I called the PN office early this morning, as I was told he would be in today. I told her Lily had x-rays done and they showed abnormalities. She could contact our clinic for them. I told her the podiatrist mentioned she could have some form of muscular dystrophy, pinched nerves, or a mass. I told her I suspected CMT (Charcot-Marie-Tooth disease, a form of MD) She asked if there was any history of muscular dystrophy in our family and I told her not that I was aware of.
The referral specialist said he wouldn't be in until after noon, but she would get Lily's file together, get it to the PN, and get back to me either today or tomorrow.
Well, the x-rays must have put things into fast-forward. The referral specialist at the PN office called shortly before 3. The PN said he would take her, and scheduled her for March 25 at 9:45. There is an MD clinic that day at the clinic as well, and he wants her participating in that. There was no indication of what Lily might have, but given that the PN wants her to participate in an MD clinic, we can only assume that he believes it is some form of MD.
Thursday, March 12, 2015
Pain meds Mar 10
Lily's foot was giving her lots of pain, so I scheduled an appointment for her that afternoon. The only one who was available was a nurse practitioner (NP), not an actual doctor. I wanted them to take x-rays of her foot as none had been done yet, and also to give her something for the pain.
When the NP came in, her first comment was (quite accusingly) "You want narcotics for your daughter?" Like I was trying to drug her up!! I told her what was going on, and she didn't even look at her foot! She got up and said she wanted to read what the podiatrist said. 10 minutes later, she finally came back in. Their office was closed, so she couldn't get any records. I asked if we could at least do an x-ray, and she was on board with that, though she was still doubting what was going on.
Shortly after x-rays were taken, the NP came in and seemed much more sincere. Her first words were "Wow, I guess she does have some abnormalities in her foot." DUH!!!! Then she very nicely asked what I was thinking for pain reliever. I asked if we could start with something that wasn't a narcotic, and she agreed. So naproxen it is. As we were walking out of the appointment, she said good luck and told us "You know, sometimes the squeaky wheel gets the oil.". I think she felt bad for doubting us.
Here are her x-rays vs. "normal" x-rays.
When the NP came in, her first comment was (quite accusingly) "You want narcotics for your daughter?" Like I was trying to drug her up!! I told her what was going on, and she didn't even look at her foot! She got up and said she wanted to read what the podiatrist said. 10 minutes later, she finally came back in. Their office was closed, so she couldn't get any records. I asked if we could at least do an x-ray, and she was on board with that, though she was still doubting what was going on.
Shortly after x-rays were taken, the NP came in and seemed much more sincere. Her first words were "Wow, I guess she does have some abnormalities in her foot." DUH!!!! Then she very nicely asked what I was thinking for pain reliever. I asked if we could start with something that wasn't a narcotic, and she agreed. So naproxen it is. As we were walking out of the appointment, she said good luck and told us "You know, sometimes the squeaky wheel gets the oil.". I think she felt bad for doubting us.
Here are her x-rays vs. "normal" x-rays.
Waiting!! Mar 6
This waiting has been awful! So I called the Pediatric Neurologist office to find out if he had a chance to look at Lily's file. I was told he was out of the office until the following Wednesday! How frustrating! They did not tell the podiatrist's office that when they tried to get a referral.
Lily's foot had been causing her a lot of pain, so we thought about getting her in to either Milwaukee or Madison, to see if she could get in sooner. Madison didn't have any openings until June! Milwaukee said they could get her in within a week if they felt her case was emergent, which meant limb or life threatening. Lily was neither. If we wanted to schedule her in, it would be a few months before she could get in.
I called the podiatrist to ask about some pain reliever for Lily. She was willing to give her some, but with the new drug requirements, we would have to drive an hour to pick up the written prescription to physically give it to the pharmacist. Sorry, we can't do that. She suggested we see her physician here in town.
With it being Friday, her pain has been less on the weekends, so we thought we would wait and see what the weekend brought.
Lily's foot had been causing her a lot of pain, so we thought about getting her in to either Milwaukee or Madison, to see if she could get in sooner. Madison didn't have any openings until June! Milwaukee said they could get her in within a week if they felt her case was emergent, which meant limb or life threatening. Lily was neither. If we wanted to schedule her in, it would be a few months before she could get in.
I called the podiatrist to ask about some pain reliever for Lily. She was willing to give her some, but with the new drug requirements, we would have to drive an hour to pick up the written prescription to physically give it to the pharmacist. Sorry, we can't do that. She suggested we see her physician here in town.
With it being Friday, her pain has been less on the weekends, so we thought we would wait and see what the weekend brought.
