Tuesday, October 18, 2016

Down Syndrome Awareness and Advocacy Month Day 18: Fight for Inclusion

Let me tell you, the story below puts my stomach in knots. We are a few years away from Jackson going to kindergarten, but I am already preparing myself to have to fight for his right to be in a general education classroom with his peers. Somehow, although it's the law, school districts still justify keeping children with special needs away from their peers for most or all of the day. It is obvious that Jackson CAN learn, but will others believe it and continue to foster his learning if it doesn't fit neatly into the schools' and teachers' plans?

The family in the story live in a neighboring school district from ours, and they are currently in due process with the school district with the hearing going on throughout this week. They are fighting to have her daughter in mainstream classes for kindergarten! It shouldn't be this hard.

I am preparing myself to be Jackson's advocate, and I am hoping my posts over the next day or so about inclusion will others more aware of why doing so is still necessary and important.

Family Fights Tomball ISD To Include Special-Needs Daughter In Mainstream Classes

Monday, October 17, 2016

Down Syndrome Awareness and Advocacy Month Day 17: Starting the Conversation Early

Another way to change the conversation is to start having it early with children so that by the time they are school age and even adults, the stigma and fear is no longer a part of the topic. 
When they are very young, most children won't even think twice about the differences in their peers, so it might not be something to bring up. Let it come up naturally. 
When they do start to ask questions, consider the age of the child asking. Young preschool and elementary school-aged children probably don't need a detailed explanation involving extra chromosomes. An explanation that their friend has something called Down syndrome and that it causes them to learn differently and/or causes certain things to not come as easily may be all it takes. 
If a child asks "What's wrong with" their friend, it's important to address that there is nothing wrong with the child who has DS. If they ask this in public about a stranger, it is easy hush them through our embarrassment and quickly remove ourselves from the situation, but this reaction only stresses the child's feelings that something is "wrong." Instead, if possible, talk to the parents of the child and the child. Our children learn by watching, and if we avoid interaction with people with different abilities, this implies that there is something to be uncomfortable about. 
It's important to have a discussion about how we all have differences and that these differences make us special and unique. However, helping the child focus on the things they have in common (they both like to read books, color, play tag, listen to music, etc.) with their friend will remind them that their friend is more alike than different. 
I so appreciate those who have contacted me about this topic and who want to "get it right" when talking with their children. The fact that you care enough to want to find out more already shows you're on the right track.
Here are several books for children that discuss Down syndrome:



Down Syndrome Awareness and Advocacy Month Day 17: How to Change the Conversation

A few days ago I wrote about the need for a change in the conversation that occurs between medical professionals and parents receiving a new diagnosis, but how do we go about facilitating that change?

For parents who have received a diagnosis, one way is to let your doctors know what they did right and/or wrong during the diagnosis process. The #DearDoctor campaign through DSDN is helping give moms a voice and the courage to do this.  This link discusses how you can write your own letter:

http://www.dsdiagnosisnetwork.org/birth

For any mother who feels passionate about this topic either from personal experience or from knowing someone who has gone through it, you can also share information from DSDN with the medical professionals with whom you have contact. You can request several different types of information (free of charge) to share with medical professionals and/or therapists.  I did this last March 21 for World Down Syndrome Day. I took blue and yellow ribbon cookies, DSDN materials, and copies of the book The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood by Jen Jacob and Mardra Sikora; and Jackson and I visited both my OB and his pediatrician that day. I also recently shared DSDN literature with the genetic counselor we have worked with during this current pregnancy. She and I had a wonderful conversation about how to turn sharing a diagnosis with a family into a more positive experience.

Request the materials here: http://www.dsdiagnosisnetwork.org/local-support

Finally, the change in conversation needs to go beyond what happens between doctors and parents. We can help change society by not being afraid to discuss Down syndrome with children. My next post will focus on some ideas on how to talk about Down syndrome with children who may have questions.

Saturday, October 15, 2016

Pregnancy and Infant Loss Remembrance Day- Oct.15

"The other night, dear, as I lay sleeping
I dreamt I held you in my arms
When I awoke, dear, I was mistaken
So I hung my head, and I cried."
-from "You are my Sunshine"

October 15 is Pregnancy and Infant Loss Remembrance Day.

Today I stand with all my friends who never got to hold their babies or whose babies left them too soon. 💗💙

Friday, October 14, 2016

Down Syndrome Awareness and Advocacy Month Day 14: Changing the Conversation

Two days ago I shared a letter I wrote to the doctor who delivered Jackson's diagnosis. Our experience highlights an all too common occurrence where new or expecting parents are greeted with negative words when describing not only their child's diagnosis, but also their child's future.

There needs to be a change in conversation.

Instead of discussing a mother's "risk" of having a child with Down syndrome, an easy switch of one word could take away much of the negative connotation. While it is a doctor's responsibility to discuss this topic with parents, by using the word "chance" instead of "risk," the inherent negativity is diminished.

Instead of handing parents a long list of things their child may never do, doctors should become more current on the research showing all things that ARE possible for people with DS.

For instance, more and more adults with DS are living semi- or fully-independently. More are able to get their driver's licenses. More are attending higher education programs. In fact, did you know there are over 200 college programs for people with intellectual disabilities?

