posted
Hello Everyone, I hope you are all doing well! I haven't been able to post as often as I would like. Which I am sure you all understand why. Nicole has been doing horrible. Alot has been going on and I am not even sure where to begin. She started on IV Rocephin in May, also continued Plaquinil. She had two PICC lines put in within the first week because the first one collapsed. She was put on Bextra instead of Relafen for her pain. She was also put on Paxil for depression. She became so bad that she wasn't functioning at all. Unable to get off the couch, unable to get up the stairs and not even bathing. We had to use the wheelchair if we wanted to go anywhere. Bathing done with the use of a shower chair and my assistance. The pain literally took over her body. Her muscles had become so deconditioned that it was suggested she see a Physiatrist. I of course did what I was told and took her to see this Physiatrist.Nicole was then admitted to a Pediatric Rehabilitation Hospital where she is today. At first the insurance denied her stating she didn't meet the criteria for Rehabilitation. Of course I faught them on it AGAIN! It was then approved after a few hours and many, many phone calls to all the right people. This is Nicole's biggest problem the insurance companies continuous denial of care. The care that she needs and deserves. IT IS A DISCRACE! Well they approved her for 7days and up to 31days but, approval has to be put in every week. We only get approval if she is making progress weekly. After two days the Dr's at the hospital stopped her Rocephin and pulled her PICC. Due to not agreeing with Dr. Jones treatment guidlines. They did talk to Dr. Jones and he agreed. Dr. Jones wants to start her back up after she gets out. BUT, they don't agree and do not want me to let him give her the IV again. She is getting intense therapy. A combination of physical, occupational and pool therapy to get her functioning again. She has also been diagnosed with Reflex Neurovascular Dystrophy and Fibromyalgia. The Dr's at the hospitals say her Lyme is under control now she has to overcome the pain. That it is the pain that has caused her to become unable to function. AGAIN they do not agree with the Lyme diagnosis. What do I do??? They do not want me to let Dr. Jones put her back on the IV. It almost sounds like a threat! I want to help my child but, not everyone agrees with his type of treatment. Actually none of the Dr's agree on anything. One day she has one thing and the next it is something else. They do not agree on anything. But, yet they have in her medical records that she has Lyme disease but they aren't allowing us to address the Lyme Disease. I am so confused and do not know what to do now. On top of this mess the school wants to put her back in sixth grade. As the hospital wants Nicole back in school next week and fully functioning again. She is doing better but, is not a 100% yet. The hospital says she has to work through it. But, again what about her Lyme they are acting as if it doesn't exist. They are telling me if I let her go back on IV I am taking her life away from her when she wants it back. Crazy isn't it. They say she has it but, don't want me to allow Dr. Jones to treat her for it and they wont treat her at all for it. She has made some improvment but, not enough to satisfy me. She still is having difficulty walking and her legs completly give out on her. She is still in constant pain. She still doesn't bath everyday. She is still not eating well. Actually barely eats. All of her other symptoms still exist! She is still unable to function like she should. I know my child! I know how she used to be and I know how she is now. She is not functioning as she use to. She struggles daily and feels like we are torturing her. The progress she has made this past week is Nicole pushing herself to get out of there. I predict that she is telling and doing what they want. She is doing to them what they have done to her for the past few years. Giving them false hope. I see it in her eyes and hear it in her voice. She just wants out and is discusted. She tells me I can't keep doing this it's torture. She say's, "she has excepted that she is just going to be sick and in pain for the rest of her life. So she just has to just deal with it and work through it. So she can aleast have some kind of life." This breaks my heart. What do I do? How do I help my child? I am scared and confussed. Please any advice would help!
Love, Monique
Also she hasn't been able to get to her room on the third floor in almost two years and has been confined to the living room for a year and a half. She also lost control of her bladder and bowels due to her inability to get to the bathroom. I will come back later on today and post her full list of syptoms.
Posts: 99 | From New Jersey | Registered: Jun 2003
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OH MONIQUE! How could Nicole be making any progress at all without the IV or other Lyme treatment? This makes me so angry I could just scream. I just broke down and cried when I read your post.
My poor lovely Nicole! What you must be going through! I can't even imagine the pain of it all. I know HER pain, but not yours.
Do you think she'll be released from the hospital soon? I think the best bet is to get her out of there as soon as possible. I think Nicole is working on that!
She's one tough kid. I'm just heartbroken that this has to happen to our children. It's bad enough when it happens to adults....but the children....oh my.
I hope someone has other ideas for you. I would say the best thing is to get her out of there so she can get back to treatment.
I'm praying for you all. I do have one idea for the pain. I'll email you. If your email address is not posted here, could you email me, please?
Caryn
Frequent Contributor (1K+ posts)
Member # 366
posted
Hi Monique,
i've been meaning to email you. sorry i haven't yet. this is just horrible. is one of the hospitals by any chance Cooper Hospital in NJ? how do they sleep at night? i have an idea - perhaps a protest to get the medias attention to what is happening in NJ/PA? see my post above under SandyL's post about going to the media/DYFS.
SunRa
Frequent Contributor (1K+ posts)
Member # 3559
posted
This is horrible!!!! Monique, I am so so sorry, I dont even know what to say. I'm speechless.
Its hard to say what would be best for her as I only know part of the story and I am not a dr. But my instinct says to get her out of the hospital because that can be a very stressful place and they obviously do not understand the complications of untreated Lyme. I know its not that easy.
I know this is a frustrating and very confusing time, but what does your gut tell you to do? What treatment does Nicole want to do?
I was talking to a woman the other day whose son (Nicole's age) was very sick before he was dx'd with lyme at age 9 by dr jones. He was homebound and other drs wanted the poor kid commited to a psychiatric hospital. The family went through hell but stuck with dr jones' treatment and now he is doing much better and back in school. she said it took about 2 years before he significantly improved.
I too have been very impatient with Lyme tx, but I am finally seeing some improvement. Since being on the IV Rocephin, even my white spots on my brain MRI are dissolving!
I wish I had better advice. All I can do is send healing thoughts and prayers your way and offer as much support as I can. I know it is a scary, uphill struggle, but we are all here for you!
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