Thursday, October 03, 2019

Well we’re all zebras. Now what?

So while all of this Ehlers Danlos talk is going on, the older kiddo is having a huge amount of medical issues. She’s got allergists in 2 counties. We’re at the emergency department so much that the doctors and nurses remember us. You do not want to be the parent that walks into the ED and the nurse running triage says to your kid “I remember you. Did you have to epi again?” You don’t want to be the parent who is terrified  every time you see the school on the caller ID  because there’s a good chance they called 911 again for your kiddo. So that’s going poorly. We just can’t figure it out. Allergic reactions. Low BP. Fainting. That leads to steroids. Epipens. Meds and more meds. Elimination diets. Allergy testing. (It was all positive. ) What is going on? Someone mentioned the trifecta. EDS, MCAS and POTS. I googled. Some of it fit. Some of it didn’t. We saw a cardiologist. He said POTS wasn’t a real thing. She was fine. Allergist suspected MCAS (weird condition where you have allergic reactions to things you’re not allergic to) plus new food allergies and oral allergy syndrome. Mcas is hard to test for. So that was a maybe.

Anyway this was all going on when the younger one saw genetics. It was a long appointment. We met with a genetic counselor. We saw a geneticist. Family history. Diagnostic criteria. He was diagnosed with EDS. Off the record i was told i have it as well. The doctor looked at this huge bruise i had across my whole forearm. “What happened?” “Oh. I got an IV.” “Uh huh. We know where he gets it from. “   (Bruising and poor sound healing are also part of this condition. )They wanted me to come back for my own appointment and bring back any other children I have. Within a month we were all diagnosed. Older one was the least bendy. But they talked about comorbidities. Like POTS. And how she seemed to have all the comorbidities.

Wednesday, November 07, 2018

When you hear hoof beats...

So. I mentioned it to my doctor. She didn’t even know what it was. She didn’t think it was a possibility. Around this time the little kiddo dislocated his shoulder. He was goofing off and rolled off the couch. He stood up and his shoulder was pointing the wrong way. I expected him to start screaming. Instead he just braced and kind of pushed it back in. I wasn’t sure what to do. Dislocations hurt. And people don’t generally just put them back and it’s not big deal. He did complain a little of pain and he was a little swollen but he was moving and not complaining  much and pain went away with Ibuprophen so we didn’t do much.

At this point I’m reading more about EDS and joint  hyper mobility and learning that you can damage your joints  doing this stuff. So i made an appointment with Little kiddos doctor. I thought she’d tell him to stop bending everything. Instead she said. Oh. Ehlers Danlos. We’ll send you to genetics.

Wednesday, October 24, 2018


Ever since I was a little kid I’ve been clumsy. I tripped on thin air. I fell. A lot. I rarely broke things but I sprained everything. I was always covered in bruises. In all honesty I’m surprised no one ever called the cops on my mom thinking she’s abused us.  I was always bendy, double jointed. I remember my friend making me take  off my shoe to show other kids the weird tricks I could do with my toes. Apparently I’ve since learned I was dislocating and subluxing joints. Oops. 

Now in my late 30’s I’m in pain. Like a lot of pain. I’m tired. Everything hurts. So my doctor ordered a bunch of tests. I had heightened levels of inflammation but not lupus or rheumatoid arthritis. No celiacs disease. My doc was kind of stumped. She said I could have something else or one of the rarer things that didn’t show up in tests. 

Then A broke her leg. Walking on a flat surface. She didn’t fall it just popped. The doc at urgent care who diagnosed her was kind of freaking out that she just broke. She mentioned all sorts of random things. Osteo imperfecta. Ehlers danlos syndrome etc. she made me promise to follow up with the ped or ortho  or whoever and find out why. The ortho wasn’t concerned. He mentioned that he sees random stuff like this after a growth spurt sometimes. The end of the bone is brittle and pops.  But then I was talking to one of her doctors about something allergy related and Ehlers Danlos came up again. 

So I consulted DR Google. (Hey. Kiddos doc has approved my dr googling. He said there are great resources just be careful and don’t make huge changes based on dr google without consulting first. Ha. ) anyway as I was reading about EDS a lightbulb went off in my head. Besides two different doctors mentioning it, it fit me (and half my family) to a tee. Like a lot. 


Monday, October 22, 2018

We’ve come so far...

We’ve come so far and learned so much. And seen so many medical professionals.
We’re still not sure what’s going on with Kiddo. She’s been diagnosed with orthostatic hypotension. (Low BP. )And it’s worse when she stands. Her pulse shoots up. She may have something called POTs. Positional orthostatic tachycardia syndrome. When she stands up her pulse goes super high. Little kiddo and i were both diagnosed with a rare genetic condition. It explains so much. Big A sees the geneticist tomorrow. We’ll find out if she has it too. I expect she does. Sorry kids. Apparently my genes suck.

Friday, March 30, 2018

I don’t feel strong.

Someone posted this video on Facebook and it made me cry. I don’t want to be in this
club.  No mom wants to be in the “sick kids” club.

As of today.

16- the number  of foods she tested positive for on allergy tests.
7- the amount of times she’s injected herself with an epipen. (It hurts. Her thigh is covered in bruises. )
6- the number of daily prescription medications she’s currently taking.
3- the number of times her school has called 911 for her.
2-3 the amount of times I generally speak to her doctor each week.
1 the number of times she was given epinephrine in the allergy department.

I hold it together and stay strong when she’s with me. But when I’m at home. And I see the school on my caller ID and they say she  just took her epipen. Someone is  on the phone with 911 right now, I lose it. I cry all the way to school.

The first time the paramedics  came she was doing great when I got there.  (Thanks to the epipens and paramedics.)  I thought I had it together.  and then I saw the fire truck. The ambulance. The principal outside waiting for me. The firemen and paramedics surrounding her and I wasn’t as calm.  She hugged me. She comforted me. Every other time I’ve got it together before I get out of the car. She’s stressed enough. She doesn’t need to worry about me too.


Wednesday, March 21, 2018

Illness sucks.

Dear universe. I do not want to go to Kaiser tomorrow.  Like. At all. I went twice tonight. And had a phone appointment. I think I’ve been there at least once or twice every day this week. The pharmacy and lab people as well as ER nurses are starting to remember us. I know the doctors schedule and which office she’s calling from by the caller ID. She doesn’t even announce herself when she calls. I know her voice.  I’d just like one day off please. And no phone calls that the school called 911 again either. KThanksBye. #IshouldHaveMyOwnParkingSpot or they should have a frequent visitor program with the valet? Maybe a punch card? #SoNotFunnyThatItsFunny