Re: New here and at wit's end

[Guest guest]

Sheila,

Wow - I can certainly understand why you are at your wits end. In regards to

the wait and see attitude you have gotten I personally would not tolerate it.

I would simply state that you do not wish to wait and see anymore and you

want a referral to a specialist. Time is of the essence just like you said. 6

months is a good time to start, but much later then that and the correction

starts to come much slower and often times is not as complete. The PT needs

to start immediately as well. You can try to cut back on the PT appointments

if you feel like you could do the stretches and holds yourself. Maybe just a

few appointments at first to learn what to do and then maybe every two weeks

or once a month for an eval? I don't know too much about tort and treatment

of tort since did not have tort. I'm sure (our resident tort

guru) can help more with that.

As far as the insurance issues I can really feel for you. If you can COBRA

then that might be a good idea - still - I realize how expensive COBRAing can

be. You might first check to see if the insurance could cover a band at all.

Some won't and some will - others make you go through a long drawn out

appeals process. Have you thought to check out a local Shriners organization?

They are very good at helping kids who need medical treatment.

I think you have it exactly right in your mind. The waiting is no good -

action needs to be taken since Amaya is at a good age right now. Best of

wishes to you - I hope we can be of some help to you in this situation.

Please keeps us posted!

Marci (Mom to )

Oklahoma

[Guest guest]

Sheila,

Your story with Amaya sounds so very similar to my - including I think you mentioned a hematoma or blood mass (lump?). My son was dx with tort at 2 months and we were off to the neuro and MRI. I had a hard time finding a pt- but you can find one without insurance, if Amaya qualifies (some states its a 25% delay, I've heard others mention 33%!), tort as a condition automatically qualifies her but she must have a delay to eligible for free pt (the one time we wish for delays!). I don't have the link for Early Intervention, I'm sure one of our great members can provide that or do a search in your state for it-start the process now because it could be a month before you get in. We also massaged the lump daily, try light massage everywhere as well, but the lump needs to dissolve and usually does, was this due to trauma? My son's lump was trauma induced- was due to a tear in the muscle from delivery that created a huge blood mass. I will also attach a link to some stretching exercises and a great hold- you will ultimately be your daughter's best pt anyway, so it would be a good idea to start daily with these (as long as it has been deemed muscular tort). Always correct the tilted posture to midline and your doing a great job with putting toys, tv, etc. towards her non-tort side. As for the plagio, my doctor also brushed this off and thought I was overreacting. I educated myself and even after the 4 month check up when we discussed it and she talked me out of it- I called her office the next day and said, that's it, this is what I want- a referral, and she did it without question. Start telling your Doc what you want, and be firm about it- if that is the route you want to go- start now- get your Doc to write the referral or switch to one that is more band friendly (I think you might find some in the database, or chat with someone that might be from your area- or even call a Cranial Tech or STARband maker and see what Doctors they deal with from your locale). Good luck and if I can help in anyway, please email me anytime. I hope this link helps!

Stretches/ Holds

' Mom

[Guest guest]

In a message dated 7/17/2002 5:10:15 PM Eastern Daylight Time, marcisch@... writes:

You can try to cut back on the PT appointments

if you feel like you could do the stretches and holds yourself. Maybe just a

few appointments at first to learn what to do and then maybe every two weeks

or once a month for an eval?

Marci,

That is an excellent idea!!!! If they can swing a few appts. to get the jist of what's happening- that would really essentially be all you need to do it yourself. We had in pt 2x a week for 1/2 hour sessions, and although i am grateful for that time and for the craniosacral work, etc., we as parents were his biggest pt's and did most of the deep stretches. If insurance not paying is a factor, that is an awesome idea to get started!

' Mom