Doctors also often give outdated information regarding our children's capacity to learn. Parents are often told their child with DS won't be able to read. While our children do face some challenges educationally, they are strong visual learners and, when taught from an early age, often learn to read quite well.

In fact, we have been working on sight words and letters with Jackson more consistently this summer, and he has already picked up at least 15 words that he can recognize by sight. While he doesn't say all the words yet, he shows he knows them by signing. He also knows many letters by sight and can make their sounds. And I know other children around Jackson's age who can name and label all fifty states on a map and the planets in the solar system! I think I need to step up our game!

I understand that doctors need to inform of the challenges that can come with a diagnosis of Trisomy 21, but my hope is that the conversation they have with new or expecting parents changes to become more balanced and updated to also include the amazing things our children can and will do.

Thursday, October 13, 2016

Down Syndrome Awareness and Advocacy Month Day 13: To My Fellow Rockin' Moms

Today's post is dedicated to the moms I've met thus far who are also on this journey- moms who have become my friends, my family, my sounding board, my encouragers, my tribe.
There can be a certain loneliness that comes with being a mom of a child with special needs. The therapies and doctors appointments can fill the schedule, and sometimes you feel like you don't have much to contribute in conversations with your friends who are moms of typical kids. The medical terms, different abbreviations, new therapies you want to try, etc. that you have swimming around your brain don't always transfer well into small talk. 
However, I didn't realize that with Jackson's diagnosis I was also gaining a "tribe." A tribe of moms whose children have the same diagnosis and who also feel the joys and frustrations, who celebrate with us when we achieve a milestone and allow us to rant when something just isn't clicking. They get it like no one else can. 
This is something the doctors don't tell you. Their lists of what your child may or may not be able to do do not include how your child will bring you together with some of the most incredible and inspiring people you've ever met. You may meet a new best friend right down the road, see some of them once a year at a retreat, or only ever "meet" some of them online- regardless, these moms become a family you didn't know you needed. 
So to my fellow Rockin' moms, thank you! Thank you for listening, for cheering, for crying, for praying, for sharing. I wouldn't want to be on this journey without you!

Wednesday, October 12, 2016

Down Syndrome Awareness and Advocacy Month Day 12: Dear Doctor


I wrote this letter as part of Down Syndrome Diagnosis Network's Dear Doctor campaign, where mothers write a letter to the medical professional who delivered the diagnosis of Down syndrome. The letter is featured today on DSDN's website at the link below.

Dear Doctor,

I do not remember your name, but I will never forget your first words to me.  I had just given birth to our first child, a beautiful baby boy, who had arrived four weeks early. His surprise arrival is actually the only reason why you and your neonatology team were in the delivery room. I had had a healthy pregnancy and a negative Noninvasive Prenatal Test (NIPT), so I think we were all expecting a fairly uneventful birth.

Minutes after Jackson was born and before my husband or I even had a chance to hold him, you turned to my OB and asked her a question. She was still working on me at this time, and I recall you saying something about Trisomy 21. She responded with "They had a negative test." I am not sure if you thought I could not hear you or if you thought the epidural had made me too loopy to understand or if you thought maybe, as a 37-year-old first-time mother, I would not know what Trisomy 21 was, but I assure you- none of the above were true.  I quickly jumped into the conversation, adamantly repeating what my doctor had said to you.

This is when you turned to me and said, "I hope I am wrong, but your son is exhibiting several markers for Trisomy 21 or Down syndrome." 

I doubt you knew the power you wielded at that moment or how those words will forever be etched into my memory. If you had known, I have to believe you would have chosen to handle this moment differently. In fact, because how a doctor delivers a diagnosis of Down syndrome has such a lasting impact on parents, the American Academy of Pediatrics Journal actually has recommendations for delivering a birth diagnosis to parents.

One of these recommendations states how parents should be told together and should have had time to meet their child. Though four weeks early, our son was not in any immediate distress; you easily had the time to make your observations silently, swaddle him, return him to us, and then privately discuss your suspicions with my OB. 

Instead, by sharing your observations in the way you did, you robbed us of something we can never get back. We will never have that moment where we looked at our son with the pure amazement all new parents should have the opportunity to feel. Instead, the first time I held my son swaddled in that pink and blue hospital blanket, I was searching his face for the "markers" you mentioned. Instead of basking in his beauty (because he is beautiful) and feeling my heart fill with the kind of unimaginable love only new parents understand, I felt a cold, dark fear take residence in my heart. 

Part of this fear came from my lack of knowledge about Down syndrome, something with which I had had little experience. However, your words also contributed to the despair I felt. By saying you hoped you were wrong, you told me that whatever you said next was something negative, something undesirable. Another recommendation from the American Academy of Pediatrics asks that doctors use positive language and refrain from offering opinions about the diagnosis. Yes, a diagnosis of Down syndrome is life-changing, but your words made my husband and me feel like those changes would all be negative. Your words did not tell us that my baby was still perfect. Your words did not reassure us that our baby deserved to be here.

