Tuesday PWYC: What's the one thing you promise....

[LadyMaverick]

has DS8 seen a neurologist?

No. Which has me frustrated even more.

Me calling directly to multiple pediatric neurologist offices to make an appointment is refused without a referral from a doctor. It doesn't matter to them that we have insurance that does not require a referral.

Multiple requests for a referral from pediatrician have resulted in nothing.

Today I called pediatrician office and they knew that I was highly frustrated. The office person checked DS8 file and said a referral had been sent to a big city hospital. They said it would take a couple months to get an appointment. The doctor assistant just called and said she had called big city hospital to check on referral and the big city hospital denied receiving it. ARGH.

DS8 pediatrician assistant asked if we would be willing to travel to another state (Dallas) to see a pediatric neurologist. YES! Just get him an appointment!!! She has now sent doctor referral to 3 different places that have multiple ped neurologists She said all of those doctors are so overbooked that it could take months to get in to see ANY pediatric neurologist.

So now we wait AGAIN to hear from someone.

[LadyMaverick]

Update: DS8 now has appt April 17th. One of the people I had visited with trying to get an appointment just received the referral and recognized me from our phone conversation. I asked what doctor the appt is schedule with and she gave me a first/last name. After getting off the phone I looked up the name given and it looks to me like it isn't a doctor. It is showing that she is APRN-CNP that specializes in Tourrettes. So now decision time....do I stick with this appointment even though she doesn't have a doctor degree? Or do I cancel it and get on a waiting list for pediatric Neurologist? She is in practice with 26 pediatric Neurologist. If I keep appoint then maybe it would give us an "in" to get appt with one of the doctors? When I look up this non-doctor ratings she has 5 out of 5 stars by multiple patients. She has to be good to hang around the "big dogs". hum.....

I called DS8 pediatrician office and visited with his assistant. She didn't know if we should see APRN-CNP. She will ask the pediatrician doctor for his opinion. The opinion I really don't trust right now. Flipping a coin is sounding like a possibility.

I called big city and asked to have appt change from APRN-CNP to ped neurologist. They were quick to tell me the APRN-CNP has been practicing 23 years and is very experienced. I still requested to be changed. There is only ONE doctor accepting new patients and he is booked solid until July. ARgh! I kept appoint in April instead of waiting 3 additional months.

[Nancy]

(LM & fam) It is still snowing ddog helped me herd hens back in bc the grass is now snow covered, not on the roads however yea! I had lunch, sipping black coffee while I wait a few min. For my next alarm for meds. Had a wonderful time down town got the dog to the park and we walked and I got to see the ice that had flowed from upriver that was interesting. Took the senic route home and was glad for the opportunity to consider some new things to draw in my sketch book.

[Lilac]

LadyM, I live in an area where there are not enough drs., so there are a lot of ARPNs. In our experience, they are as knowledgeable as any dr. we have.
If this ARPN-CNP has been practicing 23 years, I am betting that you will get the answers that you need, either through her or she will get you into one of the pediatric neurologists, if she can't help DS8. She didn't get those 5 out of 5 stars for nothing. I don't blame you for not trusting the pediatricians advice at this time. He has done nothing lately to earn your trust in this matter. Isn't he the one that wants you to get DS8 back in to public school? You are doing a wonderful job of raising DS8 and he couldn't have a better advocate in his corner. He is very blessed.

[Lilac]

Nancy, are you having a lot more snow events this winter than usual? I don't recall you having them one after another with a small break between them, like you are having this winter.

[Harriet]

LadyM, the one you want is the one who has kept up on cutting edge info plus had a lot of experience. But I don't know how in the world you could decide which person that was without meeting people, anyway. She may be the one. Maybe she is their "first contact" to see a patient and say which dr would be best in their circumstances?

As usual in response to wishing I could help when you post about the tics, I went searching again, believing that surely I would find brilliant thoughts. It ain't easy is it - the web is not exactly full of info, and none of it is one-size-fits-all. But I did find an account from Nov of 2015 of an 11-year-old boy whose multiple tics were (close to) resolved after being taken off of gluten and dairy. This was not the first or even second opinion, but finally the right one for him. That "rang a bell" for me in that I know you yourself resolved some issues by taking yourself off wheat (which effectively may have taken you off gluten) for a while. Then I saw that you probably know some of this, since googling "tics" and "gluten" does bring up more people's experiences on the Celiac sites, also Tourettes Canada, etc. Anyway, boy do I wish this could be simpler for you.

