Another PANDAS?

[matis_mom]

Hi all,

DD9 has been having lost of fears (of monsters) since last strep infection. She's always been a bit of a drama queen, but this seems different. Other things I've noticed: hard time getting math concepts (this has gotten better now), and excesive whipping after peeing (she had done this off and on in the past). That's all. No tics, no obsessions (well, I guess the whipping thing could be considered an obsession), no frequent bathroom trips.

So now I'm debating what course of action to take. The thing is, she is very aware of her brother's PANDAS, and I'm not sure how to handle it when I go to the pediatrician. We've been there about a thousand times in the last few months to check and double check for strep. We've had positive cultures on asymptomatic children, and so now they now I'm not just making this up. I think the doctor will understand why I'm there, but I kind of don't want my daughter to think/know she has PANDAS, as I fear the knowledge will just make it worse (we girls are so emotional!)

Maybe I'll call and see if I can talk to the doctor ahead of time, before I bring her in?

Even then, what do I ask for? She probably is negative right now, and even if she has high titers that doesn't tell us much, we know she had strep a few weeks ago. Maybe just do it to have a baseline? I know, I could do the Cunningham test (ds's score: 168), but we've been spending so much just on copays and prescriptions, it would really hurt!

I know I have to do "something", I just don't know what. My husband does not think she has a problem, but I'm worried. At this point, would it make much of a difference if I just wait and see?

 

Any thoughts are greatly appreciated!

 

Isabel

[Kayanne]

Give her Motrin for a few days and see if there is a difference...that could be a good indicator...

 

Try to increase her Omega 3s for anti-inflammatory properties

 

You have had good results with prednisone with your son, are you willing to try with your daughter? Although, I think (me personally) if I were to agree to that for a "possible" PANDAS case, then I would want my child to also be on full-strength antibiotics.

[saidie10]

Oh gosh, sorry you are dealing with this. I can totally understand you worrying about a sibling when another one already has a dx. Another problem (well I don't think it is a problem, but DH does) is that as Mom's watching our kids and potentially other kids go through this, we watch for EVERYTHING; every behavior, every funny comment, movement of body part, etc. Of course your DH thinks she is fine! If he is anything like my DH, he was in complete denial for months regarding the possibility that my son could have a tic disorder. He's just being a kid he would say. Just a nervous habit. I would say..."did you see him do that, did you hear that sound he keeps making". We as Mom's just can't help but have our kids under a microscope because it is our job. DH's will see it when they need to see it, until then you keep watching and doing what you need to do for your daughter. He will thank you for being so observant in the end and she will thank you to for taking such good care of her!

 

quote name='Kayanne' date='May 14 2010, 11:40 PM' post='67673']

Give her Motrin for a few days and see if there is a difference...that could be a good indicator...

 

Try to increase her Omega 3s for anti-inflammatory properties

 

You have had good results with prednisone with your son, are you willing to try with your daughter? Although, I think (me personally) if I were to agree to that for a "possible" PANDAS case, then I would want my child to also be on full-strength antibiotics.

[Megs_Mom]

I would be concerned that this is pandas. It certainly sounds like OCD - intrusive thought (monsters, not appropriate for a 9 year old), excessive wiping (which is a VERY common pandas symptom), etc. I would have her checked again for strep, then have her go out into the lobby with dh while you discuss "something else with the Ped privately" - this can be about your son, etc. Then ask for her to be treated with abx. I think at this stage, you don't have to tell her about pandas yet - you can just continue to treat her for unresolved strep.

 

Hopefully you are catching soon enough that the OCD will not be "stuck". If it is a little stuck, you can teach her a few ERP tools, as these issues are still pretty mild (I think?) and we found these particular OCD issues to be some of the easier to deal with from a "brain tool" perspective.

 

Also, agree with Motril & Omega 3 reco - we also use 1000 mg of Vit D, and that seems to really help illnesses resolve quickly.

[dcmom]

Mati's mom-

 

I agree with Meg's mom....

 

We had this same situation with our 9 yr old. I was afraid to tell her we were concerned she might have pandas, after her sister had such a debilitating and dramatic onset. I DID however tell her, and just explained that there are many types of pandas: some very mild, and some more severe, and that we thought she might have the very mild version. She REALLY accepted that fine, and was relieved that we were adressing her issues- we found out that she was hiding a few ocd issues that we didn't know about. So in a way, it can be helpful to be honest (but very tactful).

 

Good luck- two is twice as hard..

[matis_mom]

Mati's mom-

 

I agree with Meg's mom....

