Tort/Plagio Diagnoses - Upset with Pediatrician

aeh72

I apologize if this is not the right board - I was not sure where to post this. 

I?m feeling very frustrated with my son?s pediatricians regarding his torticollis and, now, plagiocephaly diagnoses, and I need some perspective on whether I?m over-reacting.

Some lengthy background - at my son?s 2 month appointment, the pediatrician who saw him (office of about 4 doctors) noticed he was only turning his head to one side.  She suggested we do some stretching exercises to help correct it - no mention of the word torticollis or potential need for physical therapy.  I?m a new mom and while I was concerned, the doctor?s reaction to it certainly did not leave me thinking there was potentially anything major to be worried about.  We started doing the stretches and within about month, we saw improvement ? i.e., he was moving his head both ways and did not seem to solely be turning his head in one direction when on his back (at the time, I did not realize all the other things I should be looking for).  Flash forward to his 4 month appointment where a different pediatrician commented that he still had some neck tightness (she finally used the term torticollis) and head flattening (again, as a new mom, I just assumed the head flattening, which seemed mild to me, was normal and would correct itself now that he was into tummy time and sleeping on his stomach), so she referred him to a physical therapist due to the torticollis.   We finally got in to see the physical therapist about a month later (apparently there is a long wait because there are so many infants diagnosed with torticollis these days), and she said it looked as though he had a mild to moderate case of plagio and recommended we go to Cranial Technologies to get evaluated for a Doc-Band.   We had him assessed and they said he had moderate plagio and he could benefit from the Doc-Band treatment.  I have no issues with going to physical therapy and we?ve decided that we will do the Doc-Band.  My issue is with our pediatricians. 

I am so upset that at the two month appointment, they did not recommend him for physical therapy.  My son is going to be getting his helmet at 7 months old and we could have started this whole process 5 months ago! And, he would have been in the better window of time for treatment between 3-6 months of age.  Am I over-reacting to what seems to have been a very under-played assessment of his neck issue at his 2 month appointment?  Or, is this commonly how it plays out ? i.e., pediatricians typically watch the issue for a couple of months before recommended PT?  I don?t want to be overly critical, but I can?t help but feel as though they let us down a bit (of course, I?m also beating myself up for not questioning the doctor more during the 2 month appointment).  If anyone has been through tort/plagio issues, what was the timeline for your LO?s treatment?  TIA for letting me vent and any insights you may have to share!

Justinlove

I don't have experience with your specific dx, but yes...unless the situation was severe at the 2 month appointment, then it is not unusual for a pediatrician to mention his/her observation, make a suggestion for home treatment and then to see how things develop.  It is not your ped's fault that it took an additional 2 months after the 4 month appointment for your child to be seen by PT and get the doc band. 

Florak8

Justinlove:

I don't have experience with your specific dx, but yes...unless the situation was severe at the 2 month appointment, then it is not unusual for a pediatrician to mention his/her observation, make a suggestion for home treatment and then to see how things develop.  It is not your ped's fault that it took an additional 2 months after the 4 month appointment for your child to be seen by PT and get the doc band. 

Ditto. It's a fixable problem, and you are addressing it within the appropriate time frame. It's going to be ok. 

Yellow79

I have to respectively disagree w/ the pps...my son was diagnosed at 5 days old for Tort, which was due to his facial assymetry bc he had his shoulder in his jaw in utero. I am thankful and grateful that my ped was so quick to diagnose and insist we get him into pt which we did at 2 wks old (the 1st appt was 4 weeks away but I managed to snag a cancellation.) However, the word Plagiocephaly was NEVER mentioned as something to be aware of and I did not know to look for it. While it is fixable it didn't need to happen.

Honestly in my case I'm more upset with the PT and not the ped b/c I now know the 2 go hand in hand more often than not and our ped was the first to bring up the plagio but I swear its as if his head flattened overnight. Our son also had the Doc band at 7 months old by the time we could get appts and the helmet made etc; that precious time was wasted and the plagio got worse imo. I went to cranial tech myself...NO ONE recommended it to me even though he was dx w/ plagio/brachy.

Everyone says not to be upset (I'm not a raving lunatic but people know I'm not happy with how we learned of things) but the tort was congenital, the plagio/brachy was not and had I known I would not have let things get to where they did in that area. My main concern was his tort and his facial assymetry not some greek word I've never heard of before 4 months old.

I was dilligent about the stretching and dilligent about the time in the band so I would have been equally dilligent about not letting it get to Plagio and it sounds like you feel similarly.

Long story short, I'm sorry you're in this boat...but you are not alone, if that helps. If you're like me, it won't however, like pps said it will get better, keep your head up.

