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Hi & welcome to our group!

I am so sorry to hear of the predicament you are currently in!

Unfortunatley, your story is very common amongst other group

members. 2 mos before you can get into the specialist? That's

pretty common too. Did you request to be put on a cancellation list,

so if they get any cancellations between now & your appt., they will

call you if there is an opening? If not, I request doing that as

well. We do have another new KC member, she just posted 2 wks ago or

so, I'm hoping she'll reply to you with some area information. I'll

look that message up again & give you that info as well.

You are very lucky though to be located in KC, Cranial Technologies -

mfg. of the DOCband has an office in the Kansas City area. Give

their office a call & I'm sure they'll get Grant in for an appt

within 2 wks or so. They are specialists in treating plagio as well

as knowing a lot about torticollis. Their phone # is 816-523-1333,

addresss is 6650 Troost #100 , Kansas City, MO 64131. Their webpage

is www.cranialtech.net. They'll get Grant in for an evaluation and

give you their honest opinion.

IF for some reason, you still have to wait to get Grant any

treatment, 9 mos is not too late. He's still young enough. It is

true, the younger, the better, but 9 mos isn't " too old " .!

Please give Cranial Tech a call & see what they can do or recommend

for you. They probably also have another specialist they could refer

you to that might get you in faster! Let us know whatever you find

out. Welcome again.

Debbie Abby's mom DOCGrad

MI

>

> Hello,

>

> My name is . I had my first baby, a son named Grant, on

September 26, 2001. Not long after he was born, we noticed he had a

tendency to turn his head to the left. We did see him occasionally

turn it to the right, but never to the extent that he turned it to

the left. We also noticed that when he settled down and fell asleep,

his head would always fall the left. When his hair starting

thickening up, we noticed that he had a lot more hair on the right

side...like he was wearing away the hair towards the back of the left

side. I mentioned this at EVERY doc appt and was told about

positioning opposite directions on changing table, in crib, etc.

minimize use of bouncy seat, swing, etc. I did all these things, but

he would just find something new to look at in the left direction and

we never were really using the bouncy seat, swing, etc. anyway. He

never really liked those kind of toys. Well, even now, with him

sitting up or on his tummy all the time it's growing worse. The

flattening is getting very noticeable on the left side and his ears

look misaligned. I don't really notice any asymmetry in his face,

though. Well, a couple of weeks ago I took him to the pediatrician

to get his ears checked (he was pulling at them). We saw a different

ped..the one who was taking emerg. sick visits. She took one look at

him and noticed the head flattening, favoring one side with neck,

etc. She seemed a bit alarmed (even though our normal ped blows it

off constantly and he is one of the top noted pediatricians in the

city?!). She gave me one exercise to do with him, stressed tummy

time (we're doing it all day already), and said he needed to come

back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3

weeks? I was confused and angry and scared. After a couple days of

these excruciating exercises (they are getting a bit easier now) I

called back and demanded to talk to our normal ped. I asked him for

a referral to a specialist to see what needed to be done (after much

reading up on this stuff on my own). He agreed and gave me a name

of a craniofacial specialist (a pediatric reconstructive/plastic

surgery doc)... I call this guy and can't get in until July 18th!!!

My baby will be almost 9 mos. old then!!! I called my ped back to

tell him and see what my alternatives where (can he grease the

wheels? Is there someone else?) and he says just keep doing the

exercises...you won't get in anywhere else sooner. HELP...what would

you experienced ladies do in my spot? What do I do next? Will it be

too late to fix his head shape? Would you find someone to call on

your own? Help, please. Anyone in the KC area? Thanks so much.

>

> R, mom to Grant

>

>

>

> ---------------------------------

>

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,

Our sons were born just a few days apart. Dane was born (9/10).

What a stressful time to have a baby, huh?

My son was dx with torticollis at 8 weeks. I asked the dr. (not our

usual on) about the shape of his head when he was dx. He told me it

would round out and that helmets/bands weren't ethical prior to 10-

12 months. Long story short, our regular ped said at his 4 month

checkup that she would write a precription for a DOC Band if we

wanted to go that route. After researching, we decided to do just

that. We respositioned him from 2-4 months with some success, but

when that stagnated, we opted for the band. He has been in it for

almost 3 months and this is probably his last week. Unlike Grant,

Dane had significant facial and ear asymmetry.

We didn't ever see a specialist.

There is a Cranial Tech office in Kansas City.

http://www.cranialtech.com/clinic/mo.html

I would suggest giving them a call. I think the consult is free

(ask them to double check). They are totally honest. At least you

should be able to get in before your appointment with the specialist

and can get the ball rolling with insurance in case the specialist

does say the band is needed. It would be nice to have a jump start

on things! It never hurts to get another opinion too.

Good job being proactive. It is such a shame that we as parents

have to educate the doctors on this subject.

Dane's mom (DOC Band)

>

> Hello,

>

> My name is . I had my first baby, a son named Grant, on

September 26, 2001. Not long after he was born, we noticed he had a

tendency to turn his head to the left. We did see him occasionally

turn it to the right, but never to the extent that he turned it to

the left. We also noticed that when he settled down and fell

asleep, his head would always fall the left. When his hair starting

thickening up, we noticed that he had a lot more hair on the right

side...like he was wearing away the hair towards the back of the

left side. I mentioned this at EVERY doc appt and was told about

positioning opposite directions on changing table, in crib, etc.

minimize use of bouncy seat, swing, etc. I did all these things,

but he would just find something new to look at in the left

direction and we never were really using the bouncy seat, swing,

etc. anyway. He never really liked those kind of toys. Well, even

now, with him sitting up or on his tummy all the time it's growing

worse. The flattening is getting very noticeable on the left side

and his ears look misaligned. I don't really notice any asymmetry

in his face, though. Well, a couple of weeks ago I took him to

the pediatrician to get his ears checked (he was pulling at them).

We saw a different ped..the one who was taking emerg. sick visits.

