Re: Re: 18 months old plagiocephaly - is it too late?! Please help

[Guest guest]

We too live out of state from CT and got scanned and banded within 5 days. My son didn't get correction though, I think because he is a small guy and just didn't grow enough to make the correction I was hoping for. But I hope that your lil one gets great correction with a good growth spurt! Its always better to try and fail than always wonder what ifSent via BlackBerry from T-MobileFrom: "michaelann32" Date: Mon, 27 Apr 2009 01:46:20 -0000<Plagiocephaly >Subject: Re: 18 months old plagiocephaly - is it too late?! Please help Hi! My son is almost 17 months, and we also were told not to worry about the flat spot on the back of his head. It wasn't until finding this group that I realized a helmet/band was still an option. I just found and joined this group last weekend & made an appointment by Tuesday of last week, and we are heading to cranial technologies this Wednesday for a consultation. I am hoping they will agree to help us! Because we live such a distance, if they agree to treat him, we are having the scan done that day to fit the helmet. I wish you a lot of luck!!! You are not alone! We are in a very similar boat! I pray we both have results with our kiddos! Good luck! ann > > > > My son has Plagiocephaly and we were told over the last 18 months by various NHS professionals that it was nothing to worry about and it would improve. it hasn't so we have signed up to have the helmet treatment but we are EXTREMELY worried. its not the money, its the fact that he is now a little boy really with likes and dislikes and feelings and we are wondering if it is going to be 10 or so months of toture for him with no result. Can anyone advise? we are new to this and have no really idea what we are letting ourselves or him into whether we do go ahead with is or whethre we dont. Has anyone out there had a helmet fitted so late in the day with good or bad results? please help as i can't sleep at night wondering what to do about this for the best. I am so angry that we didnt have good advice from the start. xx > > >

[Guest guest]

many thanks and everyone, it is very encouraging to know that we are not the only ones. We have his helmet fitting on 11th May and given his reaction to the scan I am NOT looking forward to it. to be honest the doctor wasn't that good at making Jake feel relaxed so i am worried about that happening again. Thanks for your tips on how to make it go smoothly - we will definitely give the clapping and cheering a go!

yes we are in the UK, are most people using this forum in the US then? The company we are going with use the LOCband and i dont realy know if this is the best one but its the first one we went to - did you all shop around then? are there some that are better for older babies?

thanks

Sue

mum to 18 months - LOCband to be fitted soon!

From: mommy2jaylina@... <mommy2jaylina@...>Subject: Re: Re: 18 months old plagiocephaly - is it too late?! Please helpPlagiocephaly Date: Monday, 27 April, 2009, 3:05 AM

We too live out of state from CT and got scanned and banded within 5 days. My son didn't get correction though, I think because he is a small guy and just didn't grow enough to make the correction I was hoping for. But I hope that your lil one gets great correction with a good growth spurt! Its always better to try and fail than always wonder what if

Sent via BlackBerry from T-Mobile

From: "michaelann32" Date: Mon, 27 Apr 2009 01:46:20 -0000<Plagiocephaly>Subject: Re: 18 months old plagiocephaly - is it too late?! Please help

Hi!My son is almost 17 months, and we also were told not to worry about the flat spot on the back of his head.It wasn't until finding this group that I realized a helmet/band was still an option.I just found and joined this group last weekend & made an appointment by Tuesday of last week, and we are heading to cranial technologies this Wednesday for a consultation. I am hoping they will agree to help us! Because we live such a distance, if they agree to treat him, we are having the scan done that day to fit the helmet.I wish you a lot of luck!!! You are not alone! We are in a very similar boat! I pray we both have results with our kiddos!Good luck!ann> >> > My son has Plagiocephaly and we were told over the last 18 months by various NHS professionals that it was nothing to worry about and it would improve. it hasn't so we have signed up to have the helmet

treatment but we are EXTREMELY worried. its not the money, its the fact that he is now a little boy really with likes and dislikes and feelings and we are wondering if it is going to be 10 or so months of toture for him with no result. Can anyone advise? we are new to this and have no really idea what we are letting ourselves or him into whether we do go ahead with is or whethre we dont. Has anyone out there had a helmet fitted so late in the day with good or bad results? please help as i can't sleep at night wondering what to do about this for the best. I am so angry that we didnt have good advice from the start. xx> >>