Thankfully, I had family members and friends who quickly connected me to other mothers on this same journey. Their words of congratulations reminded me that our son was still the baby who had grown inside me for almost nine months, still a baby worthy of celebration. Their words of encouragement motivated me to learn about all the amazing things our son will be capable of doing. His diagnosis and how we initially received it will not define him.

In writing this letter, I hope that your approach to future diagnoses changes so that it allows families to have that moment of unabashed joy when holding their newborn child for the first time. Please, choose your words and timing carefully. You have more power than you realize.


You, too, can let your doctor know how they did delivering the diagnosis by participating in DSDN’s Physician Feedback program. Your submission will be kept anonymous. http://www.dsdiagnosisnetwork.org/#!feedback/c1gzt

Connect with the Down Syndrome Diagnosis Network if you have a young child or are expecting a new little one with Down syndrome for information, connections, and support. www.dsdiagnosisnetwork.org

Tuesday, October 11, 2016

Down Syndrome Awareness and Advocacy Day 11: Forgiving Myself


This picture perfectly sums up what I have had to tell myself over and over regarding my initial reaction to Jackson's diagnosis. Among other things, I didn't think I was strong enough to be a mom of a child with special needs. And then I would think to myself, "What kind of person thinks that?" Though I have since learned my reaction was not unique, while going through it, I felt like I was the worst person/mother ever. 

The saying "Knowledge is power" is somewhat cliche, but spending time increasing my knowledge of DS has empowered me to advocate for our son and forgive myself.


Monday, October 10, 2016

Down Syndrome Awareness and Advocacy Month Day 10: Choosing Joy

Yesterday was a frustrating day. It was just regular old life taking a swing at us. For the past two weeks we have had both sets of grandparents visiting to help after I took a fall and spent a couple days in the hospital. Our house was the cleanest, most put-together it has been in months. Then yesterday morning we woke up to wet carpet in the living room that led to the discovery of a huge under-the-sink leak/flood.  The water had soaked through the bottom of the cabinets and wall separating the kitchen and living room. So much for our clean, put-together house. Not exactly how we expected our last day with house guests to go. Understandably, my husband was quite frustrated and exclaimed, "Can we just catch a break?!"

This started me thinking about what I wanted to write about today. Since I have been focusing on the common health concerns that come along with DS this past week, I realize that some people might be thinking to themselves, "Gosh, that's a lot to deal with!" or "I'd hate to have to constantly worry." And, yes, there is a pretty steep learning curve when you have a baby with Down syndrome, but I would say that is true of having any new baby. The only difference for me was that I stopped reading books on what to expect when having a baby and quickly switched to researching whatever I could find about DS.

For a while that research and need to know everything about DS kind of consumed me. I had a hard time focusing on Jackson as a baby, and I feel that I missed out on some of the joy of his first year. Until recently I really struggled as I saw other children, both typical and with DS, pass him by when it came to milestones. Theodore Roosevelt hit the nail on the head when he said that "comparison is the thief of joy."

Then, some time this summer, a flip switched in me. Maybe it was because Jackson finally started four-point crawling, something I had basically given up on him doing, or maybe it was because he has clearly made a cognitive leap in recent months. Or maybe I have just accepted that, yes, it will take Jackson longer to reach certain milestones, specifically gross motor skills, but somehow I know he WILL get there.

I still have my moments of jealousy or an off day here or there, but, honestly, who doesn't? This new found acceptance is quite freeing and allows me to see all the things Jackson is doing. I am consciously deciding to Choose Joy.

So when my husband asked why we couldn't just catch a break, I responded with,"We did." When I fell two weeks ago, because I am six months pregnant, things could have gone much differently. The three-centimeter placental bleed the ultrasound showed could have turned into something that required an emergency c-section of our baby girl at 24-weeks gestation. Instead, it reabsorbed and resolved itself completely. We also caught a break that all four of our parents were able to rush down here and help while I was restricted from any heavy-lifting. I am not sure what we would have done without them!

Sometimes it is so easy to focus on the negatives in life, but that focus can cause us to be blind to the amazing and wonderful things happening right in front of us.  So as I write in the midst of three different box fans blowing to dry out pulled up carpet and cabinets, I am reminded to Choose Joy Always. Jackson makes it incredibly easy to do just that.

Sunday, October 9, 2016

Down Syndrome Awareness and Advocacy Month Day 9: High Hopes in Spite of Low Tone