She took one look at him and noticed the head flattening, favoring

one side with neck, etc. She seemed a bit alarmed (even though our

normal ped blows it off constantly and he is one of the top noted

pediatricians in the city?!). She gave me one exercise to do with

him, stressed tummy time (we're doing it all day already), and said

he needed to come back in 3 weeks and be evaluated for possible PT.

Hello? Why wait 3 weeks? I was confused and angry and scared.

After a couple days of these excruciating exercises (they are

getting a bit easier now) I called back and demanded to talk to our

normal ped. I asked him for a referral to a specialist to see what

needed to be done (after much reading up on this stuff on my

own). He agreed and gave me a name of a craniofacial specialist

(a pediatric reconstructive/plastic surgery doc)... I call this guy

and can't get in until July 18th!!! My baby will be almost 9 mos.

old then!!! I called my ped back to tell him and see what my

alternatives where (can he grease the wheels? Is there someone

else?) and he says just keep doing the exercises...you won't get in

anywhere else sooner. HELP...what would you experienced ladies do

in my spot? What do I do next? Will it be too late to fix his head

shape? Would you find someone to call on your own? Help, please.

Anyone in the KC area? Thanks so much.

>

> R, mom to Grant

>

>

>

> ---------------------------------

>

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Wow...First of all I do you have a HMO or a PPO? w/HMO you have to have a referral so I would pound that out of my Ped..if you have a PPO I would say venture out on your own and get him in ASAP. My Son (4mos old) has Torticollis "Wry Neck" or "Twisted Neck" and we are in PT for him 2 times a week...he was favoring the Right and has Plagio from this...I would check into Torticollis and PT to help w/ his neck and getting the sternomastcoid muscle worked on....I am in no means an expert on this at all...but it sounds like Torticollis...Then I would call Cranial Technologies you can go in for a free consultation...or visit their web site. www.cranialtech.com they are wonderful...then I would changes peds if in fact your ds does have Tort because this is something that needs to be treated and worked on....I am seriously very very new at all of this I can only give you my opinions I hope this helps some....I am actually trying to get a local TV station here to do a story on this exact thing because I think it is so over looked and put off by some Drs as it will correct itself and that upsets me...Hugs to you

Trisha (mom 2 Braeden)

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 11:39 AMPlagiocephaly Subject: Please Help...

Hello,

My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.

R, mom to Grant

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Hi :

I understand your frustration. I would say follow the advise you

have been given and get to Cranial Technologies asap. They can and

will help you.

Good luck to you and your little Grant. Everything will be OK - just

get a good " team " together that is as concerned as you are. (PT,

Cranial Technologies, and any other therapy like massage, etc. that

you think will work.)

Kind regards,

, Rhiannon's mom

>

> Hello,

>

> My name is . I had my first baby, a son named Grant, on

September 26, 2001. Not long after he was born, we noticed he had a

tendency to turn his head to the left. We did see him occasionally

turn it to the right, but never to the extent that he turned it to

the left. We also noticed that when he settled down and fell asleep,

his head would always fall the left. When his hair starting

thickening up, we noticed that he had a lot more hair on the right

side...like he was wearing away the hair towards the back of the left

side. I mentioned this at EVERY doc appt and was told about

positioning opposite directions on changing table, in crib, etc.

minimize use of bouncy seat, swing, etc. I did all these things, but

he would just find something new to look at in the left direction and

we never were really using the bouncy seat, swing, etc. anyway. He

never really liked those kind of toys. Well, even now, with him

sitting up or on his tummy all the time it's growing worse. The

flattening is getting very noticeable on the left side and his ears

look misaligned. I don't really notice any asymmetry in his face,

though. Well, a couple of weeks ago I took him to the pediatrician

to get his ears checked (he was pulling at them). We saw a different

ped..the one who was taking emerg. sick visits. She took one look at

him and noticed the head flattening, favoring one side with neck,

etc. She seemed a bit alarmed (even though our normal ped blows it

off constantly and he is one of the top noted pediatricians in the

city?!). She gave me one exercise to do with him, stressed tummy

time (we're doing it all day already), and said he needed to come

back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3

weeks? I was confused and angry and scared. After a couple days of

these excruciating exercises (they are getting a bit easier now) I

called back and demanded to talk to our normal ped. I asked him for

a referral to a specialist to see what needed to be done (after much

reading up on this stuff on my own). He agreed and gave me a name

of a craniofacial specialist (a pediatric reconstructive/plastic

surgery doc)... I call this guy and can't get in until July 18th!!!

My baby will be almost 9 mos. old then!!! I called my ped back to

tell him and see what my alternatives where (can he grease the

wheels? Is there someone else?) and he says just keep doing the

exercises...you won't get in anywhere else sooner. HELP...what would

you experienced ladies do in my spot? What do I do next? Will it be

too late to fix his head shape? Would you find someone to call on

your own? Help, please. Anyone in the KC area? Thanks so much.

>

> R, mom to Grant

>

>

>

> ---------------------------------

>

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Thanks. I left a message at the Cranial Technologies center in KC - it's actually called Rehab Designs of America...but, they must be an authorized CT clinic or something? The lady that answered the phone took my message for someone to call me. I asked if someone there could look at him even if I didn't already have a prescription. She kept saying that a physician had to order the treatment. I just don't know where to start. My ped seems just fine waiting this out until I see the craniofacial specialist in JULY. I don't think that sounds right?! Shouldn't he at least be starting PT now? Will this CT place look at him without a referral? I do have a PPO, but will insurance even cover any of this anyway? I'm sure nobody here is familiar with my insurance - it's Sprint's insurance - called Sprintchoice...exclusive to Kansas City Sprint employees (Sprint is based here). It's the first employer owned health insurance of its kind. Did some of you go straight to CT and not see a specialist?

stinamom21 <dweston6587@...> wrote: Hi :I understand your frustration. I would say follow the advise you have been given and get to Cranial Technologies asap. They can and will help you. Good luck to you and your little Grant. Everything will be OK - just get a good "team" together that is as concerned as you are. (PT, Cranial Technologies, and any other therapy like massage, etc. that you think will work.)Kind regards,, Rhiannon's mom> > Hello,> > My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.> > R, mom to Grant> > > > --------------------------------->

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Thanks, Trisha. Do you think I should call the doc back and at least ask him to refer me to PT while I WAIT @ MONTHS for this specialist appt? Sorry for my abrasive posts here. I'm just pissed at my pediatrician for making me feel like I'm supposed to know what to do...like I'm the only one that really cares that my son get proper treatment!

