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» LymeNet Flash » Questions and Discussion » General Support » Watching My Child Suffer - 1 year update

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Author Topic: Watching My Child Suffer - 1 year update
4Seasons
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I POSTED THIS ONE YEAR AGO - SEE UPDATE AT END:

My daughter can't get out of bed.

She moans with pain when I help her onto the bedpan. She is 14 and lives in disposable diapers.

She hasn't taken a step since last April.

She has a feeding tube in her stomach, due to severe nausea and weight loss. I make her healthy, organic food with a Vitamix & seive to feed thru her stomach tube while she sleeps.

Some days she won't talk, others she can't talk. But most days I can get a smile or two out of her.

I follow a complicated protocol from the LLND that keeps me going day & night.

I hold her every day while she cries with pain. She has no friends, she too sick to respond.

We have a wonderful, supportive community for which I am so grateful, but I feel like I am at my wits end. My own Lyme has had me in severe back pain for 28 years. Almost my whole life. Now I watch her suffer and wonder what the future holds for her.

It drives me crazy when people say "God never gives you more than you can handle."

I am on a new protocol, which is likely bringing me down, but I feel like I can't go on. I keep searching for another option, but I can't find one. I know she will get better, but how many more days like today and yesterday and last month and last year will there be?

Everybody tells me how strong I am, but my child's suffering is breaking me into pieces.

[ 02-26-2011, 03:02 AM: Message edited by: 4Seasons ]

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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Tincup
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Oh 4...

This breaks my heart too.

NO CHILD should go through this... and with you suffering too...

This is horrible!!!

Tell us what we can do?

Will a church send someone over to help?

I will make calls if you'd allow it.

Or social services?

Have you asked for help yet?

Please let us know.

Please hang in there and let us know what we can do to give you some help.

And know that we feel your pain. Bless your heart.


[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Ocean
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I am so so sorry! How awful for your daughter and for you.

I will pray for your daughter and for you. I wish that there was something else I could do.

Like TC said, if you would let her, she may be able to help.

I am at a loss for words.

Please take care,

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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ugagal
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Your post definitely helps put things in perspective! The next time I feel like complaining or feeling sorry for myself, I will first stop and think about what your beautiful daughter is going through. You sound like an amazing mother and your daughter is very lucky to have you. Your family is in my thoughts and prayers.

--------------------
My comments on this site are not intended to be taken as medical advice as I'm not a physician.

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shelly23
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Hey 4 seasons, first i think your a great parent with an unconditonal heart. I wish there was a center for lyme like there is at St. Jude so in a time of sickness it could still be cheerful. I feel bad she has no friends.. I wonder if somehow on this post we could start care "fun Packages" for kids. THis way they could get something in the mail from "pen Pal's. Like movies or puzzle books or oher teenage/kid stuff.
As i kid i loved care fun packages for special events.. I your intrested in this effort let me know i would be all about sending her something.. Just from another lyme friends

--------------------
Shelly
~ IGM~Positive
CDC Positive
23-25 +
31+++
34++
41+


I am a Dreamer, Believer, and Conquer; I will overcome this disease !!!

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Need Lots of Help
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Oh, my god, Shelly that is an awesome idea!!

4, I am truly sorry about your daughter, nothing can break a mother's heart like seeing her kids suffer.

We would rather suffer than let them suffer. My daughter is 5 and she has lyme. However we are now getting her treatment. She likes to dance and cheer, I don't know what would happen if she couldn't do those things anymore.

It is so hard for us to know what would help you in this situation. But, if you would tell us, we could surely try!!

What things can she do and what kind of things does she like? Does she like to hear books via CD player? Does she like any movies?

I know it is so hard to go on, but you still have to hold hope that one day, she will be able to get up.

Regards,
Shalome

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Need Lots of Help
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In thinking of Shelly's post, do you think that if any of us are well enough to go on vacation, they could make her a DVD, so she could maybe learn about the world??

