Friday, March 11, 2016

A Week in Highlights

We're exhausted! Last week's appointments took a toll on us and by the time this week started we were still playing catch-up on sleep and rest, but there was not time for it. We did attempt school work early in the week, however it became evident by Wednesday that Amber was too exhausted to do much of anything.

Positive Highlights:
Amber had a great day at homeschool co-op. Lately she's been so tired that she can't enjoy it, or she lets teenage angst get the better of her. This was a good week.

Amber's outgrown clothes have been mostly sorted and packed up for a friend to try. Amber now has sufficient clothing for the Spring weather. Shoes have not been touched, though.

We were able to get an appointment next week with the dietician to help with balancing the digestion problems and needed nutrients.

My youngest nephew registered for Kindergarten this week! It's hard to believe he's that old, but then again Amber is preparing for high school. Amber has remembered since this cousin was born that when he started Kindergarten, she would be in high school.
Why, yes, we did eat at Cracker Barrel twice this week. Even at the same table and she ate the same scrambled eggs and toast both times.
Appointment Highlights: 
Physical therapy: The therapist worked Amber hard and wore her out completely, still it was a good session where they worked on stabilizing her knees more. Amber is not getting the nutrients she needs, so her energy levels aren't bouncing back. We also returned her orthotics, again. The left foot was still wrong and so they took a new impression of the left foot to try and rectify the issue. Amber desperately wants the orthotics, but when it digs into her arch and causes a limp, that's a problem.  

GI Doctor: Amber wasn't immediately and overly sick after the gastric emptying scan last week, and so Amber was afraid it wouldn't show much useful data, like so many other diagnostic tests. She did not need to fear though. The gastric emptying scan showed her stomach is processing twice as slow as it did a year ago during her first scan. The diagnosis of gastroparesis is correct. Amber started a two week course of Augmentin on Wednesday. Yes, it's an antibiotic, however one of the side effects is that of a stomach stimulant. If you've ever taken it without a slow tummy, you probably noticed things moved much quicker.

IF Augmentin works without making Amber sicker, unlike the erythromycin which was an awful experience, then we wait and see how long her stomach continues to function. The GI doctor doesn't expect the stomach to work for long after Amber is off the two weeks of Augmentin. Thankfully, the doctor has a plan that has been effective for other patients similar to Amber: a cycle of Augmentin, followed by Reglan, and then a few weeks break; continue this pattern for six months. The treatment should keep her stomach working during the six months and hopefully for a while after. 

Tired and waiting for her aesthetician. Plus an adorable Biscotti. He's been cuddly all week.
Pediatrician: Oddly enough the pediatrician still went through the motions of a fourteen year old checkup earlier today. I'm somewhat humored by him doing all the normal stuff. From his stand point, excepting everything going on right now, Amber is healthy. We laughed. But at least he found no new concerns.

The pediatrician does want Amber to see an orthopedic doctor for a consult on the scoliosis, kyphosis, and lordosis she has as a result of EDS. PT discovered the back issues during her initial evaluation last year, and now the pediatrician wants her watched by an orthopedic. 

The whole appointment felt unnecessary, although not unpleasant. If it keeps the doctor happy and more likely to continue as the excellent team player he has been, then it was worth the visit. He actually told us, "I'm on the periphery of the periphery for her care, but let me know what you need from me. "  Okie, dokie. We will.

School Accomplishments: 
It's pathetic; you have been warned.
  • Multiple sessions of P.E., which includes physical therapy
  • 2 blocks of math, but only one lesson. Her brain was very slow this week.
  • 1 block of Greek morphemes vocabulary. It was done in the car and at the hospital. 
  • Flute lesson and practices. 
  • Homeschool co-op classes, and yearbook class homework prior to class day. 
  • One block of writing, but it really was only an introduction to a review curriculum she is going to use. 
  • 1 block of religion: watching the first part of The Gospel of John.
  • 2 rather large blocks of stop motion video creating with her dad last weekend. 
Schoolish type stuff: At the hospital and stop motion with her dad.
The Weekend:
The plan is for Amber to rest. Fred and I have quite a bit of Spring outdoor work to do on the house and yard, assuming it doesn't rain. I also need to finish decluttering spaces around the house and donating the piles in the basement.

