Angry/Confused with Cranial Tech

[Guest guest]

CT has a very strict corporate protocol. In my experience they have been very

professional and I had a tough first experience-my daughter got a MRSA infection

while first in her helmet at 6 1/2 mos. We immediately ended helmet and have

just gone back to CT and josie is 9 mos.

My point is I don't thing anyone at CT would do something willy Nilly. I am

sure they have policy with respect to the advice you have received.

Can't hurt to get a 2nd opinion at hanger...one of the perks of having both near

you...btw, I live in andria and go to the ndale CT. If you don't end up

banding now in favor of intensive pt, not end of the world if your child gets

helmet at 7 or 8 months.

Sent from my iPad

[Guest guest]

This does seem odd to me. My daughter was about 4.5 months old when we banded

her with Cranial Tech in Dallas, and she had just started physical therapy for

her tort about a week or two prior to receiving her band. She couldn't keep her

head straight for the DSi either, and one of the techs actually had to use a

finger against the side of her head to keep her head mid-line in order to do the

DSi.

She wore the band for only seven weeks, so her tort was obviously not resolved

by the time she graduated. In fact, here at 9.5 months, we're still battling

tightness in her end range of motion. Our tech informed us that unresolved tort

did increase her chances of regression a little, but that it was still extremely

rare. By the time Lexi graduated, she was almost 6.5 months old and preferred

tummy sleeping, so we weren't terribly concerned about regression anyway.

So in our experience, Lexi's tort was no barrier at all to getting banded with

CT, and I've actually never heard of this. Best of luck, and I hope you can get

some answers soon.

Sharyn

Lexi DOC Band graduate 02/10

>

> We went in for our son's scan on Tuesday for them to tell us that they can not

band him right now due to his torticollis. He is 5 1/2 months old and has been

going to PT since he was 3 1/2 months old for his torticollis. They said to

continue PT until he is 7 months and them come back to CT and see if we can band

him then. Well by then the main window of opportunity is over! I don't

understand why they can't band him with his torticollis. My ped thinks it would

help him if they band himm now. My husband refuses to go anywhere but CT for a

band even though I have a Hanger place 20 minutes from my house (CT is 25

minutes). He believe they are the best at what they do (even though he has no

experience with anywhere else and is going by what others have told him). Anyone

else been through this also? I'm not impressed so far with the CT in ndale,

VA as the lady there says " I'm not a doctor BUT this is what I think you should

do or this is what I think your child has, etc. " Well since you're not a

doctor, should you really be telling us things to make us worry more as she is

stating the worse case scenerio with torticolllis and what can happen in the

long run. I understand that but stop saying " I'm not a doctor but... " I guess

that's just irritating to hear.

>

> Sorry for the babbling...I'm just upset with CT at this point. I don't want to

miss the opportunity to band my son at the right time. CT recommended a new PT

for me to try in Fairfax called Physiotherapy Associates. Has anyone had

experience with them? I have an appointment next Wednesday and I'm hoping for a

miracle and they will say go ahead and get your son banded while we work with

him.

>

> Thanks for listening. :-)

>

>

[Guest guest]

I'm sorry about your frustration and have been reading along and it sounds quite logical what everyone is saying as far as cranial tech's rationale in waiting. I would however, definately call them and ask them to explain their reason's rather then hearing it from us (although it all sounds really good!)

As far as starting age for treatment, my son will be getting his band from CT in about a week and a half and will be almost 8.5 months... I'm not thrilled that it came to waiting that long but it is what it is. He's getting the care he needs and that's what matters. As far as torticollis, CT diagnosed my son with a mild case that both my pediatrician and CHOP neurosurgeon never discovered.

I'm sure they have their reason's for asking you to wait, they just didn't explain it well enough. Just call and ask for a better/clearer explanation!! Good luck!

From: <melanie.watson@...>Subject: Re: Re: Angry/Confused with Cranial TechPlagiocephaly Date: Sunday, May 23, 2010, 2:09 PM

,

After your last post about only doing one band, something else occurred to me. They typically like to see most cases of tort mostly resolved before they get out of the band. If you are only doing one, then this means that the time in the band will be limited to when he outgrows it, which would likely be fast because of his age.

