Re: Getting used to the idea

February 23, 2010

Welcome, Jen. Looks from strangers are no problem, I assure you.

Pathetic and cute go together well, so the kid just gets more love.

You may correctly sense some crazy unspoken judgements of your

parenting, but that's nothing compared to the overt criticism of the

baby's extended family.

We've been lucky there, too, actually. Clara's grandfather

identified her as a trailblazer right away, because she was the twin

who put her head down and bore most of the trauma of delivery.

Besides scaring the crap out of me in the delivery room with her

appearance (1-minute Apgar score 6, I think), we now understand

plagio to be the true burden of precedence.

Her sister has some mild asymmetry also, and unfortunately swallowed

Clara's meconium on the way out, so she deserves some OB cred.

But I have a third child, a new son born 12 lbs. 4 oz. (due to

complications of his own, but he's fine) and his head is perfectly

round. He can thank his sisters for their remodeling /in utero/.

I thank God for giving me three healthy children in a span of two

years. Things could have been so much worse, every step of the way.

I saw a guy on TV today with a deformity like Clara's, or rather what

it would have been without the helmet. You could see the torticollis

still, and he looked about 40.

Although we've had many disappointments with the care Clara has

received, it's still a blessing in a larger sense. I don't know

about you, but I'm counting it!

--

Thad Launderville

Montpelier, VT

Clara age 22 1/2 months, in STARband 6 months

On Feb 23, 2010, at 7:49 PM, jenkallatch wrote:

> As a first time mom, this is just so hard, would love some

> comforting thoughts and advice

February 24, 2010

I can't imagine dealing with all of this as a first time mom! My son (9 mos, in 2nd DOC band for plagio, had in-utero tort) is my 3rd and I am pregnant with my 4th and I still think that first baby is the biggest challenge. Just know that noone could do a better job for your son than you are doing for him. I think all parents + peds of tort/brachy/plagio babies deserve credit for diagnosing and treating - this is still a very "new" thing! Good luck to you and your son, use this group as often as you need. The support and advice are amazing. monks (jj, 9 mos, DOC band w severe plagio)Sent from my Verizon Wireless BlackBerryFrom: "jenkallatch" <jenkallatch@...>Date: Wed, 24 Feb 2010 00:49:14 -0000<Plagiocephaly >Subject: Getting used to the idea My son was just evaluated today and it was recommended I get him fitted for a helmet. He was 11lb 10oz when he was born so of course has torticollis and now has a flat spot on his head. I hate the idea. Breaks my heart to think of people staring at him.I'm going to take him to CHOP in Phili, any recommended doctors? As a first time mom, this is just so hard, would love some comforting thoughts and advice

February 24, 2010

After reading your post I felt that our experience could help you. Our son wears a helmet now and has since August. We started this whole process at CHOP in Philadelphia as well through the neuro surgury dept with a Doctor and a nurse practioner who recommended that we go to NOPCO- a helmet prvider located in the basement of CHOP. Our son wore a helmet form there starting in August. I assumed he was doing well with it but he was not making as much progress as we would like. It is a long story but we ended up in the plastic surgury department of CHOP in December (after some disappointment with NOPCO) and they sent us to a new helmet provider (Med East in blue Bell) and we have had wonderful results after only 2 months and he is a little on the older side now (13 months). We see

Dr. Whitaker at CHOP now. Our son also has tortcolis and we were able to qulify for early intervention services through the county we live in (montgomery) so now a physical therapist comes to our house to work with him once a week and he is making good progress. I write this to you because I really wish I knew what I know now when I started this process in August. Please let me know if I can help you in any way. I am a first time mom as well and I understand how tough this can be. It does get easier. I also have a hard time with people staring at him but honestly it does not bother my son so I try not to let it bother me. He is healthy otherwise and I try to let that comfort me.

Best of Luck!!!!

