Re: Dana/Update with specialist.

[Guest guest]

Hi everyone,

Well..we saw the specialist today at Sick Kids. Coincidentally, we

also saw Dr. (same as Darcy What time was your appt

Darcy? Wouldn't that be funny if we passed eachother in the hall.

Our appt. was at 11:00am.

Anyway, the specialist felt that 's plagio was moderate. He

didn't recommend helmet therapy and I got the impression that they

only recommend the helmet if a child has severe head assymetry

and/or facial assymetry. He was confident that 's head would

round out on it's own given that he is so active and his tort has

been dealt with.

My husband feels better about the whole situation. I on the other

hand am still apprehensive. Dr. would like for us to

continue with repositioning and come back in three months. We had

photos taken of 's head at the hospital for comparative

purposes. I am concerned because we have been repositioning him

since he has been 2 1/2 months old with no significant change. What

makes the next 3 months any different? He has been able to sit

unassisted now for a month and a half and I have seen not alot of

change. He is rarely on his back and will usually sleep on his

tummy or side. Also, if we wait another 3 months he will be 10

months old by then!!

I almost feel as though we are part of a study. The dr. basically

said that studies show that babies with mild to moderate plagio do

not see a significant degree of improvement with the helmet compared

to repositioning. The helmet just shows improvement a little faster.

I don't know...maybe I am overreacting. All I know is that my son

has a flat head and it IS noticable. It's not like I WANT to

be placed in a helmet..I just want this whole situation behind us.

What do you guys think?

Dana (mommy to )

Ont.

> Dana doesn't have an appointment with the specialist today?

Hope it went

> well. Thinking of you!

> Beck

[Guest guest]

I totally understand your feelings. Our son (5 1/2 months)

also has mild-moderate plagio. I was told the same thing by the

pediatric neurosurgeon--that he did not recommend helmet therapy and

it should round out on its own. We have been repositioning for

almost 2 months, and have seen some improvement. However, I still

feel that he has noticeable facial assymetry. You don't want to have

to use a helmet, but if you don't, you worry about " what if " it

doesn't round out on its own. I feel like I am the only one who is

worried about this!! Very frustrating. Good luck.

> > Dana doesn't have an appointment with the specialist today?

> Hope it went

> > well. Thinking of you!

> > Beck

[Guest guest]

Dana:

I know exactly what you are feeling. I am in a similar

situation with my daughter, Annika. She is 9 months

old with moderate plagiocephaly. The improvement she

has now is all due to repositioning. However, we have

seen very little improvement over the last month. We

have seen the pediatrician and neurosurgeron, both of

whom think we are crazy to explore the use of a

helmet. They told us that they have seen far worse

cases where there has been improvement without the use

of a helmet. The neurosurgeon even went as far to say

that insurance wouldn't cover it because there were

other people (non plagiocephaly patients) who were in

more need of the care then we were!

After countless nights of concern and discussion, my

husband and I finally decided that we should follow

our instincts. We are currently waiting for the

referral.

I guess what I am trying to say is that ultimately,

the choice is yours. You will know what's best for

. Hang in there and keep us posted on what you

decide to do.

Tami (mom to Annika)

--- newfie19742002 <dsmith001@...> wrote:

> Hi everyone,

> Well..we saw the specialist today at Sick Kids.

> Coincidentally, we

> also saw Dr. (same as Darcy What time

> was your appt

> Darcy? Wouldn't that be funny if we passed

> eachother in the hall.

> Our appt. was at 11:00am.

> Anyway, the specialist felt that 's plagio was

> moderate. He

> didn't recommend helmet therapy and I got the

> impression that they

> only recommend the helmet if a child has severe head

> assymetry

> and/or facial assymetry. He was confident that

> 's head would

> round out on it's own given that he is so active and

> his tort has

> been dealt with.

>

> My husband feels better about the whole situation.

> I on the other

> hand am still apprehensive. Dr. would like

> for us to

> continue with repositioning and come back in three

> months. We had

> photos taken of 's head at the hospital for

> comparative

> purposes. I am concerned because we have been

> repositioning him

> since he has been 2 1/2 months old with no

> significant change. What

> makes the next 3 months any different? He has been

> able to sit

> unassisted now for a month and a half and I have

> seen not alot of

> change. He is rarely on his back and will usually

> sleep on his

> tummy or side. Also, if we wait another 3 months he

> will be 10

> months old by then!!

