Update: and Rhiannon

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Hello to all (especially those that responded to my last posting):

Well, a few days have past, and after spending some time in fear and

despair (fear of what to do next and despair that I am not getting

the help my baby needs - and that I paid for), of feeling depressed

and having pounding headaches which required strong medication to

release, I have some great news.

Because the helmet did not fit well, my daughter was developing a

large " bump " over her right ear. This is the side of the tort and

also the side of the seam of the helmet and the velcro clasp to keep

it on her head. Rhia had repeatedly cried and rubbed the velcro

strap, and rub the bump when the helmet was off. (In my non-medical,

non-orthotist view, the clasp should have been on the other side, and

we would have gotten the correct pressure and this would have been

avoided. Purely a physics point of view. Buy hey, what do I know...)

I brought Rhia to her Cranial-Sacral therapy, and while she was being

treated the lump MOVED FORWARD, and lessened. (This, of course being

her temporal bone and attached to her ear had been trying to move

forward as her head grew but in my guesstimate the helmet prevented

it. Probably why the orthotist had " never seen the ears come into

alignment before " . ) Her head has continued to improve since Tuesday,

and while the plagio is still there, the lump has noticeably

improved! Also, my daughter now sleeps through the entire night,

rather than waking up every 2 hours crying because of the helmet and

me having to take it off and rub the sore spots).

After the Cranial-Sacral therapy, I brought Rhia to her Chinese

massage (a gentleman who has been working with kids for over 30

years) and he showed me specific massages for her tight muscles,

including the muscles of her head, neck and face - the ones that are

tight and are pulling her face into misalignment. As he worked on

her, her tight cheek puffed out and her eyebrow began to be more in a

curve, instead of the straight, pulled line that it had always been.

It is his professional opinion that if we continue the massage and

help those muscles release, this will allow the face to come into

alignment, as well as the ears, etc. He also told me how his mother

and grandmother had told him that his head was very misshapen as a

baby, and how is grandmother held his head in her hands for hours

each day as he slept to shape it. (She did not apply any pressure,

just let the head rest in her hands). He has a nice round head! He

showed me how to do this as well.

I am also continuing with my cranial osteopath. He is my very

informed source of information on cranial bones (and by the way

everything that he says about skulls and how they move, so says the

CT rep in Wisconsin, so these two are on the same page.)

I have contacted the PT and have discontinued this therapy for now.

I just can't bear to go back to the building where we were treated so

terribly. I really, really liked my PT, and she was wonderful to

talk to, but I just cannot go back.

As I am continuing with my other " alternative " therapies and am aware

of postures to watch for (I have KKR's book on Tort), I feel that

we'll be just fine. We will most likely go to CT for a second

opinion, and perhaps a helmet, but I am hoping that we won't even

have to do that.

Since I made those decisions I have felt very strong and clear, and

feel that this long and horrible journey to find the correct

treatments for my daughter have reinforced my belief that we need to

follow our gut instincts. It has been a bumpy road starting with my

old pediatrician who wouldn't even look at her neck and told me there

was nothing wrong, the first PT's that made me cry every week, not to

mention how I was completely freaked out and obssessed about knowing

everything I can about tort/plagio as I then lost faith that anyone

would help me at all - to the wonderful realization that there are

caring, compassionate practioners out there who are more than willing

to help and give great advise and do not mind questions or educating

their patient/patient's caregiver on how to care for this issue. I

will never again doubt myself or my gut, and if I find myself in a

situation where my questions are not answered, or I am given a " non-

answer " ,or worse, the wrong answer, I will run - not walk, to

another office. I encourage you all to do the same. I know some of

you had already been there and learned that lesson...

Thanks to all of you who gave me words of encouragement and support,

and after a much-needed short sabbatical which I will use to heal and

to play with my gorgeous daughter, I will let you all know the

outcome.

Good luck to all of you and may your paths be less emotionally,

spiritually, physically and mentally draining than mine has been the

last several weeks!

, Rhiannon's mom

> Oh !!!

> This is SO disappointing to hear!!! You have been treated horribly!

> If you decide to ditch the CranioCap and move onto a DOC Band, I

would highly suggest talking to your insurance company about getting

the CranioCap people to reimburse whatever was paid out to them. You

should NOT have to pay for a service that you are A) unhappy with,

and have been treated so poorly. You may not have paid the lump

sum up front, but you have certainly paid more than that in monthly

premiums to your insurance, not to mention the emotional stress!

Your 4 MONTH old daughter should NOT have to get the bum-wrap!

>

> Please let us know what you decide. I'm sorry you had such a

crappy day! (

> kendra

> Update: Dr. Wood and the CranioCap

>

>

> Hello to all:

>

> Well, I just got off the phone with Dr. Wood. I told him that I

was

> concerned about Rhiannon's head as she now has a verticle " dent "

> where the seams of the helmet come on her head. The response?

Well,

> that really wasn't his forte, and that I would have to take that

up

> with the orthotist. I explained that I had been having

difficulties

> communicating from the start with the orthotist that I have. I

was

> told that she is the best and, essentially, if I didn't like how

the

> helmet fit I could always stop using it. Just like that.

>

> I cannot tell you all how p.o'd. I am. It seems that every time

I

> have been in a situation that has required an MD or other

> health " professional " I get the same result. If the problem

isn't

> convenient, then it's my fault, (or in this case my 4 month old

> daughter's.).

>

> So, bottom line is they will NOT make a new cap (after all, out

of

> 400 patients, they have only had trouble with 3 or 4 of them, yet

if

> you add it up my baby is a 1-30,000 baby, so it tells me that

those

> that really need the help are denied.) Yet, I'm sure they will

take

> their entire $2,300 from our insurance, which we pay for with our

> monthly premiums.

>

> I called the PT and told her that we would be discontinuing

> treatment. I will just continue on with the folks with whom I am

> getting results. I don't have to go to PT 1x per week to be told

> she's fine. I can see that on my own.

>

> I have spoken with someone in Madison, WI with the DOC band, and

they

> are very supportive. I will see 2 people there, and they will

> access Rhia, and if need be have the neurosurgeon give her a

script

> for the DOC band.

>

> I am feeling very betrayed, let down, and ripped-off right now.

We

> will be seeing another orthotist tomorrow, but I already know the

> outcome based on the past. He or she will " fall into line " and

say

> the same things. In the meantime, a baby is not getting the

> treatment that her mommy and daddy have ALREADY PAID FOR. What a

> tragedy.

>

> Well, I'd better go.

>

> I hope you all had better days than I did.

>

> Kind regards,

> , Rhiannon's mom

>

>

>

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