Treatment: PT using MedX per Mooney & later, McIntire research

[AMom]

I sent Janet everything she asked for and she sent me contact info for a handful of families whose daughter had tethering as their treatment. It is nice to be able to speak with them.

I checked with my husband and daughter and we are accepting the first appointment Janet has available, 10-27-15. Then I found Miracle Flights for Kids and they are going to fly us across the states and back. Now I need to find a hotel or Ronald McDonald House in or near Lawrenceville, NJ and an hours’ worth of ground transportation from the airport to the doctor’s office and we will be set. I wish my husband could accompany us, but he doesn’t do well in any type of medical situation so it is better if he stays home with our youngest daughter.

I spoke with my daughter's high school VP regarding make-up assignments and she said they will work with us.

–If Miracle Flights can’t find transportation for the day before and after the appointment, then we might get to go sightseeing. My daughter loves history and she is hopeful!!! It would certainly help to attach a positive note to the ortho's visit.

A Mom

[AMom]

Hi Folks,

To date, all of our medical visits have been in California. That means a drive and sometime a stay in a hotel--everything was simple. I must admit I was oblivious with regard to the costs and minutia involved in scheduling a medical visit across the USA! I am amazed at how you handle/d distant medical care! Wow, you are all so impressive.

First of all, Miracle Flights for Kids has been fantastic. They are helping us get to and from the pre-op visit. Then, there are two hotels, car rental, and meal expenses which will come to approximately $1500. When I had been figuring expenses, I had only allowed for direct medical expenses. My daughter requested we visit Independence Hall and the National Constitution Center, but this is mostly free and we will do it during our the downtime. (We are coming in earlier than necessary because it is the flight that is closest to our appointment.) I wish Betz was still at Shriners because Shriners not only step in and help with expenses, they are super nice and will drive us to and from LAX. --My sense of direction is nonexistent, finding my way through busy, large entities means we will end up at the wrong gate several times and late.

In the meantime, I have contacted California Children's Services (CCS), Social Services (AAP), and will look into contacting the Ronald McDonald House near the hospital and local service agencies in an effort to address gap expenses incurred during the surgical visit to the east coast.

We will be seen on the 27th and I'll let you know Betz's decision when we get home.

Miracle Flights said they will get us TO the surgical visit, but not home. Does anyone have any suggestions on how to handle the 10+ hour (including layovers) post surgical flight home?

A Mom

[3sisters]

After surgery, if she is approved, you can stay in the RMH (if there is room) for a few days until cleared by her surgeon. Then, she can just fly home like any other passenger would! There are no special requirements or needs for flying post op; you would just make sure she has any pain medicine needed with you. Many have flown home to CA, NZ, Aus, Europe, and other places just fine post op.

[mariaf]

AMom,

Good luck at your appt. next week. Can't wait to hear how it goes. Your daughter will be in good hands!

[AMom]

When Betz told us that Rhea's current curves were NOT over 40 degrees and then preceded to read the prior x-rays we brought and got markedly different readings I must have looked like an idiot because and he asked if we wanted surgery. I was in shock; it has been so difficult to resign myself to the fact she was going to have surgery the good news didn't seem to register. We assured him we did not want surgery, but if she needed it, we preferred tethering. He requested we send Rhea's annual x-rays to him for the next few years. We discussed seeing Newton in San Diego as seeing the local ortho didn't seem to be worth the stress or "convenience."

They said over time her thoracolumbar single curve morphed into a double curve and that now she has three curves, her rotation is increasing and they think that not allowing her to carry a backpack will reduce/ remove the pain she is having in her back and leg.

She doesn't need surgery.

Rhea and I sat in the car and continued repeating the news to each other while we laughed and cried at the same time. How many people get this lucky?

[mariaf]

I am so happy for you!!! That truly is wonderful news!!!!

[Pooka1]

She doesn't need surgery.

AMom! So happy for your daughter and you! After all the hard work your daughter and you put into this, I am very glad she is sub surgical.

OMG. :-)

[3sisters]

Just catching up, happy to hear your great news! I wouldn't be surprised if just hearing good, correct information that alleviates worry wouldn't make her feel better physically, too!

[AMom]

Just catching up, happy to hear your great news! I wouldn't be surprised if just hearing good, correct information that alleviates worry wouldn't make her feel better physically, too!

We are so happy about the news! We had been trying to set up an appointment to see Braun at the same time we saw Drs ABC, but his office couldn't fit us in while we were back east, so they requested we email the x-rays. We celebrated all over again when he confirmed the x-ray readings!!!

We have an appointment scheduled for both of the girls to see Newton the week school gets out. They love San Diego so we'll plan a family vacation around the visit. Though we will bring Rhea's x-rays with us, we will have our youngest get new ones.

lol, the high school administration is making ridiculous demands right now because they don't want to provide a second set of books per Dr. Betz script. They want "updated" x-rays b/c Rhea might be "all better by now--it has been over a month since her last ortho visit...". They lost her sister's script from her ortho and want her to see the doctor now too. They added that, "It is very important the doctor put an end date on her script." I replied we didn't work with mediums and that I would provide another note next school year. My youngest has a genetic disorder that makes her lungs vulnerable and severe asthma so she needs to avoid the locker room because it is full of teens putting on perfume, hairspray, and other scented products. The pulmonologist said she can dress-out anywhere that doesn't contain those scents being sprayed so the school responded by offering the SAME locker room or dressing out alone, behind locked doors with two men in the back of a gigantic, ancient auditorium. Can you believe that it was necessary to bring in personnel from the district office to get this resolved? I was so embarrassed for them. District admin offered to transfer our daughters to any other school because these requests are simple to address and they observed the lack of professionalism too. We declined. Yesterday we received an extra set of text books and today my daughter received a locker so she can change with the band kids.