>

> I almost feel as though we are part of a study. The

> dr. basically

> said that studies show that babies with mild to

> moderate plagio do

> not see a significant degree of improvement with the

> helmet compared

> to repositioning. The helmet just shows improvement

> a little faster.

>

> I don't know...maybe I am overreacting. All I know

> is that my son

> has a flat head and it IS noticable. It's not like

> I WANT to

> be placed in a helmet..I just want this whole

> situation behind us.

>

> What do you guys think?

> Dana (mommy to )

> Ont.

>

> > Dana doesn't have an appointment with the

> specialist today?

> Hope it went

> > well. Thinking of you!

> > Beck

>

>

__________________________________________________

[Guest guest]

Dana-

I certainly know how you feel. I wanted to share my son Dane's

story with you.

We were told similar things (I bet most parents were!). " It'll be

okay. " " Just give it a few more months. " etc. We did see quite a

bit of improvement between 2-3 1/2 months. Then when Dane turned 4

months, the progress stagnated. The doctor then told us that his

head " should " round out. After a couple weeks of contemplating it

and from listening to the stories from this group, we decided to go

with a DOC Band. When you hear words like " should " and " probably, "

you feel like you are gambling with your child's wellbeing. We felt

that it was worth it to pursue the DOC Band because we didn't want

to face (pun intended!)the consequences if it didn't get better on

it's own. Not only did he have a flat spot, his face was pretty

lopsided and his ears were misaligned. I was completely shocked

when Dane's head was measured! It is so off, he may need 2 bands! I

really doubt it would have self corrected to the degree we would

find acceptable. Feel free to check out his pictures.

He has been in the band for 3 weeks and the progress has been

remarkable. I took pictures to share the progress with you, but

they don't do it justice. He is still losing the hair he was born

with, so they look kind of weird! We figured it was well worth the

$3k just to get the results we wanted. I can't tell you how well we

slept after we made the decision.

We'll never know if his plagio would have taken care of itself, and

frankly I'm not worrying about that at all! The band has taken the

what ifs out of the scenario for us. It wasn't worth the gamble for

us.

We didn't " want " a helmet either. I was afraid of how he would

handle it. It hasn't diminished his smile at all!

Maybe you should look into getting him measured. That really

solidified it for us.

It was a very hard thing to decide, especially because you have such

a short window of opportunity. I'm sure you will find comfort in

your decision too - whatever it is!

Dane's mom

Cleveland

> > Dana doesn't have an appointment with the specialist today?

> Hope it went

> > well. Thinking of you!

> > Beck

[Guest guest]

Dana:

I'm so sorry your appt. didn't go as expected. (

I know it's a lot harder in Canada since we have to deal with referrals, line ups, lack of treatment centers, etc, but if you feel help is necessary, then you have to take a stand. You could get back into Sick Kids (call and find out when the next plagio clinic is) and be firm, or maybe if it's do-able for you, you could try Ottawa. I know they make a band there. I'm pretty sure it's a STARband, but that's never been confirmed for me! ;o) If you want more info. on that clinic, let me know and I'll get it out to you.

Otherwise there are DOCband clinics in Calgary & Edmonton. If you're willing to pay to fly and pay for treatment, they really can't deny you anything in AB.

Let me know if I can be of more help!

Kendra

Re: Dana/Update with specialist.

Hi everyone,Well..we saw the specialist today at Sick Kids. Coincidentally, we also saw Dr. (same as Darcy What time was your appt Darcy? Wouldn't that be funny if we passed eachother in the hall. Our appt. was at 11:00am. Anyway, the specialist felt that 's plagio was moderate. He didn't recommend helmet therapy and I got the impression that they only recommend the helmet if a child has severe head assymetry and/or facial assymetry. He was confident that 's head would round out on it's own given that he is so active and his tort has been dealt with.My husband feels better about the whole situation. I on the other hand am still apprehensive. Dr. would like for us to continue with repositioning and come back in three months. We had photos taken of 's head at the hospital for comparative purposes. I am concerned because we have been repositioning him since he has been 2 1/2 months old with no significant change. What makes the next 3 months any different? He has been able to sit unassisted now for a month and a half and I have seen not alot of change. He is rarely on his back and will usually sleep on his tummy or side. Also, if we wait another 3 months he will be 10 months old by then!! I almost feel as though we are part of a study. The dr. basically said that studies show that babies with mild to moderate plagio do not see a significant degree of improvement with the helmet compared to repositioning. The helmet just shows improvement a little faster.I don't know...maybe I am overreacting. All I know is that my son has a flat head and it IS noticable. It's not like I WANT to be placed in a helmet..I just want this whole situation behind us.What do you guys think?Dana (mommy to )Ont.> Dana doesn't have an appointment with the specialist today? Hope it went > well. Thinking of you!> BeckFor more plagio info

