Category Archives: EDS

Hip hip hooray?

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I don’t think I have mentioned my own issue on here yet, and I need to do that. Because Belinda was diagnosed with Ehlers-Danlos, I was told that I probably had the same thing. Turns out I do, and I was officially diagnosed on April 17 with my internist, Bernadette Miller. She listened to me talk about the hip problems that I’ve had for probably 20 years. She sent me for an MRI on both hips and I had that on May 13. So on August 4, Belinda and I had appointments, but with the delivery of the bed to Alva and our birthdays and all the other stuff we had to do last week, we ended up requesting a virtual visit.

I now know that I have bilateral labral tears and fraying on both hips, although the right sounded worse when she described it. My chart says it is a Degenerative tear of acetabular labrum of the left hip and of the right hip, although they are not actually degenerative because it happened long ago and has just continued to give me trouble. She said it is a result of the Ehlers-Danlos tissue disorder. That makes sense, as it is a rare disease and no one could figure out what the problem was for so long. Anyway, she has sent an ambulatory referral to Orthopedic Surgery and an ambulatory referral to Physical Therapy. She said the surgeon might decide I need surgery but might also allow me to try PT and alternate therapies first. I have never had a real surgery and I am not thrilled with that idea. But a little while after she told me, I realized that surgery might mean that I would not hurt anymore, which sounds impossible because I’ve hurt for so, so long. But I also wonder if it would just tear again later, since it’s not like I’m going to stop having Ehlers-Danlos. It’s something to think about. I have not received a call from the Orthopedic Surgeon yet to schedule, so I think I’m supposed to call about that. I guess I’ll add that to the tomorrow list, and also appointments with the internist for us in November. And get the banking stuff to Mercy Medical Angels because I keep putting that off!

Having a rare disease is not for wimps!

Here’s a link that I’m going to look at later, when my stomach is ready to prepare for gross pictures of the insides of people.

Hip Problems and Ehlers-Danlos Syndrome

December procedure

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Belinda’s next procedure is set for December 17 in DC. I really wanted Belinda to go in September so we could be at the Pediatric Achalasia Awareness Night, but Belinda was adamant that she did not want to miss a single second of her first semester at Northwestern. The couldn’t do fall break or Thanksgiving break, so we set it for Christmas break.

Since Belinda is on Soonercare, she has to get special authorization to travel out of state for her procedure. On paper the procedure is something that can be here in Oklahoma – but we and the doctors believe she needs to have it with the specialists who have been treating her. The other thing is that these specialists are the only pediatric surgeons doing POEM, but she will be 18 in December, and although she’ll still be on Soonercare, I don’t know if they will take the pediatric part into consideration since she’ll be an adult. I wish we could just do the procedure in August before her birthday and get it over with! Anyway, a lady at the hospital will be working with Soonercare and Belinda’s doctor to get it approved. That’s another thing – Belinda will no longer be with the pediatrician that’s treated her since birth by the time the procedure comes around. But she will be with my doctor, and she is wonderful so I believe it will all be fine.

Anyway, even if it doesn’t happen, I still believe God is in control. And maybe Ben will have a job with benefits then and it will all be different anyway. There’s no point in worrying, even if my mind does think about these things.

I do need to focus on what I can work on, like figuring out if we can get assistance again from NORD for lodging and travel in DC. We may have to work on something new since her grant is for pediatric gi rare diseases, and she won’t be pediatric anymore. Hopefully it will just count through the rest of the year. We also need to contact Mercy Medical Angels. Again, since she will be an adult now, they might not be able to help with both of our flights. But we’ll cross that bridge when we get there.

In other news, the durable medical equipment company called we discussed Belinda’s adjustable bed. They asked if they could bring it Thursday, but I reminded them it was for her dorm room. Next week the college will start assigning rooms, and when we know the room, we will see when we can meet in Alva and get the bed set up. They said the mattress wasn’t very comfortable, but I think we’ll just have to see what it is like and then get something different if we need to. Probably we could try to get a better mattress or topper through Soonercare because of the Ehlers-Danlos…but if we can swing it on our own, I’m just going to do it that way. Less stress for Belinda.

Financially we had a bit of a setback because our propane tank had a leak and we lost about 500 dollars worth of propane over the course of two weeks. We didn’t realize until we ran out. Right now we don’t have hot water but it’s not the end of the world. Ben is planning to fix the pipe. But we also owe around 800 to the propane company and it has to be paid before we can get more. So I called the propane company to ask if we could do some sort of payment plan and get a small amount of propane in the meantime, after the pipe is fixed, and they said that would be fine. I was very thankful. We have done business with them for almost 30 years and it is so wonderful when you have that kind of relationship. We got off the phone and I was thinking about that, and then they called back and said they’d discussed it and they were going to pay for half of what was lost – taking about $250 from our bill! I didn’t even know what to say – I was so tongue tied as I was thanking them! What a kindness!

