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
- 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! :)