Tiffany's dealing with Raynaud's and Complex Regional Pain Syndrome Updated 3/4/15 Tiffany went to The Children's Institute of Pittsburgh for 2 weeks. She did really well with their program and helped with a home program but nothing helps her Raynaud's flare ups.
On January 16, 2012 Tiffany sent us a message with a picture showing her toes were almost purple. We thought what in the world that looks like frostbite. We left work and rushed home to take her to Urgent Care. As soon as the doctor came in he knew it wasn't frost bite. He said it was Raynaud's.... What in the world is Raynaud's?! They wanted us to get with a doctor down in Fairfax to do blood work to for sure rule it as Raynaud's.
Unsure on what's going on we go forward and get blood work done. Meet up with "Dr. A" a Pediatric Rheumatology. She proceeds to tell us that Tiffany has Primary Raynaud's. And there's some cream to help circulate her blood flow but there isn't much we can do with Raynaud's besides keep her bundled up and warm.
(At this time Tiffany is only 12 years old)
Fast Forward to 2014... (We had a few days worth of flare ups throughout these years but for the most parts the cream helped some and she tried staying warm when the temperatures were low and Raynaud's would flare up.)
January 26, 2014 Cliff sent me a text saying Tiffany's toes looked really swollen and we needed to get her to the ER to see what's going on. It looked as if her toes could fall off. I told them at work I needed to go we're rushing our daughter to the ER.
We left and the ER didn't really know what to do besides give her a very HIGH dose of pain medicine... This flare up had been going for about 2 weeks but seemed like the color and pain from being swollen just kept getting worse and worse..
January 27th Tiffany sent me a text saying she can't handle the pain any more to please come and get her. I told work again I had to go get her. As I was leaving I called Cliff and told him you can't even touch her without her almost screaming in pain. He rushed home and we were clueless on where to go? Who to take her to? So, he decided we'll take her to Children's National Hospital in DC.
At Children's in DC they knew this was a EXTREME case of Raynaud's but they haven't seen it like this in someone her age and this acute either. They done A LOT of blood work and done a Ultra Sound of her legs to make sure she didn't have any blood clots. After about 9-10 hours of being at Children's in DC they sent her home with a very high dose of pain medicines again.
January 29th after being home a few days her toes just turn worse and worse in color and start to get blisters on them. Something is going on!
OK what do we do now? No one seems to know what to do or how to help her. She's to the point that to hurts to put socks on or have them being touched. Heaven help this poor girl. Cliff decides that we take her to a different Children's hospital. So we take her to Inova Children's Hospital in Fairfax, VA.
Gave them all the rundown of what we've been through and where we've been and just told them we don't know what to do for her.. After about an hour of being there they told us they were admitting her. (This kid has never had to stay in the hospital since birth.. And at the age of 14 she's got her first admission)after a few days of being in the hospital we finally got discharged. Only to end right back in the hospital several hours later for straight admission back. Her sensitivity got so extreme you couldn't touch her without screaming. No socks, shoes, covers or anything. She was in extreme pain. So, come to find out she now has Pernio and Raynaud's. The pernio blisters turned worse and pain more intense. Goodness seeing your daughter lay in pain crying because nothing gave her relief.
If they gave her pain medicines all she would do is sleep. After a few days of being in the hospital again we were released. Only to have a day at home and she couldn't stand. Oh heavens what now? She couldn't apply any pressure on her feet, she couldn't walk. Cliff had to help carry her for everything almost... Yes, this wasn't right so we took her back to the hospital. Seeing your 14 year old daughter laying there in so much pain not being able to do anything but scream from the pain and your watching feeling so helpless is one of the WORST feelings ever!
After the days kept getting worse Tiffany couldn't even stand now. She lost all control of standing, moving, everything. They had to bring my 14 year old daughter a WALKER (like a elderly person uses). My heart drops... The huge team of doctors we had looking over this couldn't believe all this was going on. So now it's time for some deeper testing... MRI.. After doing one test they pull me to the side. At this point I'm at the hospital my husband is back at home trying to spend a little time with our other kids, plus work, plus take care of the 29" of snow we just got! ..(While my daughter is in the hospital I get a call from work..Kim when are you coming in? umm I don't know my daughter's still in hospital and I don't know what's going to happen. Well we need to know when you're coming in if not I'll have to send you a letter letting you know we have to let you go... I tell them I'll call them back I needed to talk to Cliff. We talked and I'm upset. I have never been fired but my kids will ALWAYS come first. I call them back and tell them you'll just have to send me a letter because she's in here and my priority...) Now, I'm fired! Like my nerves can handle this too?
Hours later they get the MRI done, no word on what the results were. The next day Tiffany is finally asleep and the nurse comes in and tells me to please come out into this other room the doctors wanted to talk to me. My nerves are getting to me. What is it ? What could it be? Do they finally have us answers on what's going on with our daughter? They tell me they wanted to do another MRI. They said they don't believe it's this but they wanted to rule out everything on the bottom of the list. I said ok but what will this MRI show, what's going to be different? Mrs. Carswell I hear.. We want rule out brain cancer. (Yea, I lost it) I started shaking and almost dropped to my knees. I had to stand against a table and try to understand what they are saying and I just keep repeating I need to call my husband.