Trisha s <trisham@...> wrote:

Wow...First of all I do you have a HMO or a PPO? w/HMO you have to have a referral so I would pound that out of my Ped..if you have a PPO I would say venture out on your own and get him in ASAP. My Son (4mos old) has Torticollis "Wry Neck" or "Twisted Neck" and we are in PT for him 2 times a week...he was favoring the Right and has Plagio from this...I would check into Torticollis and PT to help w/ his neck and getting the sternomastcoid muscle worked on....I am in no means an expert on this at all...but it sounds like Torticollis...Then I would call Cranial Technologies you can go in for a free consultation...or visit their web site. www.cranialtech.com they are wonderful...then I would changes peds if in fact your ds does have Tort because this is something that needs to be treated and worked on....I am seriously very very new at all of this I can only give you my opinions I hope this helps some....I am actually trying to get a local TV station here to do a story on this exact thing because I think it is so over looked and put off by some Drs as it will correct itself and that upsets me...Hugs to you

Trisha (mom 2 Braeden)

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 11:39 AMPlagiocephaly Subject: Please Help...

Hello,

My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.

R, mom to Grant

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So, if you all had a ped that was dragging his feet would you go straight to CT and if they say, yes, band him, go back armed with that info to the ped and ask for a prescription?

rmanias <rmanias@...> wrote: ,Our sons were born just a few days apart. Dane was born (9/10). What a stressful time to have a baby, huh?My son was dx with torticollis at 8 weeks. I asked the dr. (not our usual on) about the shape of his head when he was dx. He told me it would round out and that helmets/bands weren't ethical prior to 10-12 months. Long story short, our regular ped said at his 4 month checkup that she would write a precription for a DOC Band if we wanted to go that route. After researching, we decided to do just that. We respositioned him from 2-4 months with some success, but when that stagnated, we opted for the band. He has been in it for almost 3 months and this is probably his last week. Unlike Grant, Dane had significant facial and ear asymmetry.We didn't ever see a specialist. There is a Cranial Tech office in Kansas City. http://www.cranialtech.com/clinic/mo.htmlI would suggest giving them a call. I think the consult is free (ask them to double check). They are totally honest. At least you should be able to get in before your appointment with the specialist and can get the ball rolling with insurance in case the specialist does say the band is needed. It would be nice to have a jump start on things! It never hurts to get another opinion too. Good job being proactive. It is such a shame that we as parents have to educate the doctors on this subject.Dane's mom (DOC Band)> > Hello,> > My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.> > R, mom to Grant> > > > --------------------------------->

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,

I'm so stressed I hit send too quickly, LOL> I forgot to say that yes, September was a tough time to have a baby...a month when suddenly America didn't seem so safe anymore :(...Also, I LOVE your baby's name! Very cool!

rmanias <rmanias@...> wrote: ,Our sons were born just a few days apart. Dane was born (9/10). What a stressful time to have a baby, huh?My son was dx with torticollis at 8 weeks. I asked the dr. (not our usual on) about the shape of his head when he was dx. He told me it would round out and that helmets/bands weren't ethical prior to 10-12 months. Long story short, our regular ped said at his 4 month checkup that she would write a precription for a DOC Band if we wanted to go that route. After researching, we decided to do just that. We respositioned him from 2-4 months with some success, but when that stagnated, we opted for the band. He has been in it for almost 3 months and this is probably his last week. Unlike Grant, Dane had significant facial and ear asymmetry.We didn't ever see a specialist. There is a Cranial Tech office in Kansas City. http://www.cranialtech.com/clinic/mo.htmlI would suggest giving them a call. I think the consult is free (ask them to double check). They are totally honest. At least you should be able to get in before your appointment with the specialist and can get the ball rolling with insurance in case the specialist does say the band is needed. It would be nice to have a jump start on things! It never hurts to get another opinion too. Good job being proactive. It is such a shame that we as parents have to educate the doctors on this subject.Dane's mom (DOC Band)> > Hello,> > My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.> > R, mom to Grant> > > > --------------------------------->

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Thanks for such an encouraging message ****I'm calming down a bit**** :). It was a long hard road to have a live, healthy baby. I just want the best for my little guy. I hope the CT place will see him...on pins and needles for someone to call me back.

debbieandabby <dj2kirby@...> wrote: Hi & welcome to our group!I am so sorry to hear of the predicament you are currently in! Unfortunatley, your story is very common amongst other group members. 2 mos before you can get into the specialist? That's pretty common too. Did you request to be put on a cancellation list, so if they get any cancellations between now & your appt., they will call you if there is an opening? If not, I request doing that as well. We do have another new KC member, she just posted 2 wks ago or so, I'm hoping she'll reply to you with some area information. I'll look that message up again & give you that info as well.You are very lucky though to be located in KC, Cranial Technologies - mfg. of the DOCband has an office in the Kansas City area. Give their office a call & I'm sure they'll get Grant in for an appt within 2 wks or so. They are specialists in treating plagio as well as knowing a lot about torticollis. Their phone # is 816-523-1333, addresss is 6650 Troost #100 , Kansas City, MO 64131. Their webpage is www.cranialtech.net. They'll get Grant in for an evaluation and give you their honest opinion.IF for some reason, you still have to wait to get Grant any treatment, 9 mos is not too late. He's still young enough. It is true, the younger, the better, but 9 mos isn't "too old".!Please give Cranial Tech a call & see what they can do or recommend for you. They probably also have another specialist they could refer you to that might get you in faster! Let us know whatever you find out. Welcome again.Debbie Abby's mom DOCGradMI> > Hello,> > My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.> > R, mom to Grant> > > > --------------------------------->

