Desperate Mom

Hi The reason for the hospitalization is to do physical therapy because she is so deconditioned. She will also receive pain management therapy and psychologicl counseling. She also will be monitored 24/7. To be quite honest, if this doesn't help her I don't know what we will do. I am really hoping and praying that this will be the thing to start to turn things around for her. I know it's not going to be a cure all, but I hope that it will be beneficial to her and help her to get on the road to recovery.

Many thanks to everyone who gave such sound advise. I just found out today that she will be admitted into the hospital next week. Our insurance approved a two week stay, which I know is just the tip of the iceburg, but I am not complaining. I can't imagine that the insurance company would deny her if she needs to stay longer. But anyway, as far as the antidepressants go she did wean off the Cymbalta for two weeks before starting the Wellbutrin. When she started the Wellbutrin she started on 300 mg. per day which I thought was quite high, but she only took it once. I haven't given her any of her meds in the past three days. I think she needs a break from it all. I think that everything just came to a head for her that day and she couldn't handle trying to be strong. She tends to keep things to herself and I think it was just finally too much. I spoke to her psychiatrist today and he agreed to give the meds a break, especially since she will be going into the hospital next week. In addition to the antidepressants she was also on Busiprone which is an anxiety med, topomax, altenenol and minocycline. So everything is stopped for now and I will see how she does. She hasn't had any more emotional breakdowns, but I haven't seen any difference in her symptoms. Ayway, wanted to say thank you to all of you for all the kind words and wonderful advise.

Hi everyone, just wanted to say thanks to everyone for all their wonderful input and advice. Everyone here on this board has been so supportive when I know all of you are dealing with your own pain. I finally got my daughter's insurance co. to approve a two week stay at the rehabilitation hospital so we are awaiting on when they will have a bed available. I am really hoping this will be the beginning of a turn around for her. I think if the doctors see what she goes through each day they will understand it more and I am hoping the phsycial therapy will help to make her stronger. Yesterday, I think everything finally came to head for her. Her doctor switched her antidepressant from Cymbalta to Wellbutrin and I don't know if it was the new medication, or if she just got to the point where she felt she couldn't deal with all of this anymore, but she broke down and cried uncontrollably, saying she couldn't live like this anymore. AFter a few hours of this she then started to throw up and was so exhausted she pretty much collapsed in bed. Today she seems a little better, and interestingly enough I didn't give her any of her meds yesterday or today, so I am wondering if the effects of her meds aren't contributing to her emotional well being. Anyway, just wanted to give everyone an update and hopefully things will start to improve soon.

My daughter tested positive for lyme 2 years ago and was given the standard 30 day treatment. She never got better. She then tested negative, but was given another 30 day treatment. Then a few months ago she tested positive and was put on minocycline. She also was told she has POTS and chronic fatigue syndrome. I think there is definitely a relationship between this. I read where alot of POTS patients initially had an infection and they never seemed to recover. She was diagnosed with epstein bar virus throughout all of this. She has not gotten any better. We just took her off the minocyline to see if there is any change in her symptoms, but nothing so far. She initially got sick three years ago from a bad kidney infection which left scaring on her kidney. It was after that that everything to seemed to go downhill. Did you ever notice a rash after being bitten, and if so how long afterwards did you start treatment. I have heard from the lyme disease foundation that sometimes more than one antiobiotic should be given and sometimes for quite a long time, especially if treatment didn't start right after being infected. My daughter didn't start treatment for lyme until nearly 8 months after noticing the rash on her arm. Some doctors have told me that you can have a fasle positive lyme test if you have other infections, such as epstein bar virus, and other doctors have said you can test negative and still have it. It is just as confusing as POTS. Have you looked up the lyme disease foundation on the web. They have alot of good information also. Hope I was of some help.

After just reading this article I was really impressed at how detailed the findings were and how closely they resemble the symptoms of CFS and OI. It amazes me when I think about so many doctors telling me these symptoms were'nt related to any illness other than depression. I was really impressed when I read about patients having excessive thirst and excessive sweating. Those are two of the many other symptoms my daughter has had and none of her doctors had an answer for. I never knew one could be tested for low blood volume, I always thought it was just assumed because of the blood pooling. Very interesting article. Thank you for putting it here. It gives me hope to know that these studies are being done.

