Re: Hi, new member with questions...

Posted February 18, 2002 · February 18, 2002

Hi Darcy and welcome. I see that Niki gave you a good link that hopefully

will be able to help you locate a doctor. I'm not sure about the lumps you

are talking about, but these things can be so hard to describe! I would agree

about checking our repositioning techniques at www.plagiocephaly.org/support

- there is some good advice there. You could also try purchasing a sleep

repositioner - there are many available and they help to position your baby

on her side when she sleeps. You can also roll towels (this is what my ped

recommended) to help position your baby on her side. I will also agree with

Debbie that as much tummy as she will tolerate would be a great benefit to

her!

Good luck in your search for a doctor. Please keep us posted on your

progress. I'm glad you have joined us!

Marci (mom to )

Oklahoma

Posted February 18, 2002 · February 18, 2002

Hello. I assume forceps were not used when you gave birth given that your baby was premature. My son has brachiocephaly, and when he was born he had a small indent on the side of his head that has the most flatness. I always thought that was from the forceps. He is a toddler now, but when he would lay down, he always had his head looking right. You'd think that he would have plagiocephaly, but he has brachiocephaly. I have no idea how BOTH sides got flat. I think some babies have softer heads than others. Obviously in my son's case. Good Luck! Lori

Posted February 18, 2002 · February 18, 2002

Hi Darcy,

Nice to speak with you - i am currently in the exact

same situation as you right now - my son on is 5

months old with a flat head at the back - perfectly

symmetrical face - i'm afraid i can't help you with a

specialist in Canada but a tip i got to place a

rolled towel under the shoulder of the side you don't

want your child to lie on - if that makes sense - this

then encourages the child to lie on the other side of

the affected side.

Hope you find what you are looking for - try looking

on www.plagiocephaly.org - and look in the left hand

column for reccommend a specailist - maybe something

will come up there - but there are so many wonderful

people on this site - i'm sure someone will come up

with something - as i'm relatively new like you - lots

of luck and let me know how you get on.

Thought are with you

Kindest Regards

Eleanor ( mum to baby on ) UK

--- hallmachine <darcy.hall@...> wrote:

<HR>

<tt>

Hi, my daughter, Madeleine is almost 10 months (she

was born

prematurly so her corrected age is close to 8.5

months). & nbsp; She has had

a smallish indent at the back of her head for several

months now that

we have been hoping would go away. & nbsp; Unfortunately

it is still there

and we have noticed a couple of bumps develop on the

right and left

sides of her forehead. & nbsp; I was supposed to get

X-rays today but they

wouldn't take them at the clinic i went to since she

squirmed too

much.

After spending many hours researching this weekend, i

believe she may

have brachyplagiocephaly (no assymtry of the face but

a flat head at

the back). & nbsp; Its the small bumps that have develop

that have me really

worried right now.

I'm located in Toronto, does anyone here recommend a

doctor at any of

the hospitals (i'm waiting right now for my

paediatrician to call me)?

Also, if your child has brachy what kind of

repositioning techniques

can you do? & nbsp; She sleeps right on the back of her

head and i'm not

sure how to get her head to lie right or

left...? & nbsp; Did your

son/daughter have this small indent as well?

Thanks in advance,

Darcy Hall

Toronto

</tt>

<td align=center><font size= " -1 "

color=#003399>

Posted February 19, 2002 · February 19, 2002

Thanks to everyone for your responses and links... you have been most

helpful...

We spoke to our paediatrician tonight who going to look at Madeleine

tomorrow in regards to the lumps i referred to. She said they might

be swollen glands but i find that kind of unlikely - they would be

awfully swollen then! And on top of her head?

She also has rescheduled x-rays at Toronto Sick Kids (where they can

properly keep her still!) and hopefully that won't reveal a fused

plate. She has had this indent for so long now, unless it has

finally just fused, i would have thought we would have noticed other

symptoms of it much earlier. Has anyone ever heard of persistent

plagio leading to cause the plates to fuse?

