Tomorrow Becky and I have a meeting at Ally's school to talk about getting Ally set up with an official 504 Plan to accommodate her pain.
Everyone at Children's Hospital is really good at talking to Ally, and making sure she knows she matters and she is who they are talking to first, and then I come second. The great thing about this is that it empowers Ally and it engages her to want to take some control. The doctors talked about the importance of sleep, and gave us a handout on sleep. That night Ally sat down with us and drafted her sleep routine.
And in case you wondered what some of the alternative treatments we've tried are.
So no more of this. Now it's just a couple of pillows and only 4 stuffed animals. And a new mattress has been ordered. Many thanks to Gruncle and Suzie!
Above the new bedtime routine:
Stretching
Bath or Shower
Lotion (and pjs)
Read and eat Snack while mama reads
Relaxation Breathing
Brush Teeth
Sleep
Some photos of the bedtime reading.
It's acupuncture, moxi-bustion, and cupping. All 3 are done at the acupuncture center at Children's. Ally really likes going. The acupuncture portion is really relaxing, the moxi-bustion is fine, Ally is indifferent to that. In case you were wondering the doctor holds a tightly wrapped and rolled package of mug-wort that has been set on fire over areas that the needles were placed. Officially
"Practitioners use moxa to warm regions and acupuncture points with the intention of stimulating circulation through the points and inducing a smoother flow of blood and qi."
But the final procedure is cupping, and this tickles Ally and she giggles thru the whole thing. In this the doctor applies glass cups which are suctioned to several places and the negative pressure provided by cupping can loosen muscles, and encourage blood flow. The side affect of the cupping is that it leaves marks on Ally's back. She doesn't mind at all. So far she has had two session and will receive 4 more.
Ally as I said remains upbeat thru all of this, most of the time at least. She has rediscovered her love of the gymnastics bar. We have set her practice bar up in the house again, and she works on it every night. She is desperate to get her kip which is a very advanced skill.
She even has grips so her hands don't blister and bleed from the friction on the bars.
Another highlight in all of this is love and support from family and friends.
Great Aunt Martha and Uncle Phil sent Ally flowers and a stuffed animal.
Another big eye Bea.nie B.oo. This one is named Freeze and Ally was excited that it's birthday is November 17! She was so thrilled.
More complete report:
Ally and I went to the Pain Clinic at Children's Hospital. It was a 4 1/2 hour appointment.
Good News and Bad News.
Good news is that physically there is no longer any injury in Ally's ankle or foot. She has full medical clearance for all sports and activities. As pain permits.
That is the Bad News, the pain. Ally has developed a nerve problem, where her nerves are sending pain messages but there is no actual cause of the pain. They were clear this is actual pain that Ally is experiencing. It is not "in her head" and the key is to "retrain" her nerves to stop sending pain messages to her brain. The doctors want her to get back to as much activity as possible and work thru as much pain as she can. She has to be careful that in guarding against the pain she doesn't fall and hurt herself. The more bad news is that the getting rid of the pain is going to be a long process. They talked about months not weeks. But that getting back to more activity and no longer wearing the boot and increasing physical therapy, continuing acupuncture (she started that last week) along with some mental mindfulness and relaxation techniques they feel we should see some improvement within a few weeks. We start at physical therapy at Children's Hospital next week. Ally's pain level is at a 6 or 7 all the time right now. The Pain Clinic feels we should see some results, like down to a 3 or 4 within 4-6 weeks. If not then we go back and she probably gets fast tracked into an out patient pain program. The pain program has a very long (several month) waiting list and its a 5 day a week 6-8 hours a day program of physical, occupational and psychological counseling to get her brain and central nervous system "retrained" as they call it. They hope this isn't necessary but put her on the list for it, just in case she isn't better when a spot opens up, and they were pretty clear that I should call them back in 4-6 weeks if there is no change in Ally's current condition and pain level.
The Pain Clinic Team, and there were 5 doctors plus 1 physical therapist, were thrilled that Ally has been keeping up with gymnastics, and encouraged her to start back at ballet. We talked with Ally about working thru the pain, that we all know it will be difficult and painful, but that it is really important. I think she understands that as much as she can, but she is also scared.