Next week we only have three medical appointments and an entire day free. I think we will go clothes shopping for both Amber and me on that day. It's supposed to be warm and sunny on our free day and we need some time outside in that kind of weather!

Happy Weekend!

In case you missed these posts:
-Pi Day Activities - Don't forget, it's Monday!
-{Review}Grapevine Studies New Testament Overview Part 1

Linking With:

Weekly Wrap-Up   photo purpFFBut_zps970d6cbe.png Homegrown Learners


  1. I don't think you guys did bad at all on school work considering all the rest of the week. I hope Amber can be totally lazy this weekend.
    Blessings, Dawn

  2. I didn't feel the schoolwork as pathetic at all. It can not be easy balancing how she feels with all the appointments, life and then schoolwork too. If you factor in everything she's learning about the human body and how it functions at every appointment she goes to you all cover A LOT of science too.

  3. Amber is still smiling despite all her GI issues! I'll be praying that the doctor's plan is successful. I also hope they get her orthotics right this time! It seems a bit ridiculous that they keep screwing that up. I hope you all get outside for sun and fresh air this week, too!

  4. What were her GES percentages?

    I have been reading your blog for a long time, but don't comment. My daughter has all the same medical issues. I could have told you Amber had EDS (and therefore gastroparesis) before you found out :) My daughter responds well to periactin for gastroparesis treatment as well. We're about a year ahead of you on this journey with treatments and whatnot. My biggest recommendation for EDS is that strong muscles to stabilize joints is VITAL! And for gastroparesis, you can get a huge amount of nutrients in smoothies, which move through the system well. My daughter's gastroparesis is severe. At the end of the scan, only 6% of her solids had left her stomach - 94% retention at 3 hours. We rely heavily on smoothies for proper nutrients - averaging around 1,000 calories per smoothie.

    1. Oh my, your daughter's gastroparesis is severe. I'm glad you've found ways to alleviate it. I'd love to hear your advice on handling all the stuff that comes with EDS.

      I'll have to look up the GES in Amber's paperwork (I'm mobile at the moment). We work hard on her muscles to help stabilize the joints. Her PT just wishes she would stop growing :-) yesterday she dislocated a thumb (first time on that one) and subluxed the left side ribs. We thought the ribs had stabilized, so back to emphasizing core strength.

      We meet with the dietician this week because Amber isn't getting enough nutrients. Between the gastroparesis and fructose malabsorption, there isn't a lot she can eat. Most smoothies don't play nice with Amber's intestines because of the fructose in the fruit or veggies. I did try a banana & chocolate PB2 smoothie last week, but it didn't go well. We might try it again now that she's had a few days of augmentin. Amber says it doesn't feel like it's doing much for her, but I think it might be.

  5. Well, core strength, core strength, core strength!!! Once that is super established, you can work your way out to other joints from there. My daughter works religiously on core strength. Every day.

    1. We had to start at the other joints because she was dislocating them regularly. Her core is doing a lot better at the moment; not perfect, but better on the rib subluxations. The knees and hips are still a huge problem though. At least her shoulders are a bit more stable. They have an overall plan for the weekly PT, but alter it if she has a problem with specific joints doing the week.

    2. I hope that you see a massive difference once you get the orthotics squared away. We certainly did! We have done weekly PT since July of 2015 and her strength is just remarkably better! She doesn't have near the dislocations that she used to have (like once a week or two, not once a day). It does take a good chunk of time every day :/ Worth it though! Once we were set with the orthotics, she was able to start walking without her knees crossing over each other :) That alone took away the majority of her hips, knees, and feet pain and dislocations!

    3. We got the orthotics back on Monday and they appear right this time. Amber loves them. She still building up time in them, but is so happy to have them. They immediately have helped with her scissor walking and toeing in. Her knees still hit each other though and PT is working on it. I'm so happy to hear that PT has worked for your daughter! It's heartening to know we are on the right track. Amber has had weekly PT since August of 2015 and does her at home exercises everyday, as well as a specialized yoga program for relaxation. Sleep is a difficult thing for Amber's body. But she doesn't dislocate her shoulder daily either and her ribs don't move constantly anymore. They had been so bad that she couldn't relax to sleep because her ribs moved then. The hips are still quite unstable though and causing problems all the way down from there. The orthotics are going a long way to help with that problem though.

