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My Daughter Is Loosing Her Will To Fight


Desperate Mom
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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.

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Oh I am so sorry. Have you tried going up the chain of command in your insurance company? Can her doctor admit her for another reason, just to get her fluids up? Is there anything she is able to enjoy anymore? What if she got on here and talked to some others of us who have "been there?" WE are here for you both! Don't give up hope!

Jennifer

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I am so sorry for what your daughter and you are going through. It is so frusterating to have someone be so sick, and not be able to get the appropriate care due to insurance hoops. I wish I knew a way to help. You and your daughter are in my prayers, and thoughts.

Suzy

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okay...i promise that i AM going to come back later & write a response which - per my "norm" - will probably be pretty lengthy (i.e. i tend to go for one extreme or the other...not too good at the middle ground ;) ). before i do so though, how old is your daughter now? i apologize if i missed it in this post or forgot it from another ( i read them all but retaining them is another story altogether...). some of my reply isn't age-dependent but her current age/ stage will have some bearing on certain things i might mention so if you can reply with a quick one-word (er..one-number) answer i'd really appreciate it. in the meantime know that you & she are both in my thoughts & prayers. i know those words can seem rather empty at times but they represent genuine & heartfelt sentiment nonetheless. but anyway....

i'll be back later....

love & hugs,

B) melissa

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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.

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Dear Desperate Mom,

You and your family are in my prayers. Let your daughter know that there are people out there whom she doesn't even know that are praying for her. In terms of treatment, there may be some options still, but right now it sounds like she needs something acute to get things under control. My thought right now would be that her MD should be able to admit her to the hospital for any reason - dehydration, malabsorption from all of the vomiting, medical supervision, intense pain, anything. Have you considered just taking her to the ER? Perhaps they will see how sick she is and admit her. I am new to the forum, but it seems like a lot of people here have a lot of ideas and support to offer. Hopefully once you can get her health crisis under control then you can begin another wave of strength to look for a long term treatment that will help reduce some of her symptoms. Hang in there!

~ Broken_Shell

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My heart goes out to you. It has to be so hard to watch your child suffer so. You will no doubt get a lot of helpful suggestions from the POTS experts here ... to this I would only add something incidental that I have learned on my own healing journey.... Sometimes we try everything and on those rare occasions we find something that works. However, as many of us here know ... sometimes nothing works. And more surprising still! Is that our bodies STILL find a way back to a better place. "Loosing the will to fight" ... can sometimes free up the energy we need to let go and let the divine wisdom of our body heal itself as it was designed to do.

Last night I heard a song by Steven Walters ... The lyrics moved me to tears. Sometimes all we can do is embrace someone who is in pain.

ONE MORE TIME

I won?t try to take your pain away

I know that?s your ticket home

But the question still remains

What to do with this heart of stone

Might not be today

Might not be tomorrow

But you know that sun is gonna shine

And this heart?s gonna open

One more time

I?ll just hold you for a while

And you can let yourself feel it all

If you just keep letting go

There?ll be no one left to fall

I guess you can?t see it right now

?Cause the pain is just making you blind

But this heart?s gonna open

One more time

Oh, this sweetness when you tremble

It?s not really something words can say

But I know that feeling

That?s just what happens

When all that is not love

When all that is not love

When all that is not love

Is getting burned away

Cry, cry my baby

These tears are the very first sign

That this heart?s gonna open

One more time

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Dear Desperate Mom,

One more thought.... can her doctor get her on TPN or a feeding tube to help get something in her despite the vomiting to help her get some of her strength back?

Have you talked to the doctor today? Are they on call this evening? I hope you can get a hold of them.

Prayers and Hugs ~ Broken_Shell

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Desperate Mom,

Sorry to hear this ... have you looked at her diet yet ? I have CFS/ME/FM and OI and have been helped considerably by eliminating gluten, dairy, soy, etc. (See my signature). I was diagnosed with celiac disease but you don't have to have celiac disease to be intolerant of gluten.

The best way to start reviewing one's diet is to be tested for food allergies and intolerances but since she's vomitting and testing takes time and it's not always accurate, I'd suggest she just give up those foods and stick to plain organic baked meats, veggies like peas and asparagus and fruits like pears and apples and bottled water.

If her regular doctor isn't up on this than an integrative or naturopathic doctor can help you with this ...

HTH .. Marcia

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I know you're going through a tough time right now, but I believe most kids who develop POTS in their teens outgrow it by the time they are adults. That is something to look forward to.

I don't have nausea, but I know there are tons of people here who do and probably have great treatment suggestions for you. I do agree that cutting out gluten and dairy has been a big help for people.

