Torticollis


When we had the DSi for Little Man’s second helmet, it was 7 weeks into his first one.  I was told he had two weeks remaining and, thus, thought there would be no lapse. However, when he went for his weekly adjustment at Cranial Technologies on February 18th, his clinician shaved the foam inside the helmet down to the plastic and told me if I see redness on his forehead or anywhere else that doesn’t fade after an hour to just discontinue use.

Of course that happened that very night.

So Little Man was  going to be sans helmet for a week.  As he now sleeps on both sides, rolling all over the crib, I wasn’t too worried about regression. But I was a bit upset that if he had a growth spurt, he’d miss the opportunity to redirect the growth to the back of his head.  We were scheduled to pick up DOC Band #2 on Thursday, February 25th.

Then it snowed.  And Little Man got a cold.  So we rescheduled for Monday, March 1st.  Little Man didn’t wear a helmet for 11 days and when he got the new one, I was all pumped. I’m thinking, he’s only 6.5 months old and has lots of growth ahead of him. I thought some babies don’t even get helmets this young and they see great improvement and this is my son’s SECOND one.  Well, the posterior (some call it “brachy”) band he wears has stronger pressure than most of Cranial Technologies’ designs. And I took him back the next day for a check.  We were on a modified schedule at first but he slept in it by Wednesday night and wore it all day on Thursday (3/4).  I took it off for his torticollis stretches and all looked OK. But during his hour off on Thursday night, the red marks didn’t fade.  So he slept without it.

Friday, March 5th, I called Cranial Technologies in the morning and told them what had happened.  They had me put the band back on for a few hours and come by. I’m lucky that the one I go to—in Paramus, NJ—is only 30 miles from my office (a bit further from my home) so it wasn’t too bad of a trip.  The tech who saw me (not my usual one, though she stopped in) made some adjustments to the holding points and told me to let the redness completely fade before putting it back on.  And after that, to be on a 3 hours on/1 hour off schedule through the weekend and to call on Monday.  He tolerated it well during the weekend but did not sleep in it.

Monday, I called and we were on a 6 hours on/1 hour off schedule.  Tuesday morning (3/9) was his first day wearing it 23/7.  He did OK and when I took off the helmet on Wednesday morning to check him, there were red marks again. They faded, but it took around 2 hours.  We saw our usual clinician on Wed. and she made another relief on the holding point and an adjustment to the back of the band (to allow for growth).  He seemed fine last night.  But, again, this morning, he had redness.

I spoke to our clinician and she feels for the next several days, to just give him more off time. If he doesn’t adjust to the pressure of this helmet, Cranial Technologies will make a new band. But they’re not sure if it’s a fit issue or because of something else. Honestly, it is fitting OK but after he sleeps in it and rolls around, it shifts too much.  I don’t think I’m doing the wrong thing by not insisting they remake it immediately. This could happen again. So he’ll have two hour breaks (in the AM and in the PM) instead of one. I don’t think that 22/7 should hinder his progress.

So that’s the saga. I hope we’re on track now. I’ll update next week after his appointment.

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For now I’ve settled on a blog design.  I liked the mommy giraffe and baby and the soothing green colors. Of course I may change my mind—change is good. And I think I’ve wasted too much time today on this when I should have been doing work.

So here’s the most recent updates about me and Little Man.

Torticollis regression: This began after he outgrew DOC Band #1 on February 18th.  I’m not sure if he was too used to the helmet on his head or if it was another reason, but Little Man’s tilt came back.  I don’t have percentages and he hasn’t seen a specialist. My pediatrician sent him to physical therapy when he was 2 months old and he’s been going for 4.5 months now. I’m really frustrated and worried. More so about his neck muscle than his head shape.

He Got DOC Band #2: Finally! After delays due to snow and a slight cold, Little Man got his new helmet on Monday, March 1st. Because of the style of band (specialized for brachycephaly) it tends to tip forward. And the helmet was seriously rubbing on a spot on the bridge of Little Man’s nose.  I think it’s fixed now, but I’m keeping an eagle eye on it.

Of course he’s more “aware” of this helmet because he’s older now (6.5 months) and he’s often tugging at the band and the velcro.  So I’m not sure how much that affects the redness. And I think it bothered him last night as he slept, since he was extremely restless.

Got his “Big Boy” Carseat: Since Little Man is a big baby, we moved him to a convertible car seat about two weeks ago. He seems to like it. We got a Britax Marathon CS in the Matrix pattern.

