My girl in the hospital
 

Hi all,

I was hoping you would pray for my Lindsay. She was admitted into the hospital for vomiting, she has been vomiting for over 6 weeks. Just hoping you will pray. She is better today, after about 8 bags of fluids.

Thanks,
Sandy

Sandy, So sorry to hear about this news but I am glad that treatment is working. Of course prayers for both of you, Lisa

Sandy

I'm so sorry to hear about Lindsay. I hope she is feeling better soon and will include both of you in my prayers. Please keep us posted on how she is doing.

Hi Sandy and Lindsay, I can't imagine how awful that it for the both of you. I believe in prayer and know how powerful it is. Would you please let us know how she is and what is causing the stomach issues. Does Lindsay have internal RSD? I do, but have only been sick at stomach once. My entire choice of foods have changed-disliking food and drink I used to enjoy. Please give her a hug from me and I send a hug to you. Your friend, loreta

Oh, Sandy!
I'm so saddened to hear of this!
i am a parent myself.
Yet my kids don't give a dam.

I wish you ALL the best that You can do, for Lindsay!
I'm sure, that she loves, and cares for you deeply!
What else could she do?'
Oh my!

While we cannot completely understand it, it maybe up to us, to ourselves,
to understand?
I don't know?
And, I could never!

Lordy,
SANDYS!
I just cannot admittadly, accept what YOU are forced to!
How could I be?
Even though, I''ve had this RSD monster, for some 27 years.
How could I EVER ACCEPT what you deal with?

You, my dear,
Are my Forever, ANGEL!

AND,
IF ANYONE EVER TRIES TO TAKE THAT FROM YOU<
KNOW WHAT?

SHOO THEM AWAY!

YOU, ARE THE QUEEN, OF HOLDING THE PAIN!!!!!!!

I LOVE YOU ALWAYS,
AND,
YOU ARE AT THE TOP OF MY PRAYER LIST!!!!!!!

SCREW OURSELVES!!!!!!

TAKE YOUR DAUGHTER!!!!!
AND< LET PRAYERS GO FORTH TO HER!!!!!!!!


I LOVE YOU BOTH!!!!!!]]]




PETE
ASB!

Hi Sandy, I just read Lordwoods post-it made me wonder about Lindsay, although I so hope this doesn't apply to her. I did look up the word gastroparesis in the MayoClinic website under diseases and conditions. It certainly talks about vomiting, not being able to keep food in stomach. There were others that responsded to lordwoods post and had also been diagnosed with that immune disorder.
It does sound like a good idea to see a gastroenterologist though. Wish you both well and some answers. Does Lindsay take any anti-anxiety meds. For me, they are the best med I take, even over vicodin. I take low dose lorazepam. The calming effect results in less pain. How does Lindsay do with sleeping at night? I hope for peace for both of you, Your friend, loretta

:eek: vomiting for 6 weeks straight why the heck didn't those doctors admit her sooner?!?! We entrust our health to people these days that truly are unfit for the positions they obtain. I'm glad to hear shes feeling better. Its weird how symptoms can vary with gastroparesis, mine makes it feel like there is a lining of cement in my stomach. Just a couple of weeks ago I made the SEVERE mistake of eating a small salad from that thursday afternoon that I ate it till sunday night I was sick as a dog cause I could feel that sitting in my stomach and started rifting up stuff. I was bloated/swelling and hoped I would just throw it all back up but I wasn't able to, I was even to the point I wanted to have my stomach pumped but they wouldn't do that and my personal forced attempts to throw up didn't work either. Needless to say it was a 4 day experience I never want to ever deal with again. I hope your daughter is able to find relief and most importantly able to find a good doctor to help her. If she is diagnosed with gastroparesis initial treatments will include a medication called Reglan and dietary changes such as learning to eat 6 small meals instead of 3 large (this never worked for me but hopefully it will for her) as well as drinking boost. If things get worse you'll move on to NG or NJ tubes which are miserable. I hope you guys they best and stay strong.

Hi all and thanks so much for the prayers

Lindsay slept through the night. They took her off of the Morphine IV and put her on Toradol! It was amazing, no crazy narcotic crying she was up and laughing and slept though the night until of course at 4am they came and tried to find a vein, so she was tortured a bit. But went back to sleep and it is 6:30 am and she is still sleeping.

