Re: I'm also new, and also confused (LONG, sorry!)

[Guest guest]

Hi Lee Ann and welcome! Thanks for the background information on that

helps when offering advice and support. It sounds like you are doing what you

can at this point by aggressively repositioning. I also think it is good that

you are getting in to see a specialist. It sounds like he may have tort and

plagio so some sort of treatment will be necessary if this is the case. If he

has tort you will likely need physical therapy for the tort and that in turn

will help with the plagio. Waiting until May to see the specialist seems

ridiculous. Hopefully someone in your area can suggest a specialist that you

won't have to wait so long for. You can also make an appointment and get on a

cancellation waiting list. If your schedule is somewhat flexible this would

probably work very well for you. You could also check out www.cranialtech.com

and see who they have on their specialist list and see if one of them is on

your provider list.

Definitely push to get in earlier. Hearing what the specialist has to say

will help guide you in your decision on what to do next. In the meanwhile

keep up the hard work with the repositioning - every little bit helps. Keep

us posted!

Marci (Mom to )

Oklahoma

[Guest guest]

Hi Lee Ann,

Welcome to the group!! And Happy Valentines Day!! To share a little of my story: was also a very big baby, almost 10 lbs., and he was engaged and ready for birth by 8 months!! He was literally stuck and at one point, had little movement- this contributed to his torticollis and plagio (although the plagio dx came much later). At birth, he was so stuck when they pulled his already tight muscle, it tore and caused the hematoma (lump- or blood mass in his case)- which not all tort kids do get the lump. It seemed to take forever for the lump to go away(about 6 mnths in his case, to actually reabsorb back into his system- massage really helps that lump).

Long story very short, he was dx with tort at 2 months when Doc couldn't get him to turn his head (we did notice his tilt and favor of right side, and did try to reposition even not having a dx before then- it didn't work for us). We were sent to a neurologist for an MRI- and then I had to seek out pt from a professional. I would definetly talk with your ped about this- he/she should be able to dx tort- if not refer you to someone that can. I had to call around for pt, and found that most hospitals offer a pediatric pt- they need to be able to work on infants and tort. If your having problems with your ped, maybe you could work backwords and ask a physical therapist to give you a name of a ped that has referred their tort patients? Call a few local hospitals and ask for their outpatient pt, a childrens hospital would be even better. Maybe you can play connect the dots and work backwards from finding the pt, to getting a ped that will refer you that way, and ask the pt if they have any helmeted babies- this will be even better if you can get that Docs name to address tort and plagio.

I will attach a few links to give you an idea of some stretching exercises that can be helpful. My neuro and ped were not helpful in terms of the plagio. I went around them entirely, and got a free eval. from CT (who sent me home for a month to reposition). At the 4 mnth check up, my ped was still not into banding, but I had done my homework and asked her to give the referral. Talk with your ped and ask if they can help in getting you in somewhere faster- they may have connections with a neuro. Don't take no for an answer about what you want. If your Doc doesn't think its necessary, and you do, that's all that matters, and you tell them you have made up your mind and this is what you want, IF that's what you want. Push, push, push now while you still have ample correction time in your corner. This was all so very overwhelming to me, and I think you will find peace through knowledge and support here and check out the tort group at www.torticolliskids.org or torticolliskids - they were also so helpful to me! Good luck and please let me know if I can help you in anyway!

' Mom

Stretches

More on Tort

[Guest guest]

Thanks for the welcome and the advice, Marci :-) I agree that waiting so long for this problem is ridiculous. I do understand that specialists are busy, but that is the nature of their business, so they need to find ways to get people in, ya know?

I have exciting new developments about our situation, but I'll post it in a different email!!!!

Thanks, again!

Lee Ann in TX

Hi Lee Ann and welcome! Thanks for the background information on that helps when offering advice and support. It sounds like you are doing what you can at this point by aggressively repositioning. I also think it is good that you are getting in to see a specialist. It sounds like he may have tort and plagio so some sort of treatment will be necessary if this is the case. If he has tort you will likely need physical therapy for the tort and that in turn will help with the plagio. Waiting until May to see the specialist seems ridiculous. Hopefully someone in your area can suggest a specialist that you won't have to wait so long for. You can also make an appointment and get on a cancellation waiting list. If your schedule is somewhat flexible this would probably work very well for you. You could also check out www.cranialtech.com and see who they have on their specialist list and see if one of them is on your provider list.

