's been the easier one to deal with. I'm beginning to wonder if I'm going crazy, looking for things that may not be there, or what. But all of these things started at the time of her brother's strep infection.

 

She's 4, and she's always been a bit sensitive and our drama queen, but these are the things we're seeing:

- demands things without asking/using one word commands ("Mommy milk", "Spongebob", etc...)

- fixated on "beating" everyone and winning, especially against her brother

- teases her brother relentlessly just to set him off - usually about nothing

- refuses to dress herself now at all

- has tantrums over strange things

- has had meltdowns about breakfast similar to her brothers rituals (however, his rituals happen at school and we drop her off first - so she's never seen them, so I don't think she's copying, but it's a possiblity)

- woke up very upset Sunday night because "Great Grandpa is dead" (he died 3 years before she was born), and had to call all of her grandparents to make sure they're alive. She had to call them Monday and Tuesday night before bed as well - although she didn't say it was to check, but we normally don't talk to them daily.

 

She's not had any tics (but our son only has one, started at the onset of that last strep infection), or any real seperation anxiety. They're working on writing their names at school, so I'm going to ask the teachers if they've noticed anything with her handwriting or drawings...

 

I mentioned to our pediatrician that I swear she's gone crazy could we have 2 PANDAS kids, and he had me look up vulnerable child syndrome - where parents are more suseptible to see things wrong based on past experience. That may very well be what's going on here, and she's by no means as bad as our son when he's at his worst - but I'm starting to wonder???

 

Am I losing my mind? For those of you with more than one PANDAS child, how did you first notice - did you have any of the same concerns about being paranoid?

[fuelforall]

Probably not much help here but you can read my post and responses a few months back.

Sure don't like what you wrote, sounds suspicious to me. Particularly given she was one way and now she is an other. There could be some regression related to her sibling's troubles but...

 

http://www.latitudes.org/forums/index.php?showtopic=7708&start=0&p=62614&fromsearch=1entry62614

[momaine]

I've been stressing about this for a couple of weeks. Just before we went on vacation at the beginning of the month, my son got strep - even though he's on continual abx. Dr treated him with a shot of roceferin and 10 days of Omnicef, after which we continued with his standard azith. Prior to this infection, we were at about 75-80% I would say - dealing mostly with his OCD ritual behavior, but tantrums were age appropriate again. Since the infection, we're maybe only at 40-50% or so, but getting better every day. Since he wasn't improving as quickly as we'd hoped, we even had him back in 2x for cultures, all negative.

 

Now I'm beginning to wonder about my daughter. The whole time we were on vacation we noticed a very distrubing reversal in her manners (she is usually fantastic about that!), some snippy attitudes, and even a few tantrums (which for her are rare). Since we were on vacation, and they were staying up late, not napping well, we sort of figured it was a combination of being overtired and overstimulated. We've been back a few weeks now and things aren't getting any better, as a matter of fact, even with our son only at 40-50%, there have been several days where he's been the easier one to deal with. I'm beginning to wonder if I'm going crazy, looking for things that may not be there, or what. But all of these things started at the time of her brother's strep infection.

 

She's 4, and she's always been a bit sensitive and our drama queen, but these are the things we're seeing:

- demands things without asking/using one word commands ("Mommy milk", "Spongebob", etc...)

- fixated on "beating" everyone and winning, especially against her brother

- teases her brother relentlessly just to set him off - usually about nothing

- refuses to dress herself now at all

- has tantrums over strange things

- has had meltdowns about breakfast similar to her brothers rituals (however, his rituals happen at school and we drop her off first - so she's never seen them, so I don't think she's copying, but it's a possiblity)

- woke up very upset Sunday night because "Great Grandpa is dead" (he died 3 years before she was born), and had to call all of her grandparents to make sure they're alive. She had to call them Monday and Tuesday night before bed as well - although she didn't say it was to check, but we normally don't talk to them daily.

 

She's not had any tics (but our son only has one, started at the onset of that last strep infection), or any real seperation anxiety. They're working on writing their names at school, so I'm going to ask the teachers if they've noticed anything with her handwriting or drawings...

 

I mentioned to our pediatrician that I swear she's gone crazy could we have 2 PANDAS kids, and he had me look up vulnerable child syndrome - where parents are more suseptible to see things wrong based on past experience. That may very well be what's going on here, and she's by no means as bad as our son when he's at his worst - but I'm starting to wonder???

 

Am I losing my mind? For those of you with more than one PANDAS child, how did you first notice - did you have any of the same concerns about being paranoid?

even if it is just for your own peace of mind, I would do a strep throat culture and a blood draw to check ASO and antidnase. That's just me. Sounds like it could possibly be PANDAS. You would want to catch it early.

Angela

[kimballot]

Ok... I just looked up "vulnerable child syndrome"... Yes. I am sure that this syndrome exists on some level. I have certainly had many people through the years tell me that my son's problems were due to my anxiety, and I have believed them from time to time. However, anxiety in a mother does not cause changes in my son's bloodwork. Anxiety in a mother does not cause strep throat, sinus infections, immune deficiency, elevated C3d complexes or elevated Cam Kinase II activation levels. (quite the contrary - frequent infections cause anxiety in a mother!)

