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Hi, Does anyone have experience with physical therapy and/or massage as

treatment for plagio? I am considering that as an alternate to a helmet and am

trying to gather as much info. as possible right now. Thanks!

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We had a PT that did CST along with the helmet.

I haven't heard of massage therapy as an alternative.

olderplag group talks a lot about alternatives to the helmet because most of the kids on there are too old for them. You might want to subscribe to get additional information. I've seen most about CST and something called activator chiro.

Also, please educate yourself so that you can be sure that you don't want to helmet. I'd hate to see you in the position that I was put in where we didn't do a helmet until we were told old to get maximum benefit. I understand that not everyone wants to band, but I'd love for the decision not to band to be an informed one. For me, my decision to wait to band was made as an uninformed person and I will always feel bad about this.

I just sent an email to the doctor who wrote our prescription for the first band to ask her about her understanding of the effectiveness of these alternative treatments (and whether she'd write me another prescription for another band if I choose to go that route). She works at the cranial cervical clinic at Kennedy Krieger Institute in Baltimore. She diagnosed with Brachcephaly and recommended the band and the CST that we did in conjunction with the helmet. Because of her recommendation for CST, I believe that she is open to nonmedical treatments. I also found her to be quite knowledgeable about the issue and easy to talk to. I will let you know what she has to say.

, mom to , 22.5 months

STARband grad (from 14 to 20 months)

Waiting on CT consult next Monday

land

physical therapy?

Hi, Does anyone have experience with physical therapy and/or massage as treatment for plagio? I am considering that as an alternate to a helmet and am trying to gather as much info. as possible right now. Thanks!

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I think we are going to go with a band afterall, but I am also going to look

into PT as well because he doesn't like to turn to the left even though he can

and he immediately rolls over when placed on his tummy.

I am doing all of the research on my own because my ped does not even recommend

a band, I happened to see a different doc in the practice at the 6 mo appt. who

recommended it. I also had to ask my ped for a PT referral because he did not

offer that on his own.

like you said we don't want to have any regrets about not banding and he is 6.5

mo. so we would need to do it now. we know that other methods could work, but we

want the method with the best odds. thanks for your response.

>

>

>

> We had a PT that did CST along with the helmet.

>

>

>

> I haven't heard of massage therapy as an alternative.

>

>

>

> olderplag group talks a lot about alternatives to the helmet because

most of the kids on there are too old for them. You might want to subscribe to

get additional information. I've seen most about CST and something called

activator chiro.

>

>

>

> Also, please educate yourself so that you can be sure that you don't want to

helmet. I'd hate to see you in the position that I was put in where we didn't do

a helmet until we were told old to get maximum benefit. I understand that not

everyone wants to band, but I'd love for the decision not to band to be an

informed one. For me, my decision to wait to band was made as an uninformed

person and I will always feel bad about this.

>

>

>

> I just sent an email to the doctor who wrote our prescription for the first

band to ask her about her understanding of the effectiveness of these

alternative treatments (and whether she'd write me another prescription for

another band if I choose to go that route). She works at the cranial cervical

clinic at Kennedy Krieger Institute in Baltimore. She diagnosed with

Brachcephaly and recommended the band and the CST that we did in conjunction

with the helmet. Because of her recommendation for CST, I believe that she is

open to nonmedical treatments. I also found her to be quite knowledgeable about

the issue and easy to talk to. I will let you know what she has to say.

>

>

>

> , mom to , 22.5 months

>

> STARband grad (from 14 to 20 months)

>

> Waiting on CT consult next Monday

>

> land

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>

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>

>

> Lilypie Baby Ticker  Lilypie Baby Ticker  Lilypie Baby Ticker

>

> physical therapy?

>

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>

>

>

>

>

>

> Hi, Does anyone have experience with physical therapy and/or massage as

treatment for plagio? I am considering that as an alternate to a helmet and am

trying to gather as much info. as possible right now. Thanks!

>

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Sounds like you have a plan. the PT sounds like a good idea because of the possible tort.

By the way, my doctor said she had never heard of activator chiro, but did not recommend any kind of chiro for infants and young children. She said that she did recommend that we go back to the CST as we could still continue to get improvements for the next several years.

