My Daughter Is Loosing Her Will To Fight

[momofsara]

From one Mother to another, you have my heartfelt understanding and sympathy. My Sara has had her periods of losing her will also. And truly it is not any wonder when you are so young and see the rest of the world passing you by.I think depression and despair are some of the worst symptoms of this whole dysautonomic problem. Your body cant get better if your will is just too defeated to keep on trying. I dont know what methods may work for rebuilding her will, but I certainly hope something happens to help her. The same thing doesnt work with everyone, but with Sara, I simply told her if she didnt fight, she wouldnt live, and if she didnt live, I would lose my will also.... I tried to impress on her how vacant all our lives would be without her, it did seem to help her some. As I say, each person is different, so that might not work for her.

As to the insurance deal, is there a possibility for home health?? They do some physical therapy also. We have had to fight for certain treatments for Sara also. Her doctor has been very helpful in getting her tests and treatments as well as hospitalization when she needs it. All that can be very difficult with Medicaid which is Saras only insurance. As others have suggested, your daughter sounds as if she could be admitted for IV infusion due to dehydration. Surely he can come up with something to warrent a hospital stay.. I am hoping he will think of something soon, immediately would be best!!!!

I also know how hard it is to deal with this sort of thing, and your own will can begin to sag as well. People I've known for years who know something of our problems, will say, "I dont know how you do it", and I always say, " You do what you have to do, when its your child". Mothers always come up with the strength from somewhere way down deep inside. So, keep on fighting for her and for yourself.

Please know that I will be holding you close in my heart and prayers for help with the insurance and also for your dear daughters renewed fighting spirit.

Please keep us posted and know that we are all here for you any time.

Much love to you both..

Susan

[PattiL]

Hi, I've sent you a private e-mail.

Hugs to you and your daughter.

Patti

[sue1234]

You've received alot of good advice. The only thing I would add is, has she had a stimulation test to see if she has Addison's disease? Any time I hear of someone who can't get out of bed, and especially vomiting, I think of Addison's. I don't think a doctor would refuse to test, given the severity of the symptoms.

[Maxine]

I'm so sorry your daughter is struggling with health problems like this-----especially at such a young age. It breaks my heart to see young people deal with such limitation when they should be enjoying all the normal fun things young people do.

Have procrit injections been suggested, or mestinon? It sounds like there might be something more going on, maybe her POTS could be secondary to something else.

I know things look pretty bad right now, but I was not able to get out of bed for a month, and things changed slowly for the better. I know things could be better then they are now, but they are better then they were in March of 2001. I crashed hard in Dec. of 2000, and by March I couldn't move much at all.

You sound like a very supportive and loving mother, and I know you won't stop looking for answers to help your daughter function better. I know you will help her find what's causing all of this.

You, your daughter, and the rest of your family are in my thoughts and prayers.

Maxine :0)

[Desperate Mom]

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.

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!

[Guest tearose]

I don't know what to add. Please keep trying things. Have you turned to her, looked into her eyes and soul and asked what one thing she would suggest that would make it possible for her to have hope again? I pray there is one thing that would make a difference to her and that she can verbalize it.

with endless support and prayers,

tearose

[babettess]

Desparate Mom,

My heart goes out to you and your daughter. I have recently been diagnosed with POTS after not being able to get out of bed for over 3 months. My 17 year old daughter is scheduled for a tilt table test this coming Friday as they think she also has POTS. She's not as bad as I am but her life has still been disrupted. I'm so scared for her as I don't want her life to be as difficult as mine is. I would take a double dose of POTS just to keep her from having it. My oldest daughter is severely disabled. I have had to fight for medical care for her since she was born. Keep good records. Organize her medical records in a binder so that you can update her symptoms, doctor visits, test results, etc. The more detailed records you keep the better proof you will have about her condition.

The best suggestion I can give you is to please share this forum with your daughter. If you can at all - get her to the computer or the computer to her. Maybe actually seeing that other people feel like she does and that these other people care about her will give her a boost. This forum has been the only thing that has given me hope. When I couldn't lift my head off the bed and couldn't even reach my fingers out to send a reply, I could still read that I wasn't alone. I have learned so much on here that I actually believe, no I actually am sure, that I know more than my doctor does about POTS.

Keep reading and searching. Print out your post and the replies for your daughter if she is unable to get to the computer. Let her know she is not alone and others are here for her. Ask questions on here that she wants the answer to. Show her the videos about POTS on youtube.

Add some easy humor to her day. (You don't want to get her over stimulated, of course.) Wear goofy sunglasses and a lampshade on your head when you get her a drink. Serve her drink in a pretty glass. Add fresh flowers to her room. Put her favorite music on an MP3 player. One of my favorite things to do (when I couldn't really do anything) was to listen to relaxing music on my MP3 player. It was an inexpensive source of enjoyment since I like music. Build on the strengths she had before she got sick.

Please take care of yourself. I know how easy it is to forget about yourself when you are taking care of someone you love. But you have to be well to be able to take of her.

You and your daughter will be in my thoughts and prayers.

Babette

[mjan]

Again.. she has your spirit and you unconditional love. You cannot put THAT in any prescription!!

VALIDATE her feelings..REFLECT whatever she says like...So you feel crappy? So you dont want to do anything..

see what she reflects BACK to you.

Pray...

