Month: January 2019

You probably already know what AFOs are, but what about the AFO’s lesser known little brother, the SMO? Let’s give the SMO a little love today because they are so often overlooked. It has been incredibly difficult for me to find any accurate recommendations for shoes or even other kiddos who wear SMOs. So we are going to break that now and put the spotlight on the SMO. SMO is the acronym for Supra-Malleolar Orthosis. This orthotic supports the leg just above the anklebones or malleoli. The SMO is considered the shortest of the Ankle Foot Orthoses or AFO’s. The SMO is prescribed for patients who have soft, flexible, flat feet. Jack jack got his SMOs almost a year ago now. You may or may not have noticed; SMOs are slightly more incognito than AFOs. His physical therapist recommended the SMOs for these issues: Pronation, Hypotonia, Developmental Delay, and Poor coordination and balance. While these are all still struggles for Jack, his SMOs have truly helped him SOAR!
I didn’t really know what to expect with the SMOs. How would Jack react to them?    What about shoes? He was almost 20 months-old and still not walking or standing independently. I was excited about an option to help him get on his feet. We had our consult, got Jack’s chubby little feet measured, chose a pattern (sports bc he loves to watch hockey with his daddy), and then waited for weeks. When we finally got to pick them up, I had a few shoe options with me because I was so confused. At first glance, the SMOs are intimidating…like how the heck am I going to get that bulky thing in a shoe? I was told to buy shoes one size up to fit with the SMOs and that has worked pretty well for me since then too. I had three different pairs of tennis shoes with us when Jack tried on his SMOs for the first time. The ONLY pair that even remotely worked that first time was the standard grey New Balance shoes my mom had bought just in case. One we got Jack in his SMOs and shoes, he was not the least bit interested in trying to stand (hard eye roll–typical Jack). However, once he was ready to stand, he was so much more steady! I was worried he would hate them because he doesn’t like socks/shoes or anything that touches his feet, but Jack’s PT told me she thought Jack would love the SMOs as soon as he realized he was more steady and could do more with them. She was absolutely correct!

There was no learning curve, the SMOs were easy peasy! However, it did take a few weeks for Jack to work up to wearing them for several hours at a time. We found some really wonderful seamless socks and everything seemed great. I was a little bummed over the summer because there were no sandal options that would also allow for Jack to use his SMOs. I love shoes and I loathed that there weren’t any CUTE or even sort of okay shoes for my little man. But, his success and confidence is so much more important. I can’t reiterate how badly he needs the SMOs on to be able to walk, even now. There are many times at home where I have to put his SMOs and shoes on just so he can move around and play safely. The whole family will be in pajamas, but Jack also has his shoes on. Watch out because he’s truly a toe crusher! Sometimes putting Jack’s SMOs on is a quick process, but other times it takes a full 15 minutes because he fights the entire time. Depends on the day and I’m sure many mamas can feel me on that. So basically the SMOs have been wonderful for Jack. Our biggest struggle with SMOs have been SHOES! Not only were there not any cute options, there just weren’t any options. None of the AFO recommended shoes worked for Jack. I spent so much money on shoes just trying to find something that would work for Jack’s chubby little foot and those bulky SMOs. We started with those plain ‘ol new balances and had a few other pairs with laces as well. Not bad, until…*insert terrible choking noise here* WHAT THE HECK? I had to frantically pull over to the side of the road on the way to therapy one day because it sounded like Jack was choking. Oh he’s not actually choking choking, just has some SHOE STRING stuck in the back of his throat and it’s gagging him. This began the shoelace chewing fiasco. You would think that one choking experience would have been unpleasant enough for him after he actually threw up, but ohhhhh no! This happened on repeat to the point that I never wanted him to wear shoes. That is, until I found Ikiki shoes!!!

