PANS without tics or OCD?

[stacestar]

thank you eamom for the comment about the joint pain and strep. The more personal stories I hear about that the more I can probably convince her to have her tested for strep.

 

also thank you for the urinary link. I'll read through here in a minute.

 

maryaw- good idea to have her possibly call Swedo's office.

I hear what you're saying about being pushy, b/c like I said in one comment, I love that little girl like she were my own, and I won't sit by and let her be sick if I think I have info on it. With my sister it's a fine line of being heard and being shut up that I walk with this issue, so I have to navigate carefully though for sure.

The good news is is that really I think she is pretty open to having her tested for strep. I think she just may do this with a little more info. (examples of how the symptoms match, etc.). To be honest, it's more lyme that I can't be pushy about right now. That's the thing that when mentioned she gets upset and will cut me off angrily. I wish it wasn't so (b/c since we live in an endemic area, and my son tested positive for it and they are everywhere together in the summer-every yard, park, tree climbed, garden, etc.-, and her symptoms match it: well,my money's on lyme , although I know I could be wrong), but anyway she gets downright mad when I suggest it; hung up on me once even.

 

seriously, what's unfortunate, is that if lyme were understood like it should be by all dr.s, (if all dr.s were lyme literate) she would have her tested I'm sure. A big part of it, I hate to say, is the going to a dr. 90 miles away who doesn't accept insurance. Not that she's put money and time before her daughter, but she doesn't think it is lyme, so to her to drive 90 miles and pay $325. for the appt. and then $200. for a test is not justified, whereas if it were covered by insurance and the pediatrician 10 minutes away could do it, it would probably be done, as a "just in case" or "well, okay, why not. I don't think this is it, but what's the harm in testing?"

 

But, for now if she even got started on testing for strep (which maybe that's it!) and starts to go down these roads, then probably the more she'll be reading herself and learning from others besides me, and the more open she could be to it being anything-whatever it is.

 

oh, new question: so I went to a llmd for my son early on (kind of). He had his strep titers test and they were very, very low/normal range, so the llmd ruled that out in him. So, I don't know how the whole strep thing with dr.s goes. In other words, if she takes her to the pediatrician and he does the test, well... I'm thinking she'll need a dr. who specializes in PANDAS and PANS right? That the local pediatrician won't cut it for treatment knowledge, is that right?

I mean when I took my son last fall to him (same pediatrician her daughter sees) he did mention PANDAS but only did a throat culture and did not do (or even mention) the blood titer tests. So even if she asked for the blood titer test, I bet he wouldn't have knowledge on proper treatment. Is that correct? Oh, great.

 

And, I agree beerae22 about the counselor thing. When my sister told me the teacher recommended the name of a counselor, I was like oh, my dear Lord, please don't. Nothing against counselor's, in fact 20 years ago I almost went to grad school to get an MA in counseling, and they have their place, BUT I say it's after the problem has been identified and is being worked on at least! And, I think the problem is most likely infection or something like that. And, so true that you run the risk of getting a bad one, so personally I wouldn't go either. It may help others if they find a good one, but to just take her to a counselor and not to a good dr. Not a good idea in my opinion. So, thank you for sharing that!

Edited November 16, 2014 by stacestar

[ktdommer]

I always tell people with sick children to do whatever they can before puberty as it changes everything like PANs as and Lyme for the worse. I push hard the ruling in or out of what it might be. The process to recovery can take time, so start as soon as you can.

Now I can add do whatever you can to help a Child before age 18. Everything in the medical and psych communities changes then also. Big time!

A suicidal child is hard but a suicidal adult child not living with you is the worst!

Fortunately my sister who looked like she had MS and my 6 year old nephew that had odd behaviors did get tested only months after we tested positive. Both of us passed on Lyme in utero unknowingly to all of our kids.

Best wishes,

K