another question for plagio/torticollis

Well, I have been doing a lot of research about plagio/tort. on the Internet and from TS. I don't know what I would do without this web site. I called the number my PT gave me for helmets and they said I need a script from pediatrician. So, I immediately called the ped and I am hoping to hear from them tomorrow morning. We love our pediatrician.

So, my new questions are:
1 - Did you need a script to get a helmet to see the required doctor?

2. - Was your pediatrician able to give you a name of a place for helmets where they accepted your insurance(the place my PT gave us did not accept our insurance - this is the first time I have run across a place that does not accept the ins we have)

3 - My DS will be 4 months on Oct 27 - how did you reposition them during the night???

4 - So far, we have increased belly time, using exersaucer, jumper(they just sit in it), belly time(he hates it!!!) and holding him(as much as possible with twins - I feel GUILTY over this - however, our DS was the "fussy" baby and probably got held twice as much as my DD but I still feel GUILTY) and we are going to attempt to have him sleep on his belly during naps downstairs with us( we have not accomplished this yet)

Any other suggestions to help his plagio.

5 - Did anyone have their plagio resolved by just doing stuff at home? It appears his tort is resolved. However, I do have Early Intervention coming out next week to evaluate him. From reading a previous post, we did look down on his head and looked at his ears and they are DEFINITELY off balance. This makes me REALLY nervous.

I feel like I should be doing more and I want everything taken care of yesterday. I have no problem with a helmet for him but I wish I could see all the necessary doctors ASAP.

Thanks for listening !!!!

 

Hi,

my dd's torticollis probably wasn't as bad, but just wanted to give you some encouragement. I think hers was actually pretty mild; the dr didn't even notice it, it was me who got concerned. She did have a really bad flat spot, but not bad enough for a helmet. It's been probably about 9 mos since we started all that & her head looks pretty good now! So, I think mostly it just takes time.

DD hated tummy time too....and once she learned how to roll over, there was just no putting her on her tummy. I got her one of those Bumbo seats & a little tray (like if you were going to eat breakfast in bed) and put toys on the tray for her to play with while she was sitting in the Bumbo. She loved it!

It actually sounds like you're right on track & doing all you can. I know it's hard not to worry, but torticollis is easily treated. I don't know much about the plagio, but sounds like you're in good hands! Just trust your instincts & that "mama bear" inside!

 

1 - Did you need a script to get a helmet to see the required doctor?
My pedi gave me a referral to the Ortho Clinic at Sick Kids in Toronto.

2. - Was your pediatrician able to give you a name of a place for helmets where they accepted your insurance(the place my PT gave us did not accept our insurance - this is the first time I have run across a place that does not accept the ins we have)
It doesn't look like our insurance company is going to cover the helmets, since they're largely cosmetic and they aren't covered by our provincial universal health care program.

3 - My DS will be 4 months on Oct 27 - how did you reposition them during the night???
We had our boys in sleep positioners to promote side sleeping (the only one strong enough to hold them was the air flow positioner from The First Years). We set the alarm to check their position every 2 hours.

4 - So far, we have increased belly time, using exersaucer, jumper(they just sit in it), belly time(he hates it!!!) and holding him(as much as possible with twins - I feel GUILTY over this - however, our DS was the "fussy" baby and probably got held twice as much as my DD but I still feel GUILTY) and we are going to attempt to have him sleep on his belly during naps downstairs with us( we have not accomplished this yet)
Within a few weeks he'll be strong enough to rest in his exersaucer, bumpo, jumper, etc. without you. Sounds like you're doing everything right.


5 - Did anyone have their plagio resolved by just doing stuff at home? It appears his tort is resolved. However, I do have Early Intervention coming out next week to evaluate him. From reading a previous post, we did look down on his head and looked at his ears and they are DEFINITELY off balance. This makes me REALLY nervous.
We worked like crazy for 4 months and saw improvement but not enough to relieve my worry that the boys might not get dates as teenagers.