 

We had this same situation with our 9 yr old. I was afraid to tell her we were concerned she might have pandas, after her sister had such a debilitating and dramatic onset. I DID however tell her, and just explained that there are many types of pandas: some very mild, and some more severe, and that we thought she might have the very mild version. She REALLY accepted that fine, and was relieved that we were adressing her issues- we found out that she was hiding a few ocd issues that we didn't know about. So in a way, it can be helpful to be honest (but very tactful).

 

Good luck- two is twice as hard..

Thanks all for the replies. I think I am going to take her to the pediatrician and have her checked. I also have started to talk to her a bit more about her fears, and how to cope with that. Last night we did breathing counts, that really helped her relax before bed. I started her on some of the supplements her brother is on, and will have to get more on the ball about getting silver, probiotics and fish oils into everybody (a full time job, let me tell you!)

I might take her to the holistic doctor who diagnosed my son to get a good check up on her.

One thing at a time. I mentioned it again to my husband and he said, "It will pass", our older also went through a period like this, than then went away. Maybe we are all a little PANDAS after an illness, but for some of us it wears of, for others it just gets stronger.

We have a follow up with Dr. Latimer at the end of the month, I'll call and see if they can squeeze her in with her brother.

I guess that's going to be my summer project, get it all figured out, get the strep out to the house, and get Matias through plasmapheresis...

 

Isabel

[Stephanie2]

When I first learned from our local neuro that my second child had pandas (my first had been diagnosed a month before...by ME), no one believed me, not even my husband! He figured that I must have put the idea in the neuro's head, which did not happen. I did not mention my 5 yo's PANDAS (as I was not 100% sure yet) to him which is why I was so SHOCKED when he said my 2 yo has it!!

 

Anyway, the whole family thought I was losing my mind. My mom and brother said that I was just trying to come up with things to keep me busy (!!! LOL!!!), and my husband said that I was just obsessed! Well, my husband now knows different as a lot has happened since then. My family, however, still wonders if I have lost it. I think they think that I have successfully brainwashed my husband into believing this "nonsense"!! Just love being the laughing stock of my family, let me tell you...

 

OK, sorry for the vent!! I guess I needed that

 

My point is that listen to your gut, not your husband on this. The mom is always the first to know.

 

Stephanie

Mati's mom-

 

I agree with Meg's mom....

 

We had this same situation with our 9 yr old. I was afraid to tell her we were concerned she might have pandas, after her sister had such a debilitating and dramatic onset. I DID however tell her, and just explained that there are many types of pandas: some very mild, and some more severe, and that we thought she might have the very mild version. She REALLY accepted that fine, and was relieved that we were adressing her issues- we found out that she was hiding a few ocd issues that we didn't know about. So in a way, it can be helpful to be honest (but very tactful).

 

Good luck- two is twice as hard..

Thanks all for the replies. I think I am going to take her to the pediatrician and have her checked. I also have started to talk to her a bit more about her fears, and how to cope with that. Last night we did breathing counts, that really helped her relax before bed. I started her on some of the supplements her brother is on, and will have to get more on the ball about getting silver, probiotics and fish oils into everybody (a full time job, let me tell you!)

I might take her to the holistic doctor who diagnosed my son to get a good check up on her.

One thing at a time. I mentioned it again to my husband and he said, "It will pass", our older also went through a period like this, than then went away. Maybe we are all a little PANDAS after an illness, but for some of us it wears of, for others it just gets stronger.

We have a follow up with Dr. Latimer at the end of the month, I'll call and see if they can squeeze her in with her brother.

I guess that's going to be my summer project, get it all figured out, get the strep out to the house, and get Matias through plasmapheresis...

 

Isabel

[dut]

Hi - I agree with Stephanie2.. listen to your gut, not anyone else.

 

One plus point (if that's possible with having 2 kids with PANDAS), is that our dd6 was glad to hear her brother has it 'cos now she isn't the only one in the family with it and as he's having some issues currently, she's understanding of the problems he's having.

Edited May 15, 2010 by dut

[sf_mom]

Listen to your gut. Our younger twins have responded extremely well to just antibiotics. Plus, if she has any unresolved strep it could be a problem for your son after treatment.

[thereishope]

I'm sorry. You don't have enough on your plate, do you? Did you take her in for a follow up strep test from the last time?

[matis_mom]

I'm sorry. You don't have enough on your plate, do you? Did you take her in for a follow up strep test from the last time?

Yeap, I did. We were two days shy of two weeks after finishing the antibiotics, but we had so much going on that Friday and Saturday, I brought them all in on Thursday (yes, all 7 -baby stayed with dad- in one of those tiny exam rooms!) I just wanted to make sure we did not start the cycle back again. Now I'm thinking, maybe it was too soon? Anyway, for her it was just an ear infection. But I'll bring her in this week just to be extra sure.