God is with us, every day. I am thankful.

Also, here’s a weird picture Belinda let me take at the Ripley’s Believe it or Not Museum in Gatlinburg, Tennessee, when we were there for her dance nationals two weeks ago. I actually meant to post an album on facebook, I guess I should get on that soon. If you want to see a bit of what Belinda’s other rare disease, Ehlers-Danlos Syndrome, looks like…this is part of it. At least she can’t make her eye pop out like the museum pic guy.

Dentist

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Belinda went to a new dentist on Monday. Her pediatric dentist left his practice in November, and Belinda had never been to another dentist in her entire life. Since her insurance didn’t have that office in the network, we decided to go to a new dentist entirely. We chose one just over the river in Mustang. They’re all very nice and everything seemed fine…and then they said that she had TWELVE CAVITIES. Well, obviously I was very sus of that information, since Belinda is great about oral hygiene. She always brushes twice and day and flosses once a day. Now, I knew that her pediatric dentist had said she had two shadows that needed to be looked at, but now, four months later, there are TWELVE?? I asked a lot of questions but the dentist seemed positive. He also said that these had been there for at least two years. Um…no.

So on the way home I was talking about second opinions and that’s when Belinda wondered aloud if it could be from the achalasia, like acid going into her mouth. I hadn’t even thought of that. How awful.

I went home and got on the achalasia parents’ facebook group and some people there said their kids had the same issue. I still contacted insurance about a second opinion, just to be sure, and they’re supposed to get back to us early next week about that.

If it is acid, I’m hoping that pepcid that the allergist and internist want her to take will help with that. And I am thankful that we’re finding this out now, before things get worse. We’ll just have to do whatever it takes to protect her teeth.

Another thing to be thankful that it happened before college, and before she’s 18, so I can handle it all without extra difficulty.

Allergy Testing Scheduled!

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Finally! After going through hoops for months, Belinda’s allergy testing has been scheduled for March 13 at a clinic in Edmond that specializes in allergies in people with Mast Cell Activation Syndrome. This is one more thing we need to get taken care of so everything is checked off medically before she starts college in Alva in the fall. She’ll also be 18 then, and so she will have to handle more of her medical care as an adult. I will miss having healthcare professionals talk to me without hesitation, since she’s still 17. If we had discovered her issues after August, it would have been so much harder. I thank God that she was diagnosed when she was!

After that, she will go back to the internist in Tulsa on April 17.

It’s hard to believe she will graduate in May. I need to get senior pictures scheduled and start thinking about graduation announcements.

I just realized that her entire high school career has included us dealing with rare disease health care. I pray that her college experience goes smoothly and that the diseases don’t keep her from meeting her goals!

Allergist

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I called the allergist again today. They have gotten the referral, and they got the confirmation from insurance they needed today, hooray! Now the doctor will look at everything and see if he believes he will be the best doctor for her. I sure hope so because this has been such a struggle. I’m praying that God’s will be done, though, because I know that even if I’d like to have this doctor work out, if it’s not supposed to be then that’s the way it goes.

Anyway, the lady said they might get back with me today but probably early next week!

EDS ~ POTS ~ MCAS

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Today we went to the Ehlers-Danlos specialist in Tulsa. She was WONDERFUL and really listened to us. She agreed with the diagnosis of Ehlers-Danlos Syndrome (EDS), and also added Mast Cell Activation Syndrome (MCAS). She said Belinda also has Postural Orthostatic Tachycardia Syndrome (POTS) but it doesn’t seem to be giving Belinda much trouble at this time. She prescribed an antihistamine, which should help with some reactions Belinda has been having due to the MCAS.

We will go back in four months. In the meantime, she wants Belinda to see an allergist.

It’s a lot, and a ton to learn about. Fortunately, it doesn’t seem to be affecting Belinda too much. I just want to be on top of it for possible future issues.

Here’s a website with some info: The Trifecta: EDS, MCAS, & POTS

Oh, the doctor also said that while the EDS didn’t cause the achalasia, it was very possible that the achalasia was able to develope because she was at a higher risk due to the EDS.

We also went to the Oklahoma Aquarium today, and the Sapulpa Christmas Chute, since we were in the Tulsa area anyway.