Jan, As I was reading your post I could no nothing but sit here and cry. I can't tell you and everyone else here who has responded to me how much everyone's support has helped. I know I will always try and find a way to help her, even though sometimes it is so very hard. My previous little girl used to love horse back riding and right before she got sick we finally bought her her horse that she had loved for quite a while. She even competed once and won three ribbons. Needless to say after she got sick her visits to the horse farm became lesser and lesser. I used to tell her on her bad days, to envision riding on her baby (her name for her horse) and feeling free. This always seemed to make her feel beter. About a month we got a call from the owner of the horse farm that her horse was sick. As sick as my daughter was she insisted that I take her to see him, which I did. When we got to the farm, her baby had already passed away and she laid in the stall with her horse and cried her eyes out. It seems like a dark cloud is hoovering over her. Her horse was the one thing that kept her spirits alive and she dreamed of the day she would be able to ride him again, but of course now that dream is over. I want to tell her that I will get her another horse someday, but she loved her horse more than anything and I know there will never be another to take his place. She doesn't say too much about him anymore, she tends to keep her feelings to herself, but I know how much that devestated her. I think at this point she is really too sick and beaten down to have the energy to focus on anything, that's how bad it is. I really do believe that if I can get her into this hospital things will start to turn around for her, because she will be taken care of by doctors who know what they're doing. That is my hope anyway. Thank you again for all your kind words.

I can't believe I just read what you said. I am shaking right now with tears running down my face, because.... my daughter has been having severe pain in the back of her neck for about two weeks now, so bad she has to lay with an ice pack on it and sometimes the pain shoots up to the top of her head. I had no idea what was causing this, I thought it was just another one of the symptoms of pots. Thank you so much for telling me this. I am definitely going to look into this further and do some research. Thank you a million times!

Ernie, yes, we have tried that also. The problem being that when she tries to do any kind of stretching excercies she ends up in more pain. The other day for example, she was lying in bed and moving her shoulders back and forth and her whole back went numb. The other day she moved her neck a certain way and now she has constant pain in the back of her neck and shoots up to the top of her head. IN fact im trying to get her someplace today where they can take an xray. It seems everything she does to try to help somewhere turns into more discomfort and pain. And she used to be a horseback rider, and was in competiiton. Horseback riding takes a lot o f strength and endurance and now she can't even hardly get out of bed. It seems to go on and on with no relief in sight. Im sure everyone here has all of this to deal with, I just don't know how much more of this she can take. Im waiting on the insurance co to reverse their denial to allow her to be admitted into the hospital for therapy. I guess I just have to wait and see what happens. Im sure ill be fighting another battle!

Earth Mother, I have to say I never really looked at it like that and it made me feel completely different about things. Everything is such a double edged sword because I never know if I am making the right decision for her. I used to try and make her get out of bed until she would just eventually feel worse by me nagging her and then she would just eventually end up back in bed anyway, so it was pointless to make her feel worse by trying to get her up. So I try to do things for her that will make her feel better like making her bed when she gets up to go the bathroom and putting a drink(she's always thirsty) by her bed, or a book I think she might like. I hope and pray that her body will be able to heal itself, but I think she really needs some desperate measures at this time to get her on the right road to recovery. Thank you so much for your kindness and words of wisdom.

My daughter's doctor told me that if we can't get her into this hospital we could try another one but who knows how long that will take. I have taken her to the ER on several different ocassions, but it was only to treat her recurring kidney infections. I told the rep from the insurance company that if she doesn't get admitted into this hospital then she will end up someplace else because something has got to be done to help her. Of course she said she understood how I felt and I could yell at her if I wanted to, to which I replied "you have no idea how I feel" and to relay to their medical director that I couldn't believe that she had the right to go against the advice of the doctors who admitted her. Another thing I have been worrying about is that she will be turning 18 in a few months and will be dropped from our insurance unless I can prove that she is disabled, which I'm sure will be another battle to fight. It seems that it never ends. Thank you again for your advice.

Melissa, My daughter is 17. She first got sick when she was 14. She was hospitalized for 10 days with a very bad kidney infection which led to bacterimia and scaring on her left kidney. She then got epstein bar virus, parovirus B19, mycoplasma pheumonia, and then lyme disease, and now chronic fatigue syndrome and POTS with joint hypermobility. Ever since her inital hospitalization at 14 it's been a downward spiral. Thanks for listening and responding.