I am sorry I know that may sound stupid and can't even compare to what I would like to do for you. I would like to come over and give you a couple days of rest.....

Shalome

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4Seasons
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Here is what you can do ---

You've already done it! I need a place to voice my despair and to hear back words of compassion from people who understand.

thank you so much for that gift.

I have a supportive community - friends paying to have our house cleaned, dinners dropped off, people checking in. My husband urges me to get out. I have someone coming two hours a day M-F to help her with some school work and give me a break.

but, still, somehow it always comes down to me. I'm the one she is holding on tight to to keep from going under. I'm the one who understands. Sometimes I feel like we are both going under.

It is hard to not let her see my despair.

She won't let anyone in her room but me, Dad and teacher most times and of course, I'm the only one who can help with personal hygiene.

It used to be that a DVD movie or game would cheer her up. Too long ago now. She doesn't want to have anything to do with Lyme friends or teen chats or any of that.

She has a strong survival sense. Today she is listening to a book on tape and playing Sims2 on her computer. Nights are so much harder. It is watching the ongoing suffering that wears on me.

My sister is coming today for a few days to help out while my husband goes out of town. That will be good.

Thanks for listening, this board and all of you are such a blessing.

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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Dekrator48
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Dear 4seasons,

God Bless you and your daughter for all you are going through.

My suffering seems to pale in comparison and feels insignificant.

I will pray that her therapies are effective and she regains her health, as well as yours.

I will also pray that your family finds the strength it needs to cope with all of this.

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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4Seasons
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I thought of one thing that would help me - is there anybody available to talk by phone late at night? Around midnight, PST. That is when I feel the most desparate and alone.

I don't mean on a regular basis, just in case I get in a bad situation like last night.

Maybe I could email first to see if anyone is awake.

I know it's a lot to ask.

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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feelfit
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There is nothing as divine as a mothers love.

I will pray for your daughter and you, for healing and comfort.

I would be happy to speak with you by phone, but I am 3 hours ahead and sleeping. If there is anything else you can think of...just ask.

Stay Strong,
Feelfit

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Need Lots of Help
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PM sent.
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hshbmom
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4Seasons, my step-sister went through this very situation with my neice, who had undiagnosed Lyme for 10 years. She was bedfast for 2 years, from age 14 to 16...couldn't have any light or noise in her bedroom, such as an air conditioner. She lost down to 68 pounds.


My sister had to carry her to the bathroom. My neice screamed or moaned day and night. My sister said it took all her strength to NOT commit murder/suicide. They finally found an LLMD in NY and began agressive treatment. This physician literally saved her life...several times.


Today my neice is a beautiful young mother of two. She's on her feet and lives a "normal" life. She deals with daily pain and headaches, but she can function.


I'll pray for strength for you and your daughter.


My daughter is 16. She got sick four years ago with repeating viral-like illnesses. She's in terrible pain every day. It's so hard to watch your child in pain.


Do you have a pain specialist for your daughter? We've gone through several until we found one familiar with the depth of the pain due to Lyme disease. This pain doctor was recommended by our LLMD.

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Radha
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i am so so sorry to hear how much you are going

thru, my mother is my primary caregiver, she is

with me 24hrs a day, never leaves me and really

doesnt want to either, never makes me feel like a

burden, i am bedridden too, have been for a long

time, i am really only living for her since she

would be totally devastated if i died, but i am

suffering too much all the time and i can relate

to what you are going thru and i really wish and

hope both of you get some peace and some relief,

i dont talk to anyone except my mom and only she

understands all my needs and problems, she is my

angel just as i am sure you are your daughter's

angel, she is blessed just as i am to have such a

loving mom,

Radha

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Tincup
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You doing any better mom?

My prayers are for you and your little one.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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LisaS
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She is in my prayers. You're whole family is.