      Do you deal with sensory processing disorder too? Amber needs to start OT for that again. I'm just waiting to hear on scheduling.

    4. Oh, gracious, yes. SPD was actually her first diagnosis back when she was 2. She has been in OT off and on ever since. Mostly on. She's an avoider and had crazy high anxiety for years until we took the plunge and put her on Zoloft. That made a world of a difference. She also doesn't sleep. That went way back to infancy - she would be awake for days. Literally, days. EDS diagnosis came from the geneticist when she was 7 after she had fractured the growth plate in her knee twice and her ankle once due to activity while those joints were dislocated. The windfall of other diagnoses came after that. We just work each piece of the puzzle into the system as we go. Thankfully, we're in between Cincinnati and Columbus and have access to the top doctors in the country between the two! We love our doctors. They're insanely brilliant, and it's somewhat encouraging to know all their other patients have the same system failures. So, nothing is a surprise to them and we have a great network. It helps to know we're not alone :)

    5. It turns out Amber's first diagnosis was the SPD too, we just didn't know there was more to come and thought that was all she was dealing with until the GI issues first started. She went through sensory OT when she was younger too. We're lucky living in St. Louis with Children's Hospital and Washington University here that know quite a bit about EDS. The dysautonomia is not as well known, but there is a great autonomic neurologist who educated himself and started an autonomic institute here because of the number of cases he was seeing. We thankfully got in there because the GI doctor knew what Amber needed and got the neurologist to take Amber. It all sounds so crazy to people who are living with it because of how many systems are affected. It's good to hear from someone who understands as well.

  6. For nutrition and gut health - fats, fats, fats!! I don't typically have a very high opinion of dietitians because they typically take a very governmental mindset approach of dietary guidelines and I think the government is horribly wrong about what we should be eating. We stick to a mostly paleo diet. It sounds like she could use some gut healing. Thankfully, we don't have any fructose issues, and she is happy with the same smoothie every day of her life. Our smoothies contain cashew milk, sunbutter, cocoa powder, coconut oil, a frozen banana, half of an avocado, I juice greens and freeze the juice in ice cube trays and she gets 2 cubes of that in there, and a GOOD chocolate protein powder. It tastes just like a chocolate milkshake. So that gets us through at least one meal a day.

    Stick with the orthotics. We saw a huuuuuuge difference once we got them. And, find a med cocktail that works for the gastroparesis and stick with it. Every body is different so it might take some trial and error. Give it time. You posted a while back about a gastric stimulator and I was like "woah! Easy there!" That really should be a last, last, last resort! We're 18 months into severe gastroparesis and the stimulator has not even be played with as an option yet - and for 6 months, she was throwing up 20-25 times a day. Her meds have been working well lately, but she wants to try a procedure to give her back some normalcy. She goes on Friday to have Botox injected into the pyloric sphincter. It should allow her to have 2-4 months without medication 3 times a day, but we'll see! It's our first time trying this treatment option.

    1. The problem with fats is that she's not digesting them. She also has a problem with her gallbladder requiring scans every 4-6 months, so fats are really a no-go at this point. Because of her dysautonomia, she's on heart medication and a lot of drugs do not play nice with the heart meds. We are severely limited in what she can take for the gastroparesis. That's why they were talking about the gastric pacemaker. The GI doctor knows about all of her other conditions and the complications associated :)

    2. The treatment meds for gp are low dose antibiotics, and those work well with heart meds. We're on those too. It can take 4-6 weeks before she notices a difference. Hopefully it won't take that long for her!! A short term tube placement to allow her intestines some healing would be a less drastic option. The top location for the gastric stimulator is at Nationwide in Ohio.

    3. Botox injections are also a great option that won't require any medications!

    4. She's only on 14 days of Augmentin, but has seen some improvement already. It's nowhere near what it should be, but improvement. Thankfully, the GI doctor also has other patients with EDS, Dysautonomia and gastroparesis, so we aren't her trial patient. :)

    5. And yep, they told us Nationwide in Ohio is where we would go if she got the gastric pacemaker. But that won't be until the meds stop being effective. Amber has a history of building up a resistance to medications quickly.