I don't know what to do to help my daughter anymore. She is beginning to loose her spirit. She has told me several times lately that she is loosing her spirit to fight. It's hard to believe but she just keeps getting worse each day. She can barely get out of bed now and when she does it is to use the bathroom or try to eat dinner and then it's right back in bed. She is so weak and fatigued and she is pretty much in pain all the time. Her diagnosis is POTS, chronic fatigue syndrome and hyper joint mobility, along with a questionble lyme disease diagnosis. She has been on Midrodine, Lyrica, Altenenol, antidepressants, anti anxiety meds, minocycline and different vitamins and minerals. The midrodine and lyrica were of no help. She even got saline IV infustions, vitamin B-12 shots and nothing has helped. Her doctor wants to admit her into a hospital for physical therapy and pain management, but our insurance company has denied it. Of course I am appealing, but it's just another battle to deal with when everything is going wrong. She has been sick for three years and was just tossed from one doctor to another who knew nothing about her illness. I finally found a wonderful doctor and he is trying everything to help her, but it seems none of the drugs thus far have been of any help. I was praying that she would get into the hospital and get treatment that would help her. I feel like I am watching her fade away into darkness, a black whole where there is nothing but pain and sickness. She was only 14 years old when she first started to get sick. Her whole teenage years have been dealing with sickness and isolation. I try to get her out of bed, but then she is either throwing up in the toilet, or holding onto walls so she doesn't pass out, or having pain throughout most of her body. There has to be an answer somewhere. There has to be something that can help her. I told the rep. from the insurance company (after I was told they would deny her hospital stay), that she couldn't go on like this anymore. And to really top it all off, she said the reason they denied it was that they felt my daughter was to weak to be able to physical therapy. When I tried to get physical therapy for her at home they said there was no one they could find who would come to where we live. It's like a vicious circle, a bad dream that doesn't end. Sorry for sounding off like this, but this is the only place I can say all of this. No one else seems to get it! No one, except for her doctor, not even her family and friends. I tried to explain to her that it's because people can't "see" a physical disability and they have a hard time understanding something they don't know. I myself never even heard of orthostatic intolerance or POTS before this happened to my daughter. How can this illness that is so devestating be so unheard of and such little treatment for? How could she live the rest of her life like this? So many questions that go unanswered. I have always tried everything to help her, from taking her to so many different doctors I have lost count, but sometimes I feel like I'm loosing the battle and that's something that I never could of imagined. I guess I am just feeling way down today because of everything, but I know tomorrow I will get my fighting spirit back and get on the phone and start fighting for her to get into the hospital. Sorry again for sounding off. I know everyone here is fighting their own battle.. It's just so hard sometimes.

Just want to say thank you for everyone who responded to my post and for giving me such good advise. It really does make me feel better to know that there are kind and compassionate people here who really do understand. I will take everyone's input and do some more research. There is so much more to learn.

I am new to this site and wanted to reply to your post about your father not accepting your illness. I am the mother of a child who has been very ill with an array of illnesses, the most recent one being POTS and chronic fatigue syndrome. Without going into all her health issues, I can tell you that it has been a real nightmere for her. I have learned and researched everything I can to try and help her, but her father doesn't quite see it like I do. I don't know why, but I think it's easier for him not to think that his daughter is really ill and needs help. He seems to think she can pull herself out of it if she wants to. It's amazing isn't it, how our own family members cannot understand the frusturation, pain and constant struggle that my daughter and you and other members on this board go through every day. I think it's unacceptable, but I can tell you that you have to put your own health first and try not to let what your father or anyone feels get in the way of finding relief for yourself. It is your life, not anyone elses, and as hard as it is not to have the kind of support you should have you have to do it on your own. That's how I deal with it anyway. It would be nice to be able to discuss my daughter's health issues with her father, but I have come to the realization that it doesn't matter anymore what he says or how he feels, because I know that I will never stop trying to find the answers for my daughter. I know it is harder if you have no one their to help you or understand what you are going through, but please dont let that stop you from getting your life back. I hope my daughter has learned how important this is, because some day she may have to do all of this on her own. I may not always be here and she will have to fend for herself. Please don't let anyone or anything ever stop you from finding the answers.

Ernie Wow, sounds like you have been through ****. Would you mind telling me how you got diagnosed and how things helped you while in rehab. Thank you for reading my post.