I was scrolling through instagram one day and saw that the company that makes Jack’s SMOs, Surestep, posted a photo of puppy print SMOs and puppy Ikiki shoes. I asked if they REALLLLY fit with those shoes or if that was just a cute photo. When Surestep said the shoes fit their brand of SMOs, I immediately jumped over to the Ikiki website to purchase because not only were they adorable, but also NO LACES so they were also safe. I ordered Otto Sanchez, all the shoes have cute little names, and both Jack and I immediately fell in love when they arrived. To make any shoes fit with SMOs, you have to take out that bottom padding piece (not sure if it has a name or not, but see photo at bottom if you’re confused). It was the ultimate Cinderella moment as I slipped the shoe over Jack’s SMO. FIT LIKE A GLOVE! Jack extra approves of the Ikiki shoes because they squeak. The squeakers can be turned on and off easily, but Jack finds the “squeak! squeak!” extra motivating! We are currently the proud owners of two pairs of Ikiki shoes, both Otto Sanchez and Sascha the Narwhal. This is not an ad, but a note from a mama who spent so much time looking a shoe that would be transformative for my son with SMOs. These shoes were just that! Ikiki shoes are durable and affordable as well, which is amazing because decent toddler shoes are super pricey usually. I was sure there would be some terrible flaw once they finally came, but there was not. They really work for Jack and my life a whole lot easier! We are pretty sure the Ikiki shoes will make you smile too and I hope our anecdotes can help another kiddo or struggling mama in a similar situation. Please feel free to message me if you have any questions about SMOs or otherwise! You are not alone and your kiddo can still wear cute shoes! 🙂

 

 

This quote can mean so much to so many, but as parents of complex kiddos, I feel like we have a powerful perspective on it. Our journeys have been so different, but our end goal the same. Today was a day that I tried to stay afloat amidst the current of this chaotic life. Coincidentally, it is also Martin Luther King Jr. Day so plenty of grounding perspective to ponder. I decided that I want to make sure that all my friends know just how “in the same boat” I truly feel we are. I have not been able to connect with anyone on the ground (that’s what we’ll call irl for now because I prefer metaphors to acronyms) like I have with many other moms on Instagram. I know this is my broken record verse, but I was so incredibly alone and isolated during the beginning and most life-altering part of our journey with Jack. I want to make sure no other parent feels that way, especially if they are struggling to find their voice still. Our community of special needs/medically complex parents & kiddos will change the world.  No two stories are alike and we know this all too well as parents who are trying EVERYTHING to help our kiddos thrive in a world that wasn’t designed for them. There’s something so incredibly special about being in the same boat; we are never alone, we share freely, love fiercely, and advocate ferociously.

I always want to make sure that I am being as transparent as possible with our journey. There’s an interesting and delicate balance when it comes to social media and sharing. I don’t want to wear our friends out with perceived whining & putting only the struggles on display; on the other hand, I also don’t want to pretend like our life is easy peasy. The other mama bears I follow are more than capable and I learn amazing things from the Instagram community of warrior moms every day. So again, there’s a delicate balance when sharing what works for us. This is just our journey and I don’t know why some things didn’t work well for Jack, while he made huge gains with others. I want to be helpful, not annoying. All that being said, I am going to take this opportunity to share something super special that DID work for us and I loved it so much that I am sending Jack’s to a very special friend in Brazil that I made through instagram. This mom has a little girl with PDE, just like Jack!!! (what?! this is still so rare, though neurologists believe it’s often under-diagnosed and misdiagnosed. Just take Jack’s case for example) My beautiful new friend is also an amazing warrior mama who wants to know all the ways she can help her daughter. She had to fight for her daughter to get on the triple therapy method of treatment, after learning about it through Jack’s journey. Triple Therapy for PDE is a lysine and protein restricted diet combined with clinical doses of pyridoxine and arginine to combat the brain changes this disorder causes. Triple Therapy for PDE wasn’t published about until 2015 by a consortium of doctors on a mission to help treat patients with PDE more effectively. We were so lucky in so many ways. We were lucky that our firstborn, Rowan, didn’t have the genetic mutation causing PDE because she was born 3 years prior to the research being published. We were lucky that our neurology team was aware of triple therapy treatment, as it was not as well known. There are still so many doctors who are not aware of this, but Jack’s doctors and myself are on a mission to spread awareness! Please take a second to read this excerpt from Dr. Curtis Coughlin and the consortium about the method of treatment that has saved my son’s life.⇓