[Guest guest]

thanks . much appreciate your advice and hope all is well over the other side of the pond (i hope you get that expression and its not just a british thing!)

sue

x

From: <nwilkens2275@...>Subject: Re: 18 months old plagiocephaly - is it too late?! Please helpPlagiocephaly Date: Wednesday, 29 April, 2009, 1:04 PM

Most of us are from the US but we do have (have had) quite a few members from the UK. All are welcome! So don't let that be an issue. Not everyone is able to shop around for helmets because of insurance and/or location, it just happens that some people do have that opportunity. The company that we went to (Cranial Tech) has a great reputation overall, but also particularly with "older" babies (over 12 months old). But they don't have offices in the UK (only the US and Spain). I have heard of the LOCBand, but not in a while. It wouldn't hurt to do a search of old messages to see if anything comes up on it, or you can start a fresh post with UK and LOCband in the subject line, and hopefully it will jump out to people and you'll get some good info that way. Jake-2.5 (DOCBand Grad 9/08)Jordan-5> > >> > > My son has Plagiocephaly and we were told over the last 18 months by various

NHS professionals that it was nothing to worry about and it would improve. it hasn't so we have signed up to have the helmet treatment but we are EXTREMELY worried. its not the money, its the fact that he is now a little boy really with likes and dislikes and feelings and we are wondering if it is going to be 10 or so months of toture for him with no result. Can anyone advise? we are new to this and have no really idea what we are letting ourselves or him into whether we do go ahead with is or whethre we dont. Has anyone out there had a helmet fitted so late in the day with good or bad results? please help as i can't sleep at night wondering what to do about this for the best. I am so angry that we didnt have good advice from the start. xx> > >> >>

[Guest guest]

,

Jake will get his band on the same day that gets hers off.

He may do better with getting the band than he did with the scan. I know that did. She screams and screams every time her head is scanned. In fact, when we drive into the parking area, she starts saying, "Bye, Bye," which is her telling me that she wants to leave. When we get into the waiting area, she starts hyperventilating. Then the screams come. If we don't have a scan, she calms down a little while after we get in, but if we go into the room with the scanner, it all escalates.

When she got the band (at almost 15 months), they took us to a back room, put it on her, and then left for 10 minutes. During those 10 minutes, nursed and then got down to play with the toys in the room. They came back and checked for red spots, took the helmet to shave some off, and then came back and put it back on. didn't mind this at all. From the very beginning, the band was no big deal. She just played with it on.

We had a breaking in period, so it was perfect. Adjusting to sleep was a bit rough, but now sleeps better with it.

So, you never know...Jake may be just fine with it. Let us know how it goes.

, mom to , 20.5 months

24.5 weeks in STARband plus CST

land

Re: 18 months old plagiocephaly - is it too late?! Please help

Hi!My son is almost 17 months, and we also were told not to worry about the flat spot on the back of his head.It wasn't until finding this group that I realized a helmet/band was still an option.I just found and joined this group last weekend & made an appointment by Tuesday of last week, and we are heading to cranial technologies this Wednesday for a consultation. I am hoping they will agree to help us! Because we live such a distance, if they agree to treat him, we are having the scan done that day to fit the helmet.I wish you a lot of luck!!! You are not alone! We are in a very similar boat! I pray we both have results with our kiddos!Good luck!ann> >> > My son has Plagiocephaly and we were told over the last 18 months by various NHS professionals that it was nothing to worry about and it would improve. it hasn't so we have signed up to have the helmet treatment but we are EXTREMELY worried. its not the money, its the fact that he is now a little boy really with likes and dislikes and feelings and we are wondering if it is going to be 10 or so months of toture for him with no result. Can anyone advise? we are new to this and have no really idea what we are letting ourselves or him into whether we do go ahead with is or whethre we dont. Has anyone out there had a helmet fitted so late in the day with good or bad results? please help as i can't sleep at night wondering what to do about this for the best. I am so angry that we didnt have good advice from the start. xx> >>

[Guest guest]