--------------------
https://www.facebook.com/profile.php?id=1660435643

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bettyg
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4 seasons, such a touching post; my thoughts, prayers, and heart go out to your dear daughter, YOU, and dad! [group hug] [kiss]


this is WHAT SUPPORT is all about! you have many folks out there on pacific coast on here at that time, etc. that are quite the activists.


if you don't get any pms of folks offering, please send me a pm, and i will call you from iowa....2 hrs. difference in time, BUT I'M UP!


so glad your community is involved in doing all of the above for your family!! [group hug] [kiss]

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Vermont_Lymie
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Dear 4seasons,

You and your daughter are in my thoughts and prayers. My best wishes for improvement with treatment; I just know you are going to get better and then help your daughter heal.

I wrote you a long post which then got lost due to my computer ineptitude, in your other thread in medical about your back pain.

Just wanted to let you know that I found bicillin (which I took along with plaquenil and biaxin) exceptionally good for erasing my physical symptoms, such as muscle tightness and back pain.

However, it did take several months, really over 8, to see the best results. My energy level went back to normal with bicillin, and my long-standing pain which I had for years just disappeared.

I wish the same for you. It takes the body a while to heal, and you and your daughter are now on that journey. Much love and best wishes.

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rosebuds mom
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I want to help. PM sent.
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Tracy9
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If you aren't already there, please join us on www.lymefriends.com. Also join us in chat, we are most active around the midnight to 2 am hours. Many of us would be happy to jump on the phone.

We also have a parent's group on LymeFriends that is very active.

God Bless you.....

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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aMomWithHope
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4seasons,

I'm so sorry for your pain and your daughter's suffering.

I have a 12-year-old daughter who is going through this now too--not to the degree in which your daughter is suffering--but I understand the heartbreak of seeing your child in pain and not being able to do anything to help.

Please pm me if there is anything that I can do to help you.

My prayers are with you.

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lymemomtooo
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4 seasons and the other moms. I am so damn upset that others have to go thru this Hell...Been there so I can understand.

The only things that I think that really helped were the IV Doxy and Rocephin for months. We also had a nurse that came in once a week to do vitals, check site and would change dressings.

I do not know what I would have done without the support of Lymenet and a local lyme advocate. I am sure they would have had to troll for me.

Add to your load the fact that my daughter WAS suicidal and even used the picc line for this twice, along with her OCD and some God awful other stuff that kept her Dad and sister from being allowed to help and it was tough.

Family and friends said we were nuts to not institutionalize her, that she was killing us. Well, I could not do that and thank God we didn't. However, she did attempt to kill me once and did some body damge on 3 occasions

The road has been horrible. But stick to it and keep reading and working with the drs. And do not hesitate to find better ones if need be.

Keep yourself as healthy as possible. Find something you can easily pick up and put down. I do some simple crafts and quilting. Often outside her door for hours making sure she was safe.

Also try everything possible to keep her nourished. I know that is hard at the moment. I juiced things and made all types of shakes when I found things that she could tolerate and would eat.

I also wondered about God not putting more on my plate than I could handle. I still do..I just continued to pray and my house looks like bombs have gone off but I need the strength still for help for her.

She is better. She has taken 2 courses, works part time at a pet store, and has passed a phlebotomy class but can't find a job.

She also continues to be treated by a llmd, a psychiatrist, an endocrinologist and has received support from a brain damaged clinic.

She continues to dislike her parents and hates drs.She makes poor choices and is often non compliant and defiant about being over 21 and no one can make her do anything...But thank God, she lives and there is still hope.

I pray nightly for a cure and for no more children to have to suffer in this way. lmt

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catskillmamala
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4,

I am so sorry. I just posted my success and then read your post. I am thinking of you and your daughter. Your post makes me even more sure that battling this ugly disease (and co's) MUST be a passion going forward. There are too many sick children from this horrible disease.

I am not religious, but I am praying for you both. And please excuse my own insensitivity.