You are on the right track and you're doing everything just as you should be. Hopefully you'll see improvement within three months, but if not then you're still in the optimal time frame for a helmet (6-8 months).

PM me any time.
[/quote]

 

Cigna health insurance will not pay for the helmet. I am so pi**ed about it. They'll pay for Viagra and crap like that but not for a baby who has a severe flat spot and whose ears are uneven. It is going to cost us 2500 bucks, but my daughter is getting the helmet regardless. I am going to fight them on this though.

 

Ds is still seeing PT about every month for rechecks for torticollis, he still has slight tilt esp. when tired. His head shape has imporved drastically since 4 mo and keep getting better,he would not even qualify for helmet at this point. Just keep doing what you are already doing, sounds like you are doing everything you can already!
From what I have heard many insurance plans will not cover helmets, but a friend of mine ins. finally covered half the cost, but still cost her $1500.

good luck and keep up the good work

 

Yes, we took a script down to the NOPCO. Our ped gave us a name of a doc at Children's Hospital in Boston. The doc took measurements, evaluated Kyle and deemed him a candidate for a helmet. As I noted in my other post, he was 17mm which is pretty severe, insurance covered 100% as long as the measurement was over 11mm. We went immediately downstairs in the hospital and got fitted that afternoon. We did not pay one penny for absolutely anything during the whole process.

I did not position Kyle at all at night except for what I put in my story about changing his position in his crib and moving his mobile and items on the walls to try to get him to look in different directions.

Again, like I said in my other post. There have been many cases since I have become aware of plagio (almost 6 years now) that have improved with positioning. Generally cases that are caused by positioning can be corrected with positioning while cases caused inutero need additional treatment. This is not to say that this is the case for all children, there are definitely children whose conditions were caused by positioning that require treatment. Also, generally if the issue is only the flattening and no other misalignments it is more probable that positioning can correct but if there are other facial misalignments then treatment is generally needed. Even if the head starts to round back out it is nearly impossible to move ears, straighten mouths etc. with positioning.

 

I dont understand why a helmut was suggested for a 4 month old? A baby cant wear one until their neck muscles have strengthened. They also have bands. Both my boys had torticolis and it was bad. They started therapy around 4 months old and are doing great at 8 months. Their heads arent perfect yet but they are getting there. We do therapy every week and I was given different exercises to do with them at home.
You turn the heads at every opportunity, lots of tummy time (they get use to it) and I also suggest using a bumbo or bebe pod to keep them off their heads. When you hold them let the head and neck hang slightly to help stretch the muscles.

I dont know what Plagio is.

 

QUOTE
I dont understand why a helmut was suggested for a 4 month old?
4 months is the earliest I have encountered where any doc will begin treatment. This is the point where the condition can be accurately evaluated and treatment can begin in time to catch major growth spurts thus reducing the time the helmet is needed. I still have Kyle's helmet, I will try to remember to weigh it, my guess is it weighs little more than a hat and newborns usually wear hats from day one. QUOTE
I dont know what Plagio is.
This is probably why you don't understand the helmet process.

 

My PT recommended us getting their heads measured to see whether or not my DS should be considered for a helmet. She said his head looked really flat in her experience in the field and it would get the ball rolling in case he is in need of a helmet.

So far, my DH called the ped and they said we need to get our PT to write them a letter saying my DS might need a helmet and should get his head measured and then the ped office will write a letter of medical necessity since we will have to go out of network to get these appointments. I will be calling her Monday morning. I will keep everyone updated. Thank you!!!!!!! for all your input thus far!!!!

 

Actually I looked up plagio. I was never given this term when my twins were diagnosed with torticolis.

Both had very SEVERE flat heads on one side. They are shaping up very nicely since they have had therapy for the past 4 months. One twin is almost finished with his therapy and the other will finish out the year for their necks. They were both evaluated for helmuts or bands and do not qualify now even though they started off at the worst.

I do suggest working with the therapist for a couple months. Good luck.