STOP... Helmet Time! - A 6-month update

On 13 August, we decided to stop helmet therapy and continue with repositioning, in the hope that Tycho's head shape would start to improve on its own. After doing a ton of research, we were pretty confident we were making the right choice, but that didn't make us any less nervous for our 6-month visit yesterday.

The cephalic ratio, by the way, is the difference between the head's length versus its width when looked at from above. Anything under 100% means the head is longer than wide, and anything over 100% means it's wider than it is long, with 100% obviously being equal.

Our previous appointment was in August when we decided to stop therapy. At that scan, his cephalic ratio was 100.1%, or just slightly wider than long. We admit that we were trepidatious about whether we were doing the right thing, but we decided it wasn't worth the trauma to continue. He showed no sign of asymmetry at that appointment.

The new scan from yesterday (and the one we're going to have when he's a year old) was just to see if there was any improvement with what repositional and other therapies we've been doing. Despite not having a helmet, his head actually improved to 98.2%!



While not perfect (the highest "acceptable" cephalic ratio is around 93%), it's definitely improving, and the specialist said we may continue to see improvement before he's a year old, possibly to the top end of "acceptable". We're pretty hopeful, and if anything, as the specialist reassured us, his head shape is not going to affect his brain development.

The back of his head is slightly rounder than before, too; we thought we were seeing improvement there, but the scan really showed how much better the curvature looks.



Tycho's head still does look a little flat, but we didn't expect huge changes overnight. We're confident that we'll continue to see improvement, though, and that no one will even know he had this issue when he's a toddler. :) In the meantime, we'll continue with physical therapy, repositioning, getting him upright, and so forth.

So thrilled! :)

4 Months! And Relactation Journey: Day 20 - How's it going?

My baby turned 4 months on the 13th! To celebrate, we had our 4-month appointment, where we got his stats:

Height - 24" (10th percentile, 6" up from birth)
Weight - 12lbs 15.5oz (5th percentile, 6lbs up from birth)
Head Circumference - 42cm (58th percentile, up about 6cm from birth)

So basically, big head... tiny body. ;)

He can now roll from tummy to back and is working on the other way around. He can get onto his side for now! He babbles all the time, including consonants like "B" and "G" (i.e. "agooooo!" and "aaaaabah!"), and angrily does so when he's tired (I prefer that to crying, lol). He stands supported, taking a few steps in place -- we're going to have an early walker! -- and bending his knees to jump high! His hands are constantly in his mouth, and he recently found his thumb, which is SUPER fun. Drool EVERYWHERE. He's still in and continues to rock physical therapy, and he's so much happier and back to his normal self now that we're not continuing helmet therapy. And these smiles all the damn time. :D







Sigh. I love his little face. <3

In other news, I'm continuing the relactation process, and so far, it's going well! I'm actually able to get some milk when I pump now, and I have to admit that the hospital-grade pump rental was a VERY worthwhile investment. I ended up with an Ameda Elite, and not only is it so much quieter than the Purely Yours, but it's much more efficient, too. I'm not sure how, but I'm liking it!

To that end, some pictures of progress:

[caption id="attachment_1967" align="aligncenter" width="500"] Yesterday's afternoon pump. First time I got something![/caption]

[caption id="attachment_1968" align="aligncenter" width="500"] Today's morning pump.[/caption]

It doesn't look like much, I know. But it's something!! I have been so stoked by going from nothing to getting something now every time I hand express or pump. The former is and probably always will be more effective, but pumping is easy, haha.

This is my current regimen, if anyone is interested:

• Pump/express 7x/day (plus extras if I'm feeling spunky), plus one at night.


• Domperidone, 20mg 4x/day


• More Milk Special Blend capsules, 1 pill 4x/day


• Cuddling with Tycho without a shirt on

That's all I'm doing for now. I want to introduce the SNS soon, but I'm really nervous about that as he seems to have no interest in my breasts. If I dangle them over him, he might go for it, but he screams when I cradle him and coax him that way. Sigh. :(

But last night, I put my bare skin on his as he was falling asleep, and he cuddled up next to me, so... maybe? I don't know.