Wishing everyone a wonderful New Year!

A Mom

[AMom]

Rhea's head injury recovery has been sloooooow, but improvements continue to be noted. Her phenomenal memory is beginning to reappear and her comprehension levels are increasing. Even missing 3 weeks of school this year (a week at a time due to illness) she earned a B+ in engineering and A's in everything else. Her confidence is beginning to reemerge and she humming while completing homework and smiling again. I have been considering asking her if she is interested in her science project.

However, tonight I received a telephone call saying she fell about 6-7 feet, landing on her back and head. No matter the pain, even with tears falling, she has NEVER complained--not once, until tonight about pain. She says her back hurts (right shoulder blade to mid-back area, where the scoliosis bump is located), she has a mild headache, bit her tongue, doesn't quite remember what happened just before/during the fall, states "the breath was knocked out of me" and that she is tired (she does not appear exhausted or apathetic.) Her gait is good, pupils equal and reactive, speech clear, and verbal & physical responses are good. She hasn't any nausea, dizziness, confusion, loss of balance, or consciousness. If it weren't for the multiple concussions she has had over her short life and the blip in her memory regarding the actual incident I probably wouldn't be checking on her every hour while she is sleeping. I will take her to the medicenter tomorrow morning (asking questions of course) and schedule an appointment with her neuro on Monday.

My question is in regard to her back pain and AIS. Do I treat her back pain differently b/c she has scoliosis and the pain is specific to the raised area caused by the scoliosis? It is a 4.5 hour drive to her ortho's office and he hasn't seen her in several years. I guess I am asking if there is a general "If this, then that" response to a fall. FYI: She is not scheduled to see Dr. Newton until the second week in June.

A Mom

[Pooka1]

Hi AMom,

Sorry to hear about that fall. It sounds like she was back up to speed when that happened.

I have gotten some small sense of that it is like to deal with concussion... my co-author on a paper sustained a bad one even with a helmet riding on a bike. It was her third. She could not help with the paper for many weeks and couldn't even listen to music and was told not to think in her recovery.

Then my boss's daughter gets her foot caught in a stirrup, the safety stirrup does NOT break away (she is too light apparently) and she gets slammed into the jump standard. She was wearing a helmet. She was out of school for a few weeks.

If helmets can't save these people then what hope is there? Anyway...

I don't know the answer to your question about back pain. If she has no neuro symptoms associated with that area of the spine then I would think it was just soft tissue.

Maybe you can email Newton this question.

Good luck and nice to hear from you though sorry it is under these circumstances. Your girls sound wonderful and I am sorry life has been unfair to them.

[LindaRacine]

Rhea's head injury recovery has been sloooooow, but improvements continue to be noted. Her phenomenal memory is beginning to reappear and her comprehension levels are increasing. Even missing 3 weeks of school this year (a week at a time due to illness) she earned a B+ in engineering and A's in everything else. Her confidence is beginning to reemerge and she humming while completing homework and smiling again. I have been considering asking her if she is interested in her science project.

However, tonight I received a telephone call saying she fell about 6-7 feet, landing on her back and head. No matter the pain, even with tears falling, she has NEVER complained--not once, until tonight about pain. She says her back hurts (right shoulder blade to mid-back area, where the scoliosis bump is located), she has a mild headache, bit her tongue, doesn't quite remember what happened just before/during the fall, states "the breath was knocked out of me" and that she is tired (she does not appear exhausted or apathetic.) Her gait is good, pupils equal and reactive, speech clear, and verbal & physical responses are good. She hasn't any nausea, dizziness, confusion, loss of balance, or consciousness. If it weren't for the multiple concussions she has had over her short life and the blip in her memory regarding the actual incident I probably wouldn't be checking on her every hour while she is sleeping. I will take her to the medicenter tomorrow morning (asking questions of course) and schedule an appointment with her neuro on Monday.

My question is in regard to her back pain and AIS. Do I treat her back pain differently b/c she has scoliosis and the pain is specific to the raised area caused by the scoliosis? It is a 4.5 hour drive to her ortho's office and he hasn't seen her in several years. I guess I am asking if there is a general "If this, then that" response to a fall. FYI: She is not scheduled to see Dr. Newton until the second week in June.

A Mom

Back pain is back pain, and as far as I know, there's no difference in treating pain between people with spine conditions and those without.

[burdle]

Back pain is back pain, and as far as I know, there's no difference in treating pain between people with spine conditions and those without.

But oh how there should be a difference!!!

[AMom]

Thanks Folks,

The news on the head injury is looking good, the neuro believes she may escape without further impact. The family doctor said it will take some time for her back and neck pain to subside. She prescribed mild meds to help her sleep at night and told us to continue treating with OTC meds during the day. The doc will call tomorrow after receiving the labs, but doesn't expect to see any problems.

I am cautiously relieved right now and will be very happy tomorrow night (3 day window) when I don't see any new symptoms from the head injury.

A Mom

[Pooka1]

AMom, so glad to hear there will be no serious consequences fro this fall. But still so scary.

Good luck with everything going forward.