Very worried.. could this be start of PANDAS in non-PANDAS dd?

[monarchcat]

DS9 has PANDAS and probably has had it since age 5. My daughter, who will be 4 in August has seemed perfectly fine up until now. A couple weeks ago she dropped an m&m on the floor and picked it up and ate it. No big deal, but my husband said something along the lines of "That's fine, but generally you don't want to eat things that you drop on the floor or the ground." Very mellow, not a big deal. Since then though I will give her something and she will ask me a few times, "Did I drop this?" Even when she knows it's been in her hand the whole time. She's very smart and very verbal, so it's not a comprehension problem. She KNOWS she didn't drop it, but will ask anyway. My husband says she will ask him, "is this my drink?" quite a lot when they are out somewhere (and even at home, though she's only done it with me once or twice). Even when the drink hasn't left her hand.

 

Tonight was a big issue, though, and here's why I'm worried: We had a babysitter tonight, someone who babysits frequently and my daughter adores (she's a preschool teacher). While the sitter was cleaning up the kitchen after dinner, my daughter was sitting at the table having an ice cream sandwich. She asked the sitter, "Did I drop this?" Of course the sitter has no idea that there is any history to that, so she says, "I don't know, did you?" my daughter BURST into wild tears and kept asking over and over, "Did I drop this?". The sitter said, "Honey, no you didn't drop it, it's fine.. see? It's there in your hand, you didn't drop it" But my daughter asked over and over and over. At one point the sitter said, "Can you tell me why you are asking me over and over?" and my daughter just said, "I don't know" and then asked again. She ended up falling asleep crying because she couldn't calm down.

 

I'm very worried that this particular incident in particular seems VERY OCDish. Then again, kids get stuck on weird stuff and until tonight I had thought that it was just age appropriate. Tonight seemed different and based on how the sitter told it, she just seemed really stuck. What seemed to make it turn bad was the fact that the sitter originally (unknowingly) said, "I don't know".

 

Here's the kicker.. she had strep about 6 weeks ago.

 

Is this a first PANDAS episode?? What do I do?? Should I see if I can convince our ped (who already thinks I'm nuts, but humors me with abx for my son based on my consult w/ Dr. L, etc.) to prescribe maybe a month of abx for my daughter? If this is a first PANDAS episode, can we maybe nip it in the bud? If so, which antibiotic and for how long? I can check titers, but I know that titers mean diddly squat.

 

What do you guys think?

[EAMom]

I think I would start by getting her throat cultured to make sure the infection from 6 weeks ago cleared.

 

I would also culture other family members, esp. if there are other kids.

 

It sure sounds like the start of OCD/PANDAS.

 

If your ped won't give you abs, I would be really careful about documenting everything to build a case for later.

[laurenjohnsonsmom]

I agree the throat culture wouldn't hurt but slim chance she would test postive this late after initial strep 6 wks ago, yes? I would DEMAND aso/antiDnase (or beg, if that's what it takes), my ds10 has had her titers peak 4x since last dec. Only once was she symptomatic. She was also routinely cultured during this time frame and never had a positive throat culture. I hope in your case you dd dies test positive but have a "plan b"!

 

My younger dd10 has had mild/moderate body imaging, OCD, seperation anxiety, weather fears and more that coincide with strep. We are carefully watching and routinely testing her titers and she has been I'm abx since last December. She has yet to have her titers ever fall back into the normal range. We recently treated her last strep infection (pos titers and symptoms) with omnicef and rifampin to try to break the possible carrier state. We retest all of our titers again on Monday. Audrey is the opposite of her sister as she gets a titer rise, her total IGg levels (immune system) is normal, and all of her pneumococial sterotypes are normal. She did test in the positive CAM range on madeline's test.

 

I know how frustrating this must be for you and the fear of the "unknown". Again, try to get her titers checked. Check the whole family if possible to make sure you're not passing it around. Get her on abx (Audrey takes azith because she's allergic to augmentin), it can't hurt to try to nip this while you can.

 

Good luck and keep us all posted.

 

Lynn

 

I think I would start by getting her throat cultured to make sure the infection from 6 weeks ago cleared.

 

I would also culture other family members, esp. if there are other kids.

 

It sure sounds like the start of OCD/PANDAS.