I think the SNS is going to help with motivation on his end, whenever I start implementing it. Since there's not much coming out even still, there's really nothing to get him to the breast. I'm scared that even having the SNS won't do anything -- after all, while we switched to wide-neck bottles, a bottle still isn't the same as a boob -- but there's no way to know until I try.

This WILL work out. I'm really anticipating an even partial breastfeeding relationship with my son, one that will hopefully last into toddlerhood. :)

STOP... Helmet Time! - Why we decided not to continue

There has been a lot discussion recently regarding our decision not to helmet our son, at least not until another evaluation around 6 months, so I thought I would make a post dedicated to our decision. This post covers both our viewpoint and that of the cranial specialist who has worked with our son, as well as the limited studies on nonsynostotic plagiocephaly and related head asymmetries.

As y'all know, Tycho didn't take well to the helmet at ALL. His sleeping, eating, and bowel movement-ing all changed for the worst, and he had terrible skin reactions on top of everything else. We tried for three weeks with several different modifications -- alternate wear schedules, cotton barriers between his skin and the helmet, distraction, lots of cuddles, and so forth -- and nothing made it easier on him or on us, as the parents who had to put it on and take it off. So despite following our specialist's orders and trying everything we could, we decided this past Sunday that we were done.

Yesterday was his follow-up appointment, where we were supposed to evaluate his progress, possibly shape the helmet again, and give our side of how everything has been going. We were nervous going in as we were 100% done with helmet therapy, but our specialist was open to and accepting of our viewpoint, especially after we voiced our many concerns and our reasoning for stopping. What followed was an honest discussion about possible health risks as a result of not pursuing treatment, Tycho's current path with his head shape, and whether helmet treatment (considering every variable, not only his head shape) is necessary or appropriate.

First, health risks. While she admits that no studies have been done in the US relative to head shape and related health risks (and I've confirmed that, as I haven't been able to find many, if any, definitive studies on the subject), there are conjectures as to how plagiocephaly may affect other areas of growth and development, such as trouble wearing glasses or TMJ and other jaw misalignment issues. These have not currently been linked to brachycephaly without asymmetry.

There was apparently a study done in China, where Back to Sleep has been around much longer than it has in the US (approx. 1970s versus the US's 1990s), relative to their space program. Those with brachycephalic head shapes were always ruled out from becoming astronauts because of an issue with balance, likely linked either to ocular issues or to inner ear problems due to their head shapes. Of course, the specialist said, becoming an astronaut involves incredibly rigorous testing, and only a certain percentage of people even qualify for the program, so despite the fact that everyone with brachycephalic head shapes failed these tests, it's by no means an accurate account of how this issue affects everyday life. Like she said, it's not like they're walking around drunkenly because they can't balance themselves. They just can't become astronauts. ;)

(Unfortunately, I can't find a link to that study. Not sure if it's been published or where. But trust me, I'm searching for it!)

We all -- the specialist, Matt, and I -- agreed that studies need to be performed in the US, especially because plagio and other abnormal head shape issues are becoming more common (20-25% of babies have plagiocephaly, a statistic that does not include other head asymmetries). In the meantime, because there have been no documented links between head asymmetries and health issues, cranial remolding orthotics and other treatments have been labeled "cosmetic" and are sometimes not covered by insurance, either in whole or in part. For what it's worth, our insurance did cover about 75% of his treatment, which includes the orthotic and all follow-up appointments, but will not cover a second helmet if we decide to pursue this when he's six months.

Second, Tycho's current head shape development. We had a scan done yesterday and his cephalic index, which measures the width to length ratio and determines the severity of a brachycephalic or other head shape, has actually worsened, from the previous 97% when he had his first diagnostic scan five weeks ago to yesterday's 100%. This essentially means that his head is as long as it is wide when looking at it from the top.

Considering this, we did have a serious discussion about, health risks aside, whether it was worth it to continue treatment. The specialist was completely honest with us, saying that she would like if we could continue therapy (so would we!), but considering his myriad terrible reactions to it, it was probably best to let it go for now, even with the consideration that it was getting worse -- I'll get into that shortly. Matt and I both suggested having a reevaluation at six months, an idea she really liked, so we had his head scanned to use as a new baseline for a comparison in a couple months.