[Guest guest]

Hi !!

I just read your post to LeeAnn. I am just curious -- also had a lump or hematoma (on his left side - he had left-sided tort), but his dissolved in about a month. At the time, we knew nothing about tort, plagio or massaging the lump, so it went away on its own. He was a pretty big baby (8 lbs 1 oz.), not as big as your , but big enough. He was also induced 11 days early, so if given the opportunity to grow inside me for 11 or so more days -- he would have been much larger.

Anyway, after being "stuck" in the birth canal for 2 hrs. he was delivered with forceps and vacuum. My husband said it was VERY, VERY scary watching him being "pulled" out!!!! I really like my OB/GYN, and I do not blame him. needed to come out, and after 2hrs. of pushing (with an epidural and it was now too late for a C-Section) and not getting anywhere, I needless to say, was exhausted!!! I couldn't push anymore!! To this day my husband blames the OB for s tort (from the birth trauma) and then for the plagio (because the tort led to plagio). I mean, not lawsuit blame or anything like that, but he's furious with him.

No one ever explained to me how 's tort came about. When I asked I was told it was the way he was positioned inside of me, but I never had a problem carrying him. At the very end my blood pressure got a little high, so I was monitored very closely (weekly fetal stress tests) and everything was OK. I do not think anyone wants to step on anyone else's toes, if you know what I mean!!!!!

My main concern now is getting corrected, but I was just wondering who explained to you that the lump was caused by the SCM muscle being torn. Was it your OB/GYN, ped., PT, neurologist, orthotist or who? I do think s muscle was damaged from the forceps and/or vacuum, but that is water under the bridge now. It's just that I would really like to know what happened -- it kinda bugs me, you know?!?

Goodluck to you and !!!!!!!!!!!!!!!!!!!

AnnMarie and (12 mos.)

STARbanded - 08/22/01

PS -- I think I had read in some of your earlier posts that you are from Washington state (Tacoma?) Anyway, we are from near Pittsburgh, PA but my husband was born in Tacoma. He was out your way last year on business (with Boeing) and he said it is absolutely beautiful there!! He wants to take me and with him on his next trip -- and we're going!!!

Re: I'm also new, and also confused (LONG, sorry!)

Hi Lee Ann,Welcome to the group!! And Happy Valentines Day!! To share a little of my story: was also a very big baby, almost 10 lbs., and he was engaged and ready for birth by 8 months!! He was literally stuck and at one point, had little movement- this contributed to his torticollis and plagio (although the plagio dx came much later). At birth, he was so stuck when they pulled his already tight muscle, it tore and caused the hematoma (lump- or blood mass in his case)- which not all tort kids do get the lump. It seemed to take forever for the lump to go away(about 6 mnths in his case, to actually reabsorb back into his system- massage really helps that lump).Long story very short, he was dx with tort at 2 months when Doc couldn't get him to turn his head (we did notice his tilt and favor of right side, and did try to reposition even not having a dx before then- it didn't work for us). We were sent to a neurologist for an MRI- and then I had to seek out pt from a professional. I would definetly talk with your ped about this- he/she should be able to dx tort- if not refer you to someone that can. I had to call around for pt, and found that most hospitals offer a pediatric pt- they need to be able to work on infants and tort. If your having problems with your ped, maybe you could work backwords and ask a physical therapist to give you a name of a ped that has referred their tort patients? Call a few local hospitals and ask for their outpatient pt, a childrens hospital would be even better. Maybe you can play connect the dots and work backwards from finding the pt, to getting a ped that will refer you that way, and ask the pt if they have any helmeted babies- this will be even better if you can get that Docs name to address tort and plagio.I will attach a few links to give you an idea of some stretching exercises that can be helpful. My neuro and ped were not helpful in terms of the plagio. I went around them entirely, and got a free eval. from CT (who sent me home for a month to reposition). At the 4 mnth check up, my ped was still not into banding, but I had done my homework and asked her to give the referral. Talk with your ped and ask if they can help in getting you in somewhere faster- they may have connections with a neuro. Don't take no for an answer about what you want. If your Doc doesn't think its necessary, and you do, that's all that matters, and you tell them you have made up your mind and this is what you want, IF that's what you want. Push, push, push now while you still have ample correction time in your corner. This was all so very overwhelming to me, and I think you will find peace through knowledge and support here and check out the tort group at www.torticolliskids.org or torticolliskids - they were also so helpful to me! Good luck and please let me know if I can help you in anyway!' MomStretchesMore on TortFor more plagio info

