Re: interesting phone call/

[Guest guest]

Hi :

I'm thinking a genetics doctor will be our next step. I told her however, that

I did not want anyone at our Children's hospital. I'm afraid they'll review her

chart and consider me a whacko mom before they ever even meet us! It is a shame

others are being treated this way. So many states have no ped rheumy's and we

have something like 11 statewide. 5 of them at our Children's hospital in

Milwaukee, it makes me really mad!

She said she would call me this weekend sometime, so I'll keep you posted.

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

Sending prayers & happy thoughts,

Beth :-)

interesting phone call

@group s.com

> 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 :-)

>

>

[Guest guest]

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 :-)

>

>