 

If your ped won't give you abs, I would be really careful about documenting everything to build a case for later.

[thereishope]

My heart just sunk. That's reassurance OCD. Is she spiralling into hand washing, blowing on food before eating? Did you have a follow up strep test done on her yet?

 

With little kids (even age 4) I would say that one OCD habit surfacing might be okay if it was related to a bedtime ritual or a wanting specific plate, but the one you are describing, I wouldn't put into the catagory of "acceptable for the age". Especially since it sparked a meltdown when it wasn't fulfilled.

 

What you can do is to try to get her to overcome it and kind of see how that goes. When she asks you if it was on the floor, you can say "I will answer you once, but not again. Look at me to make sure you are hearing me. No, it did not fall on the floor". Then maybe after a week, warn her that you will not answer the question at all. This may cause anxiety at first but hopefully, it will calm down after a few days.

 

When you bring her to the dr for a strep test, make sure they check her ears and nose to make sure those aren't infected. Don't make a nurse appt.

Edited April 25, 2010 by Vickie

[forjpj]

I'm sorry! It sure does sound the like the start of something. Vickie put it well...my heart sank!!

Is it feasible to take her to see Dr. L? Can you do an initial phone consult with Dr. L? I'm not sure how that works. Maybe if you call up there and speak with Andrea she might have an idea on what Dr. L could or would do? Maybe you could find some literature which emphasizes how common it is in family to take to you ped?

I know it probably isn't much comfort right now, but at least you know what your dealing with! Good luck!!

[monarchcat]

Thanks, guys. I'm just heartsick at the thought of her having PANDAS, but I know how common it is for more than one child in a family to have it, so I can't say that it's something we've never thought about.

 

I have an appointment at our family practice tomorrow for a physical and I will try to grab a minute with the kids ped while i am there just to give him a head's up, and I'll make an appt to bring her in tomorrow for a swab and maybe blood work for titers.

 

In theory, titers should be elevated anyway since she did have strep 6 weeks ago, right? My son has never shown a titer response but he was never tested this early. So if they are high... that really just confirms the past strep, right? If she's positive on the culture that would be something concrete, for sure, since she's asymptomatic right now.

 

[laurenjohnsonsmom]

I would think that 6 weeks post strep, especially if she was treated with abx that her titers would be normal (maybe slightly elevated). If she tests positive you will have to repeat the titers 1-2 weeks out to see if they are on the rise or the fall.

 

Maybe Buster wll chime in on this..

 

Thanks, guys. I'm just heartsick at the thought of her having PANDAS, but I know how common it is for more than one child in a family to have it, so I can't say that it's something we've never thought about.

 

I have an appointment at our family practice tomorrow for a physical and I will try to grab a minute with the kids ped while i am there just to give him a head's up, and I'll make an appt to bring her in tomorrow for a swab and maybe blood work for titers.

 

In theory, titers should be elevated anyway since she did have strep 6 weeks ago, right? My son has never shown a titer response but he was never tested this early. So if they are high... that really just confirms the past strep, right? If she's positive on the culture that would be something concrete, for sure, since she's asymptomatic right now.

 

[P_Mom]

Monarchcat,

 

That is EXACTLY how my younger son manifested with his first PANDAS episode at 3 years old that went under our radar. We knew he was acting strange....asking those questions....mom, is their slobber on my food? Mom, is their slobber on my fork? He just acted weird in asking those reassurance questions. We didn't know what to make of it and it went away after a month or so, so, we didn't give it a second thought....until 2 years later when he developed strep again and all **** hit the fan...big time!

 

I would be concerned...... hopefully, it is nothing, but.......

[dcmom]

monarchet-

 

I am so sorry. We have two pandas daughters- so I know the pain of having to go through this all over again. I don't really remember the story of your other child, but if at all possible I would get to Dr Latimer. She has quite a few families with pandas siblings. She was very open to exploring the possibility of pandas with my second child.

 

I am not sure what the titers will tell you. You know she had strep. Both my kids have pandas- I am not a big fan of titers, if you had documented strep, I don't know what titers will tell you right now. The first thing I would do, if she is off abx, is a throat culture. You want to be sure you cleared the strep. I would then try to get at least a month of daily antibiotics. This is how we proceeded with second daughter. After we saw some calming on abx for 30 days, we did a month long tapering steroid burst- which brought her back to herself completely. (This didn't last, but for some kids it does).