As far as the band goes, she did not sound supportive. She said that she does not always agree with CT's recommendations in terms of when it is appropriate to band. She also said that FDA recommends not starting a band at older than 18 months. While she didn't say that she wouldn't write the prescription, she did ask me to let her know what they say after I meet with them. I had been hoping to actually get a prescription that I could take with me or have faxed to them should I decide I want to do the band on Monday. That way, we could just move straight into a scan, but it sounds like that's not an option now. Because I faxed the old prescription for the STARband, I still have the original copy of the prescription that I got from her before, but it specifically states, "STARband." Plus, it was dated last October and has already been filled at Orthoamerica.

In the meantime, I will call back our PT to schedule another CST appointment. I'm also going to still look into the activator chiro as well. I tried to call them today, but there office is closed on Thursday, but they do have Saturday hours.

Do you know how and where to get started with the banding process?

, mom to , 22.5 months

STARband grad, banded from 14.5 to 20.5 months

land

physical therapy? > > > > > > > > > Hi, Does anyone have experience with physical therapy and/or massage as treatment for plagio? I am considering that as an alternate to a helmet and am trying to gather as much info. as possible right now. Thanks!>

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Hi -

The comment your doctor made is interesting to me, that the FDA doesn't

recommend banding babies over 18months. That's the first time I've heard of that

argument coming directly from the FDA, but also, the DOCBand was the first FDA

approved helmet, and it specifically treats babies up to 24 months, so that

makes me wonder if that statement is wholly accurate. Interesting...

I hope the eval goes well on Monday. Please keep us posted!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

> >

> >

> >

> > We had a PT that did CST along with the helmet.

> >

> >

> >

> > I haven't heard of massage therapy as an alternative.

> >

> >

> >

> > olderplag group talks a lot about alternatives to the helmet because

most of the kids on there are too old for them. You might want to subscribe to

get additional information. I've seen most about CST and something called

activator chiro.

> >

> >

> >

> > Also, please educate yourself so that you can be sure that you don't want to

helmet. I'd hate to see you in the position that I was put in where we didn't do

a helmet until we were told old to get maximum benefit. I understand that not

everyone wants to band, but I'd love for the decision not to band to be an

informed one. For me, my decision to wait to band was made as an uninformed

person and I will always feel bad about this.

> >

> >

> >

> > I just sent an email to the doctor who wrote our prescription for the first

band to ask her about her understanding of the effectiveness of these

alternative treatments (and whether she'd write me another prescription for

another band if I choose to go that route). She works at the cranial cervical

clinic at Kennedy Krieger Institute in Baltimore. She diagnosed with

Brachcephaly and recommended the band and the CST that we did in conjunction

with the helmet. Because of her recommendation for CST, I believe that she is

open to nonmedical treatments. I also found her to be quite knowledgeable about

the issue and easy to talk to. I will let you know what she has to say.

> >

> >

> >

> > , mom to , 22.5 months

> >

> > STARband grad (from 14 to 20 months)

> >

> > Waiting on CT consult next Monday

> >

> > land

> >

> >

> >

> >

> >

> >

> >

> >

> > Lilypie Baby Ticker  Lilypie Baby Ticker  Lilypie Baby Ticker

> >

> > physical therapy?

> >

> >

> >

> >

> >

> >

> >

> >

> > Hi, Does anyone have experience with physical therapy and/or massage as

treatment for plagio? I am considering that as an alternate to a helmet and am

trying to gather as much info. as possible right now. Thanks!

> >

>

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CT in Oak Brook, Illinois also told me that they typically only treat up to 18 months.

Joyce

Plagiocephaly From: nwilkens2275@...Date: Fri, 10 Jul 2009 12:24:13 +0000Subject: Re: physical therapy?