They believe that the narcotics are causing her stomach etc to enflame and cause this. We all know that RSD is a monster. They are probably going to start to let her eat today, so please pray that she is able to keep it down so that I can take her home.

By the way, they want her off of all Narcotics. :mad: How will she manage pain this way. She is taking Cymbalta and Trazadone at night and oxycodone which they have stoppped. We have stopped the trazadone and are talking about a sleeping pill... any thoughts to any that do not cause sleepwalking or side effects???

I will post tonight to let you know how she is doing. As far as gastroperesis we are meeting on Sept. 8th with this Gastro I want to get her home and I will research more and have this discussion in the office.

I love you all, you are part of my family and I so appreciate all of your prayers and support.

Love, love, love,
Sandy

Hi Sandy,

I am so sorry about your daughter and hope she feels better today. First I just want to ask how long she has been on narcotics? If it is a substantional amount of time 6 months or more she will go through withdrawal. If so the doctors should give her suboxon it's a drug that takes away 90% of withdrawel. FYI a doctor needs a special license to rx it, a PM doctor is the most likely doctor to have this special license. Don't let them BS you it works, its easy I have done it. At one point after a ketamine infusion I felt I was ready to get off everything and it work like someone just waved fairy dust over me. Before I go on I also believe the less narcotics the better it took me a long, long time for my PM doc to make me understand that. I had to go back on because after time the pain did return but slowly.I am on the least amount of pills since my accident and I will not ever take any long lasting i.e. oyxcontin, Opana, Avinza I've been on them all and no more anti-depressants. I think providing anti-depressants for a pain condition does more harm then good. I have been on Cymbalta, thought I was going to die, depakote, Zoloft, I can't even remember the rest. I understand why they do it but in my opinion I don't think it should be done. On the other hand drugs like Xanex, Ativian, Klonopin(which is a little to strong for some and is a benzo. so be carefull with it) takes the stress away which helps for RSD patients.

I know everyone is saying to themselves she does not have RSD that bad. To justify the above I almost lost my arm,had 7 surgeries, 10+ months of PT which was torture,many procedures SGB, epidurals, 3 - 5 day inpatient ketamine infusions it was a 6 year ordeal and I also have PN. But today I work Part Time and successfully was awarded perminent disability. Which was not what I thought I would be doing in my 40's with a degree in Computer Science. But I could never work full time and the stress of being a computer consultant which includes air travel and clients who think you should give them blood, it makes me shiver just thinking about it.

Sorry to get off the track but I hope things go well today and keep us all posted. My prays are with her.

Gabbycakes

Thank you for letting us know SandyS! I would agree with the doctors then, which in this case is good as I doubt there is any question to the fact she does not have gastroparesis as her body reacting to the pain medications explains such a large period of time throwing up which is uncommon of gastroparesis for that long. I am greatly concerned as with lighter pain meds such as Cymbalta and Trazadone and oxycodone that means her system cannot handle pain meds and is going to be a nightmare overall in trying to treat her RSD should the following not work. Although with her age she is young enough still to be in a program such as Dr. Sherrys (east coast) or as angelrsd has mentioned there is one in the ohio as well. So the out look of remission is very bright. I would disagree with gabbycakes as its been noted that while suboxon is synthetic it to leaves its patients addicted to it. The trazadone should be no issue coming off as well as the cymbalta and the fact her system doesn't handle them well means the going off of them will be easier. The Oxycodone will most likely be weened off. But using suboxon in a situation like this is a bit extreme as its uses are more for methadone, and Oxycontin. Its sole use is for addicts trying to get clean. I do agree with gabbycakes in the matter of using one of Xanax, Ativian, or Klonopin as its anti-anxiety and anxiety attacks are definitely not what you want your daughter having to deal with. I continue to hope the best for both of you and will keep checking in. Remember to stay strong!

Hi Lordwood,

First, we are very happy with the Cymbalta, that has been a God send for her pain. The trazadone worked for sleep, but they are going to klonadine, for sleep. That is what they were talking about today. They are going to look to try to find the least addictive.

On a second note, she has done the Cleveland Clinic Childrens Pain program two times. Which was a great help. She has been very productive with her life. She went to two concerts last month and was front row against the baracades! She went to a four day Harry Potter Convention...All this last month! Then the vomiting started, which threw a crap in her world. So they are continuing the Cymbalta and actually increasing that. Which has worked well for Lindsay. So hopefully, if they can find something that will help her sleep, (But, not a sleeping pill.) Once she sleeps she is good to go. They are also going to prescribe a proton inhibitor which will help the belly. So hopefully, hopefully, hopefully things will be good.

