Desensitization Physical Therapy and Cognitive Behavioral Therapy

Both therapies have started.

DPT has been going good. Blood pressure seems low but when she starts exercising it goes down.  Lily likes the therapist, but she is leaving on maternity leave so starting Friday she will be seeing someone else.  Hopefully she likes her too.

CBT is another story.  She didn't get a good feeling from the therapist the first time she went.  I told her she needed to go at least two more times to feel her out more, and if she still doesn't feel comfortable with her then we can look for a new one.

Her symptoms seem to be getting a little better.  She's been drinking a bit more water, and her salt intake is a little higher.  I ordered some saltsticks vitassium, so when that comes that salt intake will go way up.

She hasn't had as many stomach issues either. She wasn't able to eat for a while.  She'd be hungry, sit down and eat 2 bites and she'd be full.  Then an hour later she's sick and puking.  Hasn't happened in a bit.  So happy for that.

New PCP, Dec. 18

A friend of ours recommended seeing a new PCP.  She said his oldest son has POTS, so he knows a lot about autonomic issues.  Turns out he used to be our family doctor for about 14 years, then he moved out of town.  He's back at a different clinic now.  So happy!

He walked in to the appointment and said it was nice to see familiar faces.  He had already read about Lily's issues, which was impressive, as most other doctors we've had to retell her story over and over again.  We decided to increase her Zoloft, as she was on the minimum.  He doesn't want her on another medication yet so we can watch for any issues with the Zoloft. 

He agreed that she needed to increase her water and sodium intake.  The supplements she is on are good.  He doesn't want her taking too much tylenol or ibuprofen, as those can result in rebound migraine's.

Lily loved him, and she hasn't liked any doctors lately.  He wants to see her after her appointment with the electrophysicist/cardiologist in February. He said he has a vested interest in Lily's case as she's like his son.  That was a good thing to hear from him.

Pediatric Rheumatologist appointment, Dec 6 2017

She did not like th appointment or the doc and said he was no help. I disagree. He was pretty good;  thorough, kind, and explained things well.

So today she was diagnosed with patellofemoral pain syndrome (just like I have), wide-range CRPS, Autonomic dysfunction, slight hypermobility that might lead to a diagnosis of Ehlers-Danlos Syndrome, and Allodynia. She was already diagnosed last year with hyper-reflexes, Ataxia, and Arteriovenous Malformation of the spine. Probability of POTS as well.

I wrote a little note on the symptoms form asking him if he could check to see if she has anxiety and/or depression, but to please not let her know I felt she does and asked. She was also dx'd with anxiety and depression. She agreed to seeing a therapist...yay!

Treatment for right now will consist of Zoloft, seeing a Cognitive Behavioral Therapist, and Desensitization Physical Therapy.

11/10 Ped. Neuro appt and 11/29 referral

We finally got in to see the ped neuro, over a month after she was dx'd with CRPS by the ER doc and her primary doc.

He wasn't as helpful as we had  hoped.  He checked her out, checked her reflexes, and said that since she doesn't have burning pain every time someone touches her, that there is no way she has CRPS.  He things she has Erythromelalgia.  I don't think she has that.  I truly believe she has CRPS, and possibly POTS or EDS.

He referred her to pediatric rheumatologist Keim, who he thinks will be retiring soon.  We needed to wait for him to get the referral to him, and then his office will call with an appointment.


On 11/14 I called the rheum office and they told me it would be about a week once they received the referral before they can authorize the appointment.

I called the rheum office on 11/15 morning as I still hadn't heard anything from them. Apparently they never received the referral!! So I made some calls and the neuro office said all the information is in the EPIC system and the rheum should have had all the info. I found out this rheum REQUIRES the referral and medical notes to be on PAPER, and he refuses to look at anything electronically. If that's the case they should let those people who are referring to do it this way. Now we've waited over 2 weeks, and need to wait longer for the rheum to authorize the appointment.

Meanwhile she is in pain, having migraines, along with dizziness and breathing issues, and no doctor will treat her with anything!!

On 11/27 I called the Rheum again.  They STILL hadn't gotten all the paperwork!  Mama bear took over and I yelled at them.  Told them this was unacceptable and they needed to get their acts together.  This was later in the afternoon.  On 11/29 I called early in the morning.  They still hadn't gotten anything!  I was fuming.  I guess the squeaky wheel gets the oil.  About an hour later, I got a call from the ped rheum office.  She said the new ped rheum looked over what they had, and he agreed to take her.  The one our ped neuro referred us to is retiring, so he is taking over.  They are working on the case together..  Appointment is scheduled for 8 am on 12/6 and is scheduled to last at least 2 hours.  She needs to drink a lot of water so it will be easier to take blood.

10/9 DRIVING!!??!?!

She did it!!  She is now a licensed driver!  It's challenging for her as she is color blind, but she works through it very well.

With all her health issues, this is definitely going to help her mentally. She has more freedom now, as long as there is a van free for her to use.  Lol.

Pain

CRPS awareness ribbon.

Lily asked me yesterday if the pain from CRPS is in just one place, or if it can be anywhere.  I explained that it can be anywhere. 

Most of her pain right now is in her hips, but that could be from dancing all night at hoco17.  She has had pain in her right arm and wrist.  Usually it's in her arms, but once in a while she feels it in her legs.

It's hard to explain to her that this is going to come and go, and it can affect any part of her body.  This is going to be a lifelong fight for her, and she may go in to remission for years, or have pain for a long time.  Still figuring out medication, and waiting for more answers at her pediatric neurologist appointment in November.

