Re: Referral to specialist is over 4 weeks away!

[Guest guest]

A 4 week wait isn't too bad, lots getting into the specialists have a

long wait. And, being on the cancellation list is at least something.

Don't stress about it too much... he's still young enough to get

great correction.

The issue with my kiddo was he was very severe plagio - they never

did any CT on him (which now I am saying is probably a must). They

banded him in Dec-April and he DID get correction. However, he wasn't

round or close to post helmet and I kept telling the docs this.. they

kept saying the familiar 'will round out on his own' crap. However,

they didnt know he was fusing already. Jax is not the norm... most

get awesome correction with both repo'ing and helmets. Just try and

keep him off his noggins flat spot til then... rotate that head.

I know it's easy to say not to worry.. but know you're headed in the

right direction. Correction.

Take care,

Kim

>

> I feel so sick about everything! I just got the referral for my

little

> guy and the F/C Specialists dont have an appointment until

> January 7! Thats 4 weeks away and will be 7 months old,

I'm on

> the list for cancellations. I can go pick him up and have him in

their

> office in one hour and 15 mins if they call.

>

> I just cried after getting off the phone with the nurse. I feel so

much

> pressure to do something sooner, and I'm so scared after reading

about

> Jax needing surgery.

>

> We're going to keep working hard on keeping him off his noggin

until

> then. I think I will look into these pillows and products just

> mentioned. I dont think I'm looking for an answer from anyone, I

just

> needed to vent so I can stop crying and get back to work here.

>

> :-( Adriene

> (oh my noggin has a flat spot) and (roundhead)

6/7/04

[Guest guest]

We had to wait forever as well, and like you I was concerned about

the time passing. In fact, we had to wait for 2 months for our

doctor to refer us to a specialist, and then had to wait for another

7 weeks to see the specialist. However, in the meantime I learned

about a walk-in cranio facial clinic that the head of pediatric

neurosurgery at the local children's hospital volunteers his time

at. If by chance you are anywhere near northern VA I'd be happy to

pass on the contact info for the clinic. They meet again next

week. In addition to the neurosurgeon there is also a cranio facial

plastic surgeon that volunteers as well. The night I went to the

clinic there were 4 other plagio babie waiting to be seen. I felt

like I was finally in the right place! The doc loves CT and gave us

a rx for the band with no trouble at all.

Chrissy in VA

, 9 mos, tort & plagio (and FINALLY getting banded next week)

>

> I feel so sick about everything! I just got the referral for my

little

> guy and the F/C Specialists dont have an appointment until

> January 7! Thats 4 weeks away and will be 7 months old,

I'm on

> the list for cancellations. I can go pick him up and have him in

their

> office in one hour and 15 mins if they call.

>

> I just cried after getting off the phone with the nurse. I feel

so much

> pressure to do something sooner, and I'm so scared after reading

about

> Jax needing surgery.

>

> We're going to keep working hard on keeping him off his noggin

until

> then. I think I will look into these pillows and products just

> mentioned. I dont think I'm looking for an answer from anyone, I

just

> needed to vent so I can stop crying and get back to work here.

>

> :-( Adriene

> (oh my noggin has a flat spot) and (roundhead)

6/7/04

[Guest guest]

We had to wait a little over a month to see the specialist too. Our

boy was 5 1/2 months at the time. I was sick too and every day

seemed so long. I still spend too much time thinking about this

whole process but all in all that time went by quickly and we are the

helmet and I feel so good about it. You will too. In the mean time,

naps (supervised) on the tummy and tummy time and using a walker

along with that noggin nest from boppie were what we did in that time

before we got into our helmet. I mean we even had that thing on the

changing table. You are going to do well. Use this time to get

educated about the process and know your stuff when you get there.

Best wishes!

Janna and Kellan

St. Louis, Local Helmet

>

> I feel so sick about everything! I just got the referral for my

little

> guy and the F/C Specialists dont have an appointment until

> January 7! Thats 4 weeks away and will be 7 months old,

I'm on

> the list for cancellations. I can go pick him up and have him in

their

> office in one hour and 15 mins if they call.

>

> I just cried after getting off the phone with the nurse. I feel so

much

> pressure to do something sooner, and I'm so scared after reading

about

> Jax needing surgery.

>

> We're going to keep working hard on keeping him off his noggin

until

> then. I think I will look into these pillows and products just

> mentioned. I dont think I'm looking for an answer from anyone, I

just

> needed to vent so I can stop crying and get back to work here.

>

> :-( Adriene

> (oh my noggin has a flat spot) and (roundhead)

6/7/04

[Guest guest]

Go to the Cranial Technologies web site and get a band friendly

specialist if you know you need one and bitch every day and ask or

demand the Dr call you and tell you 4 weeks is ok ( which it isant)

when you will have to then go to a clinic get casted and wait again.

I used to work for Drs and when you get through to the Dr things in

the office can change. My advide be a pain till they listen.

Lorraine.

>

> I feel so sick about everything! I just got the referral for my

little

> guy and the F/C Specialists dont have an appointment until

> January 7! Thats 4 weeks away and will be 7 months old,

I'm on

> the list for cancellations. I can go pick him up and have him in

their

> office in one hour and 15 mins if they call.

>

> I just cried after getting off the phone with the nurse. I feel so

much

> pressure to do something sooner, and I'm so scared after reading

about

> Jax needing surgery.

>

> We're going to keep working hard on keeping him off his noggin

until

> then. I think I will look into these pillows and products just

> mentioned. I dont think I'm looking for an answer from anyone, I

just

> needed to vent so I can stop crying and get back to work here.

>

> :-( Adriene

> (oh my noggin has a flat spot) and (roundhead)

6/7/04