Sunday, September 7, 2014

It's Time to Try Something New

I would like to start off by explaining why I decided investigate some alternative medical treatment for Ellie. By no means am I unhappy with her Pediatrician, it's just that my instincts were telling me to dig a little deeper. Something just isn't right with her and it's time for a change. 

It started when I took her in for her 18 month appointment. Ellie had always been close to the 90% for height, and in the time between her 1 year appointment and 18 month appointment she only grew 1/4". She dropped to the 57th percentile, and it happened so fast.

I started researching, asking questions online, and paying close attention to her symptoms. I started hearing more and more about Dr. Erica Peirson. She is a Naturopath who is known across the world for her work with children who have Down syndrome. I even have friends in Australia who use her services. The amazing thing is, she's right here in Portland! How lucky are we? Anytime I hear about something more than 2 or 3 times I always take it as a sign to investigate it further. I knew it was time to set up an appointment. You can find her website here, it's full of great information:

Peirson Center for Children

Yesterday my mom and I took Ellie to see her. We were welcomed with open arms. She is absolutely awesome. She was so great with Ellie and I came prepared with a giant list of questions. She answered all of them before I even had a chance to go down my list. I used every second of our 2 hour appointment. And she is smart, I mean SMART! She knows the ins and outs of what that extra chromosome means for our children. Some of the info she explained went right over my head but one thing that was absolutely clear to me is that she is the right person to treat Ellie. 

Dr. Peirson believes many people with Down syndrome have thyroid issues. I have thyroid issues, my Grandmother had thyroid issues, so poor Ellie is stuck with my genes. Thyroid problems can be genetic. I had Ellie's blood work ran before the appointment and according to typical lab results Ellie's numbers were "within range" but with a TSH of 4.4 and some other borderline numbers, she is definitely treatable. Here are some of the symptoms I've noticed with Ellie. I'm hoping some of them are improved with thyroid medication:

  • She stopped growing
  • Mottled skin
  • Cold hands and feet
  • Constipation
  • Tongue protrusion
  • Swollen belly
  • Yellowish skin
  • Tiny feet!
  • Delayed tooth eruption (5 teeth at 20 mos)
  • Dry skin
  • Puffy eyes
  • Low iron levels
  • Low muscle tone
  • Reflux (she is a spitter-upper, still!)
  • Family history of thyroid issues
  • Delayed fontanel closure (still has a soft spot)

I reviewed our current list of supplements with Dr. Peirson and she was fine with what we were doing so far: Nutrivene at a half dose (a good multivitamin is a good idea!), Raw Probiotic, DHA with D3, Choline, Ginkgo Biloba and Acetyl L-Carntinine, these last two I'm not totally sold on yet, so I'm still only giving her a sprinkle for now.

Dr. Peirson feels it would benefit Ellie to be on a natural desiccated thyroid pill for hypothyroidism. We will be picking up her prescription today and starting her on a low dose. Additionally, Dr. Peirson felt treating her low iron was crucial and that we should add Folinic Acid, Vitamin C, and Vitamin E. I will be adding these after Ellie's thyroid #'s are looking better. We will be reevaluating her bloodwork in 4 weeks. I always slowly introduce any new vitamin or supplement to make sure there are no adverse side effects and so I can be sure each one works for her.

I will be updating this blog with the results once we've given the thyroid medication a try. Some other moms who have worked with Dr. Peirson found that their child did so much better when their thyroid was treated. One mom had marked results in 3 weeks in her son's physical development; he went from being wobbly and barely walking, to getting up and walking across the floor like a boss. His mom has video to prove it! His speech improved too. Another mom shared that her daughter grew 2" and gained 3 pounds in a little over 2 months. This is so reassuring to hear! Below is a link to the really informative article that Dr. Peirson wrote regarding Ds and Thyroid:

Thyroid Hormone Metabolism in Down Syndrome

Another really useful article I found was by Down Syndrome: A Day To Day Guide, it was the original post that opened my eyes to possible thyroid issues. I appreciate how she explains how to read thyroid results in the section titled "Confused About Lab Results?" I will post it here for reference:

Thyroid and DS Go Hand In Hand

I want to mention again how I believe every child is different. What Ellie needs isn't necessarily what the next child needs. I rely heavily on my gut instinct when it comes to giving Ellie vitamins and supplements. Some kids may not need anything, their thyroid may be fine and they may be better at eating more nutrient dense food. Ellie is still eating baby food and is so picky, so I feel good about giving her some extra help with vitamins. Also, finding a doctor who is like-minded is huge. Dr. Peirson wants our kids to be the absolute best they can be, and I am so grateful I found her. 

Ellie's team is rockin', we now have Dr. Peirson on our side (thank goodness), we have Ellie's wonderful Pediatrician Dr. Craft who is so supportive of my crazy ideas, her Early Interventionist Diana who has been a constant support and has been with us since Ellie was 6 weeks old, our PT Elizabeth who is absolutely amazing, and our new OT Susan who is coming to the plate with some really awesome tips. I truly feel like Ellie is going to shine even brighter than she already is. Oh and I can't forget to mention Dr. Pinter at OHSU's Down Syndrome Clinic. He is a rock star! I am grateful for the team we have built for our girl. Watch out world!!

UPDATE 2017: Ellie is now 4 years old. We have since taken her off supplements for now and she is only on thyroid medication. We are in the process of reviewing blood work with her team of doctors to confirm if there is anything she is lacking. She is now eating more nutrient rich foods and is gluten and dairy-free (cow's milk) and still eats cheese and yogurt sometimes. She is in preschool and will be starting pre-k at her big brother's school in the fall! 