Not much else to report except that our dog, Casey, got his teeth cleaned.  Another expense we just put on the credit card. Debt is SO not fun. But Casey’s breath smells much better and as soon as his hot spot clears up (he was licking the shaved spot where his IV was) we’ll be good.

Ciao for now!

It’s not so bad.  I mean, yeah, it’s a bit unwieldy and rougher against my arm when I feed him a bottle. But it doesn’t look sterile (even undecorated in white) and Little Man looks rather cute in it.  He really isn’t crying or sleeping any differently. He does not like when I take it on and off for his exercises (for his Torticollis) but beyond that, seems to be adjusting well to his new “chapeau.”

After months of feeling guilt for allowing my son’s head to flatten, I’m now feeling HOPE that by wearing the DOC band that he’ll have a base of his skull again.  Even though this has cost us a lot financially, I went to the right place for my son.

I’m going to add a “page” to my blog with before photos and share them with you.  I know there are other moms who are dealing with plagiocephaly, brachycephaly, scaphocephaly and torticollis.  But I don’t want this to be the ONLY focus of my blog.  This is just a part of Little Man’s life—and mine.  Motherhood is full of challenges and celebrations and I want to document as many of them as I can.

Little Man will be my only child and I want to ENJOY his infancy and his milestones and ever-developing personality.

So the helmet is just a part of his life—it doesn’t define him.

When I started this blog, my first entries were about Little Man’s two month well baby visit and the fact that he was diagnosed with Torticollis and Positional Plagiocephaly.    When I went to his three month visit (with another pediatrician in the practice) I brought it up and how his head shape hadn’t changed. That doctor suggested I take Little Man for an assessment at Cranial Technologies, who makes the DOC band for reshaping babies’ heads.

I had a feeling that my son would need a helmet and I even figured out what type of head shape my baby had.  It was confirmed that Little Man has Brachycephaly and, to my surprise, a technically severe case.  I say technically since he looks like a moderate case (if you click on the link and view the photos) but by his measurements—100%, which means his head is as wide as it is tall and it should be 1/3 taller than wide—his case is severe. So a DOC Band was recommended.

I’m now waiting for their insurance coordinator to contact me.  The chances of our insurance covering this band is pretty slim, especially considering our policy has an exclusion for orthotic devices for reshaping purposes. And that really sucks since the cost for one helmet is $3600 and sometimes babies need two.  But I’m praying that our son will only need the one and will only have to wear it for 2-3 months.

It’s so weird saying 2-3 months when he isn’t even 4 months old!  He’ll be wearing a DOC band until he is 7 months old (give or take) and that will be about half his life. But for his future well-being, my husband and I will be going ahead with this, regardless of what our insurance does or does not cover.

Apparently babies with untreated brachycephaly have increased risk for ear infections, TMJ and often do not fit into bicycle helmets (or football helmets).  It’s very difficult to reposition a baby with this type of plagiocephaly and, thus, banding is very often recommended.  Add to the mix Little Man’s Torticollis… well, it’s a long road ahead of us.

So in the coming weeks, I’ll probably blog a lot about the process of getting a helmet and my financial woes as a result. But I’m doing what’s best for my son and his future head shape. I hope he won’t be too irritated by the helmet once he gets it.

Instinct tells me that a) Little Man will need surgery on his scrotum for his Hydrocele and b) he’ll likely need a DOC Band (helmet) for his positional plagiocephaly.  I don’t know why, but that’s what my gut is telling me.

If he does need a helmet, I don’t think our insurance will cover it.  Though the place I’m taking Little Man for an assessment told me that they DO fight for patients’ and often they will cover at least some of the cost. I’m hoping that, since Little Man also has a diagnosis of Torticollis, that UHC will cover something.

If not… well, I’d rather get us further in debt than NOT correct something that is correctable due to my son’s young age (13 weeks tomorrow).

So I’m taking him to see a urologist and to Cranial Technologies for a free assessment in early December. He’ll be close to 4 months old by then, but I’m told babies under 6 months show the best results. I’d go sooner, but Dude wants to go with me and he won’t have a free day before then. But I don’t feel that it’s too much of a wait.

At this point in time, Little Man seems to sleep best when I “wear” him in my Baby K’Tan sling. He’ll sleep in his crib at night, too. But both times he only falls asleep if I’m holding him (or if Dude is). I want him to be able to fall asleep without one of his parents holding him but he doesn’t seem able to.