So, it could be an issue with making the band (as suggests) since he would need to sit straight for a Dsi. Heck, maybe they only discovered the issue when they attempted the Dsi with him as it sounds like they did. Or, it could also be the case where CT is anticipating that he would graduate from the band with tort that is still significant enough to cause regression. If so, it would not make sense to proceed with treatment if they head is likely to get worse after graduation. If you were able to do more than one band (don't worry - I am not saying that you should), then they might have suggested a 2nd one until the tort was resolved.

Sometimes, professionals have to tell parents things that we don't want to hear. And, sometimes they forget that we need more explanation in order to understand it. It is like they do it all the time and they forget that these concepts and ideas are new for all of us. Plus, some of us need to understand things more than others. Some parents would have taken that explanation and been fine with it. It sounds like you are like me in that sense that you need to understand more. Why don't get give your technician a call and ask to speak with her. Ask her to explain a little bit more about why she wants you to wait. Ask if it is a fit issue or a possible regression issue, etc.

I do think that 7 months will be fine. It might result in spending a few more weeks in the band, but a few more weeks in a band really isn't that significant. And, the baby will still probably outgrow the band in less than the full 16 weeks so that the total amount of correction that you could get will probably be the same. It just may take a little bit longer. Believe me, I would have given anything to have started that young.

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It sounds as though you might be dealing with some serere tort? I think in more severe cases CT generally advises more PT before starting band treatment. Also, did you actually have the DSi done on Tuesday? Because I was told that it's really important that they get good posture in the scan in order to make the band just right. The head molds they use to create the bands incorporate a little bit of the upper neck and if the baby is slouched or if the tort makes it impossible for them to keep their head up straight enough for the DSi, it would be impossible to make a good fitting band for them. I'm not sure any of this is the case for your son, but I'm just throwing ideas out there. Have you seen an improvement in his tort since you started PT? If not, you should be (if even a little), so switching to the new PT is a good idea. And keep up with the exercises at home as much as possible. Hopefully you'll see some good improvements in the tort

really soon. I do think CT really has your and your son's best interests at heart. But it probably would have been better if she could have explained them a little more clearly. Good luck!Jake-3.5 (DOCBand Grad 9/08)Raleigh, NC>> We went in for our son's scan on Tuesday for them to tell us that they can not band him right now due to his torticollis. He is 5 1/2 months old and has been going to PT since he was 3 1/2 months old for his torticollis. They said to continue PT until he is 7 months and them come back to CT and see if we can band him then. Well by then the main window of opportunity is over! I don't understand why they can't band him with his

torticollis. My ped thinks it would help him if they band himm now. My husband refuses to go anywhere but CT for a band even though I have a Hanger place 20 minutes from my house (CT is 25 minutes). He believe they are the best at what they do (even though he has no experience with anywhere else and is going by what others have told him). Anyone else been through this also? I'm not impressed so far with the CT in ndale, VA as the lady there says "I'm not a doctor BUT this is what I think you should do or this is what I think your child has, etc." Well since you're not a doctor, should you really be telling us things to make us worry more as she is stating the worse case scenerio with torticolllis and what can happen in the long run. I understand that but stop saying "I'm not a doctor but..." I guess that's just irritating to hear.> > Sorry for the babbling...I' m just upset with CT at this point. I don't want to miss the opportunity to

band my son at the right time. CT recommended a new PT for me to try in Fairfax called Physiotherapy Associates. Has anyone had experience with them? I have an appointment next Wednesday and I'm hoping for a miracle and they will say go ahead and get your son banded while we work with him.> > Thanks for listening. :-)> >

[Guest guest]

-

You and I have had very similar experiences with CT ndale, I think we are seeing the same technician. I also felt/feel that she was a little over dramatic over my son's tort. We were diagnosed with severe plagio (20mm) at 3 1/2 months. We were also doing weekly PT for tort which I didn't think was that bad. My lowest point in this whole process was being sent home from his 1st DSI attempt without a usable image because my son wouldn't sit up straight. We tried for over an hour and by the end my son was screaming and overtired and my frustration level was through the roof. We were told to be really agressive with the PT and to try again in a week. I was so upset because I knew my son could hold his head up and I couldn't understand why he wouldn't do it in the office. They even had one girl pushing his ear with her finger to try to straighten his head.

I made as many PT appointments as they would let me for the next week and my PT (Dr. Nilsen from The Clinics in Oakton, I would recommend her) was really surprised that he wouldn't hold his head straight because she didn't think his tort was that bad. We stretched him like crazy that week and made the 2nd DSI appt in the morning (I think this was the key factor for success!) when my son is most active and awake. We got the scan in less than 5 minutes but we still needed someone to push on his ear to straighten his head.