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lymemomtooo
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I forgot to say that the picc line was important due to nausea. She could not tolerate the oral meds, even at low doses. lmt
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rosebuds mom
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Hugs and hope for moms and dads. I pray for us all. Extra hugs for the children. It is so unfair.
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Need Lots of Help
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4-

How are you doing? I don't expect to hear good, but maybe, "best I can under the conditions".

We are all praying for you and your daughter!!

Shalome

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4Seasons
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Thank you for all your kind words of support. They help more than I can say.

We have had a very rough week. My hardest week ever since this nightmare began.

I totally crashed physically and emotionally a couple of days ago. My LLMD pulled me off my abx and ordered me to get away for a couple of days.

I haven't yet, but we are going to try this weekend. I haven't told my daughter yet, I know she will flip out. My husband is going to stay with her.

I have a huge systemic candida problem going on and it is making me totally exhausted. I can bearly keep my head up.

My daughter is so emotionally fragile. She had two complete breakdowns yesterday. Thankfully she has never attempted suicide, but she is talking more about it and wishing she was dead. We have a LL psychiatrist on board as well as a LL family therapist by phone from CT, so I pray it will never come to that.

The good news is that her lab work is looking good and her doctors are happy with how she is progressing. We are treating her Babs with/Zith and Mepron right now and she is herxing with bad nightmares and other things.

I pray things will get easier soon. It is helpful to hear that other people have been in our situation and things are better now. I pray for the strength to go on.

Please keep us in your prayers.

4 Seasons

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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John S
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Wow. Some things just leave you at a loss for words.
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sammy
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Dear 4Seasons, I will pray for you and your daughter and your family.

I wish I could do more but I know that God can do so much more than I could ever imagine. I do believe that he hears our prayers and will answer them. I also believe that God does allow us to have more than we can handle. It is in these times that we have to rely on Him because we cannot make it alone. And He will carry you.

4Seasons, keep hoping, keep praying, keep dreaming. And please update this post every now and then so that we can know how to pray for your family specifically.

Take care and God bless you!

Sending a big hug your way:)

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CD57
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4seasons, I am near you and know of some good practitioners that you may already know about. Let me know if I can help.
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4Seasons
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I am supposed to go away for two nights, starting tomorrow. Not far, about 35 min. drive.
To stay at a friend's rustic beach house.

I'm so ambivalent. It is hard to leave.

My daughter told us she doesn't feel safe with her dad. He loves her a ton, but caretaking is not his strong suit. He lets me run everything and keeps letting her push him away. It is frustrating that I can't get thru to him.

Also, we haven't figured out the toileting issues. She needs helps and obviously doesn't want it from him. I'm the only one who helps with that.

I have to keep my sanity and health so I can help this beautiful girl. It's hard to know what the right thing to do is.

On the up side - I got her to laugh a bunch tonight, playing a game "Honey do you love me?" where you try to get the other person to laugh and they try not to. We haven't done it for years. I was so happy for that little while and I know she was having a good time too.

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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Jane2904
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Dear 4,
You and your family are in my prayers! I am so sorry for all your daughter is dealing with.

It is hard to watch our loved ones, especially children suffer.

You have to take a break and take some time out for yourself. It is hard for anyone to understand, unless they have Lyme or care for someone that has Lyme.

Take that break, I know it will be hard, but you have to take care of yourself to be able to take care of your daughter.

I am finding out the hard way, you can't put your health last.
Hugs to you and your family, things will get better. You are truly s special Mom.
Jane

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Need Lots of Help
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4-

Did you take the time away like ordered??

Shalome

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kelmo
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4seasons, ask your doctor to have a nurse come to the house to check on your daughter. It sounds like you need another level of caregiving.

I remember when my daughter was about her age and waking up in the morning for school, but saying her legs hurt so bad she couldn't walk.

We went for two years after that trying to figure out what was wrong.

She had to stay home from high school for the last two years.

But, to give you hope, she is now taking community college classes. I have to drive her, but at least we've come up from the level of total care.