We also discussed development outside his head shape. When we discussed with her that his other areas of development were being delayed as a result -- he didn't want or wasn't motivated to try anything new or to do anything he was doing prior to the helmet to advance his development -- and we were already dealing with developmental delays, she agreed that it was more important to work on those areas than to continue forcing the helmet and risk further delays. It was tough to weigh the two, and no parent should ever have to choose between them! But to us, his development was far more important to us than his head shape, and if it meant discontinuing one therapy in favor of another, we were going to continue with his mental and physical development.

Third, whether helmet treatment is necessary or appropriate. This relates to the second point as, obviously, whether it's necessary depends on whether his head is getting better on its own with repositional therapies, and whether it's appropriate depends on his physical, mental, and developmental reactions to said therapies. I had done quite a bit of research on asymmetrical head shapes righting themselves as babies grew and started sitting, standing, and walking more during waking hours, and what I found was confirmed by our specialist.

Of course, you all know the story I posted yesterday about a mother on BabyCenter who decided not to helmet her baby, despite his obvious brachycephaly, and instead let it work itself out. While there is no guarantee that Tycho's head will correct itself in the same manner as that mother's son did, there has been a very promising study published in October 2004, which states, among other points:

The overall prevalence rates for the cohort were 16% at 6 weeks, 19.7% at 4 months, 9.2% at 8 months, 6.8% at 12 months, and 3.3% at 24 months. More than twice as many infants were classified as having plagiocephaly alone (OCLR ≥106%) than having brachycephaly alone (cephalic index ≥93%) at 6 weeks, but at both 4 and 8 months, more infants were classified as brachycephalic than plagiocephalic. This difference had disappeared by 12 months, with rates for both dropping considerably by that age. In the early months, a few infants were classified as having both plagiocephaly and brachycephaly (Table 3).

Overall, 29.5% of the cohort infants developed either plagiocephaly or brachycephaly or both at some stage during the study observation period (Table 3); however, by the age of 2 years, only 3.3% were still above the classification threshold for abnormality (Table 3). Most cases manifested at 6 weeks or 4 months; only 4 new cases had developed at 8 months, and thereafter no infant developed deformation.

CONCLUSIONS: [...] Although the maximum range of head shape deformity was seen at 6 weeks, the greatest point prevalence of plagiocephaly in our cohort was seen at 4 months. Almost 30% of the cohort exceeded the chosen cutoffs for classification of cases at some point in the first 8 months, but most cases improved with time, leaving a point prevalence of NSP of 3.3% at 2 years.

Note that NONE of these children were referred for helmet therapy.

I asked the specialist if the study was true -- if the worst time for head asymmetries was around four months, and if head shapes naturally got better afterward -- perhaps not to the perfect ratio between 78% and 85%, but at or better than 93%. And she confirmed that, yes, this was typically the case. The prognosis or results obviously won't be as good as if we continue helmet therapy, but some natural improvement is better than none, and the prognosis for that is still good.

This is dependent on our continued work on his torticollis, which is of greater concern since side preference can play a role in whether brachycephaly improves and whether plagiocephaly will become an issue, but that's not a problem at all -- we're going to continue our chiropractic work and physical therapy, plus our at-home exercises.

We also bought a Babymoon pillow, which we've been using for the past couple days, in the hopes that giving more empty space while he's on his back -- in the crib (yes, we understand the risks of pillows in the crib!), during playtime, and in his bouncer or other seat where pressure may be exerted on his head -- will give the back of his head the room to grow in that direction. The reviews for it are great, and honestly, we wish we had found it sooner! The specialist took a look at it, and while she said it won't be as effective as the helmet as it won't actively redirect growth, it seems to be a good way to passively do some good.

Also encouraging was the fact that, while Tycho's head is definitely a candidate for helmet therapy if it had worked out, there have been other children and parents who went through the scans and other diagnostics, whose heads were also candidates for therapy (including those much worse than Tycho's!), and who ultimate decided not to pursue helmet therapy. While this is by no means a case of, "If they jumped off a bridge, would you do the same?", it's at least reassuring to know that there are other parents who are making the same decision, and as the specialist said, they weren't nearly as well-educated on the side effects, risks, and prognoses as Matt and I are.