Hi -The comment your doctor made is interesting to me, that the FDA doesn't recommend banding babies over 18months. That's the first time I've heard of that argument coming directly from the FDA, but also, the DOCBand was the first FDA approved helmet, and it specifically treats babies up to 24 months, so that makes me wonder if that statement is wholly accurate. Interesting...I hope the eval goes well on Monday. Please keep us posted!Jake-2.5 (DOCBand Grad 9/08)Jordan-5 > > > > > > > > We had a PT that did CST along with the helmet. > > > > > > > > I haven't heard of massage therapy as an alternative. > > > > > > > > olderplag group talks a lot about alternatives to the helmet because most of the kids on there are too old for them. You might want to subscribe to get additional information. I've seen most about CST and something called activator chiro. > > > > > > > > Also, please educate yourself so that you can be sure that you don't want to helmet. I'd hate to see you in the position that I was put in where we didn't do a helmet until we were told old to get maximum benefit. I understand that not everyone wants to band, but I'd love for the decision not to band to be an informed one. For me, my decision to wait to band was made as an uninformed person and I will always feel bad about this. > > > > > > > > I just sent an email to the doctor who wrote our prescription for the first band to ask her about her understanding of the effectiveness of these alternative treatments (and whether she'd write me another prescription for another band if I choose to go that route). She works at the cranial cervical clinic at Kennedy Krieger Institute in Baltimore. She diagnosed with Brachcephaly and recommended the band and the CST that we did in conjunction with the helmet. Because of her recommendation for CST, I believe that she is open to nonmedical treatments. I also found her to be quite knowledgeable about the issue and easy to talk to. I will let you know what she has to say. > > > > > > > > , mom to , 22.5 months > > > > STARband grad (from 14 to 20 months) > > > > Waiting on CT consult next Monday > > > > land > > > > > > > > > > > > > > > > > > Lilypie Baby Ticker Lilypie Baby Ticker Lilypie Baby Ticker > > > > physical therapy? > > > > > > > > > > > > > > > > > > Hi, Does anyone have experience with physical therapy and/or massage as treatment for plagio? I am considering that as an alternate to a helmet and am trying to gather as much info. as possible right now. Thanks! > >>

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Maybe typically, but I would guess not exclusively. They're website says they

treat babies up to 24 months (in general), and my son was already 17 months when

he got his first one from CT Charlotte, wore 2, and graduated at 24 months and 2

weeks of age. So it's all case-by-case.

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

> > >

> > >

> > >

> > > We had a PT that did CST along with the helmet.

> > >

> > >

> > >

> > > I haven't heard of massage therapy as an alternative.

> > >

> > >

> > >

> > > olderplag group talks a lot about alternatives to the helmet because

most of the kids on there are too old for them. You might want to subscribe to

get additional information. I've seen most about CST and something called

activator chiro.

> > >

> > >

> > >

> > > Also, please educate yourself so that you can be sure that you don't want

to helmet. I'd hate to see you in the position that I was put in where we didn't

do a helmet until we were told old to get maximum benefit. I understand that not

everyone wants to band, but I'd love for the decision not to band to be an

informed one. For me, my decision to wait to band was made as an uninformed

person and I will always feel bad about this.

> > >

> > >

> > >

> > > I just sent an email to the doctor who wrote our prescription for the

first band to ask her about her understanding of the effectiveness of these

alternative treatments (and whether she'd write me another prescription for

another band if I choose to go that route). She works at the cranial cervical

clinic at Kennedy Krieger Institute in Baltimore. She diagnosed with

Brachcephaly and recommended the band and the CST that we did in conjunction

with the helmet. Because of her recommendation for CST, I believe that she is

open to nonmedical treatments. I also found her to be quite knowledgeable about

the issue and easy to talk to. I will let you know what she has to say.

> > >

> > >

> > >

> > > , mom to , 22.5 months

> > >

> > > STARband grad (from 14 to 20 months)

> > >

> > > Waiting on CT consult next Monday

> > >

> > > land

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Lilypie Baby Ticker Lilypie Baby Ticker Lilypie Baby Ticker

> > >

> > > physical therapy?

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > Hi, Does anyone have experience with physical therapy and/or massage as

treatment for plagio? I am considering that as an alternate to a helmet and am

trying to gather as much info. as possible right now. Thanks!

> > >

> >

>

>

>

>

>

>

>

>

>

> _________________________________________________________________

> Windows Live™ SkyDrive™: Get 25 GB of free online storage.

> http://windowslive.com/online/skydrive?ocid=TXT_TAGLM_WL_SD_25GB_062009

>

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That is good to know. Maybe the insurance only covers if it is before 18 months. Did your son have good results?