As for meds, sometimes meds you can't tolerate alone work well in combinatin with one another (beta blockers combined with midodrine). Your daughter may benefit frm seeing one of the top POTS specialists, such as Mayo or Dr. Grubb, who know more about this. Also, I think there is a forum for kids which may be helpful to you.

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Dear Desperate Mom,

My heart breaks for you. I've been there with my son at 12 y/o. WHO is your daughter's physician? I found a way to get an effective treatment prgram "in network." I've written dozens of appeal letters myself, complete with pictures and pleas from my son, himself. Where do you live? Who is your insurer? Don't lose hope.

My son, during his sickest phase, became obsessed with skateboarding. Mind you, he couldn't even stand upright. I encouraged it, watched skating videos with him. Daddy built a half pipe in the backyard. And s-l-o-w-l-y, as he was able, THAT gave him the will to live. FInd her passion and stick with it, no matter how unrealistic it may seem now. Curl up in bed together. Encourage her passion, her JOY.

I'll do anything to help. Mom to Mom, I know how hard it is.

Hugs-

Julie

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Along with others here, my heart goes out to you and your daughter. I'm another "desperate mom" -- my son developed POTS and other problems about 5 years ago, when he was 15, and it has been a long (still ongoing!) road to find help. There were several times when I thought he was about to give up. My son also tried most of the meds you listed and didn't get much help. The med that has helped him most, and that I didn't see on your list, is Mestinon (pyridostigmine). Dr. Grubb, the POTS expert in Toledo, presribed that for my son. You have to start with very small doses and work up, but ultimately it is the med that has made the most difference for my son. He's far from cured--there are plenty of absolutely miserable days--but it made a big difference.

My son has a lot of GI problems (slow stomach emptying, intestines that barely move) and the mestinon helps with those issues as well as other autonomic ones. That's another reason I mention this as a med to ask about for your daughter--maybe it would help address the nausea.

Most of all, know that we're all here for you and your daughter. You're absolutely right that this is a crazy, mind baffling disease--and it's particularly disheartening when so few people understand it.

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Dear Desperate Mom,

You and your family are in my prayers. Let your daughter know that there are people out there whom she doesn't even know that are praying for her. In terms of treatment, there may be some options still, but right now it sounds like she needs something acute to get things under control. My thought right now would be that her MD should be able to admit her to the hospital for any reason - dehydration, malabsorption from all of the vomiting, medical supervision, intense pain, anything. Have you considered just taking her to the ER? Perhaps they will see how sick she is and admit her. I am new to the forum, but it seems like a lot of people here have a lot of ideas and support to offer. Hopefully once you can get her health crisis under control then you can begin another wave of strength to look for a long term treatment that will help reduce some of her symptoms. Hang in there!

~ Broken_Shell

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.

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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.

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I am so sorry about your daughter. I sit here and honestly cannot find words that I think would be comforting to you bc i've heard it myself. I have POTS with Joint Hypermobility. The muscle aches have just started for me so I know how she feels about being in pain. And I really went "u huh" with you when you were writing about the fact that others just don't get it bc we don't have a "physical" feature about our disease that pops out at others... I have been to see Dr. Grubb twice now. I will be honest and say there isn't a cure (you probably know that by now) but that at least there are a few Drs who are continuing to research and try different things. Don't give up! As hard as it is, we are all here for eachother. I wish we could all be together in one room for one GIANT hug!!! wouldn't that be nice??

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Hi Desperate Mom,

Have you had any success getting your daughter into the hospital? I couldn't help but think of her when I went to bed last night. Like everyone on this forum, I really wish that I could offer something to help. This is what I could come up with?

1. Do all of your daughter?s doctors know about her kidney condition? If her kidney function is reduced, she may be getting toxic from some of the medications she is on and need to have their doses reduced to account for her loss of kidney function.

2. Someone else suggested Mestinon as a drug that you did not mention on her list. I agree that it may be an option, and I also did not see Reglan (metoclopramide) on the list, which could also help with the nausea.

3. If she is having a difficult time with solid food, have you tried liquid nutrition like Boost and Ensure?

4. What medications is she currently on for pain?

5. Have you tried acupuncture or Eastern medicine as an alternative? What about alternative physical therapy or healing modalities?

6. Another thing that might be worth trying for the nausea are Sea Bands wristbands. You can buy them at any Walgreens.

I hope that you find something here helpful. Keep us posted on how she's doing. Remember to take it minute by minute, and let her know that you realize how hard she has fought for several years and that you will continue searching for answers and not give up hope.

Regards, Broken_Shell

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Hi,

What about coaching her for some bed exercises at first and see how she does.

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!

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Oh dear ...what a wonderful mother you are!! But my heart breaks for your daughter. Of COURSE her spirit has sunk.. she's starving for NUTIRION!!

