Head Shape Clinic Appointment

On Friday we had an appointment at the Stollery Children's Hospital to assess if J would need a helmet.

Here is the scale they used to assess the severity of plagiocephaly.  

J scored 4.5/15 and it was determined she would not need a helmet. 

We are fortunate that J took to tummy time and sleeps now exclusively on her tummy. We are hopeful that with continued improvement of her torticollis asymmetries will resolve. 

While we would have made the necessary investment in travel and doctors appointments if J had needed a helmet we were relieved. We could not imagine making the 7.5 hour drive (plus breaks for washroom & feeding) every two weeks for helmet adjustments. Traveling with a baby is not my idea of fun. Our first night in the big city we decided to venture from our downtown hotel to a restaurant a mere 15 minute walk away. J was so upset about our dining digs that we had to request the server change our order to take out. We apologized profusely to the guests around us and servers and walked back to the hotel. It wasn't until late after we returned to hotel, fed & changed J that we had our dinner. That night J would not sleep in the hotel crib. Cue co-sleeping and getting kicked in the head & chest. Actually after she settled down she slept soundly. I, by contrast, fretted. I hardly slept a wink. We were so thankful to finally arrive home after three days away and sleep in our own beds. It seemed like we were gone longer than a week.

We have work to do yet on stretches for her torticollis. Sometimes I think we have made such progress then another moment wonder if we will ever resolve the head tilt or as you may notice in the above photo she hikes her shoulder up to her ear when she is tense. I wonder if her new venture into crawling sometimes causes her to tighten up. The assessor also noted that J has a discrepancy in leg length and foot size so we have to look into that shortly. 

 

Torticollis Update

Today we went for Js physiotherapy appointment for torticollis. We have seen some good progress. J has almost 90% rotation now as compared to 40% when she was first diagnosed and side flexion has improved also from 60%. We still have work to do on side flexion but we've come along way. Yay! 

 

The pictures below were on March 22nd by comparison.

 

There is a new PT at the child development centre locally. Her husband was transferred with the military to the base here & she is fantastic. Lots of energy. I am very happy about this. J still plays shy & drama cried for much of her appointment but I think by the end of the hour she had started to warm up.

As you may recall in my earlier posts here and here after we first had a diagnosis we ran into some roadblocks with being seen. We tried a private clinic in Saskatoon where there is an excellent therapist but the drive is quite far. We were still waiting for a time to be seen locally. After we returned from our holiday in June and at my aunts urging I talked to the doctor about not being seen. This garnered results and they brought a therapist in from Wascana Centre that was also excellent. I thought she was terrific and had great tips. I've been pretty consistent with the stretches before bedtime but find it hard sometimes to incorporate the stretches into our daily routine during the day. Also J fights the stretches much more now. 

Even so we feel we are making headway ;) 

There is a hint of plagiocephaly yet. J now sleeps on her tummy & is always moving during the day. 

 

We have some new stretches in our arsenal including balance stretches lightly moving her body to either side (like the ones on the exercise ball) & one of us holding her trunk while the other engages her with toys (as she will cheat by moving her body to get rotation), as well as refining our football hold carry so that she doesn't cheat on that one too. The football hold one I find challenging because my arms are short. She also gave us some tips to encourage strength for crawling. 

I am hopeful that Js torticollis will resolve. We have a follow up appointment in a months time. 

Torticollis Update

Thank you to everyone who sent me messages privately about your experience with torticollis or someone you know who had torticollis. It was encouraging to me to know that others were or had experienced the same. Also to hear of those who had emerged from the other side unscathed. 

J is almost 12 weeks now. She is able to lay at midline longer now without twisting her neck. When I lay her in bassinet at night sometimes she will stay at midline for a long stretch, but then when she is really tired she will twist her neck so that she lies on the left side of her head. It is the same if I am holding her or propping her up to sit. She has the strength to hold level for short stretches but then it will default tilt. She has improved with her ability to turn her head to her right. 

Yesterday we went to Saskatoon to see a physical therapist that specializes in torticollis. It was relatively easy and quick to get an appointment. She was a natural with getting J into the stretches and showed us a few new stretches. I would have liked to have made a video as already I'm wondering if I remember. I wish we lived closer to see her on a more regular basis even if it was $95 for one session. L wasn't convinced it was worth it since J stiffens up in the car seat and he thought it was a waste of time to go that far when we can see a local therapist. I was glad to have a second opinion and to learn more or to have someone new to talk to about it. When your in the trenches it is nice to have someone who understands. I am continually holding, positioning and repositioning J and sometimes it is exhausting.  I would pay $95 a month just for the encouragement. I felt a little mom guilt when I admitted this to myself --that perhaps the appointment was as much for me as I said it was for her.  L is correct that I shouldn't have her in the car seat for a two hour stretch. That aside I did feel encouraged after as she reminded me to not compare J against other babies at a similar age. This is so easy to do and I get really concerned sometimes especially when I go to the weekly weigh ins for baby and the nurse makes comments about how J is delayed or has asymmetries and then I notice that some of the new friends I have made have babies that are sitting up, able to sustain tummy time for long periods, or jumping in jolly jumpers. She reassured us that even if we did nothing it would resolve, but that everything we did was just helping to resolve faster. She would like to continue to see J on a monthly basis but with the long drive I may wait until J has progressed to holding her head on her own and/or sitting. Any time I know I am going to be in Saskatoon she said I could call the week before and schedule an appointment. 