All in all, while our experience with the helmet itself has been a negative one, our experience with the specialist was not, and we are eternally thankful for her trying to accommodate our and Tycho's needs and for being up front and honest with us when we ultimately decided to stop helmet therapy. After all, as a mother herself, she understood what a difficult decision this was to make for our child, and she realizes we're making an educated decision. "Before I had my daughter, I was like, "Oh, yeah, you shouldn't have a problem at all, it's just a helmet!" Now that I have a kid, I get it -- it's really hard."

I hope this answers y'all's questions on our reasoning behind stopping helmet therapy. :) I'll continue to update on his progress as Tycho gets older. If you have any other questions or things to add, let me know in the comments! And of course, if you're facing these same issues, know that I 100% support anything you decide to do!

STOP... Helmet Time! (No, seriously, stop.)

After much deliberation, tons of stress, and lots of fighting, Matt and I have decided to stop helmet therapy.

When Tycho developed the rash from treatment, we really struggled with letting it go altogether. He was absolutely miserable -- his skin not only reacted poorly, but his demeanor did, too. He was not the happy baby we knew, trading in his smiles for screams, his dancing legs for fists that beat at his head. Even his bodily functions changed, as he was no longer eating, sleeping, or pooping as he was before the helmet. We considered it all a stress reaction, and it was really starting to take a toll on him (and on us).

But we decided to give it a few more days. And, well... we had a harrowing weekend. Two days of a miserable baby and parents at their wits' ends. I had actually thrown the helmet, rather forcefully, onto the couch after I had to adjust it for the fourth time while putting it on him and Tycho's screams only increased in intensity. And heaven forbid when it was finally on!

In short, we missed our baby. We missed his smile, his playfulness, his ability to sleep more than a few hours before being woken up terrified and clawing at the plastic beast surrounding his head.

So we decided to stop. I'm sure STAR Cranial will be thrilled with that decision when we see them tomorrow. :P Currently, our plan is to wait until he's 6 months, then reevaluate; we likely won't resume treatment even at that point, but we thought it'd be better to not leave out the possibility. Personally, I'd rather not even consider it, but all that time and money...

Anyway.

Our decision feels even more right after looking for pictures of kids with brachycephaly whose heads righted themselves once the babies became more mobile. While it's only one example, we've read several other accounts about brachycephaly at least diminishing to a point where it wasn't noticeable anymore, especially in kids whose brachy was moderate or better.

[caption id="attachment_1941" align="aligncenter" width="500"] (click the story on BabyCenter)[/caption]

And let's face it, we'd much rather enjoy our absolutely perfect baby boy, who is four months old today(!!), while we could, not lament or be stressed over whether his head will be perfectly round or not.

Tycho certainly deserves the same. :)

STOP... Helmet Time! - Struggling

Ugh. I'm sitting here nursing a headache from sleep deprivation and a stomachache and nausea due to a stomach bug (NOT pregnancy -- believe me, I checked), and reconsidering whether the helmet is going to be worth it.

Tycho had an incredibly rough night after a tough day. It took about an hour and a half to put him to bed, and while he did sleep, he woke up in the middle of the night completely inconsolable. At around 2am, we ended up taking the helmet off as it was clearly bothering him -- he kept taking his fist and hitting the side and front of his head, poor baby! -- and we noticed an incredible rash where the helmet sits on his cheekbones.



This is after three days of wearing the helmet 23 hours a day. Part of that rash was already there; when we bathed him last night, I noticed the beginning of the rash, including two spots with open wounds. After deliberating with Matt, we decided to put him in the helmet overnight, then take it off for the day and discuss it with the cranial specialist at our appointment (which is today, thankfully).

Then he woke up at 2am. And we took it off. And noticed a HUGE rash on both sides of his head. How devastating!! The photo above was taken around 6:30am... 4.5 hours after we took the helmet off.

I'm incredibly bothered by this. I mean, we are seeing progress -- we can already see that Tycho's head isn't as flat as before, and it's only been three days of full-time wear. I imagine it might just take an adjustment in the helmet for it to right itself, but I also wonder if all this is necessary or if we're putting him through unnecessary pain and stress for something that is, in all reality, mostly cosmetic.