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I would go to www.torticolliskids.com look at their information and see if it sounds like Grant...(to me it does)...but do some reading so when you call the dr. you have your information and say you have researched it....w/Torticollis sometimes there needs to be X-Rays done to make sure the Spine is ok for the PT...W/Braeden the PT just did muscle Massage until the x-rays were done and w/just the massage it help in his mobility...Honestly I would say go with your Maternal instinct...If you Ped still gives you the brush off about it...I would ask for your records and find a new Ped that takes Grants needs seriously enough to get involved and HELP YOU not make you do it all.... your ped should get you in quicker to see someone....look in your ins book to see if there is another Craniofacial dr in your area or in another town thats close to you that will get you in sooner Be a Pain in the Butt if you have to this is your baby you are fighting for...make your voice heard...I'm sorry I may have an aggressive nature but I am so sick of Dr's and Insurance Co. deciding whats best for my child when I am his mother and I know him better than anyone....If you want to e-mail me I can try to find some of the information I have found and send it to you....Trisha

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 2:18 PMPlagiocephaly Subject: RE: Please Help...

Thanks, Trisha. Do you think I should call the doc back and at least ask him to refer me to PT while I WAIT @ MONTHS for this specialist appt? Sorry for my abrasive posts here. I'm just pissed at my pediatrician for making me feel like I'm supposed to know what to do...like I'm the only one that really cares that my son get proper treatment! Trisha s <trisham@...> wrote:

Wow...First of all I do you have a HMO or a PPO? w/HMO you have to have a referral so I would pound that out of my Ped..if you have a PPO I would say venture out on your own and get him in ASAP. My Son (4mos old) has Torticollis "Wry Neck" or "Twisted Neck" and we are in PT for him 2 times a week...he was favoring the Right and has Plagio from this...I would check into Torticollis and PT to help w/ his neck and getting the sternomastcoid muscle worked on....I am in no means an expert on this at all...but it sounds like Torticollis...Then I would call Cranial Technologies you can go in for a free consultation...or visit their web site. www.cranialtech.com they are wonderful...then I would changes peds if in fact your ds does have Tort because this is something that needs to be treated and worked on....I am seriously very very new at all of this I can only give you my opinions I hope this helps some....I am actually trying to get a local TV station here to do a story on this exact thing because I think it is so over looked and put off by some Drs as it will correct itself and that upsets me...Hugs to you

Trisha (mom 2 Braeden)

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 11:39 AMPlagiocephaly Subject: Please Help...

Hello,

My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.

R, mom to Grant

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AMEN....

-----Original Message-----From: debbieandabby [mailto:dj2kirby@...]Sent: Monday, May 13, 2002 2:36 PMPlagiocephaly Subject: Re: Please Help...:I forgot to mention that to you that Cranial Tech in the KC office is called Rehab Designs! But they are Cranial Technologies. I am not sure if that particular office does free evals or if they are one of the 2 that charge, but to my understanding, you do not need a referral from your ped. just to have Grant evaluated by them. You do need a prescription though for them to band Grant IF that's what you end up doing - they cannot put the band on his head or even cast him w/o an RX.I would definitely demand a referral for phys. therapy from your ped in the mean time. If your ped. won't authorize this, then switch peds! Or ask to speak with his partner that brought up Grant's head shape to you and see if she/he will refer you. I know how hard it is to speak up to Drs, but it sounds like your ped. needs a swift kick in the you know where to light a fire under his behind!!!! I hope Cranial Tech gets back with you SOON. Let us know when they do call you back & what they recommend!Debbie Abby's mom DOCGradMI> > > > Hello,> > > > My name is . I had my first baby, a son named Grant, on > September 26, 2001. Not long after he was born, we noticed he had a > tendency to turn his head to the left. We did see him occasionally > turn it to the right, but never to the extent that he turned it to > the left. We also noticed that when he settled down and fell asleep, > his head would always fall the left. When his hair starting > thickening up, we noticed that he had a lot more hair on the right > side...like he was wearing away the hair towards the back of the left > side. I mentioned this at EVERY doc appt and was told about > positioning opposite directions on changing table, in crib, etc. > minimize use of bouncy seat, swing, etc. I did all these things, but > he would just find something new to look at in the left direction and > we never were really using the bouncy seat, swing, etc. anyway. He > never really liked those kind of toys. Well, even now, with him > sitting up or on his tummy all the time it's growing worse. The > flattening is getting very noticeable on the left side and his ears > look misaligned. I don't really notice any asymmetry in his face, > though. Well, a couple of weeks ago I took him to the pediatrician > to get his ears checked (he was pulling at them). We saw a different > ped..the one who was taking emerg. sick visits. She took one look at > him and noticed the head flattening, favoring one side with neck, > etc. She seemed a bit alarmed (even though our normal ped blows it > off constantly and he is one of the top noted pediatricians in the > city?!). She gave me one exercise to do with him, stressed tummy > time (we're doing it all day already), and said he needed to come > back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 > weeks? I was confused and angry and scared. After a couple days of > these excruciating exercises (they are getting a bit easier now) I > called back and demanded to talk to our normal ped. I asked him for > a referral to a specialist to see what needed to be done (after much > reading up on this stuff on my own). He agreed and gave me a name > of a craniofacial specialist (a pediatric reconstructive/plastic > surgery doc)... I call this guy and can't get in until July 18th!!! > My baby will be almost 9 mos. old then!!! I called my ped back to > tell him and see what my alternatives where (can he grease the > wheels? Is there someone else?) and he says just keep doing the > exercises...you won't get in anywhere else sooner. HELP...what would > you experienced ladies do in my spot? What do I do next? Will it be > too late to fix his head shape? Would you find someone to call on > your own? Help, please. Anyone in the KC area? Thanks so much.> > > > R, mom to Grant> > > > > > > > ---------------------------------> >

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,

Hello and welcome - you have come to the right place. First let me say that July

18 is WAY too long to have to wait! Call the specialist's office yourself and

get placed on the waiting list. This way you will be callled if they have

cancellations and could potentially get in there sooner. I see you got some very

good information from Debbie regarding CT in your area with a phone number and

everything!!! I would definitely give them a call and see if you can come in for

a free consultation. Some CT office's do evals for free some charge a fee. They

may be able to recommend a specialist that gives priority to slightly older

plagio babies. The folks at CT are very professional and helpful and will surely

do whateve they can to help you.