From: jenkallatch <jenkallatch@...>Plagiocephaly Sent: Tue, February 23, 2010 7:49:14 PMSubject: Getting used to the idea

My son was just evaluated today and it was recommended I get him fitted for a helmet. He was 11lb 10oz when he was born so of course has torticollis and now has a flat spot on his head. I hate the idea. Breaks my heart to think of people staring at him.I'm going to take him to CHOP in Phili, any recommended doctors? As a first time mom, this is just so hard, would love some comforting thoughts and advice

February 24, 2010

My son got his DOC band about 2 weeks ago and before he got it I hated the idea of people staring at him too. It hasn't been that bad though in public. People do glance at him, but I just act normal. People still come up and tell him how cute he is. A couple have asked me about it and I explain. A lot of people have heard of it. Plus now with him crawling more and getting into things, I don't mind that he has some head protection (trying to look at the positive side). Just remember you're doing the best thing for your son. Good luck! From: jenkallatch <jenkallatch@...>Subject: Getting used to the ideaTo:

Plagiocephaly Date: Wednesday, February 24, 2010, 12:49 AM

My son was just evaluated today and it was recommended I get him fitted for a helmet. He was 11lb 10oz when he was born so of course has torticollis and now has a flat spot on his head. I hate the idea. Breaks my heart to think of people staring at him.I'm going to take him to CHOP in Phili, any recommended doctors? As a first time mom, this is just so hard, would love some comforting thoughts and advice

February 24, 2010

Just following up on what said - we also go to Kimura at Medeast

Post-Op and she is great. Our physical therapist told us about another family

that had problems with NOPCO (the helmet provider in the basement at CHOP), so

although I don't know anything about them personally, I would not recommend

using them.

>

> After reading your post I felt that our experience could help you. Our son

wears a helmet now and has since August. We started this whole process at CHOP

in PhiladelphiaÂ as well through the neuro surgury dept with a Doctor and a

nurse practioner who recommended that we go to NOPCO- a helmet prvider located

in the basement of CHOP. Our son wore a helmet form there starting in August. I

assumed he was doing well with it but he was not making as much progress as we

would like. It is a long story but we ended up in the plastic surgury department

of CHOP in December (after some disappointment with NOPCO) and they sent us to a

new helmet provider (Med East in blue Bell) and we have had wonderful results

after only 2 months and he is a little on the older side now (13 months).Â We

see Dr. Whitaker at CHOP now. Our son also has tortcolis and we were able to

qulify for early intervention services through the county we live in

(montgomery) so now a physical

> therapist comes to our house to work with him once a week and he is making

good progress. I write this to you because I really wish I knew what I know now

when I started this process in August. Please let me know if I can help you in

any way. I am a first time mom as well and I understand how tough this can be.

It does get easier. I also have a hard time with people staring at him but

honestly it does not bother my son so I try not to let it bother me.Â He is

healthy otherwise and I try to let that comfort me.

> Best of Luck!!!!

>

> ________________________________

> From: jenkallatch <jenkallatch@...>

> Plagiocephaly

> Sent: Tue, February 23, 2010 7:49:14 PM

> Subject: Getting used to the idea

>

> Â

> My son was just evaluated today and it was recommended I get him fitted for a

helmet. He was 11lb 10oz when he was born so of course has torticollis and now

has a flat spot on his head. I hate the idea. Breaks my heart to think of people

staring at him.I'm going to take him to CHOP in Phili, any recommended doctors?

As a first time mom, this is just so hard, would love some comforting thoughts

and advice

>

March 2, 2010

Hi, i had my daughter fitted for one today at chop but am now reconsidering -

she has brachicephaly symmetrical - the therapist seemed very nice and said that

the helmet would be made custom according to the scan she took today. Is the

therapist at the blue bell office better at making adjustments, or is it that

the star band is better than the boston band? The therapist at chop said that

they are basically the same thing but that the boston band has foam layers

wheras the star band is solid foam. Is the star band lighter than the boston

band? she also mentioned that she could make the hole up top bigger for more

breathing room - my daughter gets very hot and its been a cold winter. who was

your therapist at chop? thanks for your help!

> >

> > After reading your post I felt that our experience could help you. Our son