 

PANDAS is an immune disorder. Immune disorders run in families. What objective test could you use to check your daughter? Your son had strep in the beginning of July. Have you had your daughter checked for strep? It seems that would be the place to start, given that there has been strep in the house. If it turns out negative, then just make notes on her behavior and see if there are changes.

Edited July 28, 2010 by kimballot

[smartyjones]

distrubing reversal in her manners (she is usually fantastic about that!), some snippy attitudes,

 

She's 4, and she's always been a bit sensitive and our drama queen, but these are the things we're seeing:

- demands things without asking/using one word commands ("Mommy milk", "Spongebob", etc...)

- fixated on "beating" everyone and winning, especially against her brother

- teases her brother relentlessly just to set him off - usually about nothing

- refuses to dress herself now at all

- has tantrums over strange things

- has had meltdowns about breakfast similar to her brothers rituals (however, his rituals happen at school and we drop her off first - so she's never seen them, so I don't think she's copying, but it's a possiblity)

- woke up very upset Sunday night because "Great Grandpa is dead" (he died 3 years before she was born), and had to call all of her grandparents to make sure they're alive.

 

Am I losing my mind? For those of you with more than one PANDAS child, how did you first notice - did you have any of the same concerns about being paranoid?

 

 

arial - of course, all kids are different and presentations are different. my son's presentation has been predominantly behavioral - when i think about it, i am stunned and thankful that we were 'lucky' and didn't end up treating him as ODD with other variations for years. i've highlighted in your post thngs that are some of his major behavioral issues due to pandas. he didn't talk in specifics, but did talk often about death and dying.

i fully understand what the dr is saying about vulnerable child syndrome -- i diagnose so many kids in my mind. however, IMO, she's presenting strong pandas behaviors and you're being aware.

good luck.

[matis_mom]

My 10yo dd also showed some strange behaviors and I would say even a bit of regression (acting childlish) after the last bout of strep. I asked Dr. L and she said that it's normal to a certain extent and just watch her for now. She checks out fine, but I still some stuff that just seems "off" to me. But there really is not much I can do for her right now, since everything seems normal healthwise. So, I'm just trying to ignore it until I see more definite PANDAS stuff, but I sure hope I never do!

[thereishope]

I agree to get her tested. My daughter was spanning between 2 1/2 and 3 while my son was in exacerbations and she didn't regress or try to get attention by mimicking his ways. She just turned 4 and some of what you listed sounds like 4 year old girl but some are red flags such as

- fixated on "beating" everyone and winning, especially against her brother

- has tantrums over strange things

- has had meltdowns about breakfast similar to her brothers rituals (however, his rituals happen at school and we drop her off first - so she's never seen them, so I don't think she's copying, but it's a possiblity)

- woke up very upset Sunday night because "Great Grandpa is dead" (he died 3 years before she was born), and had to call all of her grandparents to make sure they're alive. She had to call them Monday and Tuesday night before bed as well - although she didn't say it was to check, but we normally don't talk to them daily.

 

 

Those things I wouldn't dismiss because of age. I think in your heart you know you should bring her in. I'm sorry.

Edited July 29, 2010 by Vickie

[airial95]

Thanks guys, it makes me feel good that maybe I haven't completely lost it. I spoke with her teacher today to see how she's been in school, and they said she's fantastic, no issues and she's progressing fantastic. Herhandwriting is good, and today she brought home a picture she drew of a ladybug family and we actually could recognize what she was drawing (it's still a guessing game sometimes).

 

My husband still isn't convinced and thinks she's doing it for attention, she has been known to be a drama queen. So he's humoring me and we started a tracking chart for her, specific to her issues and we're going to track that way for a week or so...and we'll see.tonight I took our son to the movies ( he has an EEG tomorrow so we have to keep him up late. Gave him some ibuprofen before we went he was an angel! ). My daughter was all fits and drama, but after we left, my husband said she was perfect, and she didn't even remember about calling the grandparents...so we'll keep tracking!

[dcmom]

I am so sorry you are struggling with this- I have been there.

 

I don't want to scare you- but I would really watch.

 

My older daughter actually got pandas at the same time as her younger sister. She was extremely mild- more hidden ocd, defiance, tantrums, etc. We put it off to stress, and ensuing preteen years. Nine months, and the flu, and she was definate pandas and ended up having pex. The nine months prior to her going into crisis were rough. My dh thought I was crazy when I brought up pandas for her- she was exceling in school and functioning well. BUT- my extremely sweet, loving, enthusiastic, helpful child had become anxious, depressed and defiant. There WAS a change- and that is the key.

 

So- if YOU feel your daughter's behavior has changed- I would ask you to really take it seriously. (I think we might have prevented my dd's crisis if we had been treating her). Four, for my kids, has been a great age- much improved over 2 and 3- so I don't know if it is normal to have her regress in behavior now. See if it passes- if it does, I wouldn't be too concerned. BUT if it continues- I would consider consulting a pandas doc if you could- or getting the Cunningham test.

 

For me- the more info I have, the better. If she is pandas- know now and maybe you can head off some stuff.

 

It was SO hard for us to see the second child having pandas- even though it was right in front of our eyes. BUT, many of us on here have multiples, it is not a coincidence.

 

Hang in there!