I asked her as well about repositioning Madeleine while she slept and

she didn't encourage it. I really want to prop her sideways...

Dana, i was surprised to hear that the Sick Kids clinic had so many

kids waiting, at what point did your paediatrician recommend you

visit the hospital? Had you had xrays done? We are going to insist

tomorrow that we get referred to a specialist there now...

Thats all for now, thanks again,

Darcy (Madeleine's father)

Toronto Canada

Posted February 19, 2002 · February 19, 2002

Darcy:

We spoke to our paediatrician tonight who going to look at Madeleine tomorrow in regards to the lumps i referred to. She said they might be swollen glands but i find that kind of unlikely - they would be awfully swollen then! And on top of her head?It's great that she will see you right away, but to me (and I'm not a doctor!) it doesn't sound like a gland issue. At least she will be able to SEE what you are concerned about. That will help a great deal, I'm sure. Did these lumps show up all of a sudden, or have they been there for a long time?

She also has rescheduled x-rays at Toronto Sick Kids (where they can properly keep her still!) and hopefully that won't reveal a fused plate.

It's great that you have been rescheduled, but you might want to discuss a CT scan with your ped while you're there tomorrow. This is the most accurate way to find out if any sutures are fused. The x-rays often come back as inconclusive, and baby is sent for a CT scan anyway. One trip is always better than 2! ;o) Especially with a baby.

She has had this indent for so long now, unless it has finally just fused, i would have thought we would have noticed other symptoms of it much earlier.

Cranio (and plagio!) can go undiagnosed for a long time. If your doctors are not familiar with either condition, or maybe they are but don't know EXACTLY what to look for, it can certainly be missed - even forever. Even the best expert will have to order a CT scan to know FOR SURE if cranio is an issue.

Has anyone ever heard of persistent plagio leading to cause the plates to fuse?

Cranio doesn't have to be present at birth. It can happen several weeks, or even months after birth.

I asked her as well about repositioning Madeleine while she slept and she didn't encourage it. I really want to prop her sideways...

I wont tell you to go against your doctor's advice, but there are several ways to reposition safely. Check out www.plagiocephaly.org/support/repotech.htm for some tips.

Hope all that helps a little!

Kendra in Canada

Re: Hi, new member with questions...

Thanks to everyone for your responses and links... you have been most helpful...We spoke to our paediatrician tonight who going to look at Madeleine tomorrow in regards to the lumps i referred to. She said they might be swollen glands but i find that kind of unlikely - they would be awfully swollen then! And on top of her head?She also has rescheduled x-rays at Toronto Sick Kids (where they can properly keep her still!) and hopefully that won't reveal a fused plate. She has had this indent for so long now, unless it has finally just fused, i would have thought we would have noticed other symptoms of it much earlier. Has anyone ever heard of persistent plagio leading to cause the plates to fuse?I asked her as well about repositioning Madeleine while she slept and she didn't encourage it. I really want to prop her sideways...Dana, i was surprised to hear that the Sick Kids clinic had so many kids waiting, at what point did your paediatrician recommend you visit the hospital? Had you had xrays done? We are going to insist tomorrow that we get referred to a specialist there now...Thats all for now, thanks again,Darcy (Madeleine's father)Toronto CanadaFor more plagio info

Posted February 19, 2002 · February 19, 2002

Thanks Kendra,

No i'm sure the lumps weren't there a week ago... but how could they

grow that fast then?

CT scans can take several months sometimes to book in Toronto

(apparently) so she wants the x-rays first hoping that they will

conclusive.

I tried some of those repositing techniques tonight, just to see how

they work, but i didn't have much success. Madeleine sleeps right on

the back of her head and i would need to prop her right up on one

side to get her to have her head facing sideways.

