helmet or helmet band question

irishbaby0708

LO has Torticollis and a bif flat spot on the back of his head.  I was told theTorticollis was mild and he's been going to PT for it but, the Pt suggested and so did EI that we have him evaluated for the Helmet or helmet band.  I have an apt with the pedi on Monday so I'm going to talk it over with her but, was wondering if anyone's lo has to wear it and if they can tell me a few things about it:

1) How bad was the flat spot

2) What actual age and adjusted age was LO

3) How often do they wear it? 

Thanks

g_belle

We consulted with a specialist but decided against doing the helmet but hopefully this helps a bit:

1. Flat spot is noticeable but not causing his facial features to be asymetrical- so it's not severe

2.  Actual age- 8 months, adjusted about 6 1/2.  We were told that we really needed to make a quick decision since time wasn't really on our side at that point.

3. He would have worn it 22 hours/day for about 12 weeks. 

J has pretty severe eczema (including on his face and scalp) and his skin gets irratated very easily.  The dr. told us that eczema babies have a much harder time tolerating the helmet and generally dont' get as great of results since they can't stand to wear it for the needed amount of hours.  So- we opted against it.  Kiddo is already itchy enough and sees enough dr.'s so it wasn't worth it to us.  I did feel better after talking to the specialist because at least we were making an informed decision.

jbl126

See siggy.  Ava is wearing the helmet.

1) How bad was the flat spot  it was noticeable and her forehead and cheek stuck out.

2) What actual age and adjusted age was LO She was 7 mths actual, 5 1/2 adj when she started wearing it

3) How often do they wear it?  They gradually go up to wearing it 23hrs a day.  The one hour off is for cleaning.

Let me just say I am so happy we put her in the helmet.  After the first month, we noticed a huge difference.  The first night she slept with it was pretty rough and now it is no big deal.  The only time it is annoying is when we take it off.  She sweats in it so her hair is sweaty and itchy.  And it can smell pretty bad.  We go back next week for a checkup.  It will be 3 months in of wearing it.  I have no idea if he will still want her to wear it.  But at this point, I am expecting her to wear it until she is 1 actual.

Good luck!

hmms

1).  DS was referred to a pediatric plastic surgeon at Mayo, based on his measurements DS fell into the "moderately severe" range.  It was quite noticeable, it was on the back-right side of his head.

 2).  DS was referred by our pedi at his 4-month check-up, it took about a month to get in w/ the plastic surgeon and 3 more weeks to get the helmet (custom made).  So it was just before 6-months (5 months adjusted).

3).  The first week is a gradual increase in hours/day, after one week, he wore it for 23 hours/day, taking it off for bathtime (I cleaned it while he bathed).

We'd do it again - it was a pain and I hated it everyday, but we're happy with the results.  They believed he'd wear it about 4-months, but he had quick progress and it was off in 10 weeks.  The younger they wear it the better, 4-6 months is the optimal age to start because they are growing so quickly.  The faster they grow, the faster their head fills into the helmet.

DS adjusted quickly to it (better than me) and we had no problems with it.

gwenypher7

Irishbaby - we're in the exact same boat as you. Our physical therapist is scheduling a consult with Scottish Rite to see if DD needs the helmet. She is 8 months (6 months adjusted) and has torticollis and a pretty noticable flat spot.

Keep us updated about what they end up deciding for your DS!

mek10976

Simon also had torticollis.  We did EI.  The pedi said to watch the spot, but that when he has better head control and not spending so much time lying down it should fix itself.  It didn't.  Around 8.5 months we went to Cranial Technologies and his plagio was diagnosed as moderate-to-severe.  He started wearing it at 9 months (7 adjusted) We decided to get the DOCband.  He had to wear it 23 hrs. a day.  We could take it off for 1hr. to bathe him and clean the helmet.  He ended up wearing it for 3 months.  A second band was recommended b/c we had run out of room in the 1st one before a full correction was made.  But we saw a big difference in his head after 3 months and decided to not do the 2nd.  After all, there was no guarantee that the 2nd helmet would make any more improvement.  His head still isn't perfect, but it is significantly better than it was.  Feel free to PM me if you have anymore questions.

mek10976

I forgot to add that I have before/after pics from Cranial Tech. that I could show you.

sunriz

1) How bad was the flat spot -DD also had torticollis and was referred for PT at 4 1/2 months of age.  Her pedi felt that her flat spot was mild and it would move back once she was off her back.  Her PT really felt we should see a specialist so we did.  We saw a neurosurgeon and he diagnosed her as having moderate to severe plagiocephaly and recommended the helemt.  So we decided to get it.

 2) What actual age and adjusted age was LO - She got her helmet when she was 81/2 months actual; 7 months adjusted.

3) How often do they wear it? -  time was built up to 23 hours a day (like pp said 1 hour off for bathing and cleaning of the helmet.  DD had a Starband.  She got it off 2 weeks after her 1st b-day.  She did really well with it.  Sometimes it would shift on her when laying down.  It also caused her head to sweat, but she got used to it, she did wear it over the winter too! 

 I am really glad we did it.  Her head was not perfect, but it does continue to shift even after the helmet is done, until they are like 4 or 5. 

Hope this helps!