Have her FOCUS on anything SHE likes..or used to like.

tell yourself and others not to FIX her at this moment..(unless she asks)

and let her be in the process... her journey.

Her spirit IS being guided.. she IS learning what she should do..and she has YOU~!

For you ARE her ANGEL~! And she is surrounded by angels..to guide and comfort her.

If she is grieving..do you know those stages/feelings? SHOCK DENIAL..ANGER..(Which includes resentments..feeling sorry for self..why me? etc)DEPRESSION..BARGAINING..AND ACCEPTANCE.

PRAY...

for YOU to be guided too..

to be HERE with us... so WE can help YOU through this too !!

Warmly, Jan

[Desperate Mom]

Again.. she has your spirit and you unconditional love. You cannot put THAT in any prescription!!

VALIDATE her feelings..REFLECT whatever she says like...So you feel crappy? So you dont want to do anything..

see what she reflects BACK to you.

Pray...

Have her FOCUS on anything SHE likes..or used to like.

tell yourself and others not to FIX her at this moment..(unless she asks)

and let her be in the process... her journey.

Her spirit IS being guided.. she IS learning what she should do..and she has YOU~!

For you ARE her ANGEL~! And she is surrounded by angels..to guide and comfort her.

If she is grieving..do you know those stages/feelings? SHOCK DENIAL..ANGER..(Which includes resentments..feeling sorry for self..why me? etc)DEPRESSION..BARGAINING..AND ACCEPTANCE.

PRAY...

for YOU to be guided too..

to be HERE with us... so WE can help YOU through this too !!

Warmly, Jan

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.

[summer]

I can truely feel the love you have for your daughter. I'm so sorry for the very difficult time you are both going through. I have 2 daughters of my own and can only imagine how difficult it would be to watch either of them experiencing such illness. I'm sure it is a very helpless feeling. Please know that we are praying for you both. God bless you for loving her so much. I hope your doctor will persist - as I have no doubt you will - and that she will soon have the help she needs in hospital.

Summer

[masumeh]

There were too many replies for me to read. So I'm sorry if any of this is repeat type info...

Firstly, we all feel for you and your daughter. Although POTS has a broad spectrum of severity levels, I guess we can all sypathize in one way or another.

Secondly, I hope that your daughter gets better with time. If it's autonomic damage, her nerves might heal slowly over a four-year period. Coping with symptoms in the mean time is difficult, but potentially transitory.

My personal experience is different because I did not suffer from POTS until age 20, suddenly with a mono infection (EBV). But I also spiralled for the first year. I was married, and I decided to become pregnant because I thought I was dying (I was undiagnosed) and I wanted to at least accomplish one life goal, having a child. I was bedridden, dizzy all the time, incoherent mentally and verbally, and very isolated except for a few loyal ppl (my husband, mother, and best friend). During my first trimester, I stopped fainting (although I was vomitting my brains out!). That was the beginning of a different, better level of functioning for me.

Today, 7 years later, I can do my domestic routine with my daughter and husband without much perturbance from POTS. I am not able to work outside the house. But, as long as I limit my activities, I don't really FEEL like I have POTS. Flare-ups happen. But between them, I have months of calm and fun.

One tip, I don't know if it's really a good one, is to forget the doctors and hospitals. In my worst year, that only wore me out and exaserbated my syptoms. Staying home, coping in my own ways, brought me more recovery and peace of mind. I was not diagnosed until four years later. At that time, Midodrine really helped push me from semi-functional to almost fully-functional. But the real recovery for me was patience, hydration, pregnancy, and learning to change positions very slowly, not to lay down for long periods of time, and to walk as much as I could to preserve leg muscle tone.

Good luck with your struggles. Please let your daughter know that recovery IS possible. We all felt hopeless at some point--I think--and it nevery really is hopeless.

[masumeh]

Just want to add, after reading some of your replies in this thread, that it doesn't sound like POTS alone. The pain thing, as someone else pointed out, does NOT sound like just POTS. I had pain when I fainted, but not when I simply moved. Has she seen a good neurologist? Has she had an MRI of her brain and spinal cord?

If' it's muscle pain, can you give her Potassium? If her doc doesn't prescribe suppliments, you can give her Gatorade, bananas, berries, V8 Juice. Is it spasms, like muscle pain, or is it actually nerve pain (deeper, more electric than muscle pain)???

If it's nerve pain, my strongest advice is to find the best neuro you can access, even if you have to pay from pocket.

[juliegee]

Desperate Mom-

I can't get you or your daughter off of my mind. I thought of another resource that might be helpful, especially navigating the loss of insurance, etc. Check out the Pediatric Network for CFS, FM & OI (Chronic Fatigue Syndrome, Fibromyalgia and Orthostatic Intolerance.

www.pediatricnetwork.org/

In addition to support from other parents dealing with similiarly sick children, there is a wealth of information on transitioning teens to young adulthood- help with all aspects of independence (while dependent), like insurance, education, etc.

Your story of Baby made me cry. I have no doubt that Baby is now your baby's guardian angel.

Nothing is harder than seeing your child suffer. Take good care of yourself so you can continue in the caregiving role. May God hold you in one hand and your sweet daughter in his other.

Julie

[juliegee]

oops, forgot to ask- has she tried florinef yet? That has been a miracle for my son and me (at different times!)

Julie