Podiatrist - March 3, 2015
Because Shawano is small, there are virtually no specialists around, so you have to drive. The podiatrist was in Wausau, which is an hour's drive from us. And of course, it was snowing; a lot. The drive there was not nice at all.
The podiatrist looked at Lily's foot. She noted that her right foot had extreme "pes cavus" (high arch) and her left food was flat-footed. Dr. pushed on it, pulled on it, and determined that it was neurological, and her muscles were weak. She did not take any x-rays either.
We were told she could have some form of muscular dystrophy, or she could have a pinched muscle or nerve, or there could be a mass somewhere. But she couldn't help. Orthotics, at least at this point, would hurt more than help. She also said an orthopedic surgeon would probably be required for some form of surgery. We were referred to a pediatric neurologist (PN) for further diagnostics.
These specialists are even farther from us. Madison and Milwaukee (2.5-3 hours) are the closest, although I did find one in Green Bay, which is only about 40 minutes from us. Unfortunately, the referral receptionist was out of the office for lunch.
When she got ahold of us, she explained that the PN in Green Bay would need to review her file first, and then determine if he felt he could help her. After that, an appointment could be set up, which would be a wait of about 2-3 weeks. They would call when the PN had looked it over.
The podiatrist looked at Lily's foot. She noted that her right foot had extreme "pes cavus" (high arch) and her left food was flat-footed. Dr. pushed on it, pulled on it, and determined that it was neurological, and her muscles were weak. She did not take any x-rays either.
We were told she could have some form of muscular dystrophy, or she could have a pinched muscle or nerve, or there could be a mass somewhere. But she couldn't help. Orthotics, at least at this point, would hurt more than help. She also said an orthopedic surgeon would probably be required for some form of surgery. We were referred to a pediatric neurologist (PN) for further diagnostics.
These specialists are even farther from us. Madison and Milwaukee (2.5-3 hours) are the closest, although I did find one in Green Bay, which is only about 40 minutes from us. Unfortunately, the referral receptionist was out of the office for lunch.
When she got ahold of us, she explained that the PN in Green Bay would need to review her file first, and then determine if he felt he could help her. After that, an appointment could be set up, which would be a wait of about 2-3 weeks. They would call when the PN had looked it over.
Wednesday, March 11, 2015
First appointment Feb 26
Lily's pain kept progressing. So on Feb. 26, I called the clinic to make an appointment for her. The only doctor available was the pediatrician who comes to Shawano once a week.
We spent a whole 5 minutes in the office with him. He looked at her and didn't know what to do, so he referred her to a podiatrist. No x-rays to see if there was anything broken. The nurse called 3 different podiatrists, but none of them accepted our insurance. We were sent home and I was told I had to find one on my own who would accept our insurance.
On our way home, we stopped at a shoe store and they measured her feet. Her left one measured a size 9. Her right one measured a size 6.5!! They fitted her with some good ASICS, and showed her how she can adjust the strings to get a more loose fit for her right foot.
I was able to get Lily in with a podiatrist I was familiar with the following Tuesday. No long waiting time. Yay!
We spent a whole 5 minutes in the office with him. He looked at her and didn't know what to do, so he referred her to a podiatrist. No x-rays to see if there was anything broken. The nurse called 3 different podiatrists, but none of them accepted our insurance. We were sent home and I was told I had to find one on my own who would accept our insurance.
On our way home, we stopped at a shoe store and they measured her feet. Her left one measured a size 9. Her right one measured a size 6.5!! They fitted her with some good ASICS, and showed her how she can adjust the strings to get a more loose fit for her right foot.
I was able to get Lily in with a podiatrist I was familiar with the following Tuesday. No long waiting time. Yay!
When it all started Feb 19
October 2013, we noticed Lily's feet were two different sizes. The left foot was longer than the right foot. But that happens a lot, right? No big deal. I have 2 different sized feet as well, although not as noticable as hers.
Fast forward to November 2014. We started noticing Lily's right foot was starting to arch high. But there was nothing else wrong and Lily didn't complain of anything hurting. She was walking normal as well.
In late February, 2015, Lily started complaining that her right foot was hurting her. After further inspection, we noted that her arch was extremely high, her toes were turning out, and her ankle was supinating. Gave her some ibuprofen and she was good.
Fast forward to November 2014. We started noticing Lily's right foot was starting to arch high. But there was nothing else wrong and Lily didn't complain of anything hurting. She was walking normal as well.
In late February, 2015, Lily started complaining that her right foot was hurting her. After further inspection, we noted that her arch was extremely high, her toes were turning out, and her ankle was supinating. Gave her some ibuprofen and she was good.
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