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

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/13/2010 2:50 PM (GMT -7)   
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??
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/

Post Edited (MarriedtoLymeinNJ) : 7/13/2010 4:06:03 PM (GMT-6)


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4297
   Posted 7/13/2010 4:09 PM (GMT -7)   
I'm so sorry you are having all these problems.   What I don't understand is if the P-Doc and therapist  is not lyme literate and doesn't believe in lyme, why continue to see them?   I would have taken Scott,  walked out and looked for doctors that was lyme literate (so what if they are not part of this group?).   You are his mother and you decide what therapist and doctors you want your son to see.  
 
I hope things work out for you and Scott, 14 is so young.   You have proof that Scott is suffering from lyme just from the test results so I don't think the state can get involved.
 
Perhaps others could give you better advice.
 
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA


Tallison
Regular Member


Date Joined Jun 2007
Total Posts : 417
   Posted 7/13/2010 5:48 PM (GMT -7)   
!!!!!!!!  :-(
 
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.
 
 

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/13/2010 6:59 PM (GMT -7)   
First, I agree w/ the responses above.

And then, hey, I'm a Lymie, so my first reaction might not be the most brilliant.... BUT, I'm thinking why not take him to the ID Dr they demand that he see. Let's just SEE what this Dr can diagnose or help him with. Never know, maybe he will run some worthwhile tests whose info is helpful in some way.

This does not mean I'm suggesting a contract w/ an ID Dr written in blood. But if they feel that you are negligent in some way, go on and take him and see what transpires. At this time it might be a little less stressful than fighting w/ court and SS and whoever.

Everyone, please remind me if I'm not thinking of something-- but I'm not sure what it would hurt to just comply and see what happens --- in the interest of relieving some stress and conflict. And of course you will be well within your rights to refuse any kind of proposed treatment that you feel will be harmful to your son.

I believe the ID Dr will be stumped. Then you can go on your way and get him the treatment that you know he needs. My opinion, that's all.

I say, 'Stump the ID doc'. If he refuses to acknowledge LYme, yet does not reach any diagnosis, well then the Doc will be made the fool.
 
OH, and you are probably doing this anyway, but I'd suggest building a nice neat file on your son regarding everything. All in order and ready for inspection.  Cover. Your. Butt.  This will prove that neglecting  your son and/or quackery are NOT an issue in your son's case.


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 7/13/2010 8:02:20 PM (GMT-6)


MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/14/2010 5:34 AM (GMT -7)   
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
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


-Rita-
Regular Member


Date Joined Jun 2006
Total Posts : 60
   Posted 7/14/2010 11:51 AM (GMT -7)   
Something similar happened to a friend of ours a few years back.  If I remember correctly, when the state investigators came to the house they saw that the kid was well cared for by parents who were doing the best they could in unbelievably hard circumstances.  The arrogant arse that reported them maintained his opinion but there wasn't much more they could do about it after the investigation report came back that they were taking care of the child.
 
It was really hard, it was unbelievably stressful, but it ended up that it was okay. 
 
Not the best answer, but this happens all the time, psychiatrist's are the WORST when it comes to Lyme, it is not an uncommon story among parents of Lymie kids.
 
My son went through a period of cutting and much worse.  It is a coping mechanism for extreme emotional pain.  It is a BAD coping mechanism, but a lot of times there aren't a lot of options available to people who are in an emotional crisis.  There is a great article in this month's Scientific American Mind Magazine called When Passion is the Enemy that talks about cutting and the things people do to deal with things like that. 
 
Hang in there.  What state are you in?  There are parent advocacy groups that can help you with things like this too.  The one here in NC is called the Exceptional Children's Assistance Center.  They are a free service for parents with special needs kids, all types of special needs.  You may want to look in your area to see if there is something like that there than can help you, too.
 
Marika
 
 
 
DX in 1994 - SLE, myositis, firomyalgia, sjorgens, raynaud's, elevated ANA, lymphadenopathy.
Postive IgG and IgM 2009.  Daughter and son also have Lyme. 
 
 


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/14/2010 9:00 PM (GMT -7)   
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.
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/15/2010 4:36 AM (GMT -7)   
Quick update- I had my therapy session last night, which is part of the same group. I was hesitant to even discuss it with her, even though I know they have client confidentiality. She made me feel a bit better- less freaked out if nothing else. She said that there is no real basis for the p-doc to get the state involved (I live in NJ). However, she said that is was a very odd situation and suggested I speak to the p-doc directly before I make another appt, which is basically a waste of time/money since I would not be switching drs anyway.

I looked over Scott's labs/medical chart and he has so many positive tests- I don't see how the p-doc could be so clueless. (heh- a Lyme-clueless dr, who would have thought??? ROTF!)

Marika- there is a parent advocacy group in town. If Scott is classified after today's IEP mtg, I am going to call them and see what they suggest. And thank you for sharing that info re: your son. As a mom, it is so hard to see your baby sruggle like that. It is always helpful to know that you are not alone.

+Lyme- ITA! hahaha!
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 7/15/2010 1:36 PM (GMT -7)   
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

MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/18/2010 5:02 AM (GMT -7)   
Karen, yes, I remember you. Hope that we can get another Lymeapalooza together again.

Thanks for your input. Dr. B's name has come up from all angles about a million times in the last few days. Universe it telling me to go see him, I think :)

THanks so much for your input. Its always appreciated. (but why is this necessary???) sorry- that was my I hate Lyme rant peeking through.
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


Dan's Mother
Regular Member


Date Joined Feb 2007
Total Posts : 189
   Posted 7/18/2010 6:37 AM (GMT -7)   
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

MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/19/2010 7:06 AM (GMT -7)   
thank you all so so so much for your advice- I have an appt for Scott w/ Dr. B in August. I already feel like a huge weight is being lifted. Its not off yet, but I can feel a bit of relief.

xoxo
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/19/2010 8:48 AM (GMT -7)   
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?
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.


MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/20/2010 5:23 AM (GMT -7)   
Yes, he was cutting, his arm, his stomach, his leg...... horrible to see, like I was punch in the stomach 100 times. He has been really good- almost 2 months now and no cutting. He has a friend who has cut in the past and she took away everything that he could have cut with- we tried, we would search his room, but he would still be able to find something to use. But I think since his friend, not his parents, is helping, that makes him want to stay "clean" for her.

It is b/c of emotional pain, and conversely- from feeling numb. I have an eating disorder- long time anorexia- and the feelings and motivations are very similar- the expression is what is different.

I don't know if cutting/emotional distress was part of their Lyme/Bart, but dh and ds both cut, both had rages.
Or perhaps in their case it was secondary to being so sick.

I have to get in touch with tallison and see what help she suggests too- even though Scott hasn't cut recently, if it is like my ED, it is possible to come and go as stresses come and go.

If you want to talk to me more off-board, email me at faerywings1 at gmail dot com

hugs~ Chris
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, November 24, 2017 11:40 AM (GMT -7)
There are a total of 2,897,491 posts in 318,023 threads.
View Active Threads


Who's Online
This forum has 157593 registered members. Please welcome our newest member, Kiril93.
329 Guest(s), 13 Registered Member(s) are currently online.  Details
skeye, scifigal2k, PeppermintTea, Scooterdu, Pirouette, getting by, dnny-700, quincy, Kiril93, dwkdjkwak1, Tall Allen, Traneboy, watermelon


About Us | Advertise | Donate
Newsletter | Privacy Policy & Disclaimer
Follow HealingWell.com on Facebook Follow HealingWell.com on Twitter Follow HealingWell.com on Pinterest
©1996-2017 HealingWell.com LLC  All Rights Reserved.