Take care of yourself (I, too, can't be treated to the level I need because I have to work and take care of her and my parents).

So, please ask your doctor for home care. He should be able to connect you with an organization. My dad has a hospice nurse come over to help with my mom.

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AthinLyne
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4seasons, spring will come soon. moms do what needs to be done - no matter what it takes. that is part of our gift. you can do it and you will. there is no other option. but remember that you need to take care of yourself in order to care for your child. sometimes that is harder to do - to take time for yourself when someone needs you so much. but you must - in order to do what you need to do. my thoughts and prayers are with you and your daughter (and dad). you've gotten a lot of good support and advice from people - we're with you.
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Melodymaker
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so sorry to hear of your great struggles, I am keeping you in prayer.

You say that someone comes two hours a day, M-F, to help your daughter with schoolwork and give you a break. However you too are very ill and need more support.

Ask yourself what would help you. What is it you need to make your life and family's illness profile manageable?

All too often we are so busy trying to get through the daily struggles that we never really stop to think what our needs are. What additional support we need.

At the level of illness you and your daughter are experiencing, what would help make it all manageable for you?

Do you need more hours of rest? Do you need an additional person to come and spend time with her? Does she need a friend? Perhaps the big sister organization could be helpful with that. Or a Lyme support group.

What can the members of this board do for you? Remember pen pals of old? Maybe a few pen pals from across the country would pick up your daughter's spirits as well as yours. We all have pens!!

Let us know what we can do, and think for a few moments about making your life a little easier for both of you. There are no easy solutions, but the older I get the more I believe there is a solution to every problem.

Keeping you all in my prayers.

--------------------
Wishing You Showers Of Blessings!
Lyme since Fall 1983 = Diagnosed Summer 2008
IV Rocephin 7 weeks Stopped due to drug fever
Now doxycycline
"For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11

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4Seasons
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I did get away for two nights last weekend, but had a breakdown upon my return.

My sister-in-law came Tues-Sat and it was such a blessing! I got to rest and she took care of so many things.

Now I'm on my own again. I had a phone appt. with a LL Psychiatrist and we are adjusting both our psych meds, so hopefully that will help.

My daughter reached out to her dearest friend and they now have a standing date for her to visit every Wed. We are all very happy about that.

We are both starting new protocols this week - her IV Zith and me Bicillin injections. I am having a very hard time getting my oral thrush under control, so no more oral abx for now.

She is still so fragile. She is in so much pain. Trying to deal with bedsores on her feet now. But, she is trying to read a book, which hasn't happened forever. She will not let very many people in her room and especially not people she doesn't know.

I am fragile too. Holding it together for her, but falling apart when I get a break. I went to a movie by myself today and spent 20 minutes sobbing in the bathroom stall. I wish a family member could move in for a while, but they are all busy and live elsewhere. It is hard to know specifically what to ask for from someone else that will help. We can't afford in-home nursing, nor do I think we need it all the time.

I am going to ask around and see if I can get someone to come in and wash dishes, fold laundry, etc. I really need lots of rest right now.

I am so very appreciative of all the support we have received from this post. Bless you all.

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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AthinLyne
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4seasons, it sounds like you are on the right track with getting more help around the house. It's amazing how much time those chores take,and they're not exactly uplifting...

Can your husband take over in the later evening hours so you can be in bed by 9??? Or plan a nap in late afternoon and have him sit with your daughter and read a book to her? I know that when I am very tired, everything seems much harder.

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unsure445
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Just said a prayer for you and your family.

You are an amazing mother!!!! My heart goes out to you...

Hang in there. Lots of deep breaths.

It will get better!

--------------------
unsure445

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4Seasons
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It makes it so hard that my daughter is sure that I am the only one who can care for her.

She is so angry with her father because he is not as nurturing, often clueless and, I guess, because she is 14. Also, she is very sick, and truly afraid that he will not take good care of her.