I realize our local PT recommended many of the same stretches. My last session with her was much better than the tummy time video session. And L is right that we are her best therapists by doing the stretches at home. It's hard to be consistent and stretch following each bottle or tummy time after each diaper change. I'm lucky if I can fit 3 sessions of tummy time in during a day sometimes and 4 stretching sessions. We've seen some progress with Js mobility from doing the home stretches recommended by our local PT. The wait between appointments with our local PT is so long. Currently I have been waiting two weeks for her to call back to schedule our next appointment in six weeks. 

J did develop a flat spot on her left side of her head and we could feel the plates overlapping in her head but with side sleeping during her naps on the opposite side during the day we have been able to resolve this almost entirely. Yay! That was a big concern of mine. It is amazing how malleable a babies head is. 

Torticollis

A few weeks ago I noticed Baby Batiuk has been having difficulty turning her head to the right. There is a tight corded muscle on the right of her neck. Increasingly I feel like her range of motion is decreasing. I am constantly trying to reposition her during the day. She fights it and cries. By evening I realize she needs her sleep and let her resort to her default position. I worry about her acquiring a flat spot on the side of her head from laying on that one side.

So I inquired of Doctor Google. My search led me to torticollis. 

tor·ti·col·lis

ˌtôrtiˈkälis/

noun

MEDICINE

noun: torticollis

early 19th century: modern Latin, from Latin tortus ‘crooked, twisted’ + collum ‘neck.’

What is torticollis? 

With torticollis the head will be tilted to one side while the chin is turned to the other side. It's also sometimes called wryneck. About 1 in 250 infants are born with torticollis. 

What causes congenital torticollis?

Congenital torticollis is most often due to tightness in the muscle that connects the breastbone and the collarbone to the skull. (It's called the sternocleidomastoid muscle). This is called congenital muscular torticollis. This tightness might have developed because of the way your baby was positioned in the uterus (with the head tilted to one side) or because the muscles were damaged during delivery.

Dr. Google can cause you to imagine the worst case scenario. I worry about facial asymmetries, developmental delays, learning disabilities and posture. 

I immediately contact our pediatrician and was able to get in that day. Yes he confirmed she had mild torticollis and referred me to a physio therapist (PT). I asked about cranial sacral therapy and a chiropractor and he cautioned against. I drove to the local physio therapy clinic immediately to learn they do not work with babies. They gave me a number in Regina to call. I called. I got the switch board and then an answering machine. 

Meanwhile our pediatrician called and left a message that he learned there was a PT at the local hospital who worked with infants so L picked up the referral and went to book the appointment. We waited for the appointment for a whole week. The Thursday appointment was not at all what we were expecting. Four mothers and babies waited outside a room in a dimly lit hall in the basement of the court house. We watched the clock tick past a quarter after ten and wondered if we had plugged enough change into the parking meters for our vehicles outside. Finally the PT said the projector was not working but we could come in and huddle around her laptop and watch the video. We came in and sat on mats around a tiny screen. The video that played was clearly made in the 80s espousing the importance of tummy time. This public service message felt patronizing. Of course we understand the importance of tummy time! What about if our child can't even turn their head to the center during tummy  time or is it good if they only do side lifts at tummy time? Is this strengthening the already tight muscle? It had little to do with torticollis but mentioned preventative measures for flat heads or plagiocephaly (asymmetrical head shape). It was so disappointing, I thought we would be learning exercises and that each of the moms there would have babies with torticollis that we could form a support group.

Then the PT assessed each of our babies for two minutes each measuring the range of motion each had and checking for flat spots. The first baby was clearly in the wrong class as he had full range of motion on one side and perhaps 90 % on the otherwise and no flat spots. He received a follow up appointment in April. The second had more of a flat spot and fairly good range of motion perhaps 80-90%. With a little tummy time the PT assured the mom he should be fine. He also received a follow up in April. I was next. Baby J has limited range of motion. The PT never told me the scores but when she started looking at her calendar for follow up tears welled up in my eyes. I asked isn't there someone who I can pay to provide therapy? Tears were running down my face. I didn't want to wait until April! Everything I have read online says to begin the therapy immediately and several times a week. She said she'd see what she could do and would call me later in the afternoon. 

Meanwhile the Regina number turned out to be another disappointment. The call back said I did not qualify for services in Regina because I belong to a different health region in Moose Jaw even though it is only a 35 minute drive away.  This is the thing about Canada. We may have free public health care but there is limited access because there is a lack of professionals providing services due to geographical limitations. The PT in Moose Jaw finally called back and now we have an appointment this afternoon.  I am hopeful but also not holding out much hope. 

I've researched a private clinic PT that works with torticollis babies in Saskatoon. Here I could pay for services. Unfortunately it is a two hour drive away. Time in the car seat makes her even more tight. I've also been looking at excercises recommended online. For someone who has trouble reading the directions on how to put a baby wearing wrap on and baby in this is very daunting. I still haven't mastered the baby k'tan after several tries. Baby Batiuk resists my fumbling attempts already at the recommended online exercises for torticollis already including rotation chin to shoulder and side bend stretches. I will continue to call private clinic PTs closer and ask if they provide care for infants.