Nine months would not be too late, but it is true that the younger you get

started the better the correction. In the meanwhile I would agree that you

should stick with the repositioning and exercises. These things can only help!

Good luck and stick with us - we're here to help you!

Marci (mom to )

oklahoma

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JULIE!!!!!! That is the doc we have the appt with on July 18th!!! When are you seeing him??? My pediatrician (DR Rob Stein - Child Care Limited, Inside St. ph Medical Center, KC, MO) referred us to him. I really would love to talk to you more!

debbieandabby <dj2kirby@...> wrote: :Here's another message with another Dr's name in KC:Debbie Abby's momMIMessage 32184 of 32843 | Previous | Next [ Up Thread ] Message Index Msg # From: "artbyjules" <artbyjules@...> Date: Fri May 3, 2002 1:10 pmSubject: DR. VIRENDER K. SINGHAL at Children's Mercy-Kansas CityADVERTISEMENTAnyone in KC area familiar with Dr. Singhal or his colleagues at Children's Mercy in KC? We've been referred to him.Any info is welcome.ny's Momartbyjules@... For more plagio info

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You ladies are REALLY helping me help my son Grant. I called this Dr. Witt (he's even on my insurance!!!) and talked with his nurse. She was sooo nice and helpful. She got me in for JUNE 3rd!!! I'd say that is a major improvement over the July 18th appt. w/ Dr. Singhal. She also said they are now holding monthly clinics for this and that their practice is starting an awareness campaign with local pediatricians because the referrals are consistently coming in so late. I called my ped's office and told the nurse 1. I want a referral for PT and 2. I made an appointment with a different specialist...we'll see what happens with that. I hope he is supportive.

debbieandabby <dj2kirby@...> wrote: :I searched the archives for the KC messages we had recently & found a couple posts with Drs. names :Here's one of the posts, I'll be back with another in a minute! Hope this helps:Debbie Abby's mom dOCGradMIFrom: C Bastian <cwlkjbastian@...> Date: Fri May 3, 2002 1:48 pmSubject: Re: DR. VIRENDER K. SINGHAL at Children's Mercy-Kansas CityADVERTISEMENT,We personally saw Dr. Witt at KUMC, but I know several people whohave been to Dr. Singhal and liked him. I know it is scary startingout on this road but it really will be fine. My son started in his DOCband at 9 mos. of age and was in it for 5 months. The people at RehabDesigns of America in KC are wonderful, wonderful people. I stressedabout it at first but we couldn't have had a better experience. Ifthere is anything I can do for you, please let me know. Take care--Wendi, mom to (DOC grad)For more plagio info

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Trisha,

Is this web address still good? I can't get it to work. Thanks!

Trisha s <trisham@...> wrote:

,

I would go to www.torticolliskids.com look at their information and see if it sounds like Grant...(to me it does)...but do some reading so when you call the dr. you have your information and say you have researched it....w/Torticollis sometimes there needs to be X-Rays done to make sure the Spine is ok for the PT...W/Braeden the PT just did muscle Massage until the x-rays were done and w/just the massage it help in his mobility...Honestly I would say go with your Maternal instinct...If you Ped still gives you the brush off about it...I would ask for your records and find a new Ped that takes Grants needs seriously enough to get involved and HELP YOU not make you do it all.... your ped should get you in quicker to see someone....look in your ins book to see if there is another Craniofacial dr in your area or in another town thats close to you that will get you in sooner Be a Pain in the Butt if you have to this is your baby you are fighting for...make your voice heard...I'm sorry I may have an aggressive nature but I am so sick of Dr's and Insurance Co. deciding whats best for my child when I am his mother and I know him better than anyone....If you want to e-mail me I can try to find some of the information I have found and send it to you....Trisha

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 2:18 PMPlagiocephaly Subject: RE: Please Help...

Thanks, Trisha. Do you think I should call the doc back and at least ask him to refer me to PT while I WAIT @ MONTHS for this specialist appt? Sorry for my abrasive posts here. I'm just pissed at my pediatrician for making me feel like I'm supposed to know what to do...like I'm the only one that really cares that my son get proper treatment! Trisha s <trisham@...> wrote:

Wow...First of all I do you have a HMO or a PPO? w/HMO you have to have a referral so I would pound that out of my Ped..if you have a PPO I would say venture out on your own and get him in ASAP. My Son (4mos old) has Torticollis "Wry Neck" or "Twisted Neck" and we are in PT for him 2 times a week...he was favoring the Right and has Plagio from this...I would check into Torticollis and PT to help w/ his neck and getting the sternomastcoid muscle worked on....I am in no means an expert on this at all...but it sounds like Torticollis...Then I would call Cranial Technologies you can go in for a free consultation...or visit their web site. www.cranialtech.com they are wonderful...then I would changes peds if in fact your ds does have Tort because this is something that needs to be treated and worked on....I am seriously very very new at all of this I can only give you my opinions I hope this helps some....I am actually trying to get a local TV station here to do a story on this exact thing because I think it is so over looked and put off by some Drs as it will correct itself and that upsets me...Hugs to you

Trisha (mom 2 Braeden)

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 11:39 AMPlagiocephaly Subject: Please Help...

Hello,

My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.

R, mom to Grant

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Brain TOOT>> http://www.torticolliskids.org duhhhhh .org sorry

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 4:32 PMPlagiocephaly Subject: RE: Please Help...