One of the most common issues seen in babies and children with Down syndrome is hypotonia, or low tone. Low tone causes babies with DS to be more squishy and floppy than other babies. It also can cause the delay often seen in meeting developmental milestones, such as sitting, crawling, walking, and talking. 
Jackson has hypotonia, and I was told by one of his doctors who has many patients with DS that his tone is one of the worst she's seen. That's always fun to hear! However, we work constantly with different therapists to counter the effects of his low tone. He has worked so hard to sit and four-point crawl, and now we are finally working on him beginning to stand and cruise on furniture. Due to low tone, his ankles are quite weak, so he was just fitted for orthotics called AFOs and SMOs that will fit over his feet and lower legs. When we get these in about a month, they will hopefully give him the secure base he needs to start to feel more comfortable bearing weight on his legs, ankles, and feet. 
Low tone can also affect speech development and cause feeding issues because it often affects the cheeks, lips, and tongue. The tongue protrusion often associated with DS is one effect of the low tone around the mouth, though tongue protrusion can also be a symptom of hypothyroidism. 
Thankfully, Jackson has never really had any problems with feeding. He has been working with a speech therapist since before he was six months old, and he has recently made great strides in saying more words and mimicking sounds. His receptive language (what he understands) is quite high, and he is starting to sight read words, recognize individual letters, and say their sounds. 
A common misconception is that tone and strength are the same thing. Low muscle tone is more about the muscle being loose and floppy than about it being weak. While Jackson does have low tone, he is actually quite a strong little dude! ðŸ’ª
Low tone can pretty much be a pain in the behind because it stinks to see your kid have to work so hard to accomplish what comes easily and naturally to other children. However, it does provide for some interesting photo ops due to the hypermobility (extreme flexibility) that comes along with low tone! 
While it sometimes takes children with DS longer to reach certain milestones, they will reach them in their own time. 

Here are some helpful links for activities to help with hypotonia:

Saturday, October 8, 2016

Down Syndrome Awareness and Advocacy Month Day 8: Our Kids are Fighters

I wrote earlier about how Jackson is healthy, and he is! However, I would be remiss if I didn't discuss one of the scarier health concerns that comes along with the extra 21st chromosome. 
Children with Down syndrome have a higher chance (20 times that of their neurotypical peers) of getting leukemia. So, every six months Jackson gets a CBC (complete blood count) lab run, and we wait anxiously to get the results.
I have to say that this part really sucks. We have to go in about a week or so to get Jackson's next blood draw, and it never gets any easier. From conversations with other moms, I know we all worry when we see random bruises or when our children seem lethargic or when petechiae (purplish dots that can be symptom of leukemia but also can appear after a hard cry or when fighting off an illness) happens to appear on their skin. For me, this higher risk is always in the back of my mind. 
However, although our kids have a higher susceptibility, they also have a higher survival rate and lower recurrence rate. So, though my heart hurts every time I hear of a child within our DS community getting a diagnosis of leukemia, I choose to focus on that silver lining.
Our kids are fighters. They fight for acceptance. They fight to learn to do everyday things (eating, sitting, crawling, walking, talking, etc.) that just come naturally to everyone else. And, when unfortunately needed, they fight cancer. They are pretty badass!

Friday, October 7, 2016

Down Syndrome Awareness and Advocacy Month Day 7: Down Syndrome and Alopecia

One of the rarer health issues Jackson experiences is Alopecia Areata. Only about 8% of people with DS also experience Alopecia. Alopecia is an autoimmune condition where the immune system attacks the hair follicles and causes bald patches. It can be triggered by thyroid issues, gut issues (candida overgrowth, malabsorption, etc.)-both of which Jackson has experienced- and a host of other things. Often it is unknown what causes it.
There are different types of alopecia. Like I said earlier, Jackson has Alopecia areata, which causes patches of hair loss, and these patches often come and go. Alopecia totalis is total hair loss on the head, and Alopecia universalis is total hair loss over the entire body. 
Jackson's dermatologist doesn't think his will turn into totalis or universalis, but there is no way if knowing. 
Treatment is also kind of a guessing game as there isn't one that has shown amazing results across the board. Jackson was prescribed a hydrocortisone cream for his head, and we have added biotin to his supplement regimen. As of yet, we haven't had much regrowth. We have also started an essential oil protocol that was shown in a study (and anecdotally by other moms) to cause regrowth, and I am trying to get up the courage to try the autoimmune protocol diet with him to see if it has any effect. Jackson already eats relatively healthily, but the restrictiveness of the AIP diet is quite daunting to me.
Honestly, most days I don't even think about Down syndrome, but I do think about his bald patches quite a bit. I get frustrated that he has something else that will cause him to stand out from his peers. But then I remember that currently these patches don't bother Jackson, they cause no real threat to his health, and little kids are amazingly accepting of people who may be a bit different than them. Thank goodness for the innocence and acceptance of youth!
Here are several links to some of the alternative methods for trying to treat alopecia I have learned about in recent months. I cannot attest to their efficacy, but I wanted to post them just in case others are interested.
If anyone has tried something else that has worked, I'd love to hear about it!

Essential oils
Autoimmune Protocol Diet

Thursday, October 6, 2016

Down Syndrome Awareness and Advocacy Month Day 6: Sweet Dreams of NO Sleep Apnea

As many as 60-100% of children with Down syndrome will have some level of apnea. The AAP recommends that all children with DS have a sleep study done by age 4; however, our ENT and neurologist both recommend getting one done earlier. Here are the main reasons they suggest this:

  • Children with DS often do not show some of the classic symptoms of sleep apnea (Jackson was one of those children).
  • Sleep apnea causes a lack of oxygen through gaps in breathing throughout the night, and obviously, oxygen is important- for development, for life, etc.
  • Sleep apnea disrupts a person's sleep cycle so that they often don't reach the deeper levels of sleep that help with growth (growth hormone is released during sleep) and cognitive development.
Jackson's ENT ordered a sleep study for him last October when Jackson was 19 months old because his tonsils were enlarged and touching. My husband and I were actually downplaying the likelihood of Jackson having apnea because Jackson slept in our room for the first year of his life. He had always slept soundly through the night, didn't snore, and had no obvious gaps in breathing- and like any new parents, we had stood over his crib countless times to make sure he was actually still breathing!