I walk out of the room and slowly try going into Tiffany's room without waking her but wanting to grab her so tightly. I get my phone and sayto the nurse, would you mind if I step back in there to speak with my husband without waking Tiffany up. I tell Cliff, "honey don't panic but I need to talk to you without getting the other kids upset. OK, Kim what is it? Cliff, they are going to do another MRI on Tiffany to rule out cancer. YOU don't have to come, I'll keep you posted. Stay with the kids there's too much snow outside." Knowing while I'm telling him this, no way was he not going to be there for her, he was coming. I get off the phone with him and walk back to Tiffany's room. Before I knew it Cliff's calling me telling me he's pulling in and he'll be there in a minute have they took her back yet. (Let me say on a normal driving back and forth day one day to the hospital is an hour and a half) .. This man has to be exhausted too. But he was there for his daughter. After hours of waiting and worrying and thousands of what ifs running through our heads here come the doctors. Tiffany ... DOES NOT have cancer. THANK GOD! They come to the conclusion she has COMPLEX REGIONAL PAIN SYNDROME... Meaning her body has so much pain from the Raynaud's and Pernio, it's shooting a signal up her brain but shorting out throughout her body making more pain signals hit all over her body...
Next steps very intense DESENSATIZING her body. Making her body feel like these touches, feelings, and things touching her are ok. These aren't to hurt her. They spoke a few times about possibly getting us into CHOP's (Children's Hospital of Philadelphia) . Finally after a few days we have Tiffany up walking with crutches.. THANK GOODNESS!
Finally she's mobile again..After a LOT of medicines and what to do about rubbing her and getting her use to certain feelings..The next day we get to go home AGAIN!
After being home for a day and trying to deal with the pain and seeing your daughter lay there and not being able to move my husband had to 9-1-1. We couldn't get Tiffany up. She couldn't apply pressure to her legs, touching her to help her try to get up she'd just SCREAM. They came out and loaded her up and we head back to our local hospital.
Someone please help her was all we were wanting. Seeing my other 2 kids laying in the corner crying over their sister hurting so bad just kills you. Now we go back to the hospital only for them to see we're doing everything we can but they understand we can't let her lay there screaming crying. They give her more pain medicines just to take the edge off.
Cliff decided then.. OK we've been to all these ER's, hospitals, and seen all these doctors our next step is to make the drive to Johns Hopkins. After being discharged we came home packed a bag and headed to Balitmore, MD. Getting there we're about an hour into it to see yes they were admitting her. The doctors done reflex tests on Tiffany and her legs and body would just shake. Nothing like they've seen before. The doctor steps out and comes back with a camera asking me to record this for him so he could take it and show the other doctors what's going on.
More MRI's, spinal tap, and a lot of blood work later the doctors come in. All test are showing negative.. What is going on then? Why is she going through all this? Next day as Tiffany and I are sitting in her room we had 17 doctors come into the room. They all gathered around us and said pretty much everything else we've heard. We're taking her off these medicines, putting her on these medicines, and keep desensitizing. The main doctor looks at us and tells us, "I'm sorry we don't say this often but we don't know why she's in pain like she is" .. Then tells her, she's going to have to "deal with it" and we'll be released today.
What huh? What is going on? You know she just had a screaming episode that night to where your nurses couldn't even touch her but you're sending her home? This is suppose to be THE BEST HOSPITAL IN THE COUNTRY?
I call Cliff at work and tell him they are discharging us.. He doesn't understand either. As we wait for Cliff, they send us downstairs to try p/t on Tiffany but in a way they have never done before..
Cliff gets to the hospital and we have a small meeting with some doctors so they can explain this mess to him too.. We head home with a plan to start Tiffany at our local p/t and just keep doing what we're doing.
Get her home and swing by the p/t and get her scheduled.. The p/t thinks aquatic therapy would be best for Tiffany.
After a few times with our wonderful p/t Tiffany still has bad flare ups. It's Complex Regional Pain Syndrome and they know how to deal with this. Come back home and finish what we can do around here. Days where Tiffany's screaming in pain and can't walk. Some decent days. IF you ask Tiffany what's her pain from a 1-10 she will tell you, she's always hurting it just depends on where it hurts at the time.
So this is Tiffany's story. We battle Tiffany being in pain daily. Days to where she doesn't or can't hardly stand. Humped over. Fingers swollen, feet turning colors. Now we're playing the waiting games. Not only do we have these bills rolling in but now we're going to have to play the waiting game and pray CHOP's can get her in there as soon as they can. All of this is very overwhelming to not only Tiffany but also to myself, my husband Cliff, and our other 2 kids (Coty and Hailey)..
These all last pictures are as of this week the end of April beginning of May 2014.
Thank you ALL for taking the time to read Tiffany's story. And helping us with this battle we're facing.
Updated Oct 1,2014
This is during desensitization.. She's crying while doing it.
*Tiffany page link on facebook *
Tiffany's Fight Against CRPS
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