[Guest guest]

Hi. Thanks for sharing your story. I also noticed some improvement

with 's head shape, but not within the last last 2 months

I can tell you that if I lived anywhere near a CT clinic, I would

have had him banded a long time ago. The problem here in Ont. is

the Hospital for Sick Kids is IT for plagio kids. The closest DOC

facility is in Calgary (correct me if I'm wrong Kendra). I simply

cannot afford to fly to Calgary to have him fitted for a Doc band.

When this thing initally started, I pushed every health care

professtional I encountered to get an appt. with " the specialist " .

I told myself that I would accept whatever recommendation they

gave. Now that it's here and gone, I'm still not satisfied.

(sigh.) My dilemma is whether to trust the dr, when he says the

helmet probably will not show that much more improvement. The

helmet here is a (passive) locally made helmet.

Thanks for your response. when we figure out what we are going to

do I will let everyone know.

Dana

> > > Dana doesn't have an appointment with the specialist

today?

> > Hope it went

> > > well. Thinking of you!

> > > Beck

[Guest guest]

Thanks Kendra, actually I didn't know they made a band in Ottawa.

If you could find out the clinic information for me that would be

great!

You know the sad part about all of this is I went there today with

my mind made up to get the helmet. Then when they said (1)it wasn't

needed, (2) " if it was my child I wouldn't bother " , (3)there is no

evidence that the helmets actually make a difference in head shape

when compared to natural rounding over time...etc. I just got

sucked in. Basically, they said that the band is great for kids who

have severe plagio and are unable to keep off their flat spot. For

babies that are developing normally, have mild-moderate plagio and

have no facial assymetry, they don't recommend the helmet.

My instinct told me to get the helmet anyway, but then I was like

who am I to question this man. They reassured me that they have

tracked babies over time and the heads do eventually round out

(although not perfectly).

I also asked that be measured and they said they don't do

measurements..just take pictures to compare over time. I told my

husband that I would have felt better if he objectively analyzed

's head shape instead of a quick glance. All I kept thinking

was that this man saw 7 babies today with heads shapes far worse

than 's and then when he saw ..he didn't think it was all

that bad.

Anyway, I am stressed. On top of it, I have 2 sets of grandparents

who have no idea what plagio is and continue to make little comments

suggesting that it is our fault 's head is flat.

I try to remind myself every day that things could be much more

serious and that we are lucky to have a happy, healthy child.

Sorry so down tonight. I think I will go to bed and hope thinks

look better tomorrow.

Dana (mommy to )

Ont.

> > Dana doesn't have an appointment with the specialist

today?

> Hope it went

> > well. Thinking of you!

> > Beck

>

>

>

[Guest guest]

Dana:

Hope you have a good sleep! Things will look better in the morning (I hope!).

The number for the clinic in Ottawa is 1-613-737-7350 extension 5314. The contact person is Englehart, and the doctor is Dr. Venturyra - at least that's who they were when I got this info at least a year ago! ;o)

I hope they will give you some useful information!

Keep me posted!

Kendra

Re: Dana/Update with specialist.

Thanks Kendra, actually I didn't know they made a band in Ottawa. If you could find out the clinic information for me that would be great! You know the sad part about all of this is I went there today with my mind made up to get the helmet. Then when they said (1)it wasn't needed, (2)"if it was my child I wouldn't bother", (3)there is no evidence that the helmets actually make a difference in head shape when compared to natural rounding over time...etc. I just got sucked in. Basically, they said that the band is great for kids who have severe plagio and are unable to keep off their flat spot. For babies that are developing normally, have mild-moderate plagio and have no facial assymetry, they don't recommend the helmet.My instinct told me to get the helmet anyway, but then I was like who am I to question this man. They reassured me that they have tracked babies over time and the heads do eventually round out (although not perfectly). I also asked that be measured and they said they don't do measurements..just take pictures to compare over time. I told my husband that I would have felt better if he objectively analyzed 's head shape instead of a quick glance. All I kept thinking was that this man saw 7 babies today with heads shapes far worse than 's and then when he saw ..he didn't think it was all that bad. Anyway, I am stressed. On top of it, I have 2 sets of grandparents who have no idea what plagio is and continue to make little comments suggesting that it is our fault 's head is flat.I try to remind myself every day that things could be much more serious and that we are lucky to have a happy, healthy child.Sorry so down tonight. I think I will go to bed and hope thinks look better tomorrow.Dana (mommy to )Ont. > > Dana doesn't have an appointment with the specialist today? > Hope it went > > well. Thinking of you!> > Beck> > >