What we didn't know at first is that sleeping with the head tilted back (like he was looking straight up) and sleeping in odd positions were also signs of apnea. Unfortunately, lots of parents of kids with DS don't think a thing about odd sleeping positions because our kids are super flexible due to hypotonia (low tone). We also thought that Jackson thrashed about his crib about an hour before he woke up because he was just waking up and getting restless. Because it don't occur all night, we didn't connect it as a symptom of sleep apnea.

Jackson's first sleep study showed that he had moderate to severe Obstructive Sleep Apnea (most likely caused by his tonsils and adenoids) and mild to moderate Central Sleep Apnea. His ENT recommended having his tonsils and adenoids removed, and Jackson had that surgery the following month.

At his follow-up sleep study, his sleep apnea had improved but not completely resolved. We were pretty bummed to hear this but knew there were other avenues to pursue. The next step is usually starting a child on a c-pap machine, and Jackson just received his first mask and c-pap machine a few weeks ago. We are in the "desensitization" process right now where we are just trying to get him used to the mask while he is awake. So far, it's not going so well, but I was warned this is a marathon and not a sprint. 

We also hope to find a dentist or orthodontist in our area who knows about early palate expansion as this has shown to improve and even resolve sleep apnea. Also, many people claim to have success with more natural approaches of treating sleep apnea- from essential oils and herbal treatments to acupuncture. While I haven't looked into these, I am not opposed to learning more if it will limit our long-term c-pap use!

While Jackson's apnea didn't completely resolve itself after his T&A surgery, we did see noticeable improvements in his ability to focus and in his energy levels. He also started sleeping in more regular positions and doesn't thrash about as he wakes up in the mornings. So having the surgery was the step in the right direction for us.

Find out more information about Obstructive Sleep Apnea and Down Syndrome here.

Symptoms of OSA in kids include:

  • snoring, often associated with pauses, snorts, or gasps
  • heavy breathing while sleeping
  • very restless sleep and sleeping in unusual positions
  • bedwetting (especially if a child previously stayed dry at night)
  • daytime sleepiness or behavioral problems



Wednesday, October 5, 2016

Down Syndrome Awareness and Advocacy Month Day 5: Hyper-vigilant about Hypothyroidism

Down Syndrome Awareness and Advocacy Month Day 5:

Since Jackson's birth, I have tried to learn as much as I can about several health topics. One of these is thyroid function. People with DS often have thyroid issues, specifically hypothyroidism, and they are often underdiagnosed. In fact, as the graphic shows below, many of the characteristics long associated with Down syndrome mirror the common issues seen in untreated hypothyroidism.

From early on, Jackson had many symptoms of hypothyroidism. Here are some of the most common symptoms: mottled (lacy) and dry skin, cold extremities, constipation, sleepiness, low muscle tone, slow growth, and dry/brittle hair. Jackson had most of these! We thought we just were super lucky to have a baby who slept ALL the time, and no matter how much coconut oil I slathered on his little body, his skin was still so dry, rough, and almost purple. 😔

When we had his first thyroid tests run at his pediatrician's office, a mom told me very early on to always ask for a copy of all lab results. Thank goodness I took her advice! When testing for thyroid issues, many doctors only run the test for TSH and Free T4. Jackson's first TSH results came back at over 8. This was within range, and his doctor told me everything looked good. However, research shows that optimal function occurs with a TSH closer to 2. Jackson clearly had many of the commons symptoms, but his doctor refused to look at the research and would not treat.

Thankfully, other moms encouraged me to seek out another doctor who was more open treating thyroid. This was my first time to put on my big-girl pants and advocate for what I knew my son needed.

With a new doctor, we were able to get Jackson on synthroid, a common thyroid drug, and many of his hypothyroid symptoms improved and his TSH and free t4 went to optimal numbers. However, this was just the start of our thyroid journey!

Jackson had always had reflux, and when I say he had reflux, I mean he was a fountain. Pretty much whatever liquid went in came back up. We both smelled like sour breast milk for the first 9 months of his life! Reflux medicine did nothing to stop the fountain, but they did keep him from being in pain. What I didn't know is that constant spitting up was also symptom of hypothyroidism.

So even once he was on thyroid medication and his numbers were where they were supposed to be, he still constantly spit up. It became worse when he started eating solids. He would vomit up chunks of undigested food hours or even the next day after having eaten it. I knew something was not right.

We took Jackson to see a pediatric gastroenterologist in November of 2014 because we assumed something was wrong with his GI tract, and the doctor ordered several invasive tests that would require Jackson to be put under. We scheduled the tests, but something in my Mama gut told me to hold off on them.

In mid-December we had our first appointment (via Skype) with Dr. Erica Peirson scheduled. She is a board certified naturopathic physician in Portland, Oregon, who has become known in the DS community as one of the go-to doctors for thyroid treatment. We decided to wait until our appointment with her before moving forward with the GI tests. Thankfully, we made the right call!

