Onva Graham on Saturday, November 12, 2011 at 12:08am
Hello everyone! We are still in New York. Cooper and Parker are already long asleep and I am sitting here doing research on Parker's condition (or what we think is his condition) as usual.
We saw Dr. Axelrod and Dr. Feldman yesterday. I updated some of you by text but did not include everything. Also, everything has had time to sink in now and some of our thoughts have changed since right after the appointments.
Both doctors were very nice and took more time listening to us and asking us questions than any doctors I have ever met with before. It was so nice to have someone believe us for a change. Dr. Feldman is an orthopeadist and we had an appointment with him first. He did a full body scan on Parker (which I have been trying to get done in Georgia for years). Because of this, the cost for the appointment was almost three times the estimate they gave me when I made the appointment. The scan showed evidence of old fractures (another ankle fracture, one elbow, and one/possibly two nose fractures) that we did not know about which is no surprise as that happens all the time with Parker. He noted some asymmetry for Scoliosis but no real Scoliosis yet. He also noted some hypermobility issues which would make sense in relation to his almost constant joint injuries although no doctors in Georgia have ever thought this was the reason. He said he believed his bone density was normal. He gave us plenty of recommendations on how to keep up his bone and muscle strength while also reducing the chance of injury. He also gave us some recommendations on how to help some of the unusual postural tendencies Parker has so that these do not create even more orthopeadic complications in the near future. He wrote a new prescription for Physical Therapy as Parker was not granted any more PT based on the fact that he received PT before through the diagnosis of Sensory Processing Disorder and for those of you who do not know "the system", once you have reached the set number of visits your insurance company will give you based on your diagnoses, that is it. Hopefully he will qualify for more PT now. It was a very informative visit and we got way more out of that one appointment with him than I have from all the visits with his orthopeadists in Georgia. He also gave us the body scan on disc so I can take it back and say "THIS is why I have been asking you to do a scan and this is what his looks like!".
The visit to Dr. Axelrod lasted a few hours. She spoke with all of us about Parker's symptoms in her office, at length. She then took Parker alone to do extensive sensory evaluations, measured his tear flow (some of these kids produce no tears at all), took his blood pressure (many of these kids have bp problems), did some gait evaluations (observations to see how he walks), did a histamine test (kids with HSAN do not typically have a normal histamine response),and talked with him in general about his challenges. She then came out and talked with us about the results. The histamine test was normal meaning he had a small response to the injected histamine. This should mean he does not have Hereditary Sensory Autonomic Neuropathy (HSAN) although she did state that he only had a small response to the histamine and she was not expecting him to have one. His tear flow and blood pressure were normal but not every type of HSAN causes tear flow and bp to be abnormal. Dr. Axelrod stated that based on what she observed and the histamine test that Parker does not have an HSAN but an indifference to pain caused by a problem with how his brain interprets pain. This would be cause by a central dsyfunction. She gave us lots of recommendations for which therapies we should start, accomodations to make for Parker, exercise that is safe for him, and more. Lastly, she said Parker has Sandifers Syndrome. It is caused by having reflux for all these years and it can cause his body to contort in odd ways. Most noticably, it caused him to tilt his head alot when she was doing certain testing. I had never heard of this disorder and was quite honestly ticked off when she told me what it was and what it was caused from. I was upset because some of you know me well enough to know how much I question doctors-how I log EVERY symptom he has-how I have even recorded Parker on my phone to show them what symptpms I was bringing him in for. All of this over the years and no doctor or therapist, not even one, ever mentioned this disorder to me and he has had awful reflux since the day he was born. I have no doubt we would have never had known this had it not been for seeing Dr. Axelrod. She is sending us the notes from the appointment and hopefully, based on the diagnoses of "indefference to pain due to central dysfunction" and the diagnoses of Sandifers Syndrome Parker might be able to finally qualify for Katie Beckett/Deeming Waiver in Georgia.
Since the appointment I have been researching and questioning through the Facebook support group Cooper and I belong to for children who do not feel pain. I was told quite a few kids whose parents belong to the group have had the same experience we have with not being diagnosed with an HSAN before having a nerve biopsy. The parents of these kids I have spoken with through Facebook have stated based on observances, their child did not have HSAN and it was not until the biopsy that they found out they did. I feel like Dr. Axelrod's appointment ruled out some types of HSANs and we might need the biopsy to find out the exact type he might have. This would be a surgical procedure so obviously it is not something we will get done while we are here. I will need to try and get this ordered back home.
Even though I feel like we don't have all the answers, I feel like we at least have a diagnoses that might get us in with neurologists back home that would not see us before, we have a diagnoses that might get him the insurance he needs, both doctors are willing to communicate with our doctors back home so they can help them know how to best help Parker, we have new information that explains alot of symptoms that no doctor in Georgia seemed to have been able to explain, and we have new information from both doctors to help us know what Parker should and should not be allowed to do.
I am still working on digesting all this information and what, for sure, is the next step............
Special Note from Onva Graham:
Saturday was an long but awesome day! We had a successful yard sale and got a very generous $1,000 donation from the Saleen Club of America (and some from Australia)! Thanks to Mo's Speed Shop and Shane Jackson for shaving his head and legs to make this happen! Because of everyone's donations, Mellow Mushroom night and these fundraisers I am SO happy to say that we have now reached our goal! Whether you donated money, gave up your time to help us sell doughnuts, bought doughnuts, came to Pizza for Parker, sorted/donated/transported yard sale items, worked at the yard sale, or got the word out about our story, you are why Parker can receive the expert evaluation that he needs. Thank you all!
Anyone that feels led to donate can do so at any Wells Fargo. Ask the teller to look up the "The Parker Graham New York Fund". Thanks!!!!!
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