Declan's Torticollis Journey

Friday, August 31, 2018

I wanted to share Declan's current journey because I've chatted with a few mamas who are recently starting the process with their little one! From day 1 Declan was always sleeping with his head turned to the left. As a new mom juggling my own self care and learning the ropes of everything baby related, I didn't think much of it. It wasn't until almost 2 months that I started to notice a flat spot on that side of his head. I of course mentioned it to our pediatrician and the process began of multiple doctors, physical therapy, and cranial orthosis.
Basically Torticollis is the equivalent to a really bad kink in your neck. A baby can develop this after delivery but in my case he developed it in the womb. Basically as the baby grows in the womb he stays in one position, losing space, which tightens the muscles on one side of his neck, therefore he favors the other side and tends to have his head at an angle.

We started physical therapy right away and the clinic did great at showing me exactly how to do stretches at home and gave me endless handouts which I studied religiously. They told me if we could create significant improvements he may be able to avoid cranial orthosis aka. a baby helmet. I honestly never knew why babies wore helmets but I did always think they were cute! None the less to put my baby in a helmet sounded miserable and if I could avoid it thats what I wanted to do! So I began his exercises right away! I actually had to ease up because I felt like anytime he was awake I was wanting to stretch him out, which was no fun for you can see in the pic below.

As he started to grow, I had to get creative with distractions and entertainment while we stretched. I've never been a fan of electronic toys that create music or sounds because they tend to drive me crazy but after seeing how well he responds to them at PT I decided to get a couple at home. At 2 months their interaction is pretty limited so we started with a Christmas bulb necklace that lights up. I could wear it around my neck or hang it from his play gym for him to look at. But once he started reaching and grabbing things I decided to graduate to something else.

We started out with toys that had shakers in them (though these are kind of hard to use if you are by yourself). And a lot of the time I would prop my phone up and play videos of himself (he's a little self obsessed). Some stretches include us holding him, which he did really well with. As he started to roll and really get active my favorite toy has been the VTech busy learners activity cube. Its educational, which I love, and has a variety of things to do on it. Its also helped him practice sitting up because he can hold onto it which is nice!

But because he was spending so much of his time on one side of his head at night, his neck was improving but his flat spot wasn't. So we went ahead and scheduled an appointment with the craniofacial specialist. The other major stressor of torticollis is it can cause a variety of other issues  such as scoliosis, and problems with the hips. And so help me if he was going to have to be in a helmet AND hip brace!! So we made appointments with the Pediatric Orthopedic Surgeon to get those two things checked as well.

Some weeks we would see up to 3 doctors at a time in addition to weekly PT. I will admit it was overwhelming at times. Tony was of course working so it was just Deco and I. To have to wait in a doctors office but make sure he's fed, work around his naps so he isn't screaming by the time the doctor is ready for him, and dealing with blow outs.... it was a lot. Luckily after a few appointments and x rays they determined his spine and hips were ok and we would come back to get them checked after he starts walking. But when we saw the craniofacial specialist it was decided that we should opt for the helmet. But how cute is he :)

I was told the first week of helmet wearing is the roughest. And I would have to agree. When you add torticollis on top of the new helmet they do digress a little bit in their range of motion and are a lot more hesitant which makes me sad to see. Its during the first week that their body gets acclimated to constantly wearing the helmet which means they are SO sweaty!! Its been rough finding the right combination of room temperature and different pj's to keep him cool enough but not cold. The doctor recommended onesies during the day and short sleeve open foot pj's at night. Since babies sweat from their head and feet, its important to leave the feet exposed. The first couple nights we gave him a little bit of Tylenol because I felt the helmet may have been causing him some discomfort, and he slept through the night great!

Cleaning the helmet is its own beast which requires you to take it off at every diaper change and wipe it out with a wet rag and every night before bed you scrub it with rubbing alcohol. With all the sweating he's doing his head and helmet start to stink! So cleaning is really important!

Though it takes some getting used to, I do believe helmets are harder on parents than on your little one! He has done so great and is his same happy self. I do miss being able to kiss that adorable head of his all the time and don't really appreciate getting hit in the face/head by his helmet, but we hope the end result is worth it! If any of you are going through this and just need some encouragement or have questions about torticollis, helmets, etc. feel free to message me!


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