Dr. H, the thinker

Our visit with Dr. Henderson yesterday was a long one. The appointment was for 3 pm, but we waited a long time in the waiting room (he was running behind). We got out of there at 7 pm!  Haley passed out about 6 times in the waiting room in her wheelchair. (Once, I timed her as being out for 12 minutes!) Needless to say, it was a long, tiring day for all.

Dr. H was really stumped by her. He had the disc with the MRI of her head and neck up on the big screen when we got into the exam room. He saw no evidence of anything on the scan that would explain her symptoms. After much thought, including him leaving to go back into his office for about 30 minutes to think (per his NP, we were the only people still there, and he was "thinking"). He believes that she has two things going on:

1. He thinks that these episodes are not fainting at all, but are non-epileptic seizures (also known as "drop attacks"), where she loses muscle tone everywhere. This would explain why she can often hear during these attacks and can quote what was said while she was "out".  He thinks that the cause is due to mast cells activation syndrome. We are not exactly sure what that means, but I know that mast cells are important in immune function and it seems that they can go haywire to varying degrees. He speculates that her mast cells are attacking her brain stem, (his words) and he feels that this can be turned around with medications and a special diet.  He said that he sees this a lot in patients with Ehlers-Danlos Syndrome, which she has, and that he currently has about 100 patients with this. He prescribed many medications to "stabilize" her mast cells and he wants her to follow a low histamine diet (or even a ketogenic diet). This is a lot of information for us to process. I asked where the specialist for this condition is, and he said the best doc is in New York--(road trip, anyone?) We will plan to go up there as soon as possible, but the doctor likes people to be on the meds/diet for at least a month before she sees them.

2. He thinks Haley has "tethered cord syndrome", which is also not uncommon in EDS patients. She has chronic leg pain, neck and back pain, and some odd urinary symptoms. He poked her with a big safety pin, which she barely felt in her lower extremities, and checked her reflexes and muscle strength. He would like some further testing, such as an MRI of her low back and some special tests of her urinary system before he considers surgery to "untether" her cord.

This news was very difficult for Haley, as she was hoping that he could do surgery to help her to stop fainting, just like last time. Her life is so hard now, and she misses being able to do what she wants. To be dependent on others for everything (including bathing) is very demoralizing.

My thoughts are that this condition has been present for a long time. Dr. H listed the "triggers" for mast cells misbehaving, and one of them was structural problems. Haley definitely had a big structural problem before he corrected it, so I think that maybe her previous fainting was due to mast cell problems. Other triggers are stress, some foods, some medications, and environmental factors.

Even though I am in the medical profession, I must admit that I have some research to do on this condition, but for now, I am just trying to be her mom and support her in whatever way I can. We are grateful to you for your support as well. As we were in the exam room waiting for Dr. H to come back, I knew for certain that there was an army of folks praying for wisdom for this man. Our phones were blowing up while he was in with us, as many were calling and texting to find out what he said. We have had many Facebook messages from people saying they are praying for Haley and us. Thank you all for that. We are truly grateful.

Please continue to pray as follows:

• For the "fainting" to go away quickly so Haley can resume her normal life and get out of the wheelchair and the hospital bed in the living room.
• For her to be able to follow the special diet and for it to make a big difference.
• For Dr. H to continue to think about her condition (I understand from his staff that he will continue to think and research long after his patients have left the office).
• For Haley's pain to decrease.
• For our family to know how best to love and support Haley through this difficult time.
• For us to all know God's kindness in a new and clear way.

A Fun Surprise from Haley and Some Other Sweet Ladies

She said that there would be a surprise for me when I got home. She knew that I was worn out from studying for my final exam and working and taking care of her. And she wanted to encourage me. When I pulled into the driveway as I got home from work on Tuesday evening, I noticed the two small Christmas trees on either side of the front door, all lit up. My first thought was that Larry had decided to get a start on the decorating. (I had made everyone aware that I was feeling stressed about having done nothing to get ready for Christmas, and this small gesture was so appreciated by me, as much for the decorating itself as for what it represented.) When I got inside, though, I saw it. There was a fully decorated live Christmas tree in my living room, lit up in all its glory! As it turned out, Haley had masterminded a plot along with our friends Donna, Rebecca and Kendra, to spend the entire day decorating our house. I immediately burst into tears!  These four had worked all day getting bins down from the garage shelf, unwrapping ornaments, connecting lights and putting various decorations around the house. They did all this as Haley sat and directed them. Even the mantel was decorated!

This past month has been incredibly difficult. As you can imagine, to go from having Haley fully functional, driving, working and titrating off of her pain meds like a champ, to her current state of health is more than discouraging. Even in the past few days, she has continued to go down hill. She is fainting about 20 times a day, sometimes even when she's just sitting in her bed. Today, she fainted and fell out of the bed. She woke with her wheelchair on her and in a ton of pain in her head.








We continue to covet your prayers for perseverance, healing and wisdom for Dr. Henderson. We will travel up to MD on Thursday (of maybe Wednesday night) for a special MRI on Thursday at 8 am and will see Dr. H at 3 pm. I know this will be hard on Haley, as she has little endurance. Please pray for that, too. We are hopeful that Dr. H can once again fix whatever is wrong in her neck. I will keep you all posted. Thanks in advance, all.

Seventeen Days

Haley has had a rough several days. Her fainting has gotten more and more frequent. She had another trip to the ER on Wednesday night (into early Thursday morning) for severe headache and continued fainting. It's so hard for her and so stressful for those of us who are around her when she faints. She is black and blue all over from falling on the hard ground. Can you imagine seeing your child constantly hurting herself and not being able to do anything to prevent it? Larry and I are on eggshells whenever she tries to get up.  My nephew, Michael, who is living with us, has been such a help to us.

We spoke with Dr. Henderson on Thanksgiving day, and he said he wants to see her "in an expedited fashion." I got an email this morning from his scheduler, and her appointment with him is December 18th. Seventeen days away. It seems like a long time. Hopefully it will fly by. Dr. H thinks that it's likely that her neck bones have shifted and that's the reason for the fainting, but he also said that it's more than likely two or three things all related to her Ehlers-Danlos syndrome.

We have a wheelchair in the house again, but it's emotionally hard for Haley to use it much. She says it feels like she's going backward to a very sad place. (I sure understand.) We have talked about putting a bed in the living room again, but she flatly refuses. It's too depressing for her. So, we have to escort her upstairs when it's time to go to bed at night.

We have been in touch with the leadership at our church, and are planning to ask for volunteers (again) to check in on her while we are at work.  Boy, it is so humbling and also such a blessing to be cared for like this. But we absolutely can't let her be alone. It's too risky. If she faints with her collar on, her face usually lands with her nose and mouth pressed against the floor making breathing difficult (or impossible), as the neck brace makes it impossible to turn her head to the left or the right.

Thanks, again for your love, concern and prayers for our girl and for us!