Dr. Peirson had us have a full thyroid panel run for Jackson, and these results showed what we were missing by just testing TSH and Free T4. She informed us that reverse T3 should be 20 or below, and Jackson's was 58!! Also, when we told her about his spitting up liquids and vomiting undigested food, she said that delayed gastric emptying (what was causing the food to sit in his stomach for hours) was a classic hypothyroid symptom as well.

She suggested that we switch to Liothyronine, a thyroid drug that contains only the T3 hormone (Synthroid, what Jackson had been on, is a straight T4 drug). She explained at the time why this would lower his reverse T3, and I'd like to say I remember what she said- but I don't and won't try to explain it for fear I would get something incorrect. What I DO know is that the new drug did what it was supposed to do!

Within a couple of weeks, Jackson was no longer spitting up or vomiting food. His skin was already looking healthier, and he started to have more regular poops. At his next thyroid check, his reverse t3 was down where it was supposed to be! Thanks to Dr. Peirson, we avoided unnecessary anesthesia, and we never have had to return to the GI doctor.

Because of our experience, I have become passionate about sharing our story with other moms who have questions about thyroid. Here are some of the takeaways I've learned that I want to share with others. I am obviously not a medical professional. These are just observations and tips others have shared with me along the way:

• Always ask for a copy of any lab results. Some doctors accept a wide range of thyroid numbers that do not lead to optimal function.


• Some doctors accept higher numbers for thyroid within children with DS, saying that it's just a "part of DS." I've learned never to accept that statement; if they would treat a typical child for the same issue, they should consider treating my child. (This goes for all health issues, not just thyroid!)


• Many doctors will only run labs for TSH and Free T4. To get a full picture of thyroid function, you should ask for a full thyroid panel, which includes TSH, Free T4, Free T3, Reverse T3, and thyroid antibodies. 


• The "wait and see" approach many doctors apply to treating thyroid in children with DS can be detrimental to their development, both short and long term. Thyroid hormones regulate the production of new neurons, so untreated hypothyroidism can slow cognitive development, stunt growth and impair digestion, which can lead to additional developmental issues.

•For the above reasons, make finding a doctor who fully understands treating the thyroid in children with DS a priority.


Below is a list of resources I have found helpful when trying to learn more about thyroid:



Tuesday, October 4, 2016

Down Syndrome Awareness and Advocacy Month Day 4: The Heart of it All

When we first received Jackson's diagnosis, we were overcome with a wide range of emotions. Most of these stemmed from our preconceived ideas and our lack of actual knowledge about Down syndrome. Of course, at pretty much the same time, we also had a whole host of doctors telling us about all the health issues that can come along with DS. Talk about overwhelming!Over the next few days I will share more about our personal experiences with some of the health issues children with DS may have, but the biggest message I want to get across is that Jackson is a healthy, thriving two-year-old. I wish someone had told me when he was born that having DS and being healthy are NOT mutually exclusive.

While about 50% of children with DS have some sort of heart condition, Jackson does not. However, because it is so common, I thought it was an important topic to cover. Because we don't have firsthand experience with this, some of my friends from my 2014 DSDN Rockin' Moms group have offered to share their stories. Thank you, ladies, for sharing your heart warrior stories with me!

"Soleyl was born with an ASD and VSD. She had OHS at 5 months. She recovered amazingly and was out of the hospital in 4 days. She never showed signs of heart failure prior or needed oxygen." - Shakyra Cora

**"I am not sure how common these are with kiddos with DS but here is her whole story. Let's start from the beginning, 2.5 years ago! She was born on feb. 20th, 2014. She was born at 28 weeks gestation and only weighed 1lb 7oz! She fought very hard, and we were released after 117 days in the NICU. She had an AVSD and had her first open heart surgery in Oct. 2014. She rocked it! 

**She was then diagnosis with Pulmonary vein stenosis in all 4 of her main veins (narrowing veins that run from the lungs to her heart). This news was very devastating; it is pretty much a death sentence and can never be cured. Children's hospital of Colorado told us to make her comfortable and that there was nothing more they can do for her. So of course I wasn't going to give up on her that easy! I did a lot of research and found that Boston Children's had a specialist that could hopefully help Olyvia. We flew out to Boston in July 2015. They performed her second open heart surgery (way more intense and critical than her first). It was a very long and emotional 8 hour surgery! she went back to the ICU with her chest wide open just in case they had to get in there quickly. How many parents can say they saw there child's heart beating from the inside? We stayed a long 21 days at that hospital. She left there on a medication called Gleevec (a chemo drug); this medication is supposed to stop the growth of the disease in her veins. She was on that nasty medicine for a year! But you know what... her veins are now WIDE open! She is truly a miracle! 

We thought all of her medical problems were starting to get resolved. Then back in April 2016 Olyvia under went a sedated echo to check her veins (gets them every 6 weeks) her heart rate jumped to 305bpm! They immediately woke her up and called and said we need to get to the ICU asap. They said they were going to cardiovert her (use the paddles and try and shock her back to normal sinus rhythm). They put her back under and started to shock her, her heart got really tired and stop beating! They then began to do chest compressions to bring her back. She was gone for over 2 minutes, but they were able to bring her back. She was then diagnosed with atrial flutter. From March 21st to August 7th, 2016, she has been flown flight for life to Children's THREE times because of her flutter! The first time her heart rate was back up to 300 and the doctors decided to put in a loop recorder (a small device that reads when her heart stops and/or when her heart beats way to fast and sends the information back to Children's). She was released fairly quickly and we were sent back home. 