 

I don't believe there HAS to be and active infection for her to continue with pandas symptoms. I DO think you want to address this right away with Dr Latimer. Our second daughter had pandas for about 7 mos, but at a much more functional lower level. Then, she got the flu, and went off of a cliff. If I had been more prepared (doubled up abx, did tamiflu, did steroid burst immed following flu recovery) maybe we could have avoided the acute episode.

 

If, financially, it is an option, I would consider the Cunningham test, also.

 

My heart goes out to you and your family. Please keep us posted.

[thereishope]

I'd suggest giving her Ibuprofen for the next week or so.

[simplygina]

I know how hard it is to wonder about the child that you've thought of as the "non-Pandas" kid is. I've been watching my other son like a hawk, and there are definitely some things there that make me wonder. At least you know there has been a strep infection. My son is totally asymptomatic (normal symptoms anyway) and gets it both in his throat and his bottom. 3 weeks ago he had a rash on his bottom and leg that looked like Scarlitina to me. I took him to the InstaCare and she told me she couldn't swab it. She also didn't swab his throat or his bum and told me she was just going to give me abx anyway. I was glad to get the abx, but I really wanted to know if it was strep! After 3 days on Keflex he ended up with the tell-tale red ring around his anus. I kept giving him the Keflex and it went away in about two days.

 

He has had encompresis since he was 4 but goes through phases with it. The past few months he hadn't been able to go on his own, but wasn't soiling his underwear either. That's just kind of normal for him at this point. Then he started wetting the bed again (always off and on too) and soiling even when he'd had a B.M. that day. A few days on the abx and all of that stopped. 3 or 4 days off and he actually went to the bathroom by himself for the first time in 4 months or so. The past 3 weeks he has been crying a lot, in trouble with his teacher for constantly blurting out answers and talking over her words, even correcting her when she is trying to teach the class! She's at her wits end and I don't know what to tell her. And it doesn't matter how many times he gets in trouble for it, he just can't control it. He has been asking me to come outside with him when he plays, which is totally new because he has never been afraid before. And the past 2 months I've noticed what I think is a head shaking tic. So frustrating and heart-breaking to think that it could be PANDAS with him too!

 

My son also first manifested his OCD with asking for reassurance and checking with me about things over and over. He was also about 4. At the time I knew he had some anxiety so I figured that's what it was. It's only looking back that I realize his OCD started way earlier than I thought.

 

For my "non-Pandas" son I have decided to have his CamKinase II levels tested as well. The titer thing for my older son has never been very helpful. If the Cunningham test comes back in the positive range, then I'll be able to go to his doctor or a specialist with some really useful information.

[monarchcat]

I have an appointment with her ped tomorrow afternoon and will discuss all this and push for a month of abx. I had a physical today and had her do a swab on me and she'll test my ASO titers when I have blood drawn for labs tomorrow, just to make sure I'm not carrying.

 

I'm thinking about doing the Cunningham test for her.

 

I guess my plan would be this... please tell me if this sounds reasonable:

 

1. See the pediatrician, explain what's going on.

 

2. Get a throat culture.

 

3. Possibly get titers checked. (Positive strep was almost exactly 2 months ago at this point.)

 

4. Beg for a month of abx.

 

5. Watch her like a hawk and document everything. See if behaviors diminish.

 

6. After a month of abx just keep monitoring and see what happens.

 

7. If we have another incident after that, get Cunningham test and look at more long term abx.

 

I don't want to be too conservative, but I also don't want to rush into things. She seems fine now, with the exception of the "big" reassurance OCD incident, and then several times during the day questioning of us ("I didn't drop this, did I?", "Is this my cup?", and "Is there a bug on this?") but usually she will only ask once or twice and is fine.

 

If I can get abx for her, what do you think would be best?

Edited April 26, 2010 by monarchcat

[saidie10]

Sorry you are going through this. I am sure you worry constantly about your DD since your son does have PANDAS. I am constantly watching my DS5 now that I know we may be having a diagnosis soon of PANDAS for my DS7. I feel for you! I am sure you analyze every little thing she does. My DS5 had strep too about 8 weeks ago so I am really watching him now! He has this hand tic thing he has been doing for a while and it seems to be getting worse. Gosh I hate freaking about every little thing...it sucks doesn't it!