A few weeks later the PT recommended that we discontinue the weekly appointments because his tort was resolved. I told the technician and to this day she continues to hound me about doing the stretches. My gut agrees with the PT so I just ignore the comments.

Despite all of this I have been extremely happy with the results, as they predicted we needed 2 bands. We were really unsure about the 2nd band and they never pressured or rushed me to make a decision. If I had it to do over again I would still go with CT.

Hope this helps and hang in there!

From: Carr <julieccarr@...>Plagiocephaly Sent: Sun, May 23, 2010 2:01:19 PMSubject: Re: Re: Angry/Confused with Cranial Tech

, I think what you said is the case actually but it's still makes me a little angry as we did get the scan done on Monday and because of his posture they didn't want to move forward. They said the could but the band wouldn't be as effective. I was just disappointed after all of that time spent there on Monday and walked away with "come back in 4-6 weeks" especially when our first visit there was at 3 1/2 months old. I really didn't think posture was an issue but I guess it is. It's good to hear it from someone else. I appreciate your email response. I hope this new PT can help "straighten" my son out so we can move forward by July. The other PT we were going to said he was doing great so hopefully this new one will see what needs to be taken care of now.

From: nwilkens2275 <nwilkens2275>Subject: Re: Angry/Confused with Cranial TechPlagiocephalyDate: Sunday, May 23, 2010, 12:18 PM

It sounds as though you might be dealing with some serere tort? I think in more severe cases CT generally advises more PT before starting band treatment. Also, did you actually have the DSi done on Tuesday? Because I was told that it's really important that they get good posture in the scan in order to make the band just right. The head molds they use to create the bands incorporate a little bit of the upper neck and if the baby is slouched or if the tort makes it impossible for them to keep their head up straight enough for the DSi, it would be impossible to make a good fitting band for them. I'm not sure any of this is the case for your son, but I'm just throwing ideas out there. Have you seen an improvement in his tort since you started PT? If not, you should be (if even a little), so switching to the new PT is a good idea. And keep up with the exercises at home as much as possible. Hopefully you'll see some good improvements in the tort

really soon. I do think CT really has your and your son's best interests at heart. But it probably would have been better if she could have explained them a little more clearly. Good luck!Jake-3.5 (DOCBand Grad 9/08)Raleigh, NC>> We went in for our son's scan on Tuesday for them to tell us that they can not band him right now due to his torticollis. He is 5 1/2 months old and has been going to PT since he was 3 1/2 months old for his torticollis. They said to continue PT until he is 7 months and them come back to CT and see if we can band him then. Well by then the main window of opportunity is over! I don't understand why they can't band him with his torticollis. My ped thinks it would help him if they band

himm now. My husband refuses to go anywhere but CT for a band even though I have a Hanger place 20 minutes from my house (CT is 25 minutes). He believe they are the best at what they do (even though he has no experience with anywhere else and is going by what others have told him). Anyone else been through this also? I'm not impressed so far with the CT in ndale, VA as the lady there says "I'm not a doctor BUT this is what I think you should do or this is what I think your child has, etc." Well since you're not a doctor, should you really be telling us things to make us worry more as she is stating the worse case scenerio with torticolllis and what can happen in the long run. I understand that but stop saying "I'm not a doctor but..." I guess that's just irritating to hear.> > Sorry for the babbling...I' m just upset with CT at this point. I don't want to miss the opportunity to band my son at the right time. CT recommended a new PT

for me to try in Fairfax called Physiotherapy Associates. Has anyone had experience with them? I have an appointment next Wednesday and I'm hoping for a miracle and they will say go ahead and get your son banded while we work with him.> > Thanks for listening. :-)> >

[Guest guest]

,

I'm glad to know that I'm not crazy! We must be seeing the same person! hahaha CT never told me how severe my son's plagio was. They just said it was severe. Yes, sounds like my son at the end of the trying to do the scan several times. I'm going to try this place in Fairfax and if that doesn't work I will switch again and maybe to the place in Oakton! I'll get this straightened out if it hurts me!! :-) I'm just eager to get him banded as soon as possible. I think I will get a second opinion and go to Hanger just to see what they have to tell me especially if the PT recommends him to get banded now rather than wait.