Thanks for all of your advice and I hope that you start to feel better, you have been gone for quite a while and it is very nice to see you back. I hope that things will change for you soon.

:hug:Sandy

Hi Sandy,

I am so, so sorry about Lindsey's latest developments - and the new school year is just starting. I really hope she can get back on her feet and feel better soon. I started praying as soon as I read your message!!!

I'm with Gabby on the warning regarding withdrawal, just be aware it could happen. I was sooooo sick because I weaned myself off the Fentanyl (without consulting Dr. Getson) after starting ketamine infusions. My sister, who is a nurse, figured out what was wrong with me. It is a horrible feeling! Eventually Getson prescribed tapering doses of Suboxone, which helped quite a bit with the withdrawal symptoms

I don't have any other recommendation for meds. I still need my Topamax (200 mg a day) for migraines, even though I get ketamine boosters every 3 weeks. And I take Fiorcet when I feel the need (i.e - low pressure weather systems). I have oxycodone but rarely use it. My daily meds also include 60 mg Cymbalta, which no one has discussed taking me off of, so I continue to take it. I use 800 mg of Skelaxin at bedtime to relax, I'm prescribed it 3 times a day but would never use it that often or I would be a total zombie. I also take Ambien CR 12.5 mg.

No one has written anti-anxiety meds for me for my RSD. Perhaps they think I have enough of the other stuff?!! But I know that a lot of other RSDers do take them and that they help a lot.

Often I have heard that weaning off of narcotics can actually make you feel better, because of the effect of hyperalgesia. For instance, my current PM doctor has suggested that I may be getting "rebound" headaches from Fiorcet and wants me to limit the amount that I use on my bad days. It's certainly a worthwhile consideration, and if Lindsey is able to safely taper down off her meds and try something else perhaps it won't be a bad thing - as long as they take good care of her in the meantime.

Good luck to you both, and know that you are in my prayers!

XOXOX Sandy

Dear Sandy..Lindsey and your entire family!
 

If I didn't hate RSD before..I sure do now!! I am so so sorry for Lindsey's hospitalization... That is just so hard on her along with you, Sandy..Know that she is in good hands and that she'll be over the hurtle and feeling better once they get out the sleeping kinks.. I, again am so sorry for all that you are all going thru...allow them to cleanse the meds out and take good care of your sweetie... I will keep you in my prayers...

Much love, Kathy:hug::hug:

I have taken suboxon and I was only on it for 2 months and off all meds. and I was taking everything and never had to take suboxon again. So,I quess we have to agree to disagree.

Hi Sandy,

I am so glad to hear Lindsay is doing better. My thoughts and prayers are with you both. Your strength is amazing what a lucky young lady Lindsay is to have you! God Bless

Jeanie

Hi all,

Here is today's update, she is off the morphine, oxycodone, trazadone and has had her cymbalta increased...added ambian cr and an anti inflamatory pain med for when she goes home. She is also on a stomach pill. So she starts the ambien cr tonight, but she has been sleeping for the past few hours and hasn't taken the ambien yet. The toridol (sp) is an amazing pain med. She is out of pain...but of course it is only IV and for a short period of time. Wish she could take it all the time. I have never seen her out of pain and sleeping like this. She was able to keep down some crackers today, but was queezy after taking the cymbalta. So hopefullly, she will keep down her breakfast so that we can go home.

On another note, they sure send some wacko's around to talk to you...Today this women showed up and was talking about some kind of heart breathing. I honestly thought Lindsay was going to DECK her. My other daughter came from UF to be with us and it was the funniest thing. The womens voice was so weird. She kept telling Lindsay to go to her special place. There is some humor in this today. I am sure that 20 minutes was worth a few thousands on my medical bill!!

Thank you all for your love and support, I had to log off today because I was so overwhelmed by the support...It is so difficult to watch my baby, even though she is now 17 go through this. I am so sleep deprived right now and I am probably babbling on. But I love you all and I don't know how I make it though everyday, and you help me.

Much love to all and I will post again tomorrow...hopefully from my humble abode!