Plagiocephaly From: nwilkens2275@...Date: Fri, 10 Jul 2009 15:19:44 +0000Subject: Re: physical therapy?

Maybe typically, but I would guess not exclusively. They're website says they treat babies up to 24 months (in general), and my son was already 17 months when he got his first one from CT Charlotte, wore 2, and graduated at 24 months and 2 weeks of age. So it's all case-by-case. Jake-2.5 (DOCBand Grad 9/08)Jordan-5 > > > > > > > > > > > > We had a PT that did CST along with the helmet. > > > > > > > > > > > > I haven't heard of massage therapy as an alternative. > > > > > > > > > > > > olderplag group talks a lot about alternatives to the helmet because most of the kids on there are too old for them. You might want to subscribe to get additional information. I've seen most about CST and something called activator chiro. > > > > > > > > > > > > Also, please educate yourself so that you can be sure that you don't want to helmet. I'd hate to see you in the position that I was put in where we didn't do a helmet until we were told old to get maximum benefit. I understand that not everyone wants to band, but I'd love for the decision not to band to be an informed one. For me, my decision to wait to band was made as an uninformed person and I will always feel bad about this. > > > > > > > > > > > > I just sent an email to the doctor who wrote our prescription for the first band to ask her about her understanding of the effectiveness of these alternative treatments (and whether she'd write me another prescription for another band if I choose to go that route). She works at the cranial cervical clinic at Kennedy Krieger Institute in Baltimore. She diagnosed with Brachcephaly and recommended the band and the CST that we did in conjunction with the helmet. Because of her recommendation for CST, I believe that she is open to nonmedical treatments. I also found her to be quite knowledgeable about the issue and easy to talk to. I will let you know what she has to say. > > > > > > > > > > > > , mom to , 22.5 months > > > > > > STARband grad (from 14 to 20 months) > > > > > > Waiting on CT consult next Monday > > > > > > land > > > > > > > > > > > > > > > > > > > > > > > > > > > Lilypie Baby Ticker Lilypie Baby Ticker Lilypie Baby Ticker > > > > > > physical therapy? > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, Does anyone have experience with physical therapy and/or massage as treatment for plagio? I am considering that as an alternate to a helmet and am trying to gather as much info. as possible right now. Thanks! > > >> >> > > > > > > > > > __________________________________________________________> Windows Live™ SkyDrive™: Get 25 GB of free online storage.> http://windowslive.com/online/skydrive?ocid=TXT_TAGLM_WL_SD_25GB_062009>

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Well, she said not STARTING the band after 18 months. I don't know whether it's accurate, but it's the belief of the only doctor that I have a chance of getting a prescription from. I did notice that if you look at the brochure that CT has for the doc band, they only mention up to 18 months, but their website says 24 months. So, it's possible that they do some "off label" treatment. I know that 's reflux medication, Prevacid, was given to her off label because she failed to respond to the only reflux medication FDA-approved for babies under a year (Zantac), but that was only after she started refusing to eat and losing weight. I also know of several other babies given this, so it's a common practice. So, doctors do it all the time as well because they know something works. Maybe CT has enough experience to know that their band works up to 24 months and so they do it anyway and the FDA just hasn't caught up with them yet. I don't have a problem with that, but I wish that my doctor would be okay with it as well. Maybe I'll ask the people at CT this question when I go on Monday.

My regular pediatrician tends to leave these kinds of decisions up to the specialists. In other words, I won't be able to count on getting a prescription from her if I can't from the cranial doc.

My other obstacle is that I haven't mentioned what I'm doing to 's other mom (my S/O). She tends to think that I'm a bit obsessed about the issue anyway. She agreed to do the first band pretty much because I wanted to. She would have been okay to let her head grow as it was. She was not against the band and assisted in every way, even taking to her CST appointments because her work schedule is more flexible than mine during the school year. I believe that she thinks that looks fine, espcially since graduating. I was looking at some of the pictures on the older plagio board and her comment was that most of them looked "normal enough." Because it's summer and I work for a school district (as a 12 month employee, but with lots of vacation days), I told her that I'm staying home with that day to do a mommy and me make up class that I missed when we were out of town. Now, I may tell her what I'm doing this weekend because she'll need to know if we decide to band and go forward with the CST, but I've already decided that I'm not going to let her talk me out of treatment. And, I've wanted this time to investigate the treatments without her trying to talk me out of it. I think part of her hesitation is that she is the one that drops the kids off at daycare every day, and they questioned our decision to band. Most of them came around after I did a little bit of explaining the possible troubles with not banding and they saw that did not mind it at all. But, I think that they'll think we're crazy if we put her in another band.