New issue and diagnosis 9/21 and 10/3

On 9/21, Lily texted that her elbow was hurting.  10 minutes later I got a phone call from the high school nurse regarding her.  The elbow to wrist was in pain and cold to the touch. Her elbow was locked and it was painful to try and open it. She felt numbness in different areas.  Her fingers would freeze in place at certain times as well.  I took ibuprofen in to school to see how that would help.

Unfortunately an hour later I got a call again from the nurse.  She said her pain went up in to her shoulder now, and it was getting worse.  So I decided to take her to the Shawano ER.  Big mistake.

Lily is petrified of needles.  The er doc thought she had a blood clot in her arm.  They did an ultrasound with nothing.  So he wanted to do a contrasting MRI.  That required an IV.  I told the nurse she was petrified of needles and would have a hard time getting an IV in. She tried anyway, but Lily just couldn't handle it.  SO she went out and got the doc.  He came in and yelled at Lily.  Said

  "You are 16 almost 17!  You're nearly an adult!  What are you going to

do in the future when you have this issue?  You're young yet

and are going to have many times where you will need to deal with

needles.  Get a handle on it!  If we can't get the IV in, then we

can't do the MRI.  There's nothing else we can do for you if we can't

get that MRI.  I am here from Appleton ThedaClark so 

I'm not normally here.  I am the only doctor here and we only have limited staff.  

We don't have enough staff to deal with you.  I guess we'll just have 

to discharge you, and if you lose an arm, then oh well."

Seriously??!!?!  That is not something you say to any patient, let alone a TEENAGER!!!  I talked it over with Lily and we decided to try it once more.  The doc got the anesthesiologist and the ultrasound machine to find her veins and make the pain less. They gave her an Atavan.  Doc used needle to freeze area he was going to put IV in.  Lily screamed for that.  2 minutes later, the anesthesiologist started to put the IV in.  Lily was screaming. He kept digging and couldn't get the needle in the vein.  All this time she was screaming, and ended up having a panic attack. She was just shaking and screaming, and couldn't control it.  This went on for 20 minutes. Anesthiologist was yelling at her the whole time that there was no way it hurt that much.  Well I was watching. He'd pull the needle out of the sleeve and her arm, then stick it back in harshly.  Each time he did that, she jumped and screamed.  She wasn't looking, so I know it was hurting her.

At the 25 minute mark, the anesthesiologist yelled:

"I can't do this any more!  She won't hold still and I can't get it in.  I can't do it

but someone else can if they want!"

As he was yelling, he RIPPED out the IV needle that was in her arm and left the room.  He didn't clean or bandage her elbow!!  The lab tech that was waiting to draw blood ended up cleaning it (she was never able to draw blood though). She apologized as I started crying as well.

A few minutes later the doctor came in and said they couldn't do any more and she would be discharged.  I asked why the IV HAD to be inside the elbow, and he said that's where it needs to be for the MRI.  So he wouldn't even try it where her veins were stronger.  The nurse came in with the papers, and I asked who I would speak to regarding an issue.  She brought in the hospital supervisor and we talked.  I told her everything and we weren't happy. Then the doctor came in and said (AFTER we were discharged):

"Well, I did check her pulses and felt her arm.  Her pulses 

were steady and her arm was beginning to gain it's color back,

and it was no longer cold to the touch."

I found out later that he wrote that information in her file AFTER we left.  

Because of the numbess, a friend called and really pushed to take her to a different ER.  I had already called one and let them know what was going on.  We went to Bellin in Green Bay.  Because Lily is younger than 18, she was seen in the pediatric ER by a pediatric doctor.  They checked with Shawano ER, and that is when I found out he put the information about her pulses, color, and temp in her file after we left.

What a difference! The staff was super friendly!  The doc was awesome. They were able to get some blood.  She was able to go on her phone for a distraction. They used the littlest needle and prepped her arm before taking blood. They warned her when they were going to insert the needle.  She took a deep breath and they were able to take blood.  Well, until it stopped flowing.  Since they didn't have enough blood for 2 full vials, they went in the other arm. Again, same reaction.  After they left, Lily looked at me and said she never wants to go back to Shawano, and Bellin is how every patient should be treated.

Her bloodwork for clotting came back good, and her CBC showed no issues.  They sent out for testing of Rheumatoid diseases, but those also came back as negative.  The ER ped felt she has CRPS/RSD (Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy).  Back in 2015, Lily's physical therapist said she had it; however, he was unable to diagnose.  

2 years later we finally have another diagnosis.  Lily had an appointment with our family doctor this past week, and he confirmed her diagnosis.  She was put on the lowest dose of Zoloft to help.  Praying it does.  She also sees her pediatric neurologist in November.

Here's to more answers.

Surgery and a year later 8/22

Pins, view from inside foot

One month after surgery.

Before surgery

All done and wrapped up. 
Unable to take it off for a week.

Pins, view from top

Pins, view from outside foot

Well, it's been just over a year since I've updated this, and a lot has happened.

Lily had surgery on 9/7/16 in Green Bay at Aurora on the east side, with Dr. Limoni.  It went very well for Lily.  She ended up having parts of her bone from the outside of her foot removed and pinned to the inside part of her foot.  Her heel was removed, shaved  a bit, and then attached back on in a different position.  It took about 2.5 hours.  Wake up was hard for Lily, but we finally got to go home about 4 hours after surgery was done.

For several months, Lily complained of pain where some of her hardware was.  We went to see Limoni, and he agreed to remove the troublesome hardware.  On 8/22/17, she had 4 pins and 2 plates removed from the inside of her foot and the top of her foot.  No pain since!  And yes, I did keep the hardware, even though Lily won't even look at it.

Lily tends to feel her hardware when the weather changes. But other than that, her foot is doing great. No pain, and the distortion of the foot seems to be much better.