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.

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

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

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! 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.

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