So for this week's song I'm actually going to post a video. This video was released when Ellie was around 9 months old and it made me bawl big ole' ugly tears but they were happy tears. And now whenever I hear this song I think of this video, and of our Ellie, and how I was a cheerleader and how she could someday be one too, but only if she wants to... of course! :) 

Monday, September 1, 2014

I'm a Third Generation Special Needs Mom

I've been thinking a lot about this whole "special needs parenting" business lately. I've had friends say to Jesse and I that they don't think they could do what we do. I catch the tilted head smiles of mom's at the grocery store, behind those compassionate eyes I can feel them saying "I'm so glad it's you and not me." But you know what? We love our kids unconditionally just like every other parent out there. We aren't doing anything extraordinary. 

I'll never forget the day it happened. A friend had sent me a Huffington Post article called 7 Things You Don't Know About a Special Needs Parent. It talks about how we feel tired, alone, scared, and a number of other things. As I clicked on the link and started to read I related to some but not all of the points. Then I thought, "wait a second... I'm a special needs parent!?" Ellie was already a couple months old and I never made the connection. But then I realized something pretty amazing. I had just joined the ranks of two other pioneer women in my family. My mom and my Grandma Hattie were also special needs mamas. And they were damn good at it.

I would like to tell you a little bit about my awesome Uncle David. He was born in 1947 and was the baby of his family, with two big sisters and 3 big brothers. He was an absolutely gorgeous boy. Our Luke inherited his beautiful brown eyes.
Uncle David
Without going into too much detail I would like to share the story of what happened to my uncle. It was Christmas in 1953, David was 6 years old. He asked his parents for a new bike for Christmas. They lived in the hills of Oakland, and didn't feel comfortable buying him a bike just yet, "maybe when you are a little older" they told him.

My Grandparents
My mom said that every birthday she and her siblings would receive $5 as their gift. David's 7th birthday came along in April and he was determined to have that bike. He went over to the neighbor boy's house and bought his bike for $5. What David didn't know was that the bike had no chain. As he coasted down the hill, his attempt to stop the bike was unsuccessful. He was hit by a car, and his head was ran over. David's life, my mom's life, my aunt and uncle's lives, and my Grandma and Grandpa's life was forever changed in that instant.

My son Will is 7. I can't help but think of my Grandma and Grandpa and envision the gut wrenching pain of almost losing your child, then to have to come to terms with the fact that your child will never be the same. It's something no parent should ever have to face. My Grandpa passed away from cancer when David was 12, so my Grandma raised him alone from then on. I never sensed an ounce of bitterness or anger from my Grandma. She was an amazing and strong woman in my eyes.

Me and my Grandma Hattie, I was probably Ellie's age here.
David and his dad.
David grew to be a gentle and loving man. He had a huge heart and loved animals, movies, and his great nephews Will and Luke. He had a laugh that was booming and it always put a smile on your face. He was tall, at 6'6" with a signature walk. He was known around his town of Yamhill. At first people would shy away from David, with his loud voice and awkward gait. But after living in Yamhill for a couple of years the people in town grew to know and love him. He lived with my Grandma until her death in 1996, and stayed in that same house until his death in 2010. We loved our Uncle David, and I miss him so much.
Mom and her little brother
David and his Great Nephew Will
My brother Danny was born in 1965. When he was 6 weeks old he had surgery on a hernia that was coming out of his belly button. My mom thinks that he was under the anesthesia too long, because when he returned home he was a different baby. He was slower, lethargic, he had changed. 

At age four he had a horrible bout of chickenpox. The spots were all over his body, inside his mouth and appeared to go down his throat. At one point he stopped breathing and turned blue. My dad had to perform CPR and was able to bring him back to life. It's unknown if the anesthesia caused my brother's delays, or if it was the lack of oxygen to his brain when he was four. My parents were never able to get a solid reason from the doctors.
Mom and Danny
It is so interesting talking to my mom about my brother, or her brother David. My mom dealt with the school systems, fought for Danny's education, promoted love and inclusion and acceptance. I never really paid attention to it though, it was just threaded into my existence. I have never felt burdened by him, ever. My brother is my brother. He is awesome, funny, lovable, and an awesome uncle to our kids. Now at age 49 he is crazy busy with church, President of a non-profit group for people with intellectual disabilities, volunteers, has tons of friends, and is an all around busy dude. He also lives on his own and is doing great, he's a role model for his niece Ellie that's for sure. His 50th birthday is coming up in April next year and you better believe it's going to be one epic party! 

I was born into this family, with my Uncle David (who we called "UD") and brother Danny as an integral part of who our family was. So I think when Ellie was born I had the moments of panic and fear of the unknown, but the fear was dulled. I knew we would be OK. I love my daughter with my whole heart and I am going to fight for her, and my boys. Just as my mom and Grandma fought for their kids, all of them. 
Danny and Uncle Dave
I guess the point I'm trying to make is that there are no guarantees in life. We don't know what the future holds for our children. We love them, guide them and help them spread their wings. I'm so grateful to follow in the footsteps of these two women who have helped to shape who I am as a mother. I can only hope to do as good of a job as they did. Special needs or not, I think every mother does their absolute best for their children. There's nothing special about it, it's just what we do.

This week's song came to me today as I was cleaning up the house and trying to decide if I wanted to post this or not. I have a lot of blog posts just sitting in there in "draft" form, because I don't have enough courage to post them. These lyrics spoke to me:

My beloved one
My beloved one
My beloved one

You were meant for me
I believe you were sent to me
From a dream straight into my arms