[Nancy]

Yes this is not our usual winter. We usually get some snow less thsn an inch a few times in the winter that melts off in a day or so. Walked ddog before we got home fog settled in not to the ground but we cannot see the hills. H. Is home now. Still snowing but not stocking on roads yet. H. dinner is done. Pm routine next up. Ddog is so happy with new snow to play in.

[Kathryn-in-Canada]

Glad to see some progress for LadyM even if it doesn't seem like it. You did succeed in lighting a fire under the pediatrician's feet today. So you deserve a big gold star!

Lovely drive to one of our favourite towns and I spent a fortune in one of my favourite shops but they are moving into semi-retirement soon so it might be my last time in their store. Picked up another pewter ornament across the street while I was at it.

Left with just enough time to get to the pub for lunch but got lost. Before we found a place to turn the car around, we found the pub. So that was good. The drive there was lovely since the water looked so pretty in the cold sunlight.

Great lunch with my cousin and a good long visit.

Got to Uncs about 30 minutes before dinner so it was a quick visit. He had physio today so was napping when we arrived.

We had dinner at the hotel; they put on a dinner each weeknight. That plus leftovers from breakfast and dinner 2 nights ago meant we had a good supper.

I've been working on the service all day during down times. Got additional requests for a poem for the back of the bulletin etc. Found a perfect one from a favourite website but have sent a note asking for permission to print it. I use this guy's stuff all the time for prayers and his examples have helped me right more poetic prayers but this website is unclear if I can print it out. He's in South Africa so I have a chance I'll get an answer by noon tomorrow since he'll be seeing my email while I sleep.

I need to get the prayers written but I'm drawing a blank. Deadline for printing the bulletin is Thursday at 10 a.m. but the prayers aren't in the bulletin, they are projected. I still don't have the hymns but that's not my fault, I've handed the task to the music director and he knows the noon tomorrow deadline for the bulletin layout (noon tomorrow.)

When I have my own way, I write the sermon first then go back and write the service. Or at least start the sermon and then circle back.

Anyway, I'm scrambling now.

And to complicate matters, the rain that Cathy got today is freezing rain at home and we are to get a bit storm here too - 4" of snow, then 3 hours of freezing rain, then rain tomorrow morning. How those two storms are going to affect our flight, I don't know.

[LadyMaverick]

Isn't he the one that wants you to get DS8 back in to public school?

Yes. DS8 pediatrician is pushing us to get DS8 back into public school. He knows we made the decision to homeschool DS8 when his vocal tics made it impossible to send him to school. I'm guessing the doctor thinks that being able to return to school means the tics are under control?

I let DS8 not take the tic medication this morning. By tonight we all agreed that was a mistake. The medicine really does help. DS8 has thrown his head backward in whiplash fashion many times more than normal ....guessing 1000 times today. DS8 vocal tics have been really bad today too. We went to Sam's Club tonight and couldn't help but notice the people staring at DS8. This experience has given me a whole new compassion for disfigured or handicapped people who have people staring at them.

I have stalked the Tourette's forums looking for clues and ideas. Some people find something that will work for a period then the tics will return. Changing diet, taking massive natural supplements have both been tried repeatedly. I started googling the username of people who say they changed or added something to make tics go away. Usually, I found them posting later that the tics returned.

i am thankful DS8 has something that isn't life threatening. It could be a whole lot worse. There is a chance of Tourette going away by the time he is an adult.

We are having a spell of BEAUTIFUL weather. Bright sunshine & 85 degrees. Next week we will return to winter weather.

[Nancy]

Snow has stopped it is 32* out here. I boiled an egg did p m routine while it cooked. Amazing what a difference 15 min. Will make.

On PBS "Sewing w Nancy *" I got an idea for more bags for kids waiting at dr. Office or hosp. Before surgery. I have some with fun kid prints so I guess I will keep sewing bags up. Hope I can find an outlet for them and some one to help fill em with the stuff I am still researching what goes into them. I have 4 ready for draw strings.

*
http://wpt.org/SewingWithNancy/Video/na ... ient-pouch