She then started to get a fever and her chest looked like it had a golf ball in it. We were then flown back over the mountain, and they took out the loop recorder and her chest was covered in a staph infection! At that time they were talking about a pacemaker but wanted to wait until she got bigger. She only weighed about 18lbs at 2 years old. We were doing pretty good at home, then we check her heart rate on our home pulse ox (which we check daily) and it showed her heart was beating 167bpm. Some of her chambers were double that! We then got flight for lifed the third time on August 7th. They decided to put a pacemaker in this time to help control her rate. They had to open her chest for the third time. The doctors put the pacemaker in her stomach. We were released in 2 days to the Ronald McDonald house to wait for her follow up appointment. Well, on the second day of her being released, she started to have a high fever again, and her stomach was bulging again. We took her to the ER, and they determined she had a hernia under where her pacemaker was placed. So they did emergency surgery that night. They didn't take out her pacemaker at that time. The doctors fought with us and wanted to try and save the pacemaker. Well she was still hospitalized with "big boy" antibiotics. She wasn't getting any better, so they decided to take out the infected pacemaker. (Thank God they did because her heart was very close to getting infected). Her chest then had to be opened for the fourth time!" - Kimber Chapman

**"Jack was born with two heart defects: AVSD and tetralogy of fallot. He was diagnosed in utero, and we met with surgeons and has a surgical plan before we even saw his cute face. He had open heart surgery at 3 months old and was hospitalized for 13 days. It seems like it was such a long time ago, because other than his zipper scar, there is really no sign of it. He is growing and thriving." - Sarah Milbratz

**"Benny had a complete Av canal defect, basically his heart was one big chamber. Our cardiologist was amazing, one of the best medical providers we talked to in the weeks following our prenatal diagnosis. He told us that this was the most common defect in both typical and babies with Down syndrome, and that the outcomes were very good. He said that babies with Down syndrome had an even greater chance of having a good outcome, statistically closer to 99% than the 97% of the total population whose surgeries went well. He also told us that he knew a lot of families who had kids with Down syndrome and that they seemed very happy and were some of his favorite people. I'm so grateful to this man for giving us a different perspective at a scary time when other medical providers were urging us to terminate and emphasizing all of the negative aspects of our diagnosis. 

Our heart surgeon also turned out to be an angel in human form. Handing our precious baby over for open heart surgery was one of the scariest things we've ever had to do, and it was so much easier knowing we had such a great team. The surgery was about 6 hours, and Benny was in the hospital after for five days. His recovery went quickly, and now our only reminder is a little exclamation mark shaped scar on his chest. He has since been cleared by cardiology and will only need to have a yearly checkup with a cardiologist for the rest of his life, but it is anticipated that he will never need another surgery; his heart works just like anyone else's now! The difference from before the surgery when he was struggling to gain weight and suffered from congenital heart failure and pulmonary hypertension, to after the surgery when he gained weight easily and was healthy and strong...it was very dramatic and makes me so grateful for modern medicine and for our amazing heart team. 

A lot of the statistics that we're given about the outcomes of people with Down syndrome include people who were not given this kind of medical intervention. Up until a few decades ago, medical care like heart surgery was denied to people with Down syndrome. So you have to understand that this is why the life expectancy for people with Down syndrome has increased so dramatically in the past few decades. So much has changed. The same is true of cognitive abilities and other health issues that you hear about. Now that we have better health care and modern medical technology, the outcomes for people with Down syndrome are so much better than they ever have been. At the same time, prenatal testing has become cheaper and more available, so fewer and fewer people with Down syndrome are being born. 

This is why all of us parents with kids with Down syndrome are always shouting from the mountain tops that our kids lives are worth living. And they truly are." -Taymar Pixleysmith


For more information about Down syndrome and heart defects, check out this NDSS page.

Monday, October 3, 2016

Down Syndrome Awareness and Advocacy Month Day 3: The Number Three

The number three is a big deal in the Down syndrome community. So on this third day of October, I thought I'd explain why.

The type of Down syndrome that Jackson has is Trisomy 21, and this is the name I actually prefer using. This name refers to the chromosomal makeup of people with this diagnosis. Humans typically have 46 chromosomes. A person with Down syndrome has 47 chromosomes. More specifically, they have an extra, or third, copy of the 21st chromosome-thus the name Trisomy 21.

There are also three types of Down Syndrome: Trisomy 21, Translocation, and Mosaicism. Trisomy 21 is the most common form of Down syndrome with 95% of people who have DS having this type. Someone with this diagnosis has 47 chromosomes in every cell in their body. 

A person with Translocation Down syndrome still technically has 46 chromosomes, but either a full or partial extra copy of the 21st chromosome attaches itself to another chromosome and causes this person to have the characteristics of Down syndrome. Translocation is found in about 4% of people with DS, and this is the only form of DS can be genetically passed down, or hereditary.

