Update on Ani’s Health

It’s been almost four months since we started getting diagnoses for Ani. At that point, she was sleeping up to 18 hours a day and worn out all the time. She was so incredibly sick.

What’s wrong with her: Ani has Ehlers-Danlos Syndrome, POTS, Fibromyalgia, and Celiac Disease.

What we’re doing to treat her: Every day Ani takes a beta blocker to help control the racing heart from the POTS. She did an experiment trying various POTS remedies and found that Nuun electrolyte tablets work best for her. She takes one in the morning and one in the evening now. She takes Lyrica for the Fibro pain. Recently she had to up her dose because the drilling pain that she now knows is from the fibro started up again. Hopefully, we’ll be able to decrease it back down in a couple weeks. She is careful with her range of motion to avoid EDS pain and, of course, she eats no gluten so the Celiac is usually a non-issue. She has been going to physical therapy for her neck (side effect of the EDS) and that pain has decreased a whole lot, enough that she no longer takes Aleve regularly. She is getting better at watching her body temperature (she has trouble regulating her body temperature because of the general dysautonomia that includes the POTS).

So how is she doing?

Amazing.

She’s still so incredibly sick, but when I think of how my daughter was just a few short months ago, the difference is incredible and so encouraging. I’ll be honest. I did not think she would survive. She was getting worse and worse. I thought she was going to die. She thought she was going to die. It was bad.

In March, a friend asked if they could dedicate their monthly fast to Ani’s health. Her whole family fasted for Ani. She encouraged others to do the same. I will always believe that changed everything for my daughter. It was within days that we started getting answers. We found doctors willing to help instead of brushing her off. We got medication, we got a treatment plan to help her, we got diagnoses.

She still has bad days. Some are very, very bad. On the Fourth of July, we had a church picnic. It was hot. We live in Texas, after all. She got overheated. Getting overheated means she got sick. Very sick. She slept most of the afternoon/evening that day. The big difference is, though, that the next morning she got up and was functional. She didn’t need three days to recover. That is a miracle. She still gets exhausted relatively easily, too, and she never feels truly good. But it’s livable.

Over the last week, she spent several days being a substitute nanny for three little girls and still did her normal program directing at taekwondo and also babysat a little girl Friday night. These are things she literally couldn’t have done just a few months ago (though I think she might sleep most of today since she was so exhausted by last night). She’s got plans to go see Spider-Man with one friend and Wonder Woman with some other friends. She’s training at taekwondo and working toward her second degree black belt again. She’s actually being able to be a human. Most importantly, she has hope for a future. A sometimes painful, taking medication for life future, but still a wonderful, full, happy future.

Physical Therapy

Yesterday Ani started at least a month of physical therapy 2-3 days a week. Her therapist is experienced with people with Ehlers-Danlos (really important to prevent further injury). Her neck issues appear to all be totally related to the EDS.

Physical Therapy

When she moves her neck, her vertebrae don’t work together, but instead twist in opposite directions. This equals pain. Her front neck muscles are much weaker than her back neck muscles. This equals pain. She has craniocervical instability. This equals pain. So much pain. Doctors laughed at her for saying her neck felt too weak to hold up her head. Well, the physical therapist isn’t laughing. Ani was right about that all along!

Physical Therapy

The goal of the physical therapy and (so many) exercises she has to do in between visits is to strengthen her neck and retrain the muscles to keep her vertebrae in alignment and moving properly together. The ultimate goal is to get her back on the mat training at taekwondo. For now, though, after her first two visits, her neck is really hurting. We are hopeful that in a few weeks it’ll be much better (me more than Ani to be honest – she’s pretty much resigned to being in horrible pain for the rest of her life).

We Have Some Diagnoses!

We already knew Ani had Celiac Disease and insomnia. She was diagnosed with POTS last month. We finally got a copy of her upright MRI report. It was not good. She does not have Chiari, but she does have a totally jacked up neck. She has mild straightening of the neck, a 2mm subluxation at C4, multiple herniations C4-7, and narrowing of the cerebrospinal fluid space.

Yesterday she saw her rheumatologist. He is a soft-spoken, kind man. He read her MRI report and looked at her and said, “You are in pain.” He sympathized with what she has been through and promised he will help her get well.

So he added two more diagnoses. She has Ehlers-Danlos. It is likely many people in our family – including me – have it mildly. She’s having a lot of pain because of it because her joints are constantly going out of place. Her hips and shoulders are misbehaving the most lately. For that, she is to continue taking Aleve and use wraps, K-T tape, etc. She is also to do isometric exercises to help “teach” her muscles where to stop rather than allowing them to keep going as far as the joints will let them.

She also has fibromyalgia. For that, he prescribed Lyrica and wants her to do some gentle exercising every day. One day she’ll get back to training at taekwondo, but we need to fix her neck first. It makes sense that the Aleve was helping some, but not everything. Her fibro pain isn’t from inflammation so the Aleve was only good for the EDS pain and possibly her neck pain.

He said she really needs to get deeper sleep. We have noticed that when her pain is high she can’t sleep but when she can’t sleep her pain gets worse. It’s a vicious cycle. When her pain is really high she ends up with muscle twitching. So to help with the sleep, she is to take Benadryl every night. It is the only thing that will reliably knock her out. Melatonin doesn’t work for her and we tried Aleve PM and while it made her tired, she still sat staring at the ceiling until well past midnight every night.

On Tuesday she will be seeing the neurosurgeon to decide what to do about her neck. This has been a long, hard road to diagnosis. It is such a relief to finally be making concrete plans for helping her to live a normal life with limited pain.