Re: Re: interesting phone call// Beth

January 16, 2008

Hi Beth and

Beth- I'm so glad you are finally getting some info to go on. Please

keep us posted.

Beth and - I'm glad I'm not the only mom that has trouble keeping

my composure. Generally speaking, I'm not a very emotional person, but

twice in the last few months I've started crying while talking to the

nurses/ drs about Chris- alot of it is due to frustration, I think, and

maybe thinking that they are not REALLY listening.

Jinny (11 Pauci??)

On Wed, 16 Jan 2008 05:40:09 -0800 (PST) Beth Yohnk

<yohnkmom@...> writes:

> Hi :

> I have been following Caleb's story very closely even though I don't

> think I've personally responded. I totally understand what you are

> going through and all the emotions you are feeling are totally

> normal. It's very frustrating to say the least. We have been

> trying to find a diagnosis for Hannah for nearly 2 years. She has

> had her share of abnormal labs, but every time they are explained

> away and essentially ignored. They tell me she looks good on exam,

> but she's hypermobile so she won't lose the range of motion like

> most kids would. She rarely has visible swelling and even though we

> had morning swelling documented by an OT, they ignored that too.

> Hannah also has other underlying health issues (asthma; migraines;

> and immune deficiency; hypermobility) that I feel are impeding our

> diagnosis.

>

> So, I just wanted to tell you that I understand, but more

> importantly don't give up on Caleb no matter what. Anyone on this

> list who has gotten to know me in the last couple of years, will

> tell you I'm mom who won't give up no matter what. I know my

> daughter and I know there is doctor out there who will figure this

> out!

>

> Beth & Hannah, 11, unspecified arthritis; asthma; gerd; migraines

>

> Sending prayers & happy thoughts,

> Beth :-)

>

> Re: interesting phone call

>

> i understand completely about trying to keep composure. we see a dr

>

> a childrens in cincinnati, caleb has been sick nearly 3 months we

> have no answers. now they are back to thinking its canecer again.

> after we got a diagnosis lasy week of systemic that they are not

> sure of now. caleb has to see hemog again, have another bone scan

> and another bone marrow biopsy. i totally feel the same way.

>

> >

> > I received a call this evening from the head of our local EDS

> foundation. She is the friend of a friend. I shared with her our

> experiences with the rheumtology and pain clinic departments at our

>

> Children's hospital. She shared with me that this is the fourth

> similar experience she has heard in the last three months. She is

> also extremely involved in our local AF chapter and founded our

> local EDS foundation.

> >

> > She listened sympathetically to my story about Hannah (I was proud

>

> of myself for not losing it as I often do when I talk about Hannah

> like this). She is going to personally make some calls on our

> behalf and see if she can get me some names of doctors who would be

>

> willing to take on Hannah's challenging case (she said she contacts

>

> in Madison, Cincinnati & St. Louis). She agreed that Hannah is

> definitely not textbook. In fact she said Hannah sounds very

> similar to her own situation. She was diagnosed with EDS at the age

>

> of 29. It angered her when I told her that the pain clinic tried to

>

> tell us it " was in Hannah's head " and that I did not appreciated the

>

> doctor's egos in those departments.

> >

> > So, I will keep you all posted. On a side note, we are California

>

> bound, we bought our airline tickets on Sunday!

> >

> > Beth & Hannah, 11, unspecified arthritis; hypermobility; asthma;

> gerd; migraines

> >

> > Sending prayers & happy thoughts,

> > Beth :-)

> >

January 16, 2008

I am to the point of just going into the rheumys office standing on a chair and

yelling tell me some answers. I am just getting so tired of we think its this

we have ruled that out and then now back to ummm those terrible things we ruled

out scratch that, those ugly things may still be your diagnosis we just put your

kid through 50,000 of medical testing to say umm no not that and then turn

around and say umm we are going to have to spend all of that time and money

again we think we tested too soon.....now how in the world can they just stand

there looking at you and say that this whatever it is could still be a cancer

and now we are 13 weeks into it....hello i would like to know what it is and

what you are going to do about it....ok i was off on my soap box venting again.

I am just getting so upset with all of the medical advances espically in the

oncology field you would think that they would know when they can test for

cancer and when its too soon and what will and

will not show in the bone marrow. i gues this is the problem that you get into

when you have 3 different docs from 3 different fields trying to figure things

out!

Good luck to all!

We see our rheumy on the 23 the eye dr on the 22 and the heme dr on the 28

with a bone scan we are gearing up for alot of traveling hopefully this will get

us answers!

and caleb 7 ? systemic.

P Woods <woodsrp@...> wrote: