I am the "Lyme's Mom who Needed Help" - (that is what my post said two weeks ago), in reference to the help I needed (AND STILL NEED!) - in dealing with the Division of Youth & Family Services in NJ.

I keep reading and reading all these "posts" and "answers" - and yes, as I am sure happens with all of you, many of the stories describe my exact same situations or experiences.

So how can there be all of us "crazy people" (and crazy kids) from all over the country - talking about the same stuff - when "other people in high places" - say it doesn't exist?

I am being sent to DYFS Doctors who say this Chronic Lyme doesn't exist. I have to hide my nutritional supplements when they do visits to my home. I can't mention that I try to keep my son on a low-sugar diet to reduce yeast potential. And boy, when I mention my son's neuopsychiatric outbursts he is having now - that gets a real big chuckle and ridiculing.

My son had to visit an ID Dr. from UMDNJ twice, in the last two weeks (DYFS ordered). My son says to the Dr. - "my leg hurts, and my body feels to heavy for my legs". He also told the Dr. his "chest felt funny, fluttery". The Doctor proceeded never to check my son's joints for swelling (can you imagine??? the kid complains of leg/joint pain, and he doesn't touch his leg). It gets better. The Doctor's diagnosis is that my son has very bad autism. He totally disagrees with any Lyme diagnosis. I said what about all the records from Dr. J? (Everything is so well documented - the Lyme symptoms which were almost completely eliminated over time, etc.) The Dr. replied, "I couldn't read any of Dr. J's handwriting". And I couldn't read any of the bloodwork, because it was faxed. And I never got the other LLMD's records, Dr. B's, so I could read them. So the Division of YOuth & Family Services is anxiously awaiting the report from the highly qualified ID Dr (never heard of chronic LYme) - when he hasn't read a single line of the medical records from Dr. J's 4 1/2 years of treatment, hasn't been able to read the blood results (faxed copy) - she he is totally discounting them. And of course he feels no oblilgation to call Dr. J, because, you can imagine the things this man is saying.

11 months ago I was notified by DYFS my son's medical treatment for chronic Lyme was being investigated, and "I" was being investigated for administering the abx to my son, accused in fact of "Munchausen by proxy".

My son, now 7 months without abx, has approximately 6 quite lengthy "neuro-psychiatric episodes" per day, as a result of being without his abx.

I have a Congressman interested in helping my cause. I have another DYFS "watchdog" agency about to begin helping. And a number of you kindly wrote letters to DYFS in NJ for me.

But why is it I still can't go to my Lyme Dr. for abx and treatment? The answer...... As my son is sent to "infectious disease Doctors" who have never treated a single case of Chronic Lyme (actually - they told me they "haven't heard of such a thing") - they somehow have had access to my medical records too. So they begin ridiculing me for the fact that I would "ever consider" taking more than 30 days of antibiotics in one shot. "And what do you mean" , they say, "that you still think you have Lyme disease".

How can all of you, and all of your Doctors, and me and my Doctors, know about this thing, and I am going through this awful dilemna.

My son is doing things like "wandering out into the road to follow a spider", and doing the Hercules routine where he is so rough with my daughter that he just pushed her down a flight of steps, and almost seriously injured her. When I tell Dr. J's office about this, they are shocked, because this is the child they knew 4 years ago - the calmest child you could ever imagine.

You can imagine how much I sleep at night wondering when/if I should begin "sneaking the antibiotics".

Although there is not a great chance of Lyme/Babesia showing up in a spinal tap, I have been waiting for two months to schedule one with this incredibly brilliant Pediatric Neurologist I was referred to, and although I "still" technically have the "legal authority" to do the "tap" - DYFS has scared the neurologist so much that he is afraid to do the procedure (it is understandable, believe me). They made the Dr. believe that he is not authorized to do the procedure. So he wants them to put in writing that "I" am still authorized to allow the procedure, but they won't do it. It seems criminal to stop me from trying to receive treatment for the neurological symptoms my son is experiencing, from any Dr. at all. This man is not a Lyme Doctor!

My son has been seen by one of the best Lyme Psychiatrics in the country, here in NJ. He evaluated my son at age 3 (when my son was first diagnosed with the congenital Lyme) - but my son did so well, even though he is mildly autistic in addition to the Lyme, that my son never needed any psyche medications to control him. But my son was removed from antibiotics in January of this year, and in addition to then losing control of his bladder and bowels within a couple of months (still the case as a result of the Neuro Lyme) - he is beginning to have the regular panic attacks, and semi-psychotic episodes, the frequency is increasing. So my psychiatrist, again, the well-published expert on neuropsychiatric Lyme disease, prescribed some medications for my son to take. Can you imagine this - the DYFS psychologist, in the middle of giving me my psychiatric exam to determine if I have munchausen by proxy, was unprofessional enough to lecture me as to whether I had "guilt" for agreeing to administer to my son the medications that were prescribed to him by his highly qualified psychiatrist. So here I have this child melting down continuously from "no antibiotics" - his Lyme literate/lyme expert psychiatrist gives him prescriptions which were confirmed as accurate for the "other" highly qualified Lyme literate/psychiatrist who consulted with me, as well as the pediatric neurologist. But yet a DYFS psychologist, not licensed to prescribed medications, warned me how dangerous it was to give my son his medications.

The part that is really bad is that DYFS is willing to be exposed on TV it seems, in the paper, etc - anything that may potentially happen - but they are SO AFRAID for my son to get a single diagnostic procedure which may prove Lyme disease.

I want the spinal tap not just to look for Lyme disease. My son has never had a full neurological workup. Since I am not allowed to see Dr. J and get "his treatment" or advise, I wanted to work with another highly qualifed professional to see what services/therapies, etc - he can suggest - to assist my son with the associated neuromuscular/neurological regression. But again, THEY ARE SO AFRAID THAT LYME WILL BE DETECTED - I am being blocked from this procedure.

A word of caution to some of you families. Be wary of family members (ex-spouses) and school systems, and other "threatened parties" - as there is always the potential they will report you for the Chronic Lyme treatment. My impression is that this (these) state organizations will not actively seek you. But if you become a problem for someone (school dept of educational services, ex-spouse, ex-spouse family, insurance company) - you can be reported and you may endure what I am going through. (I thank my ex-husband's family for my experience! The ER navy Dr. in fact)

So I notified DYFS today I am done with the child play. They will be responsible if my son gets hit by a car or severely injured because I am now faced with behaviors that I can't anticipate or handle. And they will have to arrange with my school system, always very cooperative, to do home tutoring for me. My son is 9 years old and has to wear two pullups at a time, to prevent leakage, due to his new inability to go to the bathroom. I do not want my son to be embarssed with these accidents at school or pullups sticking out of his clothes.

I never thought I would be happy with just these sleepless nights from my own Lyme disease and the high-cost of antibiotics, etc. If only this agency would get off my back and let me care for my son.

Thank you again to all of you who have called DYFS for me and especially to those who have written letters to DYFs for me to help me.

I of course would welcome any additional letters anyone can write. You can also reach me at 732-762-1100.

I especially welcome "alternative advise" on things I can use to help my son, such as the Cat's Claw (just bought some), etc. I need to get him better and back to a more normal life.

quote:

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Originally posted by GEDEN13:
hate to read these kind of stories.just a kid,being robbed of his childhood.dont know what to tell you sandy,just continue fighting for your boy.people here can help.there is other moms here that know what your going through.will prayer for you and your son.bless you,,gary

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I honestly do not know what to do for you but pray. That is the only power I hold right now.

Hopefully someone else who reads this has some good ideas or has already contacted you with a plan. I am greatful that you took the time to share this and I am in great hopes an angel comes your way soon.

I am thinking that you have threatened them with exposure with media?

I can not imagine what type of person I would become it someone stepped in my way of getting my daughters the treatment they so deseprately (sp) need. I would be a MAD WOMAN for sure!

Please keep us updated. I have an ex that was not thrilled with the idea that she has lyme and did not believe her "ADHD" symptoms are related. I believe they are and could actually disappear with treatment. I have listened to other mothers and their children have returned to "normal".
I will forge on and fight till the end. I know you are doing your best,you have so many obstacles to overcome. I believe you can do it, I do not know you, but you do not sound like a mother that will just lie down and take it.

Keep up the spirit you have and it will happen.

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You can only see the stars when its the darkest.................

quote:

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Originally posted by lookin4answers:
Oh, Sandy, my mouth is hanging wide open in astonishment!!!!

I honestly do not know what to do for you but pray. That is the only power I hold right now.

Hopefully someone else who reads this has some good ideas or has already contacted you with a plan. I am greatful that you took the time to share this and I am in great hopes an angel comes your way soon.

I am thinking that you have threatened them with exposure with media?

I can not imagine what type of person I would become it someone stepped in my way of getting my daughters the treatment they so deseprately (sp) need. I would be a MAD WOMAN for sure!

Please keep us updated. I have an ex that was not thrilled with the idea that she has lyme and did not believe her "ADHD" symptoms are related. I believe they are and could actually disappear with treatment. I have listened to other mothers and their children have returned to "normal".
I will forge on and fight till the end. I know you are doing your best,you have so many obstacles to overcome. I believe you can do it, I do not know you, but you do not sound like a mother that will just lie down and take it.

Keep up the spirit you have and it will happen.

~Hugs & Prayers~
Amanda

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ADHD can absolutely be due partly or entirely to Lyme disease. Dr. J has many, many patients who have incorrectly been diagnosed with ADHD or PDD and it is really the Lyme and these kids return right back to normal.

In terms of my plan, I have been working on this situation for 11 months. But right now, I realize I have to get much more aggressive, with media, etc. I have been trying closely to work with DYFS because, face it, it is not their fault that the ID Doctors and pediatricians they send me to hate people like you and I who talk about "chronic Lyme". But I spent lots of time educating DYFS on this controversy. It is my belief they should not be sending my son to physicians who are not qualified and/or willing to admit my son has chronic Lyme. But even worse, I just want the spinal tap and full neurological workup to look for any additional possible medical problems - my son has never had any full type of neurological workup. But I am not allowed to get these procedures done because the DYFS' physicians are "petrified" Lyme disease will show up (even though I know this is not a real strong chance).

Anyway, there are lots of Mom's who can talk with you about Lyme-induced ADHD, so you should post this.

What will help me is letters to DYFS. If you or anyone you know has the time and patience to send a letter in for me, it becomes a part of my file. The letter is simply to talk about you or someone else's experience with Chronic Lyme. The more of these letters that become part of my file - the harder it is for them to ignore this. The letter can be sent to:

Peter Mancusi
District Office Manager/DYFS
928 Livingston Avenue
North Brunswick, NJ 08902

And just reference my situation with my son, but please don't mention the Lymenet posting!

My son, age 13, also has neuro Lyme. He has had panic attacks, and rage attacks, once putting a fist through a wall. He has trouble with short-term memory, and concentrating on written work. His standardized test scores dropped enough that even the school he was in began to believe that it might be Lyme.

I will draft a letter to DYFS. Email me if there is anything in particular you want mentioned.

My boy is also being treated by Dr. J. I also have Lyme, am a single parent, AND I had a short go-round with my state's DYCF, so we have a lot in common!

Please consider two things: skipping the spinal tap and neuro workup, at least for now. It gets the state riled, and a negative test will just fuel their argument. Second, consider moving to another state!

Regards,
Shaz