[Guest guest]

Thanks ....Happy V-Day to you, too!

Sorry about ' traumatic birth. was not a large baby (6lbs12oz, 19inches)...he seemed to have plenty of room even at the end cuz he was moving well. I've been digging for more info about his birth with the people who were there with me (DH, doula~nne, friend~, midwife~Pat) cuz I was VERY out of it even though I didn't have any drugs LOL. Anyway, he DIDN'T turn into the correct position like I thought he did (I'm still flabbergasted at this...I really thought they said he had turned!). He came out sunny side up, looking a little towards my right thigh. No forceps, no vacuum...so now I'm REALLY wondering if he has torticollis. We've been playing with him....forcing him to look to his left and he can, but wont hold it for very long.

We'll soon find out....new exciting development with our situation that I'll post in a bit :-)

Thanks for the tort links...I'm going to check them out later tonight when the boys are asleep!

Lee Ann in TX

Hi Lee Ann,Welcome to the group!! And Happy Valentines Day!! To share a little of my story: was also a very big baby, almost 10 lbs., and he was engaged and ready for birth by 8 months!! He was literally stuck and at one point, had little movement- this contributed to his torticollis and plagio (although the plagio dx came much later). At birth, he was so stuck when they pulled his already tight muscle, it tore and caused the hematoma (lump- or blood mass in his case)- which not all tort kids do get the lump. It seemed to take forever for the lump to go away(about 6 mnths in his case, to actually reabsorb back into his system- massage really helps that lump).Long story very short, he was dx with tort at 2 months when Doc couldn't get him to turn his head (we did notice his tilt and favor of right side, and did try to reposition even not having a dx before then- it didn't work for us). I will attach a few links to give you an idea of some stretching exercises that can be helpful. My neuro and ped were not helpful in terms of the plagio. I went around them entirely, and got a free eval. from CT (who sent me home for a month to reposition).

[Guest guest]

Dear Lee Ann, Welcome to the group. I am new too! I hope you get the

answers you are looking for. I am sure you will. HUGS,

[Guest guest]

Hey Lee Ann,

Just wanted to let you know that I have heard absolutely wonderful things about Dr. Day and am scheduled to see him myself on Monday! He has an excellent reputation according to the doctor who referred him to me. I've also heard Hobars name mentioned as being very reputable, but it sounds like you've gotten your appt. all set up with Day. I hope we both get " unconfused " after our consultation visits. I am scheduled to go straight from his office over to Cranial Technologies, just 5 or 10 minutes down the road. They will give me a free consult as well. I'm feeling really encouraged that I am about to get some answers and be able to proceed quickly, especially since is 12 months already. Best of luck to you. Paige

I'm also new, and also confused (LONG, sorry!)

I joined up a few days ago and just now getting a chance to say hello and introduce myself and my son.

I'm Lee Ann, SAHM to Ethan (4/21/95) and (10/02/01). Married to since 1994 and we live in Denton, TX...suburb of Dallas.

has always preferred to sleep in his car seat, and since Ethan was the same way and never had any problems with it, we allowed it. Looking back now, he has always seemed to favor the right back side of his head.

He was posterior at the onset of labor and stayed that way until 20 minutes before he was born. I started pushing at 11pm and he wasnt born until 2:15am! The midwife had me trying all sorts of different positions to get him to turn and it finally worked. Once he did turn, it was only a matter of minutes until he was FINALLY here.

