Re: Dealing with guilt

[Guest guest]

Hi! I think the guilt you are feeling is what a lot of us here at the group

have felt! I wondered why my ped's office didn't ever mention tummy to play

though at each appt. they would confirm that he was sleeping on his back. I

also felt guilty and blamed myself because I was the one putting him in his

swing, bouncy chair, and car seat to sleep. Also because I noticed my son's

brachy at 4 months and didn't mention it to his doctor's until his 6mo check

up thinking it might go away. Once we had my son casted through Cranial Tech

and now that he has his helmet i feel a lot better about the situation and

am not feeling the guilt as much. Possibly because i know i am taking care

of the situation.

I would ask friends and other family members to be honest with you and see

if they notice his head shape. Also think about how you would feel in the

future if he wasn't treated. I've always been told if it's broke, fix it,

and that is what i did. Cranial Tech will be very informative and will be

able to tell you things about your sons head that you hadn't even noticed

and answer all the questions you have. I thought my son only had a flat

head come to find out that he had mild torticollis, facial assymetry where

his eyes, cheeks and ears were off, along with having brachy with a little

plagio also. Once I heard all that i knew that he needed to be in his band.

There was a lot more going on than i'd realized.

I think the most worrisome is the point that you are at now, wondering what

to do, blaming yourself, etc... Most parents are very happy at their

decision to band their baby and I'm sure if that is what you decide to do

you will be too. My son is now 9 months old and he dosn't mind his helmet

at all, which he's been in for 2wks today and will be in for 3-4 months.

He's grabbed at it about 3 times but i think it was because he'd noticed

something on his head not because he was irritated with it. Casting wasn't

as bad as I thought. I think the worst time is the point you're at now and

then if you decide to band him waiting for the casting and banding days.

Please let us know how your appt. goes with CT and if you decide then to

band him or if you wait until your appt. with the neuro. When you are at CT

ask them for their before & after pic's. Where do you live at and which CT

are you going to? Again let us know how everything goes! And, even though

i know it's hard, try not to blame yourself. It will get easier...

brachy/mild tort banded 11/17

Ashburn, VA

>From: " lilybelle614 " <bmathers614@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Dealing with guilt

>Date: Wed, 01 Dec 2004 15:42:18 -0000

>

>

>Hi. I am new to this group. I am having a hard time dealing with the

>guilt regarding my 4 month old son's plagiocephaly. I keep asking

>myself how did I let this happen? I found out from my friends

>(later) that many of them used side positioners/repositioning and

>some even allowed their kids to sleep on their stomachs (against

>recommendation of APA) to prevent this. Why didn't anyone tell me?

>Why don't doctors warn parents when telling them APA recommendation

>Back to Sleep/Tummy to Play? My son has an appointment with Cranial

>Tech on December 6. I have an appointment with a pediatric

>neurosurgeon on January 7 (trying to get an earlier appointment). I

>have been trying aggressive repositioning the last month but not

>getting the results I want. My In-Laws are afraid that Cranial Tech

>will push us into getting a helmet. Should I wait to see the

>specialist before committing to a helmet? Does repositioning work?

>How do you know if it is bad enough for a helmet? My In-Laws say

>they can't even tell. (I can).

>I know I have a lot of questions. Please help.

>

>

>

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[Guest guest]

No need to feel guilty -- and here is a good example of why not:

My 8 month-old daughter, Grace, is a twin. By 3 months, we knew Grace had a major flat spot, but had NOTHING. They had the same treatment completely from the time they were born. Same positioning, etc. 's head is perfectly round, and Grace's is perfectly flat!!! We repositioned Grace for 3 months, with no results, so we're going on to the helmet, which we get tomorrow. Grace was just more susceptible to plagiocephaly. (Perhaps her positioning in the womb -- head down, and stuck there!) But I know it is nothing we did, she was just more susceptible to it. By the way, Grace and are our 3rd and 4th. Neither of our older kids ended up with plagiocephaly either.

I know the helmet seems drastic, but a few months in the helmet, and your son will have a lovely round head for the rest of his life -- very worth it! He'll never even remember it. They say it's harder on the parents than it is on the baby!

Grace 3/17/04

plagio/mild tort

helmet tomorrow!

Dealing with guilt

Hi. I am new to this group. I am having a hard time dealing with the guilt regarding my 4 month old son's plagiocephaly. I keep asking myself how did I let this happen? I found out from my friends (later) that many of them used side positioners/repositioning and some even allowed their kids to sleep on their stomachs (against recommendation of APA) to prevent this. Why didn't anyone tell me? Why don't doctors warn parents when telling them APA recommendation Back to Sleep/Tummy to Play? My son has an appointment with Cranial Tech on December 6. I have an appointment with a pediatric neurosurgeon on January 7 (trying to get an earlier appointment). I have been trying aggressive repositioning the last month but not getting the results I want. My In-Laws are afraid that Cranial Tech will push us into getting a helmet. Should I wait to see the specialist before committing to a helmet? Does repositioning work? How do you know if it is bad enough for a helmet? My In-Laws say they can't even tell. (I can). I know I have a lot of questions. Please help. For more plagio info

[Guest guest]

Welcome to the group. First of all you are not alone in the guilty feeling. However, you didn't know about the possibilities. Had you known you would have acted differently. Please don't beat yourself up over this. You are doing the very best for your son. You are seeking the treatment he needs. That is wonderful. Second, CT is a very reputable company. They di not "push" bands on people. They have a very solid business model and a lot of experience. They will be very honest with you. After looking at his head and doing an evaluation, which may or may not include actual measurements, they will either tell you he is a canidate, his is not, or it's borderline and up to you.