(Not to say that it is NOT a medical condition, as it is. Especially other related conditions such as plagiocephaly and torticollis.)

On a 3am sleep-deprived-fueled whim, Matt and I purchased this from Amazon:

[caption id="attachment_1929" align="aligncenter" width="500"] Babymoon Pillow (Amazon)[/caption]

It's purported to help with head flattening while lying down and when in devices that may put pressure on his head, like in the carseat. (It's not intended for crib use, but many people have done so, and we probably will, too.) Many of the reviews point to positive changes using the pillow.

While we're not sure if we're going to discontinue helmet therapy and use the pillow instead or if we'll wait a week and see how it goes with the adjustments, we're definitely feeling the stress of Tycho's obvious discomfort and questioning if we're doing the right thing.

Which I guess is a parent's job, right?

I'm even more conflicted because we sent Tycho to daycare today without his helmet, and our provider said that he's in a great mood and has been up for a while. That hasn't happened since we started helmet therapy. So...

We'll see what happens after today's appointment. Wish us luck... :|

Relactation Journey: Day 5

I'm assuming that my first day was 1 August, as that's the day I mentally prepared for the physical aspect of getting my milk started back up. ;)

That said, welcome to Day 5! So far, I managed to pump all of Saturday before I realized that my flanges are too big and are causing some nipple trauma. Good times, right? So I'm holding off on that until the smaller flanges I ordered come in. They're estimated to come in next week, though Amazon tends to work faster than that.



The good news is that I managed to get something! I seriously thought I was completely dried up, and while it didn't come out as much as it did after Tycho was born, I definitely managed to get a few drops of what looked to be colostrum. Kind of freaked me out and got me all excited at the same time.

Tycho also managed to latch and suck a few times, which was just as encouraging. He didn't get anything, though, so he ended up frustrated. A friend is sending me a Supplemental Nursing System (SNS), though, which should help!



Weird-looking, huh?

It's hung around the neck, and the thin tubes are placed on top of the nipple. As baby suckles, whatever is in the pouch (in his case, formula, at least for the time being) is fed to the baby, and the suckling on the nipple helps stimulate milk production. As suckling is better at stimulation than a breast pump, the SNS is supposed to be a better solution to getting supply up and going.

While I'm waiting for these to come in, I'm starting a regimen of More Milk Special Blend, possibly extra fenugreek, Domperidone (if I can get my hands on it), multivitamins, manual expression and massage, taking in adequate calories, and drinking more water. I'd lay off the caffeine, but Tycho's starting to sleep in his helmet, and... yeah, that's going well. :P

Hopefully, with all these combined (as well as the pump with better flanges, and possibly even a hospital-grade pump), I'll be able to start expressing enough to cover one of Tycho's feedings. My ultimate goal is to get him back to the breast at least for some of his feedings, but I'm being realistic, too. Every step made is, at least for me, incredible progress!

I've been blessed so far to have an incredible amount of support and advice from all over. From supplements to medical hardware, from troubleshooting breast issues to celebrating small victories with me, I've had no experiences but good so far. I am so grateful.

STOP... Helmet Time! (Part 2: Tycho gets helmeted!)

Tycho's helmet experience... in pictures. :)

[caption id="attachment_1905" align="aligncenter" width="550"] Wait... you wanna do *what*?![/caption]

[caption id="attachment_1906" align="aligncenter" width="550"] Daddy snuggles between fittings. :)[/caption]

[caption id="attachment_1907" align="aligncenter" width="550"] My men. <3[/caption]

[caption id="attachment_1908" align="aligncenter" width="550"] Showing off the leggings... and his tush, lol. (THAT FACE HAHA)[/caption]

[caption id="attachment_1909" align="aligncenter" width="550"] Still a smiley, happy boy![/caption]

[caption id="attachment_1904" align="aligncenter" width="550"] ... but not for long...[/caption]

[caption id="attachment_1903" align="aligncenter" width="550"] Helmet's on at daycare! (LOL, his derpy eyes.)[/caption]

[caption id="attachment_1910" align="aligncenter" width="550"] Still all smiles!! <3[/caption]

