Psych vs. Med Conflict

[Allison]

Hi,

I love this forum! I read almost all the new posts as they get sent to my email. I have to resist answering each one personally, or I'd spend all day online!

 

Now it's my turn to post something that's come up for us here. Our DD17 was dx PITAND (myco) last year, we have a totally awesome pediatrician, but were refused IVIG due to lack of "Standard of Care" for our insurance company. We've just been through a several months-long process of working with an immunologist to see if any other disorder could explain DD's illness. The conclusion: Prednisone seems to help, and if low enough dose, she can stay on that while the body sorts itself out. He basically could find nothing wrong, and he's the expert so it has to be true. He does not recognise the validity of Cam Kinase II results (200 -- very high number) or give any credence to PANDAS/PITAND theories. Doesn't even seem curious....

 

DD is very emotional right now, and so are we. She sees a therapist for CBT, and I get basic parenting advise from my own therapist. BTW -- I highly recommend therapy/counseling for all us parents, kids, and families. I could not imagine going through this experience without professional guidance. It's just too hard otherwise. Still very hard, even with support.

 

Basically, DD rejects the DX totally, and she rejects any whisper this might be psychological/psychosomatic. She still has total faith in the medical expert, and yet he has totally let her down. Meanwhile, her Dr. continues to treat for Pitand, and I have one supremely pissed off teenager on my hands! She is in total shutdown mode right now, after a huge emotional outburst. She's been so good about getting ready for school that starts next week; now I don't even know if she'll get out of bed today.

 

My question is to ask you experts about where you see the illness end and the person begin? I mean, I get that the antibodies are affecting her behavior centers which make it difficult for her to function. But she's almost 18 and I'm being told to exert my parental authority and start expecting her to take more responsibility. I think that's a good thing, but really hard to do as she's grown so dependent on me. And I just don't know how much I can expect of her if her brain is being scrambled!

 

I get the most benefit from hearing from parents in similar situations, and also the one or two young women out there who post from the kids' point of view. Anyone else have similar issues?

 

Oh -- DD also came up with her own DX: AIRP (AutoImmune Response to Pathogen)

 

Thanks for listening!!

[Fixit]

Hi,

I love this forum! I read almost all the new posts as they get sent to my email. I have to resist answering each one personally, or I'd spend all day online!

 

Now it's my turn to post something that's come up for us here. Our DD17 was dx PITAND (myco) last year, we have a totally awesome pediatrician, but were refused IVIG due to lack of "Standard of Care" for our insurance company. We've just been through a several months-long process of working with an immunologist to see if any other disorder could explain DD's illness. The conclusion: Prednisone seems to help, and if low enough dose, she can stay on that while the body sorts itself out. He basically could find nothing wrong, and he's the expert so it has to be true. He does not recognise the validity of Cam Kinase II results (200 -- very high number) or give any credence to PANDAS/PITAND theories. Doesn't even seem curious....

 

DD is very emotional right now, and so are we. She sees a therapist for CBT, and I get basic parenting advise from my own therapist. BTW -- I highly recommend therapy/counseling for all us parents, kids, and families. I could not imagine going through this experience without professional guidance. It's just too hard otherwise. Still very hard, even with support.

 

Basically, DD rejects the DX totally, and she rejects any whisper this might be psychological/psychosomatic. She still has total faith in the medical expert, and yet he has totally let her down. Meanwhile, her Dr. continues to treat for Pitand, and I have one supremely pissed off teenager on my hands! She is in total shutdown mode right now, after a huge emotional outburst. She's been so good about getting ready for school that starts next week; now I don't even know if she'll get out of bed today.

 

My question is to ask you experts about where you see the illness end and the person begin? I mean, I get that the antibodies are affecting her behavior centers which make it difficult for her to function. But she's almost 18 and I'm being told to exert my parental authority and start expecting her to take more responsibility. I think that's a good thing, but really hard to do as she's grown so dependent on me. And I just don't know how much I can expect of her if her brain is being scrambled!

 

I get the most benefit from hearing from parents in similar situations, and also the one or two young women out there who post from the kids' point of view. Anyone else have similar issues?

 

Oh -- DD also came up with her own DX: AIRP (AutoImmune Response to Pathogen)

 

Thanks for listening!!

 

 

He does not recognise the validity of Cam Kinase II results (200 -- very high number) or give any credence to PANDAS/PITAND theories. Doesn't even seem curious....

 

Doctors!!!!

i'm not so mad that he doesn't buy the cam result ..it is new and we are still trying to decifer it

BUT, has he heard the term encephalitis..has he heard of syphalis(sp)and the encephalitis that can occur from that.....is it really impossible another infection can cause encephalitis.....AAAARRRRRRGGGGGGHHHHHHHHHH!!!!!!!!

 

 

i like AIRP!!!!!!

 

the little i can offer to your question is..that it is hard to know where the line is..i think, as discussed, that some of the anger is from frustration of not know what is wrong with their body.....

sometimes i wonder if i let ds get away with a little more...but he is actually in trouble more than the othe guys..so i wonder if i am trying so hard to make him "normal" i'm not thinking it through....

 

PS get a new doctor!!!

Edited September 16, 2010 by Fixit

[norcalmom]

Have you tried consulting with one of the pandas specialists? We aren't near one, but did phone conference, and fianlly IVIG. Seems to be working! Its tough to cordinate all the other docs and bloodwork.