Thanks ,

Well, we went to get Jake's LOCband today and it wasn't pleasant but in a funny way, not as bad as expected. he cried when he saw the consultant, but to be honest i dont think the guy had the best approach to it and could really have made jake feel a little more comfortable than he did. Although not unfriendly, i wouldn't have called him friendly either which is a bit of a shame in the job he is in!! Anyway, Jake hated (and still hates) having it put on, he wriggles and screams and properly cries which is horrible but once it is on he can be easily distracted and almost forgets about it. its only day one but i do feel that it might not be as hard going as expected, having said that Day 1 proper starts tomorrow when he needs to wear it 1 hour on and 1 hour off for the day. I expect he is going to hate the 'on' bit but be ok with wearing it. In a few days we have to get him to nap in it and then finally sleep a full night in it. i expect thats the

really tough bit....

anyway i feel a lot better than i did before and am now just keeping everything crossed for the next few days and of course that all of this actually hleps his head shape improve.

thanks to all of you for your help and advice. I still haven't been able to find a similar support group over here in the uk - anyone know of any?

Sue

x

From: mommy2jaylina@ aol.com <mommy2jaylina@ aol.com>Subject: Re: Re: 18 months old plagiocephaly - is it too late?! Please helpPlagiocephalyDate: Monday, 27 April, 2009, 3:05 AM

We too live out of state from CT and got scanned and banded within 5 days. My son didn't get correction though, I think because he is a small guy and just didn't grow enough to make the correction I was hoping for. But I hope that your lil one gets great correction with a good growth spurt! Its always better to try and fail than always wonder what if Sent via BlackBerry from T-Mobile

From: "michaelann32" Date: Mon, 27 Apr 2009 01:46:20 -0000<Plagiocephaly>Subject: Re: 18 months old plagiocephaly - is it too late?! Please help

Hi!My son is almost 17 months, and we also were told not to worry about the flat spot on the back of his head.It wasn't until finding this group that I realized a helmet/band was still an option.I just found and joined this group last weekend & made an appointment by Tuesday of last week, and we are heading to cranial technologies this Wednesday for a consultation. I am hoping they will agree to help us! Because we live such a distance, if they agree to treat him, we are having the scan done that day to fit the helmet.I wish you a lot of luck!!! You are not alone! We are in a very similar boat! I pray we both have results with our kiddos!Good luck!ann> >> > My son has Plagiocephaly and we were told over the last 18 months by various NHS professionals that it was nothing to worry about and it would improve. it hasn't so we have signed up to have the helmet treatment but we are EXTREMELY worried. its not the money, its the fact that he is now a little boy really

with likes and dislikes and feelings and we are wondering if it is going to be 10 or so months of toture for him with no result. Can anyone advise? we are new to this and have no really idea what we are letting ourselves or him into whether we do go ahead with is or whethre we dont. Has anyone out there had a helmet fitted so late in the day with good or bad results? please help as i can't sleep at night wondering what to do about this for the best. I am so angry that we didnt have good advice from the start. xx> >>

[Guest guest]

,

I'm glad to hear it's going fairly well. Sometimes didn't like it put on or taken off either. Once it's on 23 hours a day, it'll be no big deal.

graduated today. Like always, she screamed and even refluxed during the scan. Three of us held her down so we got a good scan with one try. After it was through, she calmed down and was fine while we talked.

She's asleep in her crib without her helmet for the first time in nearly 6 months - it seems strange.

I'll post more about it later.

, mom to , 20.5 months

STARband grad 05/11/09

land

Re: 18 months old plagiocephaly - is it too late?! Please help

Hi!My son is almost 17 months, and we also were told not to worry about the flat spot on the back of his head.It wasn't until finding this group that I realized a helmet/band was still an option.I just found and joined this group last weekend & made an appointment by Tuesday of last week, and we are heading to cranial technologies this Wednesday for a consultation. I am hoping they will agree to help us! Because we live such a distance, if they agree to treat him, we are having the scan done that day to fit the helmet.I wish you a lot of luck!!! You are not alone! We are in a very similar boat! I pray we both have results with our kiddos!Good luck!ann> >> > My son has Plagiocephaly and we were told over the last 18 months by various NHS professionals that it was nothing to worry about and it would improve. it hasn't so we have signed up to have the helmet treatment but we are EXTREMELY worried. its not the money, its the fact that he is now a little boy really with likes and dislikes and feelings and we are wondering if it is going to be 10 or so months of toture for him with no result. Can anyone advise? we are new to this and have no really idea what we are letting ourselves or him into whether we do go ahead with is or whethre we dont. Has anyone out there had a helmet fitted so late in the day with good or bad results? please help as i can't sleep at night wondering what to do about this for the best. I am so angry that we didnt have good advice from the start. xx> >>

[Guest guest]

How exciting for you !! Did you have good improvment after the 6 months? I presume you feel it was all worth it?! Its nice that she can sleep ok without it without too much trouble as that must be a big adjustment for her.