[caption id="attachment_1911" align="aligncenter" width="550"] Okay, naptime...[/caption]

[caption id="attachment_1912" align="aligncenter" width="550"] The helmet makes it easy to spot him on the daycare's cameras. ;)[/caption]

Physical therapy (and some pictures of my cutie)

Tycho's physical therapist (PT) is a member of Maryland's Infant and Toddler Program, a state-sponsored program that provides infants, toddlers, and children and their families with support and services related to physical therapy and other special education programs. It's based on the federal Individuals with Disabilities Act (IDEA) and ensures that children with disabilities have the chance to receive a free and appropriate education (FAPE) to support their developmental and learning needs.

We were referred to them after our pediatrician's office noted his tort and brachy. To qualify, we needed to have, I believe it was, a 20% delay in his overall development, be it physical, mental, or otherwise. The state had a PT come out to evaluate him, and they were with him for about two hours while they checked him out from head to toe.

We just managed to qualify partly because of Tycho's tort, and as a result of the same, he's developmentally delayed in his gross and fine motor skills. No biggie, especially since they caught it early, but it's still something else we need to work on.

Our PT is Jen, a really vivacious woman who seriously reminds me of a west coast Florida beach bum somehow plopped in the middle of Maryland. (So that's to say, I can relate. ;)) Tycho took to her pretty immediately, offering smiles and coos until she started manipulating him. To his credit, though, it was 6:45 in the morning!

Jen taught us a number of exercises we can do with him, from side-lying on the affected side to increased tummy time and stretches to tilt his head to the right. We have a feeling he'll be more inclined to do them once we get one of these spinning wand dealies, which kept him plenty distracted and actually stopped his crying in its tracks a few times.



She'll be coming a few more times over the summer, save for weeks when she'll be out of town. After that point, we can decide if we want to switch to PT in Howard County (which means we can have someone visit him at the daycare, but we'll need a new therapist) or if we want to keep these 6:45am appointments. If it continues to go as well as it did today, I might be inclined to keep the latter. Plus, having one therapist work with him without real change would be nice!

I feel so fortunate that we're able to get this service free of charge and at our home. It takes a bit of stress off myself and Matt, and gives Tycho the chance to get better while in the comfort of familiar space. Between this, the chiropractic appointments we have, and the helmet, we're thinking all of this should be resolved by 7 months at the earliest, and best prognosis at a year. I'm stoked!

As a thank you for sticking with me through all these posts, here are some cute pictures. Not that I'm biased or anything. ;)

 

[caption id="" align="aligncenter" width="500"] "Tycho Airliiiiiines!"[/caption]

[caption id="" align="aligncenter" width="500"] Cousin love! <3 (Babe on the left is 6.5 weeks older than Tycho!)[/caption]

[caption id="attachment_1872" align="aligncenter" width="500"] He may be sick (yay daycare), but he's still all smiles![/caption]

[caption id="attachment_1873" align="aligncenter" width="500"] 3 months and LOL-worthy. ;)[/caption]

[caption id="attachment_1874" align="aligncenter" width="500"] In his Hungry Caterpillar cloth diaper! (That's right, we're starting cloth again!)[/caption]

And mostly for lulz:

 

 

 

 

STOP... Helmet Time!

We had our second appointment at STAR Cranial today, and they confirmed what our physical therapist and our pediatricians have said (and what we thought would be the case): Tycho's gotta be helmeted.

It's not that our methods have failed; in fact, the measures we took to round out his head -- more tummy time, holding him on his side to stretch out his neck muscle, generally keeping his head up as much as possible, and others -- worked on his mild case of plagiocephaly, and with further physical therapy and chiropractic work for his torticollis, that will only improve.

But his issues are all congenital, meaning they were there at or as a result of birth. Any measures that we took therefore didn't mean too much, at least in regards to the brachycephaly, as his head was already molded that way and would only continue to get worse without some sort of intervention.

Hence the helmet. STARband, to be precise. Among the physical therapist... and the chiropractor... and the guidelines we still follow... and just, everything.