Trisha, Is this web address still good? I can't get it to work. Thanks! Trisha s <trisham@...> wrote:

,

I would go to www.torticolliskids.com look at their information and see if it sounds like Grant...(to me it does)...but do some reading so when you call the dr. you have your information and say you have researched it....w/Torticollis sometimes there needs to be X-Rays done to make sure the Spine is ok for the PT...W/Braeden the PT just did muscle Massage until the x-rays were done and w/just the massage it help in his mobility...Honestly I would say go with your Maternal instinct...If you Ped still gives you the brush off about it...I would ask for your records and find a new Ped that takes Grants needs seriously enough to get involved and HELP YOU not make you do it all.... your ped should get you in quicker to see someone....look in your ins book to see if there is another Craniofacial dr in your area or in another town thats close to you that will get you in sooner Be a Pain in the Butt if you have to this is your baby you are fighting for...make your voice heard...I'm sorry I may have an aggressive nature but I am so sick of Dr's and Insurance Co. deciding whats best for my child when I am his mother and I know him better than anyone....If you want to e-mail me I can try to find some of the information I have found and send it to you....Trisha

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 2:18 PMPlagiocephaly Subject: RE: Please Help...

Thanks, Trisha. Do you think I should call the doc back and at least ask him to refer me to PT while I WAIT @ MONTHS for this specialist appt? Sorry for my abrasive posts here. I'm just pissed at my pediatrician for making me feel like I'm supposed to know what to do...like I'm the only one that really cares that my son get proper treatment! Trisha s <trisham@...> wrote:

Wow...First of all I do you have a HMO or a PPO? w/HMO you have to have a referral so I would pound that out of my Ped..if you have a PPO I would say venture out on your own and get him in ASAP. My Son (4mos old) has Torticollis "Wry Neck" or "Twisted Neck" and we are in PT for him 2 times a week...he was favoring the Right and has Plagio from this...I would check into Torticollis and PT to help w/ his neck and getting the sternomastcoid muscle worked on....I am in no means an expert on this at all...but it sounds like Torticollis...Then I would call Cranial Technologies you can go in for a free consultation...or visit their web site. www.cranialtech.com they are wonderful...then I would changes peds if in fact your ds does have Tort because this is something that needs to be treated and worked on....I am seriously very very new at all of this I can only give you my opinions I hope this helps some....I am actually trying to get a local TV station here to do a story on this exact thing because I think it is so over looked and put off by some Drs as it will correct itself and that upsets me...Hugs to you

Trisha (mom 2 Braeden)

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 11:39 AMPlagiocephaly Subject: Please Help...

Hello,

My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.

R, mom to Grant

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that is Wonderful...you go girl!!! I would still tell them if there is a cancellation to call you .... June 3rd is great but if something opens up earlier Grab it....You are doing great...I am so happy you got in earlier...wooohooo..Trisha

Re: DR. VIRENDER K. SINGHAL at Children's Mercy-Kansas CityADVERTISEMENT,We personally saw Dr. Witt at KUMC, but I know several people whohave been to Dr. Singhal and liked him. I know it is scary startingout on this road but it really will be fine. My son started in his DOCband at 9 mos. of age and was in it for 5 months. The people at RehabDesigns of America in KC are wonderful, wonderful people. I stressedabout it at first but we couldn't have had a better experience. Ifthere is anything I can do for you, please let me know. Take care--Wendi, mom to (DOC grad)For more plagio info

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Hi, I wrote you email directly (I hope you get that) but I forgot to mention that the place you would get the DOC band in KC is called Rehab Designs of America (RDA) and Debbie is right, they are on Troost. Jan and Bob are both WONDERFUL with the band. I'm glad to see that you have an appt. with Dr. Witt (he has five children himself and is sooooooooo cute with the patients). Take care,

Wendi, mom to (DOC grad)

On Mon, 13 May 2002 16:58:48 -0000 "debbieandabby" <dj2kirby@...> writes:

Hi & welcome to our group!I am so sorry to hear of the predicament you are currently in! Unfortunatley, your story is very common amongst other group members. 2 mos before you can get into the specialist? That's pretty common too. Did you request to be put on a cancellation list, so if they get any cancellations between now & your appt., they will call you if there is an opening? If not, I request doing that as well. We do have another new KC member, she just posted 2 wks ago or so, I'm hoping she'll reply to you with some area information. I'll look that message up again & give you that info as well.You are very lucky though to be located in KC, Cranial Technologies - mfg. of the DOCband has an office in the Kansas City area. Give their office a call & I'm sure they'll get Grant in for an appt within 2 wks or so. They are specialists in treating plagio as well as knowing a lot about torticollis. Their phone # is 816-523-1333, addresss is 6650 Troost #100 , Kansas City, MO 64131. Their webpage is www.cranialtech.net. They'll get Grant in for an evaluation and give you their honest opinion.IF for some reason, you still have to wait to get Grant any treatment, 9 mos is not too late. He's still young enough. It is true, the younger, the better, but 9 mos isn't "too old".!Please give Cranial Tech a call & see what they can do or recommend for you. They probably also have another specialist they could refer you to that might get you in faster! Let us know whatever you find out. Welcome again.Debbie Abby's mom DOCGradMI> > Hello,> > My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or on his tummy all the time it's growing worse. The flattening is getting very noticeable on the left side and his ears look misaligned. I don't really notice any asymmetry in his face, though. Well, a couple of weeks ago I took him to the pediatrician to get his ears checked (he was pulling at them). We saw a different ped..the one who was taking emerg. sick visits. She took one look at him and noticed the head flattening, favoring one side with neck, etc. She seemed a bit alarmed (even though our normal ped blows it off constantly and he is one of the top noted pediatricians in the city?!). She gave me one exercise to do with him, stressed tummy time (we're doing it all day already), and said he needed to come back in 3 weeks and be evaluated for possible PT. Hello? Why wait 3 weeks? I was confused and angry and scared. After a couple days of these excruciating exercises (they are getting a bit easier now) I called back and demanded to talk to our normal ped. I asked him for a referral to a specialist to see what needed to be done (after much reading up on this stuff on my own). He agreed and gave me a name of a craniofacial specialist (a pediatric reconstructive/plastic surgery doc)... I call this guy and can't get in until July 18th!!! My baby will be almost 9 mos. old then!!! I called my ped back to tell him and see what my alternatives where (can he grease the wheels? Is there someone else?) and he says just keep doing the exercises...you won't get in anywhere else sooner. HELP...what would you experienced ladies do in my spot? What do I do next? Will it be too late to fix his head shape? Would you find someone to call on your own? Help, please. Anyone in the KC area? Thanks so much.> > R, mom to Grant> > > > --------------------------------->

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:

Try www.torticolliskids.org

Kendra

RE: Please Help...

