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.
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