Darling, darling little feet!
Okay. Daniel had his first orthopedic specialist apointment this week and I’ve been trying to digest and think through what we learned. It’s been two days and I haven’t had a chance to talk thoroughly with Brian yet. I continue to reach out to arthrogryposis support groups and all the new information is hard to organize. Therefore: this blog. Just trying to get my thoughts into more order.
1. Diagnosis. The docs at Portland’s Shriners didn’t give him a formal diagnosis. Why? Because they want a geneticist to do that. They did not offer any guesses. I contacted a different doctor who specializes in AMC (Dr. VanBosse in Philidelphia Shriners) via email some months ago and he was more forthcoming, guessing that he most likely has a form of distal arthryogryposis. This doctor’s wait list is somewhere around 18 months long and an airplane ride away, so I’ve been looking into these local doctors first. Some doctors don’t bother with a specific AMC diagnosis, because the treatment doesn’t vary a great deal between types of AMC. Anyway, we’re supposed to go to Dr. Zonana, a geneticist. I think I have that already scheduled.
2. Upper extremeties: His arms and hands look pretty good. He has decent grip strength (which I deduced from a positive sounding grunt from the uppers doctor when Daniel squeezed his hand) but some joint instability in his fingers. Some of his finger joints do not bend. The uppers doctor (Dr. Freese) gave a favorable general first impression to me, but was not exceptional in explaining or summarizing or giving written recommendations. Anyway, we’re leaving his uppers alone for now.
3. Lowers: We saw Dr. Raney for this and I can’t tell whether I like her or not. She sounded experienced but she expressed a lack of confidence in the success of treatment, due to Daniel’s specific condition/age situation. Again, I didn’t get anything in writing or summarized and the lack of parent/patient education was frustrating. They seemed surprised I knew what I know. I am actually seriously considering getting a token degree in nursing just to change the dynamics of doctor/parent conversations so they don’t continue oversimplifying the conversations. Anyway, she thinks a long cast for his feet and knees, on two weeks then replacing with a new cast every two weeks for a number of months is the most likely to get his knees to 45 degrees and his feet closer to flat. That would be followed by foot surgery. All of this is fairly painful process. I am trying to learn if it would be better to leave his feet alone or even amputate and get a prosthesis in order to avoid medical trauma, but it’s been hard to talk through all the options when they don’t just volunteer a list of options with pros and cons of them all.
4. Wheelchair: I really didn’t like the PT there. The PT is in charge of finding out what type of medical equipment would be most helpful or necessary. She was rude, disliked our family dynamics, questioned whether I was providing appropriate care for Jordan, and repeatedly pushed medical equipment that is less important to me. She didn’t sound incompetent, so that is good. She’d like to see Daniel weight bearing more to increase the strength of his leg bones. She’d like him to be in a gait trainer and stander and puts a wheelchair secondary… suggesting that a powered chair is a better choice for him. He can’t get up or down on his own, so a stander or gait trainer is not going to be something that helps him to be with his siblings freely. A manual wheelchair, perhaps with a power assist would give him the most flexibility around the house and outdoors and be most developmentally appropriate. You know, in my humble opinion.
5. Xrays: We took xrays of his pelvis/hips area and of his feet. I hated that they wanted his genitals unsheilded for the xrays. This kid has enough adverse experiences. I don’t want to add infertility to the list. Anyway, we got the xrays finally and that’ll be useful. They didn’t explain the xrays to me except to name a few of the bones to me while we looked. Soooooo, I don’t know what we learned from them.
6. Other body parts: His scoliosis looks really mild, his funny bumpy rib did not concern them… so that’s good.
7. I asked for help getting padding for his bottom while he’s a butt scooter and has begun to get pressure sores a few times. They did not help with that. I asked for help getting a wheelchair and they will have me schedule a second evaluation before they will do that.
8. How did Daniel do? Despite people getting in his space, touching and moving his body parts, he was amazing. But then he rocked and barely slept all night. Poor, brave boy. Last night he was awake from about 11-2. I can’t think of anything else going on to wake him up except his nerves.
All of this to say, I am not ready to put Daniel in casts for 3-4 months, followed by multiple surgeries at this point. Time for second and third opinions. I have contacted a lowers specialist with a great reputation named Dr. Dobbs and he says that he can help him. I have a little more confidence in letting somebody treat Daniel in this way who has a reputation for best-possible outcomes. I have referrals started for Seattle Children’s, which has an arthrogryposis team that is well spoken of. And I have spoken with a number of other parents of kids with AMC and also adults with AMC who recommend everything from no treatment at all to do “all the things no matter how it hurts.” Suffice to say, it’s not a clear pathway.
Is that ironic that it’s not a clear pathway? Pathway. Walking. Feet.
Proverbs 3:6
Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.
As I drove to the hospital on Tuesday, this song played on the radio twice. I’m believing God has a really good plan for Daniel. Including some healing in his body.
“Don’t you give up on a miracle
You’ve got to speak to the impossible
You gotta
Pray till your breakthrough breaks through the ceiling
Keep on believing
Don’t you give up
Don’t you give up
On a miracle”
~Miracle by Unspoken
Wow, frustrating. So sorry. I will keep praying, Rachel.
One thought I had while reading this was that over 20 years ago, Ed and I went through recurrent miscarriage and after three or four were referred to the expert in the field who happened to have an office in Memphis, in the same town we lived in, yay! Well, the first three visits with him were incredibly frustrating. He was dismissive of our questions, condescending, and just generally uninformative. So we went somewhere else despite the fact that he was highly recommended. Then after we scheduled an appointment with the new doctor, I got a call from him asking if we had received bad care and why was there another doctor calling to get our information from him. I told him how frustrating our visits were and all of our confusion. He asked us to come back in, and we did. He apologized very sincerely and explained, somewhat lamely in my opinion, (busy student training medical facility, most patients don’t want to know or are low IQ and can’t take it all in, blah, blah). After that we had the best experiences with him. He was a completely different doctor, it seemed. He never was able to help us bring a baby to term, but we felt fully informed and part of the and decision-making process.
I tell that very long story just to encourage you to maybe speak up and tell them how frustrated you are with their lack of information. It may not help, but this doctor taught me that sometimes it is does help and is worth it.
Thoughts from an adoptive momma of 2 amcers. Genetics. Amc kids often have deep veins thereby making a blood draw next to impossible. It matters not what form he has. And not all are genetic. My two were never tested. Its a clinical diagnosis. If youre unsure of other underlying problems genetics might help though. Doctors and lack of confidence of treatment. There seems to be a few schools of thought on this. 1. Dont do anything, the contractures will recur anyway. Or 2. Do what can be done and do your best to hold the change til they stop growing. We ran into a lot of the first theory. Until van bosse. He gave us hope. All the naysayers have also given us a line of bullpucky about them being too old and it wont work. Except they werent too old and it does work. Wheelchair, probably have to meet with wheelchair rep to order. We used a stroller in meantime. And dont feel pressured into rushing into invasive procedures. The truth is amc is worst at birth. It wont get worse while you find a competent capable doctor. Since your guy hasnt been home that long you might also want to consider holding off on treatments awhile. It really messes up the bonding thing.