I left for my weekly sauna last night and she called me hysterical and begged me to come home.

Both she and her dad were in tears (in separate rooms) when I got home.

My husband and I are working with a LL therapist about this over the phone, but the bottom line is more stress and pressure on me.

I must say tho that I am feeling stronger and like we will make it throught this ordeal at some point.

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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lymeberry
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Wishing improved health for you and your daughter. You are an amazing mother.
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4Seasons
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UPDATE ONE YEAR LATER -

I was online tonight and reread this post of exactly a year ago. The responses were so compassionate. They really helped me thru a very rough time.

I am so happy to report that my daughter has improved dramatically in the past three months!

Until then there were many hard days, tears, emergencies, intensive care, etc. but she finally turned a corner around the beginning of the year. From there change has been rapid.

After two years of being non-weight bearing, she is starting to walk a little bit with crutches. She is swimming and doing water therapy. Her mood is so much improved and she is looking forward to the future. She is better on every level. She still is in quite a bit of pain, and has a long way to go, but she has come so very far. Right now the pain is mostly from the rehab.

We have done so many things to help her improve that I can't pin down what has helped the most, but my motto is detox, detox, detox - drainage, binding, etc.

I'm still exhausted from full time care, but we are getting out almost every day and she is getting dressed and wanting to do things. Her face is so clear and there are many smiles.

Thanks again for all the support. There is always hope. Yipee!

[ 04-28-2010, 02:24 PM: Message edited by: 4Seasons ]

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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BoxerMom
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Your update made me cry. I am so happy for you both.

Your hard work has paid off - you got your daughter back. Lyme is a journey. I know you are not finished, but I sincerely hope the worst is behind you.

With love,
BoxerMom

--------------------
 - Must...find...BRAIN!!!

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Jane2904
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I am so glad to read that your daughter is getting well.

Thanks for posting and hugs to you both-Jane

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Topaz
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Wow, I'm sitting here and have chills reading this.

I can't tell you how happy it made me to read your update.

You are doing a WONDERFUL job.

All kinds of good thoughts being sent your way and wishing your girl continued improvement.

*BIG HUGS*

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greengirl
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Wow. I was not here during your first posts, but I am so happy to see the improvement. You and your daughter are inspiring.
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lyme in Putnam
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I thought the first posts were now, until I was reading further on and found out they were last year. Thank God. Hope you and your daughter continue to improve. I have a 15 year old and couldn't imagine what you went through.

--------------------
He took u to it, He'll you through

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sutherngrl
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So glad that your daughter is finally improving.

Reading through this entire post just made me speechless. There is a lot of amazing support here; and a lot of strength in all of us.

Hope your precious girl continues on her upward trend!

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sammy
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4Seasons, I am so happy for you and your daughter! Thank you so much for coming back to give us this encouraging update. You really made my day [Smile]
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lyn8
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Very happy for you and your daughter. Wishing you all the best to continue upward! My daughter is 13yrs. old and we have had a terrible year as well, she just went off meds. so we are hoping for the best, but she is finally becoming more social. I hope your daughter gets to be with friends more, I think it helps. :-) Good Luck Guys!!
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ping
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I am so very, very impressed by the both of you.

It's stories like these that really brings home my motto to me yet again, "WE ARE MORE THAN CONTAINERS FOR LYME"!

YES!

--------------------
ping
"We are more than containers for Lyme"

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17hens
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No words. Just tears. Tears of sorrow and of joy. And prayers of thankfulness.

--------------------
"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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Need Lots of Help
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OMG, that is so GREAT!!!
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carly
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Thanks for posting this!

HAPPY MOTHER'S DAY.

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blinkie
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God is good! I'm so happy to hear this. Keep on truckin...you both will get there eventually. This disease is not for the weak. God has a purpose for our pain, even when we can't see what it is.

I'm just so happy for you both!

Yes! Happy Mother's Day!

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