Suggestions please!

[Guest guest]

Hello! I am new to the group and the mommy of recently diagnosed

plagio baby , Tiernan. He is three months old. He has approx. 12 mm

difference in his measurements. I was told that I have about a month

before they consider putting him in a helmet.... I would like to avoid

that if at all possible. His plagio is caused by torticollis, so we

are very busy doing his physical therapy stretches and I even set up

an appointment for him to see a chiropractor that focuses on pressure

points instead of popping. Any other suggestions on what I can do?

Poor baby has been through quite a bit in his little life already-

I'll really like to try and spare him this one. I'd appreciate your

help!

[Guest guest]

Hello. Your Son is still very young and should still be able to

benefit from some agressive repositioning. You'll want to keep him

off the flat area(s) 24 hours a day. This can be very tough,

especially for a baby with tort, but it is possible to see

improvement. Hopefully some of the parents of Repositioned babies

will chime in and give you some advice on this. We tried to

reposition our Daughter, , but with her tort (along with being

very active) we didn't see much improvement and she was banded at 7

mo. My best advice would be to work on keeping him off the flat

area and on the opposite side of his head as much as possible and

make the decision (whether or not to band) no later than 6 mo. And

keep working on the stretches.

Good luck and keep us updated.

Jen

(24.5 mo), tort resolved, Hanger Band Grad

(4.5 years)

>

> Hello! I am new to the group and the mommy of recently diagnosed

> plagio baby , Tiernan. He is three months old. He has approx. 12

mm

> difference in his measurements. I was told that I have about a

month

> before they consider putting him in a helmet.... I would like to

avoid

> that if at all possible. His plagio is caused by torticollis, so

we

> are very busy doing his physical therapy stretches and I even set

up

> an appointment for him to see a chiropractor that focuses on

pressure

> points instead of popping. Any other suggestions on what I can

do?

> Poor baby has been through quite a bit in his little life already-

> I'll really like to try and spare him this one. I'd appreciate

your

> help!

>

[Guest guest]

I wish I had some suggestions for you, I'm not familiar with any of

those conditions, all I can do is offer {{{{{ Hugs }}}}} to you!

Have you tried finding a support group for CMI?

Natasha

>

> Kaitlyn's Neurologist would like to proceed with a spinal tap to

> determine why her optic nerves are elevated. The MRI from

September

> 13th didn't show any findings consistent with elevated optic

nerves

> but did show that the sulci (furrows or grooves on the surface of

> the brain) are more prominent in the right cerebral hemisphere

than

> the left and moderate posterior (situated at or toward the hind

part

> of the body) cervical (relating to the neck) adenopathy

(enlargement

> of a lymph node). It also showed findings we were already aware

of -

> persistent abnormal posterior periventricular white matter flair

> (characterized by the death of the white matter of the brain due

to

> softening of the brain tissue, which in Kaitlyn's case was caused

by

> asphyxiation during the birthing process) and Chiari I anatomy

(CMI)

> without syrinx (characterized by herniation of the cerebellum

> through the large opening in the base of the skull into the spinal

> canal). The concern I have with this is it is " risky " for CMI

> patients to undergo a spinal tap since it can cause a downward

> suction which may cause further herniation of the cerebellar

tonsils

> and could lead to additional pressure on the spine and ultimately

> paralysis. YIKES, how do I trust ANY Dr. to do this

> procedure?!?!?! Are there any alternatives to spinal taps??? No

> one has interpreted these results to me, the only information I

have

> received so far is that there is some extra cerebral spinal fluid

on

> the left side of her brain and the left side is smaller

> and " smoother " than the right. I would sure like to know what

that

> means, the only thing I can do is search the internet and assume.

> So far the information I have gotten off of the internet include;

>

> " Asymmetry of cerebral sulci may indicate an acute infarct

(stroke)

> on the side where the sulci are smaller. "

>

> and

>

> Moderate Posterior cervical adenopathy can indicate viral

> infections, bacterial infections, or even malignancies.

>

> So, needless to say I really don't want to assume. I would really

> like to get a second opinion but she is on Colorado State Medicaid

> and our options are limited. Is there anyone out there with a

child

> with PVL, CP, or CMI that might have some insight regarding

> Neurological issues???

>

> Thanks,

> Naomi

>