I’m not sure if it’s because he’s too young (at 2-1/2 months) or if we’ve set into motion bad sleep habits.  I’ve read online that you can’t spoil a baby before they’re six months old. I’ve also heard that, up to 3 months, a baby is in the “4th trimester” and needs to be held a LOT.  I’m going to have to ask about sleep (and feeding) habits at Little Man’s next well baby visit.

I probably should have bought more baby books with suggestions on how to get your child to sleep. I got The Happiest Baby on the Block and never finished reading it! I think it’s probably too late to implement the techniques given in the book by now. And I’m almost at the point to start de-swaddling my son since he’s beginning to be able to REALLY kick himself free.

Of course with his Torticollis and Plagiocephaly issues, I want him OFF his back as much as possible. So I’m less worried about him being in the sling or sleeping on my chest. I’m so worried about adding more pressure to his flat spot and him needing to wear a helmet.  Less so for the looks we’ll get but more for the cost of the helmet (if needed). I’m told most health insurance companies won’t pay for it (feels it’s for cosmetic reasons) and finding $3000 to pay for it will NOT be easy.

Of course I’m jumping ahead of myself.   I was writing about SLEEP today.

I wish Little Man would sleep through the night. I want to get about 5-6 hours myself!

But he wakes up at least once, sometimes twice, a night and he’s REALLY hungry. So I give him a bottle and he chugs it down and goes back to sleep for a few more hours.

I really need to ask about this. I have SO many questions for my pediatrician and I feel like I can barely get them in.

But, for now, he’s sound asleep in his sling and that’s a good thing.

You get a look of sad looks from the other patients. Nobody wants to see a little baby needing physical therapy.  Yet Little Man is so cheerful (as long as he’s fed) and alert that one would never know there was a problem.  That is unless they looked at his photos and noticed that his head was tilted to the right in each one of them. The Torticollis is obvious to me NOW, but I never noticed a thing before my son’s two month pediatrician visit.

Little Man’s physical therapist, Mary, said to me that she doesn’t usually get the babies with Torticollis at two months and the fact that I’m bringing him now bodes well for his response to the therapy. It’s basically stretches—some that I have to do at every diaper change, which is not easy but I’m committed to my son’s health—and muscle massage and manipulation. He also needs a LOT more tummy time, but he still isn’t a “fan” of it.

The therapy to stretch and strengthen his neck muscle will also help with his flat head. And Mary said that even though the flat spot looks awful to me, it’s not the worst she’s seen that has corrected itself.  So she feels pretty confident that Little Man’s flat head will correct itself and that he should not need a helmet.  Her analogy was that of a water balloon. She said that if you lay one down, it will flatten on the spot that’s on the ground. But if you turn it, it pops back out. So I hope that Little Man’s head “pops back out”.

We’re going to PT twice a week for the first few weeks.  Last week was week one and we’re going next week, too. Then Mary is on vacation for a week.  The Monday before he goes back, November 9th, he finally will go for his ultrasounds. I hope that his hip is fine and that I’ll get good news re: his Hydrocele. But somehow I have a feeling Little Man will need to see a pediatric urologist to take care of the latter. The swelling hasn’t gone down in two months and I don’t see another few months making much of a difference.

All of this weighs on me.  When you have a baby, you want him or her to be perfect. You pray for health and you want your child to survive.  I had a crisis the first few days after Dude and I brought Little Man home from the hospital. I wanted to breastfeed but found it too frustrating to continue (and Little Man was Jaundiced and dehydrated, so I quickly moved to formula) and felt horrible guilt about giving up without truly trying.  Dude says that if I HAD breastfed, I would have been a wreck due to how much Little Man eats and he says that I shouldn’t feel guilty. I don’t anymore, but I did for a while. And I guess I’m feeling somewhat the same way about the Torticollis and flat head (not sure what “type” he has).  I need to get past that, but I haven’t yet.

Though I AM grateful that Little Man’s health issues are treatable and, relatively, minor. I hear stories of babies with heart problems. Premature babies who are in NICUs for months and months. Children with Cerebral Palsy or other health issues. And what we’re dealing with, in the grand scheme of things, is just a glitch.  But it weighs on me—and not the finances, though it IS a struggle—and I do wish that this hadn’t happened.

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