Trisha, Is this web address still good? I can't get it to work. Thanks! Trisha s <trisham@...> wrote:

,

I would go to www.torticolliskids.com look at their information and see if it sounds like Grant...(to me it does)...but do some reading so when you call the dr. you have your information and say you have researched it....w/Torticollis sometimes there needs to be X-Rays done to make sure the Spine is ok for the PT...W/Braeden the PT just did muscle Massage until the x-rays were done and w/just the massage it help in his mobility...Honestly I would say go with your Maternal instinct...If you Ped still gives you the brush off about it...I would ask for your records and find a new Ped that takes Grants needs seriously enough to get involved and HELP YOU not make you do it all.... your ped should get you in quicker to see someone....look in your ins book to see if there is another Craniofacial dr in your area or in another town thats close to you that will get you in sooner Be a Pain in the But

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 2:18 PMPlagiocephaly Subject: RE: Please Help...

Thanks, Trisha. Do you think I should call the doc back and at least ask him to refer me to PT while I WAIT @ MONTHS for this specialist appt? Sorry for my abrasive posts here. I'm just pissed at my pediatrician for making me feel like I'm supposed to know what to do...like I'm the only one that really cares that my son get proper treatment! Trisha s <trisham@...> wrote:

Wow...First of all I do you have a HMO or a PPO? w/HMO you have to have a referral so I would pound that out of my Ped..if you have a PPO I would say venture out on your own and get him in ASAP. My Son (4mos old) has Torticollis "Wry Neck" or "Twisted Neck" and we are in PT for him 2 times a week...he was favoring the Right and has Plagio from this...I would check into Torticollis and PT to help w/ his neck and getting the sternomastcoid muscle worked on....I am in no means an expert on this at all...but it sounds like Torticollis...Then I would call Cranial Technologies you can go in for a free consultation...or visit their web site. www.cranialtech.com they are wonderful...then I would changes peds if in fact your ds does have Tort because this is something that needs to be treated and worked on....I am seriously very very new at all of this I can only give you my opinions I hope

Trisha (mom 2 Braeden)

-----Original Message-----From: Robben [mailto:kellysdogs@...]Sent: Monday, May 13, 2002 11:39 AMPlagiocephaly Subject: Please Help...

Hello,

My name is . I had my first baby, a son named Grant, on September 26, 2001. Not long after he was born, we noticed he had a tendency to turn his head to the left. We did see him occasionally turn it to the right, but never to the extent that he turned it to the left. We also noticed that when he settled down and fell asleep, his head would always fall the left. When his hair starting thickening up, we noticed that he had a lot more hair on the right side...like he was wearing away the hair towards the back of the left side. I mentioned this at EVERY doc appt and was told about positioning opposite directions on changing table, in crib, etc. minimize use of bouncy seat, swing, etc. I did all these things, but he would just find something new to look at in the left direction and we never were really using the bouncy seat, swing, etc. anyway. He never really liked those kind of toys. Well, even now, with him sitting up or R, mom to Grant

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Hi ,

Welcome to the group! I see you have already gotten tons of great advice from a lot of members here-this is a great bunch of caring parents!

My son was dx with tort at 8 weeks and despite our repositioning efforts, the plagio that started inutero only progressed to the point that he had very noticeable facial asymmetry and ear misalignment. I would recommend that an MRI or catscan be done to rule out any spinal fusion (some tort is also caused by hip displasia, again rare) most tort is muscular but you really want to know this because pt is only useful for muscular tort. More than likely, this is what Grant has and the stretches the Doc gave you should really help out in getting it resolved. Also be conscious of how you hold him, I will attach a link that shows a great hold to help stretch the muscle without much fuss. Also, be conscious of posture, make sure that Grant does not pull up his shoulder or hip on the tort side to accomodate his tight neck muscle. Use toys, videos, bubbles, whatever it takes, to make him rotate towards the non-favored side. Hold his body when he turns so that he doesn't take the whole body with him when turning. Tummy time is great to strengthen those neck muscles. You got a great link to the tort group, they are a great source of information and tips and helped me a great deal at the start of my son's tort/plagio journey. Your on the right track by getting in quicker with appts. and demanding a referral for pt. This is very important, but the majority of work will have to come from Mom and Dad by stretching daily and watching posture. I also found that massage helped greatly- and you can heat up uncooked rice in a sock to lay on the muscle to let it loosen up before stretches (always check that temp. by laying it on your wrist for a good 10 seconds as it gets hotter the longer it stays on). We had our best stretches when was conked out. For us the repositioning didn't work and the helmet (DOC band) afforded us the results we needed to see. Facial asymmetry and ear misalignment, after lots of pt and the DOC band, are no longer issues. Good luck to you and be persistent with your ped. My ped also blew off concerns, but I went to CT without her knowledge, educated myself, and asked for that referral against her advice. To this day, some 8 months after helmet graduation, she is forever saying we (Dad and I) made the right decision!

Go with your gut as you know, and your son will be just fine. Good luck to you and if I can help you in anyway, please email me.

' Mom

Stretches/ Hold

P.S. I was also told that when you turn the child's head for stretching, put your entire palm on the cheek, and do not turn the head with the chin, this can cause the jaw to misalign over time and possibly lead to TMJ.

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,

Your very welcome! It really is frustrating to see that tilt come and go-

one day you think all of your hard work has paid off and the next you feel

your back to square one!! I have seen my son tilt worse when teething, sick

and just plain tired. It's funny, I actually tell him to hold his head

straight, and sometimes he does- sometimes he tilts the opposite way and

starts laughing! It took us from 3 months to about 9-10 months to consider

him resolved (6-7 months of daily stretches and massages!), and even now I

hesitate to say that because I am very conscious of watching him still and

keeping up with posture and stretches that can be done while having fun- I

have been told that up until 2 years of age you should really keep up with

it.