Anyway, the only reason I mention all that is because I've wondered if him being posterior for all of labor and most of the pushing stage could have had any effect on his head and/or neck (possibly causing torticollis?) and be contributing to his plagio. We dont have an official diagnosis, but I am sure that is what it is...he has all the signs: ears are not aligned with each other, one eye appears bigger, he has a bulgy forehead, and there are " ridges " near his temples. And, of course, the lovely flat spot on the back right side of his head...that is a dead give-away, ya know? The diagnosis being used for the referral is " 754.0 ~ Musculoskeletal deformities skull, face, or jaw " .

I noticed it and mentioned it to his ped at his 2 month check up. She looked, and asked about his sleeping position habits. We told her and she suggested re-positioning, but didnt make it seem like it was a huge deal. At 4 months, I pointed it out again and we were told to be more agressive with the re-positioning. She also examined his fontanel at this time and found it to be on the large side (is this associated with plagio?). This was of concern to her, along with the flat spot, so she ordered a referral to a specialist.

After a long and frustrating mix-up/problem with our insurance company, I call to get the appointment for with a Dr. Jeffery Hopkins (anyone in DFW area know of this doc? would he be worth the wait?), only to be told that he cant be seen until late May. I had done some reading by this time and knew that " time of of the essence " with this issue and I dont want it to wait that long. So the insurance lady at the ped's office told me to find a doc in my insurance book, call and see if they can see Grif and let her know and she will arrange for the referral.

So now I am basically stuck with finding a doc myself for Grif's plagio. Any suggestions, anyone? I have a call in to a Dr. Genecov's office, have spoken to Drs. Byrd and Hobar's office and told the 1st appointment available is 3/25. I have other names to call, but is it ok to let this wait this long? Will it be this hard to get him into see ANY good doc for plagio? I've checked out the doctors listed at plagio.org and cranialtech.com and that is where I am getting these names. The others I have to call are: Dr. Day, Dr. Donahue, Dr. Salyer, Dr. Fearon, Dr. Shapiro, Dr. Hopkins

We are being VERY agressive with his positioning, and we THINK we can see some changes, but we're not sure. It could just be wishful thinking, ya know?

I'm a little overwhelmed by all this, never having had anything seriously wrong with my children up until now. And overwhelmed by having to find a specialist for him all on my own. Its confusing since some of the specialist are plastic surgeons, some neurosurgeons. Is one better than the other in regards to plagio?

Paige ~ I read your intro post yesterday and that is what really motivated me to write in myself. Can you tell me what doc you saw so I can avoid him? ;-) What area of Dallas do you live in?

Well, I guess that is about it for me and ....it ought to be...this is a book for goodness sake LOL! Glad to be here and in the company of so many nice people who are well aware of how I am feeling now.

Lee Ann

Mom to ~ 10/02/01

DFW area ~ Denton

For more plagio info

[Guest guest]

Hi, Paige ~

I hope we are both "unconfused" by the end of this coming week, too! I'm so anxious to hear how 's appointment goes on Monday. Make sure and give a full report, ok?

I know what you mean about feeling good about getting some answers finally! Luck to you and !

Lee Ann in TX

Just wanted to let you know that I have heard absolutely wonderful things about Dr. Day and am scheduled to see him myself on Monday! He has an excellent reputation according to the doctor who referred him to me. I've also heard Hobars name mentioned as being very reputable, but it sounds like you've gotten your appt. all set up with Day. I hope we both get "unconfused" after our consultation visits. I am scheduled to go straight from his office over to Cranial Technologies, just 5 or 10 minutes down the road. They will give me a free consult as well. I'm feeling really encouraged that I am about to get some answers and be able to proceed quickly, especially since is 12 months already. Best of luck to you. Paige

[Guest guest]

Thanks, ! This is a great group with tons of info and support. I'm sure both you and I will get all the help we need!

Lee Ann in TX

Dear Lee Ann, Welcome to the group. I am new too! I hope you get the answers you are looking for. I am sure you will. HUGS,