 

I hope you get answers soon. Keep us posted.

 

 

DS9 has PANDAS and probably has had it since age 5. My daughter, who will be 4 in August has seemed perfectly fine up until now. A couple weeks ago she dropped an m&m on the floor and picked it up and ate it. No big deal, but my husband said something along the lines of "That's fine, but generally you don't want to eat things that you drop on the floor or the ground." Very mellow, not a big deal. Since then though I will give her something and she will ask me a few times, "Did I drop this?" Even when she knows it's been in her hand the whole time. She's very smart and very verbal, so it's not a comprehension problem. She KNOWS she didn't drop it, but will ask anyway. My husband says she will ask him, "is this my drink?" quite a lot when they are out somewhere (and even at home, though she's only done it with me once or twice). Even when the drink hasn't left her hand.

 

Tonight was a big issue, though, and here's why I'm worried: We had a babysitter tonight, someone who babysits frequently and my daughter adores (she's a preschool teacher). While the sitter was cleaning up the kitchen after dinner, my daughter was sitting at the table having an ice cream sandwich. She asked the sitter, "Did I drop this?" Of course the sitter has no idea that there is any history to that, so she says, "I don't know, did you?" my daughter BURST into wild tears and kept asking over and over, "Did I drop this?". The sitter said, "Honey, no you didn't drop it, it's fine.. see? It's there in your hand, you didn't drop it" But my daughter asked over and over and over. At one point the sitter said, "Can you tell me why you are asking me over and over?" and my daughter just said, "I don't know" and then asked again. She ended up falling asleep crying because she couldn't calm down.

 

I'm very worried that this particular incident in particular seems VERY OCDish. Then again, kids get stuck on weird stuff and until tonight I had thought that it was just age appropriate. Tonight seemed different and based on how the sitter told it, she just seemed really stuck. What seemed to make it turn bad was the fact that the sitter originally (unknowingly) said, "I don't know".

 

Here's the kicker.. she had strep about 6 weeks ago.

 

Is this a first PANDAS episode?? What do I do?? Should I see if I can convince our ped (who already thinks I'm nuts, but humors me with abx for my son based on my consult w/ Dr. L, etc.) to prescribe maybe a month of abx for my daughter? If this is a first PANDAS episode, can we maybe nip it in the bud? If so, which antibiotic and for how long? I can check titers, but I know that titers mean diddly squat.

 

What do you guys think?

[EAMom]

In theory, titers should be elevated anyway since she did have strep 6 weeks ago, right? My son has never shown a titer response but he was never tested this early. So if they are high... that really just confirms the past strep, right? If she's positive on the culture that would be something concrete, for sure, since she's asymptomatic right now.

 

 

That's the way I see it...

 

if they are elevated...it could be b/c she had a strep infection 6 weeks ago, doesn't really say much about her current situation

if they are normal ...we already know she had a strep infection 6 weeks ago, so they either dropped quickly (possibly b/c of treatment with abs), or she (like my dd) is one of those kids that doesn't get a titer rise in the first place

 

But LaurenJM is correct that rising titers (one now, and one in a month or so), would be suggestive of a strep infection. However, if the titers are NOT rising, that doesn't disprove a strep infection/pandas.

 

On the other hand, a positive culture (which is possible after 6weeks, my dd's was positive after 8, with low titers, no sore throat, severe behavioral symptoms) would be concrete evidence of a strep infection. This would make it easier, convincing your ped, to get antibiotics if your dd is currently culture positive.

 

If your dd is culture neg, it is possible the strep is elsewhere (sinuses, perianal), so you could try culturing elsewhere (our dd was culture positive perinal when she was throat culture positive) ....

 

If you are still unable to convince your ped to dispense abs (and all cultures are neg), then you could consider the titer route (now and next month to see if they are rising).

 

I would also think about doing a Cunningham test (esp. if you are drawing blood for titers anyway...I know it is traumatic to poke the little ones!).

Edited April 26, 2010 by EAMom

[EAMom]

I don't believe there HAS to be and active infection for her to continue with pandas symptoms.

 

agreed