Another tip that worked for us:

When in high chair, face him away from the tv- put on the best Elmo or

whatever Grant likes, bubbles are good, and make him really look towards that

unfavored side if he wants to watch it! I wouldn't make him look way hard,

but just start out slowly with a good degree and work up.

Also, you want to strengthen the non-tort muscle- you can do this by tilting

Grant towards the tort side while sitting on your lap (again facing the tv

makes it fun)- and he should try to keep his head straight while his body is

tilted sideways. You can also buy an exercise ball at Wal-Mart and do this

while on the ball- he loved that!

Good luck! Keep me posted!

' Mom

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,

Thank you, thank you, thank you for such an informative post and for the link. I printed both out and am using this stuff. It is so frustrating! My son's first tooth is coming in and the tort now seems worse. He is so stuck on turning his head left...even though the exercises are getting easier...he won't let go of that preference. It really does seem worse all of the sudden with the teething?!

rella1234@... wrote: Hi ,Welcome to the group! I see you have already gotten tons of great advice from a lot of members here-this is a great bunch of caring parents! My son was dx with tort at 8 weeks and despite our repositioning efforts, the plagio that started inutero only progressed to the point that he had very noticeable facial asymmetry and ear misalignment. I would recommend that an MRI or catscan be done to rule out any spinal fusion (some tort is also caused by hip displasia, again rare) most tort is muscular but you really want to know this because pt is only useful for muscular tort. More than likely, this is what Grant has and the stretches the Doc gave you should really help out in getting it resolved. Also be conscious of how you hold him, I will attach a link that shows a great hold to help stretch the muscle without much fuss. Also, be conscious of posture, make sure that Grant does not pull up his shoulder or hip on the tort side to accomodate his tight neck muscle. Use toys, videos, bubbles, whatever it takes, to make him rotate towards the non-favored side. Hold his body when he turns so that he doesn't take the whole body with him when turning. Tummy time is great to strengthen those neck muscles. You got a great link to the tort group, they are a great source of information and tips and helped me a great deal at the start of my son's tort/plagio journey. Your on the right track by getting in quicker with appts. and demanding a referral for pt. This is very important, but the majority of work will have to come from Mom and Dad by stretching daily and watching posture. I also found that massage helped greatly- and you can heat up uncooked rice in a sock to lay on the muscle to let it loosen up before stretches (always check that temp. by laying it on your wrist for a good 10 seconds as it gets hotter the longer it stays on). We had our best stretches when was conked out. For us the repositioning didn't work and the helmet (DOC band) afforded us the results we needed to see. Facial asymmetry and ear misalignment, after lots of pt and the DOC band, are no longer issues. Good luck to you and be persistent with your ped. My ped also blew off concerns, but I went to CT without her knowledge, educated myself, and asked for that referral against her advice. To this day, some 8 months after helmet graduation, she is forever saying we (Dad and I) made the right decision!Go with your gut as you know, and your son will be just fine. Good luck to you and if I can help you in anyway, please email me. ' MomStretches/ HoldP.S. I was also told that when you turn the child's head for stretching, put your entire palm on the cheek, and do not turn the head with the chin, this can cause the jaw to misalign over time and possibly lead to TMJ. For more plagio info

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Thanks for more great tips, ! I am already seeing a huge difference in his range of motion. He has started to voluntarily turn his head far to the right!! It doesn't happen a whole lot...but hey, it happens! And, I don't know if I'm imagining it, but there may be some improvement in Grant's head since we have been keeping him off his flat spot at night. We had him sleep on this round side, using a double wedge device to hold him in position (I was surprised this worked...he's 7 1/2 months) for the last couple of weeks and the past several nights we have been letting him sleep on his back and staying there until his head falls to the right. Before, he never had the flexibiltiy for it to even fall that way.

rella1234@... wrote: ,Your very welcome! It really is frustrating to see that tilt come and go- one day you think all of your hard work has paid off and the next you feel your back to square one!! I have seen my son tilt worse when teething, sick and just plain tired. It's funny, I actually tell him to hold his head straight, and sometimes he does- sometimes he tilts the opposite way and starts laughing! It took us from 3 months to about 9-10 months to consider him resolved (6-7 months of daily stretches and massages!), and even now I hesitate to say that because I am very conscious of watching him still and keeping up with posture and stretches that can be done while having fun- I have been told that up until 2 years of age you should really keep up with it. Another tip that worked for us:When in high chair, face him away from the tv- put on the best Elmo or whatever Grant likes, bubbles are good, and make him really look towards that unfavored side if he wants to watch it! I wouldn't make him look way hard, but just start out slowly with a good degree and work up. Also, you want to strengthen the non-tort muscle- you can do this by tilting Grant towards the tort side while sitting on your lap (again facing the tv makes it fun)- and he should try to keep his head straight while his body is tilted sideways. You can also buy an exercise ball at Wal-Mart and do this while on the ball- he loved that! Good luck! Keep me posted!' MomFor more plagio info

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In a message dated 5/19/2002 7:09:03 PM Eastern Daylight Time, kellysdogs@... writes:

He has started to voluntarily turn his head far to the right!! It doesn't happen a whole lot...but hey, it happens! And, I don't know if I'm imagining it, but there may be some improvement in Grant's head since we have been keeping him off his flat spot at night.

,

WOOHOO!!!!!! Progress!! I'm sure your NOT imagining it- the more time off that flat spot the better! Great news that the tort is responding well to therapy! Keep up the great work!

' Mom

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  • 1 year later...

hi, we've had this discussion recently and apparently some people are new

or forgot. PLEASE clip your messages... Yes, include whatever part of a

previous message that you are referencing, but not the entire thing. Those

of us on digest spend half our time searching for the information that is

hidden amongst all the gobbly-gook. I know I miss things as some are at the

bottom and some at the top. I think it is important for us to read all of

the information, so please try to make it easier for us.. thanks again, Lynn

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