From: nwilkens2275 <nwilkens2275>Subject: Re: Angry/Confused with Cranial TechPlagiocephalyDate: Sunday, May 23, 2010, 12:18 PM

It sounds as though you might be dealing with some serere tort? I think in more severe cases CT generally advises more PT before starting band treatment. Also, did you actually have the DSi done on Tuesday? Because I was told that it's really important that they get good posture in the scan in order to make the band just right. The head molds they use to create the bands incorporate a little bit of the upper neck and if the baby is slouched or if the tort makes it impossible for them to keep their head up straight enough for the DSi, it would be impossible to make a good fitting band for them. I'm not sure any of this is the case for your son, but I'm just throwing ideas out there. Have you seen an improvement in his tort since you started PT? If not, you should be (if even a little), so switching to the new PT is a good idea. And keep up with the exercises at home as much as possible. Hopefully you'll see some good improvements in the tort

really soon. I do think CT really has your and your son's best interests at heart. But it probably would have been better if she could have explained them a little more clearly. Good luck!Jake-3.5 (DOCBand Grad 9/08)Raleigh, NC>> We went in for our son's scan on Tuesday for them to tell us that they can not band him right now due to his torticollis. He is 5 1/2 months old and has been going to PT since he was 3 1/2 months old for his torticollis. They said to continue PT until he is 7 months and them come back to CT and see if we can band him then. Well by then the main window of opportunity is over! I don't understand why they can't band him with his torticollis. My ped thinks it would help him if they band

himm now. My husband refuses to go anywhere but CT for a band even though I have a Hanger place 20 minutes from my house (CT is 25 minutes). He believe they are the best at what they do (even though he has no experience with anywhere else and is going by what others have told him). Anyone else been through this also? I'm not impressed so far with the CT in ndale, VA as the lady there says "I'm not a doctor BUT this is what I think you should do or this is what I think your child has, etc." Well since you're not a doctor, should you really be telling us things to make us worry more as she is stating the worse case scenerio with torticolllis and what can happen in the long run. I understand that but stop saying "I'm not a doctor but..." I guess that's just irritating to hear.> > Sorry for the babbling...I' m just upset with CT at this point. I don't want to miss the opportunity to band my son at the right time. CT recommended a new PT

for me to try in Fairfax called Physiotherapy Associates. Has anyone had experience with them? I have an appointment next Wednesday and I'm hoping for a miracle and they will say go ahead and get your son banded while we work with him.> > Thanks for listening. :-)> >

[Guest guest]

My CT clinician also told me that my son's improvement would be limited if his

torticollis wasn't resolved asap. They didn't make me wait to band him since his

tort isn't too severe. So, it's not just the person you saw who came up with

this theory. I don't know what the stats are on whether it's better to wait or

not though.

>

> > We went in for our son's scan on Tuesday for them to tell us that

> > they can not band him right now due to his torticollis. He is 5

> > 1/2 months old and has been going to PT since he was 3 1/2 months

> > old for his torticollis. They said to continue PT until he is 7

> > months and them come back to CT and see if we can band him then.

> > Well by then the main window of opportunity is over! I don't

> > understand why they can't band him with his torticollis. My ped

> > thinks it would help him if they band himm now. My husband refuses

> > to go anywhere but CT for a band even though I have a Hanger place

> > 20 minutes from my house (CT is 25 minutes). He believe they are

> > the best at what they do (even though he has no experience with

> > anywhere else and is going by what others have told him). Anyone

> > else been through this also? I'm not impressed so far with the CT

> > in ndale, VA as the lady there says " I'm not a doctor BUT this

> > is what I think you should do or this is what I think your child

> > has, etc. " Well since you're not a doctor, should you really be

> > telling us things to make us worry more as she is stating the worse

> > case scenerio with torticolllis and what can happen in the long

> > run. I understand that but stop saying " I'm not a doctor but... "

> > I guess that's just irritating to hear.

> >

> > Sorry for the babbling...I'm just upset with CT at this point. I

> > don't want to miss the opportunity to band my son at the right

> > time. CT recommended a new PT for me to try in Fairfax called

> > Physiotherapy Associates. Has anyone had experience with them? I

> > have an appointment next Wednesday and I'm hoping for a miracle and

> > they will say go ahead and get your son banded while we work with him.

> >

> > Thanks for listening. :-)

> >

>