At some point I decided that I would read all I could get my hands on, make up my own mind about weather I "beleived" and only deal with doctors that had similar mindset. Not to say that I didn't go to many doctors to get blood tests done, I just didn't tell them too much about why I was there..case in point, local immunologist. DS had a low igg score on a test gastroenterologist ran (went to her bcs ds had diareah and I was concerned about antibiotics, and I wanted to rule out celiacs) immuno knew nothing of pandas, but i got him ot run all the tests I wanted (that I know I should have done from this forum, and asking buster for a list!) just by asking - what about this?, what about that?, and can we test him for XYZ too? that would make me feel better. At the end I gave him the antineuoronal studies from cunningham, and copy of mouse study too. I jsut matter of factly said we were looking into this thing called pandas. My ds had tics, so I was very open about the fact I was investigating anything that could make a child tic. He can reach his own conclustion - make up his mind for himself, just like I had to after reading everything.

 

Find a doctor that beleives what you beleive. And follow that person's advice. Even if it is from across the country. We are spending so much energy trying to educate the doctors. I don't think they will grasp it that fast (I knew it would take months before this immuno got interested enough to actually take a risk on my ds and spend all the time it takes to educate himself on pandas. He has lots of other paying customers who just want allergy shots - why bother with my son? Its easier to dismiss it than investigate it. but I think my ds will start the process for him. I hope to go back soon and ask for some more tests (jsut check up), and tell him ds is tic and symptom free. And give him the reports again so he can read them, since I'm sure he probably dismissed them the first go round. He was politely interested, non-commital, but certainly not ready to administer ivig...and I (and my ds) had neither the time nor energy to try to persuade and eduacate him. But maybe seeing a kid that he didn't really help, but someone else did, successfully will convince him.

[emmalily]

Allison,

 

From my personal experience, I remained extremely dependent on my parents while I was very sick. Trouble sleeping alone, didn't drive, didn't go into buildings alone, etc. Now feeling better I'm trying to do about five years of catch-up on independence I didn't get while I was sick (14-19). And that's ok, but I think it's an unavoidable situation. It's hard enough to learn how to be an adult, forget about trying with your brain scrambled. Independence can wait. I like to think of it this way: I was recovering from a broken back right now I wouldn't be focusing on driving alone, I'd be focusing on the good stuff I could do.

 

As far as the personality where does it begin and the illness end, I think your daughter probably knows but can't exactly express it. At least, that's how it felt for me. I had no idea why I felt/did/said certain things and I couldn't still my mind long enough to figure out how exactly I was feeling. As soon as I started coming out of it I realized what was happening. But it's very hard to differentiate the emotions caused by PANDAS and your own emotions until one is missing, you know?

 

And as far as having a supremely pissed off teenager, well, honestly, I don't think you can expect much else. This situation sincerely stinks and, in my own case, I was very angry the whole time (complicated by the PANDAS and of course being a teenager) but also just on the basic fact that my entire life just went out the window. There were a lot of days when I didn't get out of bed simply because I was not feeling well and on top of that depressed (not clinically, in a my-life-sucks sort of way).

 

We had the best luck working within my limitations as far as school/social activities pre-treatment, than trying to go when I didn't feel like I could. That took a lot of pressure out of my life, but I think that's very individual and based on how far you are in your treatment. If I was still in high school now I'd try in a second to go back full time based on how well I'm doing with treatment, but ten months ago, no chance.

 

Emmalily

[RNmom]

Allison, I can relate to your question about the boundary line between "self" and "disorder." I have a teen with PANDAS and he is quite angry about the way it has turned his life upside down. He can be very difficult to "reason with" or motivate in ways that we never expected (he has an older brother and we got through his adolescent "stuff" no worse for the wear). I would say PANDAS + adolescence = a very rough time for parents and kids.

 

Emmalily, thank you for a description of your experience that better helps me to help my son.

 

Also Allison, With a Camkinase of @ 200 if there is any way that you can access a PANDAS doc I would really encourage you to do so. There are no substitutes in medicine for PANDAS kids right now. All the best to you...

[Allison]

Thanks to everyone for the replies and helpful advice. Been running around like crazy and only just getting a minute to reply at all; and it will be short.

 

Our pediatrician is very well-grounded in Pandas and has treated several kids for it over the past few years. She's as much an expert as any of them, in my opinion.

 

The problem is that my daughter no longer wishes to be labled as having Pandas, nor does she want anyone to think it's "all in her head." She spends her days managing symptoms, and has no diagnosis or treatment plan to bolster her.

 

We are in a strange sort of limbo right now. She starts her Running Start program next week, and she's hoping to be able to drive herself there. I'm available for back-up, as is her father, We are doing everything we can to help her be successful, within limits. We still expect her to participate in our family, be responsible for her self-care, try to be a contributor to the extent she can. Gauging that extent is where we get tripped up, of course. I'm all for building ramps for wheelchairs, but even a kid in a wheelchair has to brush her teeth.

 

It's just hard. No easy answers. No one to tell me how to be a good parent of this kid in these circumstances. I'm trying to stay consistent, and learn/adjust as I go along.

 

Today I'm feeling much more optimistic than yesterday. Who knows what tomorrow will bring?

 

Thanks again for listening and adding your thoughts and Ideas. i certainly appreciate the thoughtfulness behind them.

 

Allison