Good luck with it and let me know how you get on.

Jake cried this morning when we put it on the first time but then the second time he didn't - phew!

sue

xx

From: mommy2jaylina@ aol.com <mommy2jaylina@ aol.com>Subject: Re: Re: 18 months old plagiocephaly - is it too late?! Please helpPlagiocephalyDate: Monday, 27 April, 2009, 3:05 AM

We too live out of state from CT and got scanned and banded within 5 days. My son didn't get correction though, I think because he is a small guy and just didn't grow enough to make the correction I was hoping for. But I hope that your lil one gets great correction with a good growth spurt! Its always better to try and fail than always wonder what if Sent via BlackBerry from T-Mobile

From: "michaelann32" Date: Mon, 27 Apr 2009 01:46:20 -0000<Plagiocephaly>Subject: Re: 18 months old plagiocephaly - is it too late?! Please help

Hi!My son is almost 17 months, and we also were told not to worry about the flat spot on the back of his head.It wasn't until finding this group that I realized a helmet/band was still an option.I just found and joined this group last weekend & made an appointment by Tuesday of last week, and we are heading to cranial technologies this Wednesday for a consultation. I am hoping they will agree to help us! Because we live such a distance, if they agree to treat him, we are having the scan done that day to fit the helmet.I wish you a lot of luck!!! You are not alone! We are in a very similar boat! I pray we both have results with our kiddos!Good luck!ann> >> > My son has Plagiocephaly and we were told over the last 18 months by various NHS professionals that it was nothing to worry about and it would improve. it hasn't so we have signed up to have the helmet treatment but we are EXTREMELY worried. its not the money, its the fact that he is now a little boy really

with likes and dislikes and feelings and we are wondering if it is going to be 10 or so months of toture for him with no result. Can anyone advise? we are new to this and have no really idea what we are letting ourselves or him into whether we do go ahead with is or whethre we dont. Has anyone out there had a helmet fitted so late in the day with good or bad results? please help as i can't sleep at night wondering what to do about this for the best. I am so angry that we didnt have good advice from the start. xx> >>

[Guest guest]

Hi ,

I hope that Jake has adjusted well. I'm VERY behind in answering email and looking at posts. I do believe that wearing the helmet was totally worth it. We did get most of our improvement during the first couple of months in terms of the cephalic index, but she did get some additional rounding of her head after that so I don't regret keeping it on longer.

I do worry about regression even though I know that it's not likely. I put it back on her for a few nights, but it's off again tonight. Even though we're not in the "normal" range in terms of numbers, her head does look good. I doubt that anyone would know she'd ever had a flat head if they hadn't seen her before or known about the helmet.

Keep us up to date on how things are going.

, mom to , 21 months

STARband grad 05/11/09

land

Re: 18 months old plagiocephaly - is it too late?! Please helpHi!My son is almost 17 months, and we also were told not to worry about the flat spot on the back of his head.It wasn't until finding this group that I realized a helmet/band was still an option.I just found and joined this group last weekend & made an appointment by Tuesday of last week, and we are heading to cranial technologies this Wednesday for a consultation. I am hoping they will agree to help us! Because we live such a distance, if they agree to treat him, we are having the scan done that day to fit the helmet.I wish you a lot of luck!!! You are not alone! We are in a very similar boat! I pray we both have results with our kiddos!Good luck!ann> >> > My son has Plagiocephaly and we were told over the last 18 months by various NHS professionals that it was nothing to worry about and it would improve. it hasn't so we have signed up to have the helmet treatment but we are EXTREMELY worried. its not the money, its the fact that he is now a little boy really with likes and dislikes and feelings and we are wondering if it is going to be 10 or so months of toture for him with no result. Can anyone advise? we are new to this and have no really idea what we are letting ourselves or him into whether we do go ahead with is or whethre we dont. Has anyone out there had a helmet fitted so late in the day with good or bad results? please help as i can't sleep at night wondering what to do about this for the best. I am so angry that we didnt have good advice from the start. xx> >>