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.