His helmet fitting is two weeks from now, and we'll have it shortly afterward. He's going to be in it 23 hours of the day, taking it off only for physical therapy (basically 45 minutes or so, three times a month) and for bathtime. They estimate he shouldn't need it any longer than four months; the first two is critical as his brain and head are expanding so rapidly, and the last two would act as a "retainer" so the bones can settle.

Since football season is around the corner, we're planning on getting some Miami Dolphins decals and decorating his helmet. Matt said that, if they do well this season, he might want Tycho to keep it on through January. ;)



As for how we're taking all this in... I do feel confident that the helmet is going to do its job, and if we're proactive about his exercises and keeping the orthotic on as long as needed, Tycho should be 100% by his first birthday at the latest. I am nervous and admittedly disappointed that it had to come to this, but we tried our best and now know that this is the best option.

I mean, come on, what wouldn't you do for this precious face. <3

[caption id="attachment_1862" align="aligncenter" width="373"] (Thank you to a wonderful DCP at his daycare for this one. Tycho Suave, wassup. ;))[/caption]

Torticollis info (sorry, no graphic, boo!)

Someone seriously needs to turn this info into an infographic. You know how much everyone likes pictures. ;)

Here's some information found on torticollis, found on BabyCenter.

What is torticollis?

Torticollis means "twisted neck," and if a child has this condition, her head will be tilted to one side while the chin is turned to the other side. It's also sometimes called wryneck. While it may look painful, it usually isn't.

When a baby is born with the condition, it's called congenital torticollis. (There's also a condition called acquired torticollis that can develop at a later time. In some cases of acquired torticollis, the chin may be turned to the same side as the head.)

About 1 in 250 infants are born with torticollis. (Ten to 20 percent of babies with torticollis also have hip dysplasia, in which the hip joint is malformed.)

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.

Much less commonly, congenital torticollis is caused by abnormalities in the bones of the neck (the cervical vertebrae). The bones may be abnormally formed, stuck together (fused), or a combination of both. This condition is known as Klippel-Feil syndrome.

It's important to know whether Klippel-Feil is what's causing a baby's neck problem because many babies with this syndrome have other problems, especially with hearing and the kidneys. Also, the stretching exercises recommended for muscular torticollis are not only ineffective but potentially dangerous for a child with Klippel-Feil syndrome.

In rare cases, congenital torticollis may be inherited. Or it may be the result of a more serious underlying condition, such as a brain or spinal cord tumor that damages the nervous system or muscles.

How will I know if my baby has torticollis?

You'll probably notice that your baby holds her head to one side and has limited neck movement. Another telltale sign is a small bump on the side of her neck.

Congenital muscular torticollis is usually diagnosed within the first two months of a baby's life. Even if parents don't spot it, a pediatrician will.

Babies with torticollis may also develop positional plagiocephaly (asymmetrical head shape) because they'll often sleep with their head turned to the side.

In addition to a physical exam, the doctor may need to order X-rays of the neck to determine which form of torticollis your child has. The doctor may also order other tests, such as an ultrasound of the hips or kidneys, depending on the type of torticollis.

How is it treated?

Your child's doctor may refer you to a physical therapist or an orthopedic surgeon (bone and joint doctor).

Congenital muscular torticollis is typically treated with stretching and positioning. You'll need to perform these exercises on your baby several times a day. The moves aren't complicated, but make sure you understand them and are comfortable doing them before you leave the doctor's or physical therapist's office.

If your baby has muscular torticollis, you'll want to provide as many opportunities as possible for her to turn her head to the side that she normally doesn't turn to. If she has trouble turning her head to the right, for example, you could lay her on the changing table so you're standing at her right side. And position her in the crib so she has to look to her right to see anyone approaching her.

It's also important to give your baby plenty of time on her tummy when she's awake, to help develop the muscles in her neck.

How long does it take to see results?

As long as your baby's muscular torticollis is discovered early enough – ideally by the age of 2 or 3 months – and you're following the prescribed stretching program, you'll probably see improvement within weeks. The condition should be fully corrected by age 1.

If, however, the muscles don't return to their normal length and your baby doesn't have a normal range of motion by the time she's 18 months old, your doctor may refer you to an orthopedic surgeon, who may recommend surgery to lengthen the muscles. Surgery is performed in about 15 percent of cases.