So, I've decided to do something rather than nothing. Dr. Travato seems to think that CT will agree to band . I was worried about that, but it sounds like it's something that she's encountered in the past. So, I'll find out on Monday for sure. Luckily Dr. Travoto emailed me back the same day that I emailed her. So, I'll let her know Monday night and find out where I stand. And, she agreed that additional CST would be beneficial, so we'll start that back up. At a minimum, we'll go back to more CST. If I can find an activator doc to treat as well and the prices seem reasonable, we'll try that as well. Hey, I may end up doing all three and then my S/O will really think I'm obsessed. I just don't want any more regrets. I have enough from not acting soon enough in the first place.

physical therapy? > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi, Does anyone have experience with physical therapy and/or massage as treatment for plagio? I am considering that as an alternate to a helmet and am trying to gather as much info. as possible right now. Thanks! > > >> >>

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http://www.cranialtech.com/FDA_approval.html

Okay - above is a link to what looks like a legal document regarding FDA approval of the DOC band and it specifically says to 18 months. Can anybody find anything that contradicts this?

physical therapy? > > > > > > > > > > > > > > > > > > Hi, Does anyone have experience with physical therapy and/or massage as treatment for plagio? I am considering that as an alternate to a helmet and am trying to gather as much info. as possible right now. Thanks! > >>

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  • 1 year later...
Guest guest

Occupational Therapy would address these issues. Try to find one that specializes in Pediatrics but more importantly - Autism Spectrum Disorders. Our Children's Hospital in San Diego had great O. T. Dept. Do you have a children's hospital near you? There are also other organizations that may offer O.T. services. It's taken me 2 years, researching, asking, hoping etc. to find an organization that offered a social skills group for 6 yr olds- one that is taught by therapists - and we just found one. From there they hooked us up with other services like O.T. If you try one and it's not a good fit..... Keep searching! : )

( ) Physical Therapy?

I am concerned about my 9 year old sons physical abilities. He has never been able to do a somersault......he is way to stiff. He cannot move on the monkey bars and hanging there is a struggle. He got on top of them the other day and could not get down.......I had to help him down. I worry this will happen at school and he will get hurt trying to get down. He does ride a bike, but you would think it is torture. I tried to get him to go around the block and he whined the entire time! About half way around he got off saying he couldn't got any further as the bike hurt his butt!He constantly complains about pain. Recently it has been his legs. He claims they hurt. Quite often it is when he does not want to do something, so I do wonder if this is just a game he is playing. However, there are times when he complains and I don't see a motive.He has always been very cautious.....never jumped around on things. He has always tired easily and has always ran funny. When I watched him at his schools carnival, the little kids were running circles around him. He is very slow and struggles to do everything. They had a big blow up slide and he could not even get up without help. I did not see anyone else have trouble and many of the kids were 4-5!! When he does participate in something (like in gym class), he tends to fall or hurt himself. If a ball gets thrown at him it will almost for sure bend his wrist or finger!Do others have these issues? Should I have him in therapy? What kind?

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My 10 yr old daughter has similar issues. She has not mastered the monkey bars, riding a bike or many gross motor skills other 10 yr olds can do. She tires very easily which makes it hard to do family activities. When we do anything physical she complains about leg pain when she is tired and many times the next day. We go through a lot of Motrin for leg pains and headaches. We have done OT, but never PT. My daughter is considered to have "low tone" so I don't expect any of those issues to completely resolve. We focus on activities that she enjoys and complains the least. Hope this information helps.

Best Wishes!

