question for Dr K families

[PANDASmcnuggetsw/fry/coke]

We might be doing IVIG with Dr K after we finally get dd's infection cleared up. We have only had the phone consult so far, so he has not met dd. My question for those families that work with Dr k is about that initial meeting that he has with your child. I have been made aware that it is a bit unconventional. I'm not asking what he does, I got that, but what is the rationale, if you know. Feel free to pm me. With the cost of IVIG likely out of pocket, flying and hotel stays, AND the delicate state of dd, I'd like to understand more before this initial meeting.

 

Thanks so much,

PANDAS McNuggets w/fry/coke

[P_Mom]

Wellll.......my kids were perplexed to meet a doctor like him....they thought he was the wackiest guy they ever met!

 

My husband and I were taken a bit back ourselves, but, we, like you, knew to expect someone/something different. He is very knowledgeable on PANDAS...and he sat with us and let us ask all questions we wanted. He is a no nonsense kind of guy...that is for sure.

 

What he does that will strike you as odd is he tries to make your child "uncomfortable", so to speak, by doing and saying some weird things. He is trying to "bring their symptoms out."

 

There is a method behind the madness! We really did like him and would recommend him to anyone....things settle after that first meeting.

[PANDASmcnuggetsw/fry/coke]

Thanks P. Mom.

 

Did you give your child the heads up in any way....like "don't be surprised if he is wacky or jokes around?" Or did you keep mum? It is hard being the mama bear that I am not to give some type of heads up (while at the same time not blowing an experiment). DD is so fragile right now I just can't see pushing her buttons and being complicit. kwim?

 

Thanks,

PANDAS McNugetts w/fry/coke

[JAG10]

I would agree with Kelly's highlights. He throws the child off guard and mixes in very simple questions too in order to see how/if they rebound. When he asked my dd10 how old her sister was, she looked to me unsure and confused when she clearly knows how old her sister is.

 

Be prepared to wear your poker face or "pretend" you are busy with papers or something. It only takes him a few minutes to size up your child, 5-10 tops. The rest is time answering your questions. I felt sooooo much better after meeting with him! Let's face it, flying halfway across the country to meet a doc you've only spoken to on the phone an hour and you are about to hand over your child and 5 figures in dough.... it takes guts and a certain level of desperation many of us have shared. My daughter was ten, had been on psych meds for four years, had no history of strep except high titers and I had no clue about sudden onset. He knew right away and without any hesitation or doubt based on her clinical presentation that she had PANDAS and has been there for us ever since she had her IVIG in the end of May. I would at 14 weeks post her only IVIG she is 75-80% better and psych med free!

 

Best wishes for an uneventful procedure and recovery!

jill

[Worried_Dad]

Dr, K is definitely a unique guy with an unconventional style and an off-the-wall sense of humor. But here's the good news. Our PANDAS son has been through the meat-grinder with an endless stream of docs over the past 3+ years. Quite frankly, he doesn't like doctors... and - based on the way he's been treated by many of them - I don't blame him. But he loved Dr. K! Dr. K could always make him smile or laugh, even in exacerbation when happy moments were extremely rare. He told me that Dr. K is definitely his favorite healthcare professional.

 

Oh, and during our 2nd round of IVIG in Oakbrook, I was talking with the surgical nurse. She mentioned that they all love Dr. K, too, and that she takes her own children to him. Coming from a nurse who works with him regularly, I'd say trusting her kids' health to him is pretty high praise.

 

So don't worry. The pre-IVIG consult is not long, not painful, and it's a huge relief as a parent when you finally speak with a doctor who totally "gets" PANDAS!

[norcalmom]

He's got this comedy routine he does, and will make your child slightly uncomfortable, but not too much- sort if have them wondering if he is serious or not.

I was skeptical too- turned out fine. He is with you ALOT over the 3 days, and what initially makes your child uncomfortable becomes a joke that they can banter about to keep the kid entertained and at ease.

If u tell him ahead of time that your child is very fragile and doesn't take joking around well, I'm sure he won't. We found it pretty funny. Be aware that he might gender switch you child and say something like "you seem like a nice girl, would u like some barbies to play with?" to a boy. So if your child has any gender issues might warn him off that routine.

Good luck. We are 4 weeks post. Making progress, but no overnight turn around.

[PANDASmcnuggetsw/fry/coke]

Thanks everyone for your input. I think my dd would definetly feel threatened by the situation to the point that I don't know if she would relax and trust him over the course of the IVIG. I think she would also question her father and me as to why we would put her through this, given her OCD issues. I guess scruplosity might be it, but it is larger than that. You just don't do ANYTHING that is in her mind morally questionable. It is to the point that the ladies pictures painted on WW2 bomber planes are immodest and need to be covered up in books. Boys and girls have separate roles and boys do not do anything in the girl area (like wear pink or be effeminate) and vice versa. You get the picture.

 

I just think she would need a heads up or she might have a trust issue with us. kwim?

[tpotter]

I just read your post to my boys (14 and 17), and they laughed. He saw my now 17 yo (was 15) with long hair, and said: "Hi Louise!" My son, who also has Asperger's whispered to me: "does he think I'm a girl?"

 

He just laughed tonight, and said, "he wouldn't call me Louise today...I still have the long hair, but my face is covered too!"

 

Yes, he has a very dry sense of humor, but he is so incredibly wonderful, warm, really cares about the kids, and most of all, really "gets" PANDAS.

[danddd]

i think he really can read pandas children well. my daughter was uncomfortable, but she did ok. he makes it work, for the kids and parents. dont be afraid. at the surgical center they are all so nice. my dd9 refused to give them her arm for an hour, they were so kind and patient, and in the end, she did great.

[PANDASmcnuggetsw/fry/coke]

I can totally picture him being warm and kind and funny later, and that is good, but did any of you give a little head's up to your kids? My impression is that he is totally serious when he is doing it and that would freak her out. Given she is already uncomfortable with male doctors and her type of OCD, it's hard for me to feel like a co-conspirator to her further distress when she has already suffered so much.

 

PANDAS McNuggets w/fry/coke

[P_Mom]

PANDAS mc nug fry coke.

 

No, we did not give our boys a heads up...we didn't want to mess with what Dr. K was doing.

It is funny... like the others said, he was calling my boys girls names and even brought in some girl toys in the examining room for them to play with. They were both sitting on the exam table...and neither would touch the toys...each kept flickin/sliding the toys back and forth between themselves. Some things he said were so off the wall...it is funny when I think of it today. My boys faces were classic...like..."is this guy serious." Then they would look at myself and my husband with a "this guy is nuts" look.

 

But, they did fine......don't get us all wrong...he is good at what he does! And absolutely yes....he is totally serious with the kids when he does these things...he does not laugh about it or let on about anything. He wants to see something from them. My kids can do great in a docs office (some know how that goes) and, I was afraid that dr. K wouldn't see a thing because they were doing pretty well by the time we got to him. He did bring out some tics in my younger son and he commented on it...to him...and, to us later during the consult (which the boys were not at)

 

I would just say trust him....you are in good hands.

 

And, I gotta ask....how did you choose your user name???

Edited September 4, 2010 by P.Mom

[Iowadawn]

I think Dr. K said it is his quick psychological assessment. Our 10yo son was cowarding & whining in my husband's arm after he got started. He was not a happy camper with Dr. K when he was through, either. Since that time he gives it right back to him when our boy has seen him or had the second IVIG.