Note: This article was also reviewed by William A. Phillips, chief of pediatric orthopedics and scoliosis at Texas Children's Hospital, and professor of orthopedics and pediatrics at Baylor College of Medicine.

Plagiocephaly infographic

I've received a lot of questions about what plagio and the other -cephalies are, so when I came across this infographic, I instantly thought of y'all. :)

(Click to go to the original page and embiggen!)

Infant torticollis and random -cephalies.

Tycho turns three months tomorrow, which just blows my mind! Matt put it into a perspective that I almost can't bear to consider: Our little baby is already a quarter of a year old. How time flies!

In celebration, we have a couple appointments coming up to treat what has been officially diagnosed as torticollis and brachycephaly (with possible slight plagiocephaly). Totally exciting, right? I see y'all tilting your head in confusion, so allow me to explain.

Basically, the torticollis is the shortening of the muscles on one side of the neck that makes Tycho look like he's tilting his head in confusion, too... but on a relatively constant basis.

[caption id="attachment_1843" align="aligncenter" width="333"] Cutest example ever, right?![/caption]

And the two -cephalies are a misshaping of his skull. You can't really tell from the above picture too much, but the back of his head is really flat (brachycephaly) and the left side of his skull is being pulled a little from the torticollis (plagiocephaly). All these conditions usually go hand-in-hand, especially torticollis and plagio.

Both are a result of, in our case, restricted intrauterine space that caused his head to be jammed in my pelvis from 30 weeks on -- great for positioning, not so much for these issues -- and from the notorious Back to Sleep campaign from 1992 that states infants should be on their backs to sleep.

As a result, we're having a physical therapist come to the house to give us exercises to lengthen the neck muscles on his left, and our second cranial specialist appointment to see if there has been any improvement with his head.

We already had our first consultation with the cranial specialist, who pointed out that his brachy is pretty severe, while his plagio is mild at best. (Untreated torticollis, by the way, can lead to worsening plagio, which... fun, right?) The appointment this coming week is to see if any of the efforts we've put in to reduce the problems -- among them, tummy time, side-lying, adjusting his position in his sleep, and others (opens a PDF file), which are designed to help all the conditions he has -- has done anything to improve his skull shape.

They plan to have another appointment at four months as well, and if there's little or no improvement, they plan to introduce the DOC band, an infant helmet which helps the skull mold in a certain way. This helmet is worn 23 hours of the day, removed only during bathing, and can be worn anywhere from three to nine months (or as otherwise recommended).

[caption id="" align="aligncenter" width="400"] I HAD to use this example, it was too good![/caption]

I'm strongly considering asking them at this appointment to have him fitted for a helmet. We had to visit the doctor this morning because he's coming down with a cold (fun times all around for this almost-three-month-old, amirite?), and though he's not our regular doctor, even he asked about the brachy and said we may need to consider a helmet, even with the therapies.

WARNING: Extreme Mommy Guilt Ahead!

So here I am, resigned to the idea that our son -- who, in my eyes, is absolutely perfect in every way, as I'm sure all parents believe of their babies -- may have to wear a helmet to correct something that I feel like I could have prevented. I know for a fact that some of this was beyond my control, especially considering that my small uterus was to the point that I actually went into labor early. But what about lying him on his head? Taking him for walks or car rides in his carrier? Even the PPD I had at first that made me not want to hold him... could that have caused my beautiful son to suffer?

I feel like nothing has gone right. He's formula-fed, in disposable diapers, silently refluxes, is already on prescription medication, goes to daycare, has gotten sick that first week of daycare (common, I know, but really?!), and now he might need a helmet?!

Of course, I'm willing to do absolutely anything to help this and to give him the best life possible, even if that means subjecting him (and, by proxy, my heart!) to a helmet for as long as needed. And I know that nothing I've done is really wrong, not by any stretch of the imagination. But boy, do I feel guilty for all of this. I just hope that, if he does end up needing it, I don't see it every day as a physical reminder of my own failure. Whether that's the case or not.

And if anything, we can totally make it look like an astronaut helmet. So not all hope is lost, right? :)

[caption id="" align="aligncenter" width="300"] Or this. Which is totally adorable and appropriate.[/caption]