[Guest guest]

Dana,

I really feel for you right now because you are stuck in the same spot I was when my was 4 months old. My ped dismissed my concerns totally, and said, she's seen worse, it will pop out, its mild. I asked her about his ear misalignment, she said it was an optical illusion. I have to really credit this board and the experience and wisdom of others that were faced with the same, "it will round out probably" theory, in helping us to push for the DOC band. had the smaller eye, one ped said, "So do I! Nobody's perfect!" They all sucked me in at the 4 mnth well baby check-up, not knowing that I had gotten a free eval from CT and had my mind made up too. They convinced me otherwise- and I left. I mulled it over, and have to agree with everything Dana said, I could not live with what if's- and what might happen, especially when most parents here were telling me, I wish I could turn back the clock and start earlier, and listen to my own instincts. I called the Doc the next day and demanded a referall over the phone- no problem, she gave me a referral without even talking to me about it. I can tell you that was also considered mild to moderate to my Docs, but moderate in who's standards? The facial asymmetry and ear misalignment was also a major deciding factor for us. Now that all is said and done, the Doc tells me it was the right decision, that he looks great and his head is beautifully round. Do I want to just smack her? No, because we made the decision for my son, and all turned out for the best. Had I listened to her and still been in the same boat, yeah, I'd probably want to give her a good WWF welcome . Anyway, I am sharing this so that you can know that many Docs have told parents this, so really go with your gut instinct here. It also concerns me that they think there is no significant improvement with mild to moderate- that is totally false, especially when you start under a year. You know your child best, and you know what's happening, so in the end make sure that you have satisified yourselves as Mom and Dad to doing what you think is best for your child. I have a friend that her son only had brachy, the total flat back, and nothing rounded out, although luckily there is no facial asymmetry. However, she believed her Docs and know thinks they should have done something. Make sure that whatever decision you make, you can live with, be it band or no band.

Take Care and wishing you lots of luck in your decision making, this is the hardest part in my opinion when you are getting differing points of view from everyone! But as Dana said she slept well that night, once I made the decision to get it, I was totally at peace and knew that things would start to take shape- and thank God they did

' Mom (tort resolved, DOC grad)

[Guest guest]

Hi Dana:

I am sorry you're having such of a difficult time with this! Most of

us in the group have heard the same story from your specialist as you

have. We were urged by our Drs. to get Abby a band, becuz of her

severity so the decision was quite easy for us.

Whether or not to get your son a helmet, is ultimately your decision

to make. It is a very difficult decision to come to. If you haven't

seen much improvement thus far with repositioning , then odds

are, you won't see much more in the next 3 mos..

I don't know what to suggest to you, because i don't want to tell you

what to do with your son :-). Be assured though, that if you do

decide to put in a helmet, it won't " hurt " him one bit. The

hardest part in the process is the casting, only because the child is

usually scared & does not like being held down.

Please let us know whatever you decide. I'm sure you'll make the

best decision for & your family. Good luck

Debbie Abby's mom DOCgrad

MI

> > Dana doesn't have an appointment with the specialist today?

> Hope it went

> > well. Thinking of you!

> > Beck

[Guest guest]

Anyway, I am stressed. On top of it, I have 2 sets of grandparents

who have no idea what plagio is and continue to make little comments

suggesting that it is our fault 's head is flat

Dana:

You know that it is not your fault! For some unknown reason, some

kids are more succeptible (sp???) to plagio than others. Try not to

let them get to you. You're doing everything you can to get

help & treatment I hope you're feeling a bit better about it all

today after a good night's sleep Cheer up.

Debbie Abby's mom DOCgrad

MI