From: cmt263 <gina9431@...>Subject: ( ) Physical Therapy? Date: Tuesday, March 22, 2011, 10:28 PM

I am concerned about my 9 year old sons physical abilities. He has never been able to do a somersault......he is way to stiff. He cannot move on the monkey bars and hanging there is a struggle. He got on top of them the other day and could not get down.......I had to help him down. I worry this will happen at school and he will get hurt trying to get down. He does ride a bike, but you would think it is torture. I tried to get him to go around the block and he whined the entire time! About half way around he got off saying he couldn't got any further as the bike hurt his butt!He constantly complains about pain. Recently it has been his legs. He claims they hurt. Quite often it is when he does not want to do something, so I do wonder if this is just a game he is playing. However, there are times when he complains and I don't see a motive.He has always been very cautious.....never jumped around on things. He has always tired easily and

has always ran funny. When I watched him at his schools carnival, the little kids were running circles around him. He is very slow and struggles to do everything. They had a big blow up slide and he could not even get up without help. I did not see anyone else have trouble and many of the kids were 4-5!! When he does participate in something (like in gym class), he tends to fall or hurt himself. If a ball gets thrown at him it will almost for sure bend his wrist or finger!Do others have these issues? Should I have him in therapy? What kind?

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You should get a good OT and PT eval to see where he is having problems.

Roxanna

May those who love us, love us

And those who don't love us,

May God turn their hearts

And if he can't turn their hearts,

May he turn their ankles

So we will know them by their limping!

( ) Physical Therapy?

I am concerned about my 9 year old sons physical abilities. He has never been able to do a somersault......he is way to stiff. He cannot move on the monkey bars and hanging there is a struggle. He got on top of them the other day and could not get down.......I had to help him down. I worry this will happen at school and he will get hurt trying to get down. He does ride a bike, but you would think it is torture. I tried to get him to go around the block and he whined the entire time! About half way around he got off saying he couldn't got any further as the bike hurt his butt!

He constantly complains about pain. Recently it has been his legs. He claims they hurt. Quite often it is when he does not want to do something, so I do wonder if this is just a game he is playing. However, there are times when he complains and I don't see a motive.

He has always been very cautious.....never jumped around on things. He has always tired easily and has always ran funny. When I watched him at his schools carnival, the little kids were running circles around him. He is very slow and struggles to do everything. They had a big blow up slide and he could not even get up without help. I did not see anyone else have trouble and many of the kids were 4-5!! When he does participate in something (like in gym class), he tends to fall or hurt himself. If a ball gets thrown at him it will almost for sure bend his wrist or finger!

Do others have these issues? Should I have him in therapy? What kind?

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Keep trying to make it fun for him to exercise and do stop if

it is too much. Swimming in the summer is a very good exercise

too. Any exercise bi-lateral will help with coordination, like

the bike riding. He may truely fatigue quicker. I have seen

in my daughter a big improvement at the age of 12-13 where she

can sustain longer bike rides. And in the summer swim more.

My daughter has had OT and PT (up to the age of 7) and it helped

but our OT made the point she only sees her once a week, we

have to work with our daughter every day.

Little by little I think you will see improvement if you

work on it little at a time, and not so much to cause

a meltdown.

Pam

>

> I am concerned about my 9 year old sons physical abilities. He has never been

able to do a somersault......he is way to stiff. He cannot move on the monkey

bars and hanging there is a struggle. He got on top of them the other day and

could not get down.......I had to help him down. I worry this will happen at

school and he will get hurt trying to get down. He does ride a bike, but you

would think it is torture. I tried to get him to go around the block and he

whined the entire time! About half way around he got off saying he couldn't got

any further as the bike hurt his butt!

>

> He constantly complains about pain. Recently it has been his legs. He claims

they hurt. Quite often it is when he does not want to do something, so I do

wonder if this is just a game he is playing. However, there are times when he

complains and I don't see a motive.

>

> He has always been very cautious.....never jumped around on things. He has

always tired easily and has always ran funny. When I watched him at his schools

carnival, the little kids were running circles around him. He is very slow and

struggles to do everything. They had a big blow up slide and he could not even

get up without help. I did not see anyone else have trouble and many of the

kids were 4-5!! When he does participate in something (like in gym class), he

tends to fall or hurt himself. If a ball gets thrown at him it will almost for

sure bend his wrist or finger!

>

> Do others have these issues? Should I have him in therapy? What kind?

>

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