Repo does work but not for all cases. It depends on how diligent you are and can be. It depends on head shape to some degree and severity. It also depends on neck involvement. Does your son tilt at all? My dd developed her plagio inutero. She also had tort. We did all of the repo and positioners from birth - I didn't really know why I was changing her position I just did. It did not work. So again don't beat yourself up. She was banded by CT in Charoltte, NC at 4 1/2 months. She wore 2 bands over 14 weeks. She didn't receive 100% correction but it is only noticable to the plagio police now .

You will still need to see the specialist for a RX. They can not band without one. However, our ped wrote the RX for na after seeing the evaluation from CT. He had never written one before but did have 2 patients who had been there via specialists.

mom to na

DOC Grad 2/20/04

Tort Resolved

SClilybelle614 <bmathers614@...> wrote:

Hi. I am new to this group. I am having a hard time dealing with the guilt regarding my 4 month old son's plagiocephaly. I keep asking myself how did I let this happen? I found out from my friends (later) that many of them used side positioners/repositioning and some even allowed their kids to sleep on their stomachs (against recommendation of APA) to prevent this. Why didn't anyone tell me? Why don't doctors warn parents when telling them APA recommendation Back to Sleep/Tummy to Play? My son has an appointment with Cranial Tech on December 6. I have an appointment with a pediatric neurosurgeon on January 7 (trying to get an earlier appointment). I have been trying aggressive repositioning the last month but not getting the results I want. My In-Laws are afraid that Cranial Tech will push us into getting a helmet. Should I wait

to see the specialist before committing to a helmet? Does repositioning work? How do you know if it is bad enough for a helmet? My In-Laws say they can't even tell. (I can). I know I have a lot of questions. Please help. For more plagio info

[Guest guest]

I have so been where you are! I was misinformed as well and when I did start to worry about Kennedy's mishapen little noggin, the pediatritian kept giving me the ole, "it will round out as she gets older and sits up more" routine. I didn't know what to do but my gut said that wasn't right. I got a second opinion and was immediately sent to PT for torticolis...which I had not even noticed! That made me feel really bad! We were then sent to Cranial Tech for an evaluation and my husband was also skeptical. They did not pressure me in any way. They took measurements and showed me exactly what areas of her head were out of whack and showed me before and after pictures of another child with similar head shape. I cried when they told me that they could not "push back" anything already "sticking out" but was encouraged by the photos I saw. They told me that Kennedy was a good candidate for the band but that it was completely up to us. They were very kind in letting me know that

this is not my fault. I opted for the band because I could not take the chance of her head not correcting and me having to look at it and feel guilty for the rest of my life. I got a lot of "input" from people around me, but she is my child and I had to decide what I thought was best for her (with my husband, of course). My husband is no longer skeptical of CT or the band. Kennedy received her band 11/23/04 and we both swear we are seeing rounding already. We are anxious to take her for her first follow up but have had to delay it twice due to contagious infections. We go Friday. I have heard a lot of people achieve success with repo, we just didn't. It is hard because it is not a black and white issue. You have to decide for yourself what is best and that was the hardest thing for me. I wanted someone to tell me what was best so I could just do it. I feel good about the choice we made. I still feel guilty, but that is kind of who I am. I am sorry you are having to go through this. This is an excellent group. You will find big ears and shoulders here. Hang in there. My understanding is that you have a little time to work with. Kennedy is 6 1/2 months old now. We had to make a pretty rapid decision due to wasted time with ped 1. I'll be thinking about you.

Christy - mom to Kennedy

tort/plagio/brachy

DOC band 11/23/04

Tulsa, OKlilybelle614 <bmathers614@...> wrote:

Hi. I am new to this group. I am having a hard time dealing with the guilt regarding my 4 month old son's plagiocephaly. I keep asking myself how did I let this happen? I found out from my friends (later) that many of them used side positioners/repositioning and some even allowed their kids to sleep on their stomachs (against recommendation of APA) to prevent this. Why didn't anyone tell me? Why don't doctors warn parents when telling them APA recommendation Back to Sleep/Tummy to Play? My son has an appointment with Cranial Tech on December 6. I have an appointment with a pediatric neurosurgeon on January 7 (trying to get an earlier appointment). I have been trying aggressive repositioning the last month but not getting the results I want. My In-Laws are afraid that Cranial Tech will push us into getting a helmet. Should I wait

to see the specialist before committing to a helmet? Does repositioning work? How do you know if it is bad enough for a helmet? My In-Laws say they can't even tell. (I can). I know I have a lot of questions. Please help. For more plagio info