Love Sandy

First off glad to hear the better news SandyS. Yes there are quite a few quacks in hospitals, you wonder how they ever got their license to practice. I'm keeping my fingers crossed and can't wait to see a post tomorrow saying you got to go home! Have a good sleep both of you.

On a second note to Gabbycakes yes we will have to agree to disagree as its all about if and how the medications affect you more or less. I was on methadone 80mg a day, Oxycontin 80s 4x daily, and Dilaudid 4mg 4x daily and to help my neurologist and other doc I went cold turkey off of them completely while in the hospital for a week and had 0 withdraw symptoms or side effects. I've always been able to quit meds at whim and move onto others. I'm against suboxon because all I ever hear about are the kids they put on that and then become addicted to it, and it's bad when your addicted to it cause Suboxon if you don't have it to take it will make you go through same withdraw symptoms as heroin addicts and even makes you throw up from deep inside to the point you can tell if someones a smoker or not. Its not fun to see a friend go through that especially when he shouldn't even need that med in the first place withdraw alone would have been better, and instead now hes forced to go through what addicts do when hes not even an addict. That's just degrading. I've only ever seen bad stuff with that medicine and still think it should not be allowed. But to each there own. Gabbycakes I would suggest you try dilaudid. Have a goodnight as well.

Well, so far so good this a.m. She slept well on the ambien cr, but she was woken several times from the infusion machine beeeeeeeeppppppiiiiiiinnnnnnggggg uncontrollably though out the night. Her IV swelled so they took that out this morning. I am horrified that they will have to put in another one. But, so far she has kept down her breakfast!:D Good news. Now that the IV is out she won't have any pain meds. So, off to another exciting day in the hospital.

Thanks so much for the prayers, I appreciate them. Keep your fingers crossed that we can go home. :D

Love Sandy

Sandy, Stay strong and take care of you. I know this is hard when your baby is ill, but she needs you well to. I am glad that Lindsey is doing better, and hope that they do not need another IV. I am sure that you are holding your breath to see how today goes. Prayers to both of you and take care, Lisa

WE ARE HOME! I am so relieved. Thank you all for your support while we were there. I love you all!

Sandy

Amen!
 

AWESOME NEWS!!!! Try to relax and rest... hospital stays are certainly not restful..so nice to read this experience is behind you and Lindsey, continue to do well....we will keep you in our thoughts and prayers...while you both enjoy being home... We are pulling for you..

love, Kathy:grouphug::grouphug::grouphug:

So happy for Lindsay, yourself and your whole family. I will keep her in my prays. I'm doing a lot of praying these days. My husdand and I are dealing with his mom who is very sick with cancer. Again best of luck and please keep us posted.

Gabbycakes

We all know the food will be much better at home than it was at the hospital !

All my best to you and Lindsay. I hate that she has to deal with RSD at such a young age, but I am happy for her that she has such an AWESOME support system.

God Bless both of you :hug:

For You And Lindsay
 

Sorry to have read your post late, but God is always on time. It is 6am and I just talked to God about Lindsay. I'm a mom myself, and it is hard to watch our children suffer, so this is also for you.
Sandy, you have been her voice, her eyes, and her ears. I pray that Lord Jesus sends you a comforter as well. And that the Lord keeps restoring your strength so that you will be able to continue to speak, see, and hear His words to say to these people in the medical world. It is evident that He touched someone's heart, and that person said, "ENOUGH IS ENOUGH admit Lindsay!" It is evident that angels are with her, when you said that Lindsay experienced heart-filled laughter.

Sandy, keep thanking to the Lord for all the little things so they can grow into big ones. Together :grouphug: we will continue to keep you, and Lindsay in our prayers.

Hi lefty,

Thank you so much, you made me cry...I guess we as moms actually grieve when our children are sick. I trust in the lord, I know for what ever reason this is happening it is making us stronger. But, I don't understand, there are days that my faith is tested. But I know that he is with me. I hate that she is suffering, I want to take it from her. I would live my life with this pain if he would just take it from her and give it to me. You don't know how many times I have prayed for just that.

But, on a good note, she was able to get out today. Her big sissy came home from college last night, so that I could return to work. They went to target and are running some errands. She took the ambian cr last night and was able to sleep for 4 hours. She got up early but went and took a nap.

Thank you for your beautiful post. You have no idea how much all of you mean to me.

love Sandy