Of course she cannot stand up.. stay up.. she cannot function without nutrition that our brains and systems need just for functioning. This lack of nutrition (energy) responds so strongly it ends up being depressed..physically mentally and spiritually.

I remember getting so bad that I could no longer hold my head up at work.. no longer walk..no longer shop for food NOTHING!! I had to take a break from work and MIRACLES OF MIRACLES I was referred to this most amazing nutritionist. NOT your typical nutritionist though he was board certified. HIs own father was an MD who died in his 40s from Chrohn disease.. he too had it or something very debilitating..until he discovered this kind of treatment.

He has training in NRT= Nutritional REsponse Testing which is the same as muscle testing or Autonomic Response testing. After his evaluation..he said I was near organ failure.. thats how sick I was when I first came to see him. He found out what was makinag me TOXIC..detoxed me safely over time..(mostly with drops of different ingredients) then at the same time built UP my systems with ogranically grown foods GROUND INTO TABLET FORM.. FOOD..which does not interfere with any meds...AND.. he can test your medications and tell you if or how much they are interferring with your body systems.. he helps with side effects of meds.. he tests for allergies..he is amazing and not that expensive. My docs were sooo amazed that they now send me back to him when I have a flare.

Did your daughter have any surgeries or scars?? That too can interfere with transmission of nerves from the brain and back to keep us healthybecause when you have surgery or a deep cut .. the nerve endings are cut.. and communication is stopped. Your brain KNOWS HOW to correct or heal the body ONLY if it can communicate. Even good meds can interfere or build up to the point they do not work as well. Even meds can end up making one more toxic.

I had to have SCAR therapy first.. which is the use of lazer light. Others use Lazer light therapy for pain as well.

Its worth a try. He got me back to work. I used to only stay in bed all the time.. he got m life back.

Research NRT or ART and see for yourself. Regular MDs do not have training in this.. hardly.. well only a few.

Nutritionists.. and some chiropractors do. Its amazing what they discover.. and change..improving one's lifestyle.

You and your dtr are IN my prayers.. and NEED A MIRACLE!!

I'll pray for one.

Jan

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Hi,

What about coaching her for some bed exercises at first and see how she does.

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!

I used to do this too ... I went from doing aerobics 3 times a week to being like this ...

Please check out the thread I started on testing for fatigue in CFS .. Also, have you had her nutrient levels tested ? I'd have her tested for celiac disease too.

My DD is 21 now but had some rough times (positive ANA, anaphylaxis) in her teens, so I can relate to what you're going through. I'm sure she appreciates your efforts.

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Desperate mom, I might make you feel a bit better to know that I was your daughter. It was not the teen life I would have chosen, but by the grace of God and my amazing, strong, constantly pushing mother, I got better! It took years of trial and error, with teds hose, inderal, pain meds and simple motherly harrassement, but I eventually got out of that bed. I live a fairly normal life now, dealing with POTs, etc. but I do have a life.

The best things my mom did for me were things to keep my spirits alive. If it meant getting dozens of books about dream trips or videos about adventures at the library, she did it. If it meant putting up with my beloved poodle (messy boy) she did it. That dog was my constant companion when I couldn't move, or eat or sleep. He was there to comfort me and listen. When I was losing weight and nearing heart failure, my mom dragged me to one more cardiologist and said..look, I don't care what you call it, it is killing her, so if you have to simply treat the symptoms do it. Finally, someone listened and I was put on high dose inderal and teds compression stockings to be able to even stand. But it did help. Eventually, very slowly, the strength back. With strength, I could eat. They let me eat anythign I could keep down. I think I lived on english muffins and butter for a year or two. Mom made me sit up in bed when I didn't want to, she made me walk to the bathroom a few times a day, just to move. It didn't matter if I ate, I had to come to the table to get a tiny bit of mobility. All of those pushy, keep the body moving things that when we are in pain, and angry and resentful at life, we really don't want to do. Keep pushing Desperate. She needs you to be her advocate and you are doing a wonderful job.

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Your story has left me in tears. Being a mom is so hard even when our kids are relatively healthy. My heart goes out to both of you. Through my health battles this I know: don't give up. There is something that will help. Keep looking. For her spirit, remember to make her laugh (my 14 yr old daughter loves the Reba series so we have been netflixing them). I am sending you all kinds of good wishes.

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Your daughters symptoms are like my son when he was a teen, he has Chiari Malformation, please look into this. Pain in the back of neck, weakness, POTS, EDS, these are classic symptoms of CM. Please read more about CM and if you suspect it, insist on a brain MRI. Take care and I hope you find help for your daughter soon.

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You've gotten lots of wonderful help and advice. I just want to say that I have been very sick with POTS and I know how terrible it can be. Please know it is very possible to get better with time and/or medications. I hope you find the help you need very soon. I am thinking of you and your daughter. You are a wonderful mother.

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