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| Contrary to what it looks like, Ellie is not picking my nose! |
ELLIE'S GI UPDATE:
In October, Ellie got moved from twice monthly appointments with the Gastroenterologist, to once every 3 months! At the last visit, we reviewed all of Ellie's lab work-thyroid panel, metabolic panel, celiac screen, CBC, lead, vitamin D, and a bunch of IgA stuff. All of which was thankfully normal! However, she had continued to lose weight. I requested an Upper GI in hopes of officially ruling out celiac disease, which is something that is more common in people with Down syndrome. The blood tests can come back as false negatives or false positives repeatedly so the upper GI is the gold-standard for a definitive diagnosis. The GI doc agreed that if she is still losing weight in 3 months, he would do the Upper GI.
The Good News:
Bear started to eat! A LOT! Like 2 croissants, a cup of raspberries, and a zone bar in one sitting. She has even eaten breakfast a few times. We still have days where she may not eat more than 200 calories, but they are few and far between. I am going to have my Chunky Chicken back!
We seem to have a successful bowel regimen for Ellie. We are continuing with the Miralax and are administering senna for 2 weeks on and 2 weeks off. Senna is a stimulant laxative, as opposed to osmotic, so the bowel can become dependent on it. This is why we do not do it everyday. I was really worried that a full 2 weeks on would trigger dependence, but she seems to do fine on the off weeks.
Liver Scare:
Just when things seem to be going along fine, Ellie freaks us out. For 3 weeks, Ellie's stools were super pale. Think flesh-colored. Clay-colored and white stools can indicate a problem with your bile duct or production of bilirubin. Bile is used to break down fats and gives stool its brown color. A liver or gallbladder problem can present as pale or white stools. After a full on liver panel and an abdominal ultrasound, we learned that Ellie has abnormally small, but normal formed kidneys. Her blood work came back normal and her liver, spleen, gallbladder, and pancreas were normal!
We do not know why her stools were they way they were, but I am positively relieved that she doesn't have any liver problems!
MY BACK/HIP PAIN, ARTHRITIS, SCIATICA, AND HAMSTRING INJURY:
Back in July, I managed to tear my hamstring and obturator externus by falling a whopping 6-inches to the ground. I was on crutches for about 3 weeks and in some serious pain. My back pain, which had been improving, took on a downward spiral after this injury. I felt like I was back to baseline, but this time with the posterior of my thigh and groin on fire. My Dr. K had me do a trial of Neurontin to help with nerve pain. Let's just say that it really does help with nerve pain, but it can also headaches, fatigue, and dizziness. I found myself with an incapacitating headache and nearly passing out. I tried to push through and see if the side effects would subside, but they did not. Needless to say, Neurontin was not a good fit for me.
It was finally determined by my physical rehab doc that I would need a 2nd opinion (good thing I already had one lined up!). There was pretty much nothing more that he could do (already tried pain management, TENS unit, PT, steroid shots, chiropractic care which made it worse). As a farewell gift, he placed a steroid shot into my right sacroiliac joint and another into my ischeal tuberosity bursa--think the top part of the hamstring near your butt.
Miracles do occur! I was told that the SI shot would probably do nothing as only 1-3% of people with back pain have it stem from their SI joint. Um, he was wrong. I had searing nerve pain all the way down to my toes when he injected the steroids. To me, this means it worked. My pain improved in a matter of 5 days. My bursa shot freaking cured my hamstring immediately. I could walk! I have lost a lot of hamstring strength and flexibility and I am struggling to regain it. Honestly, I wonder if my hamstring will ever be back to where it was before my fall.
A few weeks later, I met with Dr. S, a neurosurgeon. He reviewed my MRI and said he saw the following:
Compressed discs with herniation into the spinal column L4-L5 and L5-S1
Connective tissue tears in the disc L4-S1
Bony deformities and enlargement of the lumbar facets joints L3-S1 (aka facet hypertrophy)
Minor nerve impingement due to the enlarged facet joints decreasing space for nerve movement.
At this point, I do not need surgery. Whoooohoooooo! Actually, for my issues, there isn't any type of surgery that would help me. I sort of figured this and I didn't think my pain and activity limitations were severe enough for surgery anyway. If I start to have significant nerve problems, he can file down my facet joints. Oh fun. He also told me that I will always have pain and it will get worse as I age. He is just full of sunshine and rainbows! Dr. S did say that since the herniations are acute injuries, the pain from that will subside in a few months. Until then, I am to build up my core muscles through pilates. Good thing I have been doing PiYo. Abs of steel, baby.
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| My favorite stretch for my hip flexors |
I just completed the 60 days of PiYo which is a combination of pilates and yoga. The Lower Define workout really helps my back and hip. The Warrior poses and Pigeon bring the most relief. I am able to sit for longer periods. For the last month, I have been able to drive Ellie to her horse therapy and dance class without excruciating pain. I am very functional most of the day, but then I am pretty sore by the evening. At night, I have a hard time sleeping. Still, I am much happier, stronger, and less depressed.
Addendum: November 18, 2014
I think I jinxed it all by writing this post.
For the past few days, my back has not been all that great. I am super stiff in the morning. As the day goes on, it starts to hurt so that by bedtime, I have trouble sleeping due to pain. It is not unbearable, but it is enough that I put a call into my Physical Rehab doc. I imagine it will be several days before I hear back. Until then, I am having lots of intimate relations with my ice pack.
Most likely because Ellie is eating again, she is all backed up. We double her Miralax dose at the end of last week. Exciting news: the last two days, Ellie requested to sit on the potty!
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