Pedpid:Update on Wade

[Guest guest]

Hi Ursula & everyone,

I'm not sure who knows what at this point, but to make a long story as

short as possible...Wade has been in Children's Hospital for 1 month as of

today. Original admitting diagnosis was Septicemia & Acute Sinusitits. He

then began experiencing severe headaches, retching & several " seizure type "

episodes. We have been " strung along " by the doctors for the last 2 weeks

& then 2 days ago they changed to new attending physicians & residents (1st

of the month) & we really thought that progress was finally being made.

Yesterday they (supposedly all of the doctors & services involved or

consulted in his care) were having a meeting to " discuss his case &

formulate a game plan " for Wade, so that we could get him out of there &

back in school for the last week. Well...at 5:15pm yesterday afternoon, one

of the residents came & asked me to come into the conference room to talk

to the docs about the " plan " . What happened next was that they porceeded to

tell me that they could find very little wrong with Wade, that he

absolutely had NO immune deficiency or disorder & that by continuing to

give him IVIG, I was essentially poisoning him! They said that if I did not

leave the hospital peacefully that they already had consulted CPS & had

papers for a court order to have me & my husband removed from the premises

for 1 week with NO contact with Wade at all until they finish their testing

to rule out Munchausen & /or Munchausen by Proxy Syndromes. They did not

even let me talk to Wade or say goodbye! I am quite numb, totally sad &

missing my son, but most of all I am concerned as to what they are telling

him & what their " treatment plan " consists of. They told me that he could

continue to have visitors & his friends could come & call, but they took

his phone away, so I don't know how anyone can call him. I have frantically

tried to " line up " visitors for the weekend & next week, which is difficult

since all of our family lives far away.

If anyone has any advice or " words of wisdom " to offer, I am at home

(0 or my cell phone () & I will listen to pretty

much anything at this point! I am in the process of consulting a lawyer,

not to interfere with thier investigation but to let the doctors know that

even though I am not there, someone is watching to ensure that Wade's

rights are not violated nor are my parental rights violated.

Above all, I would like to ask everyone to please keep Wade & our family &

friends in your prayers as we try to " let go & let God " !

Hope evryone has a wonderful weekend & all of the kids are enjoying the

beginning of summer!

God Bless you all!

Love,

Beth

Beth Rathburn

Grosse Pointe Woods, Mi. 48236

(313)824-4137

(313)824-9412 fax

[Guest guest]

Beth,

I'm so sorry for you and for Wade. I can only imagine

how heart wrenching it must be to be in your situation. I do

not know you and am fairly new to the list. I don't remember

Wade's age. I t sounds so scary and I feel you are doing the

right thing by consulting a lawyer and making sure Wade has

plenty of visitors during this scary time for all of you. I really don't

know anything to tell you if I called, but I'm sorry and hope it all

works out very quickly and doesn't upset Wade very much which

could be hard on his health. What is Wade's diagnosis in the past

as far as immune deficiency?

Jan

Beth Rathburn wrote:

> Hi Ursula & everyone,

> I'm not sure who knows what at this point, but to make a long story as

> short as possible...Wade has been in Children's Hospital for 1 month as of

> today. Original admitting diagnosis was Septicemia & Acute Sinusitits. He

> then began experiencing severe headaches, retching & several " seizure type "

> episodes. We have been " strung along " by the doctors for the last 2 weeks

> & then 2 days ago they changed to new attending physicians & residents (1st

> of the month) & we really thought that progress was finally being made.

> Yesterday they (supposedly all of the doctors & services involved or

> consulted in his care) were having a meeting to " discuss his case &

> formulate a game plan " for Wade, so that we could get him out of there &

> back in school for the last week. Well...at 5:15pm yesterday afternoon, one

> of the residents came & asked me to come into the conference room to talk

> to the docs about the " plan " . What happened next was that they porceeded to

> tell me that they could find very little wrong with Wade, that he

> absolutely had NO immune deficiency or disorder & that by continuing to

> give him IVIG, I was essentially poisoning him! They said that if I did not

> leave the hospital peacefully that they already had consulted CPS & had

> papers for a court order to have me & my husband removed from the premises

> for 1 week with NO contact with Wade at all until they finish their testing

> to rule out Munchausen & /or Munchausen by Proxy Syndromes. They did not

> even let me talk to Wade or say goodbye! I am quite numb, totally sad &

> missing my son, but most of all I am concerned as to what they are telling

> him & what their " treatment plan " consists of. They told me that he could

> continue to have visitors & his friends could come & call, but they took

> his phone away, so I don't know how anyone can call him. I have frantically

> tried to " line up " visitors for the weekend & next week, which is difficult

> since all of our family lives far away.

>

> If anyone has any advice or " words of wisdom " to offer, I am at home

> (0 or my cell phone () & I will listen to pretty

> much anything at this point! I am in the process of consulting a lawyer,

> not to interfere with thier investigation but to let the doctors know that

> even though I am not there, someone is watching to ensure that Wade's

> rights are not violated nor are my parental rights violated.

>

> Above all, I would like to ask everyone to please keep Wade & our family &

> friends in your prayers as we try to " let go & let God " !

>

> Hope evryone has a wonderful weekend & all of the kids are enjoying the

> beginning of summer!

> God Bless you all!

>

> Love,

> Beth

> Beth Rathburn

> Grosse Pointe Woods, Mi. 48236

> (313)824-4137

> (313)824-9412 fax

>

>

> ------------------------------------------------------------------------

> Would you like to save big on your phone bill -- and keep on saving

> more each month? Join beMANY! Our huge buying group gives you Long Distance

> rates which fall monthly, plus an extra $60 in FREE calls!

> http://click./1/2567/10/_/480115/_/960065843/

> ------------------------------------------------------------------------

>

> This forum is open to parents and caregivers of children diagnosed with a

Primary Immune Deficiency. Opinions or medical advice stated here are the sole

responsibility of the poster and should not be taken as professional advice.