**Here's a silver lining for you: wearing a doc band is MUCH better in the winter than in the summer. I can't imagine how bad that thing would smell if it was summertime

ktpaladino

I responded to your post on the 6-9 month board. Hope it helps! 

aeh72

Thanks everyone! I appreciate your perspectives.  I'm emotional about it right now so it helps hear what others have been through. I know we caught it fairly early and, truly, I get that in the scheme of things that DS could be dealing with, we have a very fixable issue so I don't want to over inflate how I'm feeling about his diagnosis or treatment.  It's just the nagging feeling I have about his pediatrician that's weighing on me, and as I get through this initial reaction to things, I'll be able to sort out how much that issue really bothers me in the long run.

Thanks again!

realisticdreams

I don't have a whole lot of time but I noticed P was only looking one direction around 1 month of age or so, H & I would comment on it and I remember one day saying, "jeez it's not like its something medical making her only look that direction."

When it hit me.  I remembered reading about tort.  We had some other issues going on so I think when I talked to the nurse about something else I asked her if I should bring her in or just wait until 2 month appt which was soon.  So we waited.  I think they had a med student there who thought I was crazy asking about it but the pedi came in and was like no feel here where it's tight, etc.

We were referred to outpatient PT.  It wasn't until she was close to 6 months of age that the PT asked if we were interested in doing a helmet.  We got a script at her 6 month well visit.  Her neurologist did not want to do the helmet, and we saw a neurosurgeon as well who said they didn't personally advise for it either. We went to two helmet locations and one just did the measurements but no advice and the other said he would band if insurance would cover it.  

In the end, we did not band, it was a HUGE decision to make.  She had mild plagio but severe brachycephaly.  She was going through other initial diagnosis at the time, and had started to sit up as well.  I was working FT and did not have anyway to be able to take her in at a moments notice if she needed adjustments, etc.  She wasn't sleeping as it was, and it was summer, so the sweaty issues that come along with helmets was a consideration as well.

I completely understand where you are coming from though, and it's a very upsetting thing to think time is escaping you to literally fix your child's head.  However, their heads change shape up until early teens, so that's something to consider as well.  

I think you should have a meeting with the pedi (or all in the practice) and tell them how this experience has affected you negatively and go from there.  

GL. 

futuremrsmcnichols

I feel for ya! DD#2 was diagnosed with tort at 6 months old although I had mentioned that I thought something off with her ability to hold her head upright at her 2 month appointment. We got handouts about certain stretches we needed to be doing and did this up until we were at the doctor for an ill visit when she was 5 months old and I brought up the issue again and they referred us to PT. By this time, she was not even rolling.

She by this time also had developed mild plagio. We chose not to see a specialist about this. Around the same time, she also had some reconstructive surgery to her face and ear, and our plastic surgeon felt as though her asymetry wasn't bad enough to recommend a head CT or anything like that.

Her tort was not bad enough to qualify for PT through EI (we see them for her diagnosis of hearing loss). We did private PT twice a week, then weekly, then bi-weekly for a period of 3 months. We also got her aided for her hearing loss because the therapist felt as though the tort may have been exacerbated by the hearing loss because she has unilateral (one sided) loss and thought that maybe she tilted her head this way to hear better out of her good ear. The therapists were so good at showing us how we could coordiate her stretches into everyday things, like diaper changes, etc and do them the right way. In a period of these 3 months, she went from not rolling to pulling up to furniture and standing with assistance. She started off with right sided residual weakness and that is gone.

In the grand scheme of things, yes, it may seem as though your pedi has been neglectful in some ways, but your LO is still young and being banded at 7 months is still a young age. I know a physician who's DD did not get banded until 10 months and this was because her pedi ignored her concerns for tort/plagio also.. and her mother was a doctor! Good luck with everything!

 

 

stanfordt04

futuremrsmcnichols:

I feel for ya! DD#2 was diagnosed with tort at 6 months old although I had mentioned that I thought something off with her ability to hold her head upright at her 2 month appointment. We got handouts about certain stretches we needed to be doing and did this up until we were at the doctor for an ill visit when she was 5 months old and I brought up the issue again and they referred us to PT. By this time, she was not even rolling.

She by this time also had developed mild plagio. We chose not to see a specialist about this. Around the same time, she also had some reconstructive surgery to her face and ear, and our plastic surgeon felt as though her asymetry wasn't bad enough to recommend a head CT or anything like that.