They asked that Ally stop wearing the boot. She agreed to try. The thing is that without the boot her pain is at 7 or 8 to walk around, and I don't really know how much she can "work thru the pain" the pediatric PT next week is supposed to help me figure that out with Ally.
The doctors said they don't think medicine is a good choice at this time. Apparently it's tricky to prescribe medicine for this type of pain for someone Ally's age. It takes 3-4 months to get the does right, then she'd stay on the right dose for 3-4 months while she was pain free and then it takes another 3-4 months to wean her off the pain meds. I had to agree I don't think that is an ideal scenario.
The Pain Clinic psychologist will be in touch with Ally's school about making some accommodations for Ally, like more time to get places during school (because she walks slow) and having a safe place for her to go if the pain is bad, and maybe a place for her to practice meditation and other mindfulness activities to deal with the pain.
Thank you as always for your love and support. Ally, Becky and I all appreciate it.
PS. if you had not heard, Becky got the results of her throat PH test last week. She does have laryinginal reflux, which is reflux in her throat and larynx. This is what is causing her cough. She is on a new prescription and medicine regimen and should see relief in 2-4 weeks.
Good News and Bad News.
Good news is that physically there is no longer any injury in Ally's ankle or foot. She has full medical clearance for all sports and activities. As pain permits.
That is the Bad News, the pain. Ally has developed a nerve problem, where her nerves are sending pain messages but there is no actual cause of the pain. They were clear this is actual pain that Ally is experiencing. It is not "in her head" and the key is to "retrain" her nerves to stop sending pain messages to her brain. The doctors want her to get back to as much activity as possible and work thru as much pain as she can. She has to be careful that in guarding against the pain she doesn't fall and hurt herself. The more bad news is that the getting rid of the pain is going to be a long process. They talked about months not weeks. But that getting back to more activity and no longer wearing the boot and increasing physical therapy, continuing acupuncture (she started that last week) along with some mental mindfulness and relaxation techniques they feel we should see some improvement within a few weeks. We start at physical therapy at Children's Hospital next week. Ally's pain level is at a 6 or 7 all the time right now. The Pain Clinic feels we should see some results, like down to a 3 or 4 within 4-6 weeks. If not then we go back and she probably gets fast tracked into an out patient pain program. The pain program has a very long (several month) waiting list and its a 5 day a week 6-8 hours a day program of physical, occupational and psychological counseling to get her brain and central nervous system "retrained" as they call it. They hope this isn't necessary but put her on the list for it, just in case she isn't better when a spot opens up, and they were pretty clear that I should call them back in 4-6 weeks if there is no change in Ally's current condition and pain level.
The Pain Clinic Team, and there were 5 doctors plus 1 physical therapist, were thrilled that Ally has been keeping up with gymnastics, and encouraged her to start back at ballet. We talked with Ally about working thru the pain, that we all know it will be difficult and painful, but that it is really important. I think she understands that as much as she can, but she is also scared.
They asked that Ally stop wearing the boot. She agreed to try. The thing is that without the boot her pain is at 7 or 8 to walk around, and I don't really know how much she can "work thru the pain" the pediatric PT next week is supposed to help me figure that out with Ally.
The doctors said they don't think medicine is a good choice at this time. Apparently it's tricky to prescribe medicine for this type of pain for someone Ally's age. It takes 3-4 months to get the does right, then she'd stay on the right dose for 3-4 months while she was pain free and then it takes another 3-4 months to wean her off the pain meds. I had to agree I don't think that is an ideal scenario.
The Pain Clinic psychologist will be in touch with Ally's school about making some accommodations for Ally, like more time to get places during school (because she walks slow) and having a safe place for her to go if the pain is bad, and maybe a place for her to practice meditation and other mindfulness activities to deal with the pain.
Thank you as always for your love and support. Ally, Becky and I all appreciate it.
PS. if you had not heard, Becky got the results of her throat PH test last week. She does have laryinginal reflux, which is reflux in her throat and larynx. This is what is causing her cough. She is on a new prescription and medicine regimen and should see relief in 2-4 weeks.
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