Darcy

Posted February 19, 2002 · February 19, 2002

Hi Darcy,

My husband and I first started to notice a slight flattening of our

son's head around 3 weeks of age. I mentioned it to our family dr.

who said not to worry about it. She did not mention repositioning

to us. At 2 months, we noticed the flattening was becoming worse

and our son was unable to turn his head to the left. At this point,

our dr. made a referral to a pediatrician but again did not mention

repositioning. In fact..she admitted that she had never seen a

misshapen head on a child before. It took a month to get in to see

the ped. Fortunately, I took it upon myself to do some research and

suspected that had torticollis and plagio. We started

repositioning at 2 1/2 months and started stretching excercises

ourselves. By the time I had seen the ped. I had already done

research on band therapy and was ready to get started.

Our ped however was more inclined to work on the torticollis first

and see if repositioning worked. (By this point I had not joined

the plagio group and was still believed that dr. knew best). The

ped made a referral to an occupational therapist for 's

torticollis...this took another month. By this time, is now 4

months old and repositioning did not appear to be working. With OT,

's tort. worked itself out but I wasn't seeing a dramatic change

in his head shape. The OT said that she was seeing approx. 1 baby a

week in the Burlington area that has plagio...she has never had

anyone decide on the helmet for their child.

When was 5 months old, I told the ped I wanted a referral to

sick kids. It literally took her a month to actually fax the

referral..I kid you not. I called her office once a week to remind

them he was getting older by the day Finally, the referral was

made and now I am waiting to hear from Sick Kids. will probably

be over 7 months by the time he is assessed by a specialist. If I'm

lucky. He has not had any x rays or testing done to date.

From what I understand with Sick Kids, there are 2 clinics that deal

with plagio. The neurosurgery dept. and the cranial facial dept.

Both are able to cast for the helmet. The specialists in the

cranial facial unit are NOT neurosurgeons however. Apparently, the

two units work closely together. ie. if cranio is suspected, they

would probably refer to neurosurgery. I don't know what the wait

list is like at neurosurgery but the secretary at the cranial facial

unit told me there were 50 kids on the wait list now for her

clinic.

As you can see, I have been nothing but dissapointed with every

medical professional I have come across. I feel like I have been

screaming (and I can scream pretty loud)for someone to take my

concerns seriously and noone is listening.

Sorry for the long note ) It sounds like you have got your

information together for your visit with the ped tomorrow. Perhaps

you will get your concerns looked into faster than me because x rays

have already been scheduled to look into Madeleine's lumps. (fingers

crossed). I think 's case is pretty " run of the mill " which is

why it is taking so long. Good luck and keep us updated on your

progress. If you find any interesting info on sick kids let me

know...

Dana (mom to )

Ont. Canada

> Thanks to everyone for your responses and links... you have been

most

> helpful...

>

> We spoke to our paediatrician tonight who going to look at

Madeleine

> tomorrow in regards to the lumps i referred to. She said they

might

> be swollen glands but i find that kind of unlikely - they would be

> awfully swollen then! And on top of her head?

>

> She also has rescheduled x-rays at Toronto Sick Kids (where they

can

> properly keep her still!) and hopefully that won't reveal a fused

> plate. She has had this indent for so long now, unless it has

> finally just fused, i would have thought we would have noticed

other

> symptoms of it much earlier. Has anyone ever heard of persistent

> plagio leading to cause the plates to fuse?

>

> I asked her as well about repositioning Madeleine while she slept

and

> she didn't encourage it. I really want to prop her sideways...

>

> Dana, i was surprised to hear that the Sick Kids clinic had so

many

> kids waiting, at what point did your paediatrician recommend you

> visit the hospital? Had you had xrays done? We are going to

insist

> tomorrow that we get referred to a specialist there now...

>

> Thats all for now, thanks again,

> Darcy (Madeleine's father)

> Toronto Canada

Posted February 20, 2002 · February 20, 2002

Hi Darcy what a scary time for you-am so happy you have found this board I am sure you will get lots of great responses. I have links for DR's and repositioning that I will include- I hope they will be helpful for you. Please keep us posted onhow y our little one is doing and ask as many questions as you like. I hope these help!

beck Mom to

doc grad

Click here: Find a Preferred Physician: Search by Location

Click here: Repositioning Techniques

Click here: Types of Treatment

Click here: Clinic and Specialist Locations

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