“Pyridoxine-dependent epilepsy (PDE) is an epileptic encephalopathy characterized by response to pharmacologicdoses of pyridoxine. PDE is caused by deficiency of α-aminoadipic semialdehyde dehydrogenase resulting inimpaired lysine degradation and subsequent accumulation of α-aminoadipic semialdehyde. Despite adequate seizure control with pyridoxine monotherapy, many individuals with PDE have significant developmental delay and intellectual disability. We describe a new combined therapeutic approach to reduce putative toxic metabolites from impaired lysine metabolism. This approach utilizes pyridoxine, a lysine-restricted diet to limit the substrate that leads to neurotoxic metabolite accumulation and L-arginine to compete for brain lysine influx and livermitochondrial import. We report the developmental and biochemical outcome of six subjects who were treated with this triple therapy. Triple therapy reduced CSF, plasma, and urine biomarkers associated with neurotoxicity in PDE. The addition of arginine supplementation to children already treated with dietary lysine restriction and pyridoxine further reduced toxic metabolites, and in some subjects appeared to improve neurodevelopmental outcome. Dietary lysine restriction was associated with improved seizure control in one subject, and the addition of arginine supplementation increased the objective motor outcome scale in two twin siblings, illustrating the contribution of each component of this treatment combination. Optimal results were noted in the individual treated with triple therapy early in the course of the disease. Residual disease symptoms could be related to early injury suggested by initial MR imaging prior to initiation of treatment or from severe epilepsy prior to diagnosis. This observational study reports the use of triple therapy, which combines three effective components in this rare condition, and suggests that early diagnosis and treatment with this new triple therapy may ameliorate the cognitive impairment in PDE.”                                  Find our more online at PDE ONLINE.org

Now you know why this treatment is so important to Jack Jack and our family! Thus, when this Brazilian mama reached out to me about the diet and other PDE-related questions, I was eager to help. Initially, the pediatrician in Brazil was not willing to give the treatment a try, saying that restricting protein at the child’s age would be detrimental to development. Ummmmm, please read anything about PDE and know that NOT restricting protein will be detrimental to the brain function of the child. Anyway, I emailed these amazing doctors from the consortium and before we knew it, they were helping! This is just one success for this amazing little girl and her family. There’s only one or two labs (I think one, but I may be wrong) that can test the biomarkers for PDE–AASA and pipecolic acid, and they are in the US. Jack has his blood taken every 3-4 months for Emory Genetics to monitor the levels. I’ll just say this, it’s a freaking process for us! However, it is something that I am so incredibly grateful for because so many others do not have access to this lab, like my Brazilian friend for example. We’ve also been able to share about the emotional struggles, as well some tips and tricks for therapies. As we were sharing one day, I thought maybe we could we share something physical as well. This is where our super special item comes in. We mailed our Brazilian friends Jack’s Pewi Y-bike, the first device that ever gave him freedom. My heart is so happy to share this special “toy” with my friend because man it helped Jack so much. I have shared it with a few other moms, but wanted to take a moment to share it with the group, so to speak.

At 15 months old, Jack couldn’t stand independently or pull himself well. We were working so hard, physical therapy twice a week, SMOs, etc. Jack was getting so big and all the traditional baby walkers and buggies no longer held him up so he never even got a chance to even use those. We had them, but he outgrew them before he could stand steady enough with them. I did a mad google search for stronger walkers or anything that would help Jack learn to stand. He didn’t even know how much he was missing because standing was hard and he didn’t want to try it. I knew I had to find a way to motivate Jack to get on his feet and then reassure him that he was safe and steady. Then I came across this smiling contraption that looked exactly like what I might need. It turned out that this Pewi Y-bike, I couldn’t even find the brand on Instagram back when he was using it, was everything that Jack needed and more! (side note: bought it on Amazon) You can see from the photos that Jack used his bike for everything once he got used to it. He was apprehensive as hell at first. But, the bike moves so smoothly that after getting over the shock of sitting on it, he realized that he was steady. He adjusted to it quickly and fell in love soon after. It was the only way he had ever known to stand, move independently, and finally get on his feet. More and more, Jack would “walk” instead of scoot, but the option to sit was always there for him. Jack stood and hugged his sister for the first time using the bike. We took it everywhere and it was really sad when Jack outgrew it, but that’s also when he got his first Kaye walker!

Check out the photos of Jack Jack becoming independent with his bike below. I can’t wait to (hopefully) share photos of our Brazilian friend loving it as much as Jack did. (Don’t fail me, international shipping!!) Please ask me any questions at any time; I am an open book. Most importantly,  I’m in the boat with you so let’s make some fucking waves! (sorry MLK, it’s for emphasis and also because someone may think this isn’t actually me if I don’t let at least one F-bomb out) ❤ I guess this is basically just a PSA in honor of MLK to say that I’M HERE!!! Don’t feel isolated and don’t isolate yourself. Maybe that’s where I went wrong too, but at least I found the supportive community I did on social media. My life is still so different from those in my community, from the life I had before, from a “normal” life so I will take my tribe where I truly feel connected. ❤