Help, please- State might be getting involed in my kid's treatment.

So totally freaking out here. I hope someone can help, although if you can help, that means you have been through this too and that sucks :(

Quick run down-
DS Scott is 14, is being treated by a LLMD for 2 year, for Babs, Bart and Lyme. Many positive tests from MDL and Igenix, plus positive titers for HHV6 and C4a.
He has been seeing a therapist for counseling since last fall due to behavior issues in school. A couple of months ago, I took him tot he psychiatrist in that group b/c in started cutting. P-doc did the intake appt and I knew w/in 5 minutes he was *not* Lyme friendly. P-Doc asks to see his medical records and I get him copies, I know he has plenty of positive tests. (Yes, STUPID of me!!!!). We meet him for a second appt, and he spends the entire time looking through his records only to tell me that he doesn't think Scott has Lyme, that his labs are from "research only" labs or from non-accredited labs (such a crock!)

Fast fwd to this afternoon- I had an appt with Scott's therapist. I have met with her on my own before, so I though this was just a "catch-up" mtg. Big mistake. The p-doc apparently believes that we are not getting Scott the "proper medical attention" that he needs. I was asked to make an appt with a Pediatric Infectious Disease Specialist. They had a list already prepared for me. When I asked the therapist what would happen if I didn't take him, she said that she didn't know that it was way over her head. I asked what would happen if I stopped bringing him to see her, and she said that it was past that point.
So reading between the lines, I ask her if there was some kind of an investigation going on and she said that she couldn't answer.

I am so upset and angry on so many ;levels, it isn't even funny. Some p-doc is going to tell me that I am not taking care of my kids? That he doesn't believe in chronic and congenital Lyme? And he is able to get the State involved if I don't comply???

Please, what do I do??

!!!!!!!!  :-(

It would be GREAT if that were true Denise.  If we know that all the labs and lyme info held up in court.  If the research were looked at by insurance companies.  If we knew the state (and medical boards for that matter) had less power to decision make. 

Shoot.  Chris I would do anything that you think might help, feel free to call me to brainstorm.  A few thoughts running through my mind.  I think you should get letters from your LL docs right away in preparation for a DYFS call (just in case).  Just know that the P-doc doesn't have the only and final say on things, it's just his opinion.  You do have a lot of support.  And there are other people whom I would recommend you reaching out to if you get a call and if this escalates.  Jen, Karen and I have been talking about this very topic, and also V. Sher just posted about it on the doc discussionlist.

At this point it might just be the P-doc's director that it's taken to. My first thought is to try not to let them (school psych group)--is it a CSE team? see much fear or anger from you.  I know that's easier said than done... but they will likely use it NOT in your favor.

RE: cutting, when people freak out about it it makes it a LOT worse.  I'd like to talk with you about it as I recently learned some things that might help.

 

Denise- actually the therapist is quite lyme friendly- she has always been receptive to what my input has been. The p-doc is part of the group she is in. Its a non-profit and my kids are on State Health Insurance since Gary (DH) is officially disabled from Lyme. I wasn't thrilled w/ Scott seeing a p-doc but the school was kind of pushing me to it, since he was cutting. So I did that to shut the school up. After the second visit with him, I walked out and said to my son that we were not seeing him ever again. I was too late:(

Tracy- that is exactly what is eating at me. Gary keeps telling me that we are taking the best care of him (believe me, if I could take him to an ID, get 1 month of doxy and be done, I would in a heartbeat! YKWIM :) ).... but my point is that if whoever "reviews" this is on the IDSA side, who knows what could happen.
Scott is also going through the schools CST and they have been fabulous so far. IEP mtg for him is tomorrow.

+Lyme (sorry I don't know your name) That is what I am leaning towards- I have a list of Ped ID's and I am going to call around and see who seems Lyme Friendly. I am going to say DS has Lyme but we want a second opinion. I guess that is the best way to handle it. I don't want them to know about the p-doc issue.
My worry about that is that is kind of how I got here- trying to accommodate the school and therapist when DS was in a bad spot.

And oh yeah- I have files and folders and documents and emails and.... well, you get the picture. I already emailed his LLMD for his input.

Thanks for your thoughts.
Chris

Good job, Married. Looks like you are covering all your bases. I'd still go to see the freaking ID Dr and see what kind of help he offers --- because I BET he has NOTHING to offer, including a diagnosis.

Hi Chris,
I don't know if you remember me, but I met you very quickly at Lymeapalooza II a couple of years ago.

I have just been helping a parent in a similar situation. I got in touch with Tracy and she has been a huge help. We had a meeting this morning and the school backed down, for the time being. They want to revisit the issue in Sept. But the thing that really helped was that the Mom had letters from each of her docs stating basically what she has said all along. Dr. B in NJ (P Doc) was especially helpful and the other docs, kind of let him take the lead. His credentials are the best! The funny part of it is that although the child has a PICC line, none of the docs mentioned Lyme. They used all sorts of other descriptions, but never said Lyme. Lyme was truly the 800 pound Gorilla in the room. I would also recommend getting in touch with Jenn and Sojourner on this forum, as they are true masters at "humility and civility", but at the same time getting their point across with a sledge hammer.

If I can help you in any way, please don't hesitate to contact me.
Wishing you and your family all the best....
Karen

It would be great to get another Lymeapalooza together! Dan and I would be there in a heartbeat!

I can't say enough good things about Dr. B. He has helped tremendously with Dan's behaviors. Other psychs would just throw meds at Dan - "Here, try this" - some did nothing, some made him worse. Dr. B. knew almost immediately what would help and now we continue to tweak it. He is a big part of the reason we have been able to keep Dan at home.

I've come to realize that it is best to stay away from docs who don't know enough about Lyme and just stick with Lyme friendly docs and therapists.

I so understand your "rant" and go there myself more often than I like to admit, but someone sent me a Email a while back that said, "It's not enough to just hunker down and weather the storm, but we have to learn to dance in the rain!" I know tha's easier said than done, but remember that you have a whole "Lymie" community for support. Lean on them when things get tough!

Take Care,
Karen

Married, I had been thinking that by 'cutting' you meant cutting class. When you all speak of 'cutting', are you really talking about cutting himself?

If you are, that kinda helps me, because my daughter has admitted having done this in the past without my knowledge and says she no longer does. And she told me that at those times, the emotional pain was so bad, she thought that physically hurting herself would relieve that.

I don't understand that and have never felt any desire to do that. But I can tell you that I have had such unbearable emotional pain that if I thought it would bring some relief, I would do it. I have just never thought of it. But the thoughts that do run thru my mind are ending it all, running away, or knocking myself out.

I"m praying for your family and your son. I am so very sorry. I can only imagine the grief you must feel because of the pain he is in.

Is this symptom (cutting) something to fear escalating in any way?