Mosaicism is the rarest type of DS; only about 1% of the population of people with DS has this diagnosis. A person with Mosaicism has a mixture of cells that have 46 and 47 chromosomes. The cells with 47 chromosomes have an extra copy of the 21st chromosome. 

This brings me to the misconception that there are different "levels" of Down syndrome. Just as there is no way to know what a typical child, one with 46 chromosomes, will accomplish, there is no way to determine whether a person with Down syndrome, regardless of type, will be "high" or "low" functioning. There is no set spectrum that doctors use to diagnose what children with DS will achieve in their lives. There is no such thing as having "just a touch" or a "slight case" of DS. There are many characteristics a person with DS can have, but these characteristics will express themselves differently in each individual. While some of the physical characteristics of DS are the most easily recognizable, people with DS still resemble the members of their family more than anyone else. 

Jackson's extra chromosome is just one small part of him. Most days we don't even think about it, but it is pretty cool to think about how rare his genetic code actually is. We like to think of him as "chromosomally enhanced"! Below you can see a beautiful picture of genome of someone with Trisomy 21.

Sunday, October 2, 2016

Down Syndrome Awareness Month Day 2: My thoughts on A&E's Born This Way

Someone recently asked me how I feel about the portrayal of Down syndrome on tv shows, specifically reality shows. Born This Way on A&E is the main show I am familiar with, though I know both Glee and American Horror Story have included characters with DS in their storylines. 

I personally love that there is show like Born This Way currently on television. It is breaking down barriers and spreading awareness with each new episode. Obviously other people agree that it is worthwhile television since it recently won the Emmy for Best Unstructured Reality Show!

Jackson was over a year old at the time of the show's premiere, but many emotions from our birth diagnosis were still pretty raw. I'm not going to say the show was always easy to watch at first. When the parents on the show spoke about their experiences, both positive and negative, much of what they said hit home, and lots of tears flowed. I know other parents with children with DS "get it," but we aren't sure others outside of our "club" understand. To see these thoughts and feelings so many of us have put out there publicly for the world to see? That was quite a powerful moment for me.  

I enjoy how Born This Way shows how the participants struggle with every day issues- friendships, romantic relationships, independence, jobs, etc., and just like any other reality tv show, there's plenty of drama! It truly epitomizes the message of people with DS being more alike than different.

The show did receive some flack within the DS community at first because there were complaints that they only included the "highest functioning" individuals with DS. However, at a recent retreat I attended, Sandra McElwee, Sean's mom on the show, spoke to this criticism. She said that the individuals on the show are not the "highest functioning" or "the cream of the crop"; they are individuals who benefited from inclusive education where they learned socially-appropriate and age-appropriate behavior and skills. I will write more about inclusion on another day, but it is not all about having my child learn the same curriculum as other children!  

Another point Sandra made was that information about DS has historically focused on what individuals cannot do, but Born This Way does an incredible job of flipping the script and showing what they CAN do. As a popular tag line from the show says, "don't limit us."

Just as the Changing the Face of Beauty campaign is truly making a difference in the kinds of models we see included in advertising, I hope we continue to see more shows with differently-abled characters included in their plots and differently-abled actors hired to portray them. The world is such a diverse place, and the entertainment industry is finally starting to show all levels of diversity.

**While the second season of Born This Way just wrapped up, you can catch up on all the episodes here: http://www.aetv.com/shows/born-this-way**


Saturday, October 1, 2016

Happy Down Syndrome Awareness and Advocacy Month!

Today is the first day of October, the month designated as Down Syndrome Awareness and Advocacy Month. My goal is to write a post every day this month to participate in the 31 for 21 blog challenge.

My first post comes from something I wrote two years ago. On the first day of October in 2014, I finally told the world through a Facebook post that Jackson has Down syndrome. Family and most close friends already knew, but I just hadn't been ready to publicly announce it until then. I should have known how amazingly supportive my friends in facebook-land would be, but it was a step I had to make when I was ready. 

Now I love sharing our journey! Some may say I share a little too much! :) However, I believe that doing so will help people see how normal our lives truly are, extra chromosome or not. 

October 1, 2014
"Six and a half months ago, our son Jackson surprised us by entering this world a month early. Soon after his birth, we learned Jackson had another surprise for us: he was born with a little something extra- a third 21st chromosome, commonly known as Down syndrome or Trisomy 21.

I wish I could say we handled that surprise well, but I have since learned that our reaction, our grief, was completely normal. Now I look back at my fears and the dark places I visited and wish I could tell myself that the sunshine Jackson will bring into this world will crush those fears and banish those dark places, but I had to travel my road of healing in my own time. I'm going to borrow parts of a quote from another mom's blog that speaks perfectly to this time: Our son was Jackson long before we met him. While we struggled and grieved and mourned and plugged along, he was still Jackson. He was just waiting for us to meet him.

And I am so glad that we did meet him!  Our son amazes me every day. Jeremy and I will not let a diagnosis define him or set limitations on his life. While his diagnosis initially rocked our world, our son is rockin' his extra chromosome, and we can't wait to see what the future holds for him."


Down Syndrome Awareness Month- Day 1