Her tort was not bad enough to qualify for PT through EI (we see them for her diagnosis of hearing loss). We did private PT twice a week, then weekly, then bi-weekly for a period of 3 months. We also got her aided for her hearing loss because the therapist felt as though the tort may have been exacerbated by the hearing loss because she has unilateral (one sided) loss and thought that maybe she tilted her head this way to hear better out of her good ear. The therapists were so good at showing us how we could coordiate her stretches into everyday things, like diaper changes, etc and do them the right way. In a period of these 3 months, she went from not rolling to pulling up to furniture and standing with assistance. She started off with right sided residual weakness and that is gone.

In the grand scheme of things, yes, it may seem as though your pedi has been neglectful in some ways, but your LO is still young and being banded at 7 months is still a young age. I know a physician who's DD did not get banded until 10 months and this was because her pedi ignored her concerns for tort/plagio also.. and her mother was a doctor! Good luck with everything!

 

 

I have nothing but good things to say about pedi especially after I read about others ignoring different symptoms and parent concerns... my pedi immediately sent me and referred my LO to PT at his one month check up after I told him my LO was turning to the left...We have been getting PT since then... his PT noticed his plagio, so immediately i contacted Children's Hospital Of Philadelphia but they wouldn't even consider evaluating him until six months... i thought this was ridiculous and after a lot of research and high recommendations i found a fantastic place that would see him and told me he had severe plagio. he has been in a helmet since he was a little over three months. i wish you all the best! a really good friend of mine had her LO in a helmet at 6 months and started PT for tort at 6 months... and he is making GREAT progress!:)

Futuremrs... I think I have PM you before since I read about your LO having tort, plagio, and hearing loss... my LO has severe hearing loss in his right ear and moderate loss in his left... did you notice if these three things are connected in any way?  

robynlesley

Vent away!

First off... while starting helmet treatment before 6 months is a good time for growth spurts, at 7 months your son will likely still do quite well in the DOC Band. You're being proactive NOW so that's a great thing.

My DS was dx with moderate Torticollis and Bracycephaly at his 2 month well baby visit.  I started PT 2x per week immediately.  Both the pedi and the PT suggested repositioning for his flat head, but it actually worsened as he began to sleep better.  At his 3 month appt. my pedi suggested the eval. at Cranial Technologies (he was one of five in the group, and the most proactive). The eval was 2 weeks later and DS ended up in his 1st DOC Band at 4.25 months.

DS was in PT for the Torticollis until he was crawling, at 9 months.  So for about 7 months total. I noticed a slight regression when he learned to walk at 15 months, but since then there is no remaining issues?unless his seeming lefthandedness is a result of having right tort (left side was stronger/tilt and weakness to the right).

 So PT timeline: ages 2 months to 9 months, moderate dx

Helmet (DOC Band): 4.25 months to 8.5 months (2 helmets, worn 8 weeks each). Dx was severe bracycephaly (pics/etc. in my blog).

***

Honestly, a LOT of pediatricians feel the plagiocephaly will correct itself.  Helmet therapy is still not always recommended. I'm not sure why.  I can understand being upset about the Torticollis moreso, because it's a physical issue. I think you need to either speak to the pediatricians if you like them otherwise, or avoid the one who was laid back for well visits, or look for a new one if you don't feel confident in them.  It's your call. I really think Tort/Plagio is missed more often than not.  Glad you're getting your son treated now.

aeh72

Thanks again to everyone else who posted. Hearing everyone experiences and advice is so helpful.  It's so nice to have such a wonderful community of moms (and dads!) to share thoughts with and to go to for guidance.  I've found that no matter how alone you feel in whatever situation you're dealing with, there is always someone else out who knows exactly what you're going through and being able to connect like that - even with anonymous internet strangers - is awesome.

alisonann15

Our baby was diagnosed at 4 months as well. The pedi did not notice at her 2 month appointment, nor had we realized at home. We got into PT at 4 1/2 months. It is now a month later and I don't see much progress. I have asked about her flat spot several times but they don't seem too concerned. They have it charted as "mild". I am most worried about her neck as the muscles still seem so tight. I too wish we would have figured this out and got into PT at 2 months old. When I look back at pictures her head was always falling to the left. Picture after picture her head was in the exact same position!! I feel so dumb for not noticing. My friend's son has tort/plagio as well. He was diagnosed very early on and had his helmet early as well. Last time I talked to her he was getting the helmet off in a month or so. He would be 8 months now. From what I have read most cases are corrected by one year old.  My daughter was also 6 weeks preemie so they use her adjusted age. They say she 4 months at her appointment when in reality she will be 6 months on the 4th. So they aren't as worried about her hitting milestones until her adjusted age. More mommy guilt!!!