to debi

[Guest guest]

Hi bebi,

thankyou for the email it was really interesting

reading after i got your email we had to rush vicki

back to hospital.

I took the name of your illness but found there wasnt

a appropriate time to mention it.As it was they went

to send vicki home, my husband stood up and said no

way, i ask for a blood test they only agreed to a

white blod count and red.which came back normal.

Anurse dip sticked her urine and she was extremly

dehydrated.

Nausea still bad.

They agreed to a drip and stemil iv for 6 hours.

we came home thismorning she is still unable to

swallow meds and not much fluid or food intake.

A shrink was brought in the same one Sj sees, well hes

a behaiour specialst.This would be vickis 5 th in 3

years lol.When will they get it?? That its physical

causing mental??? ARRRRRRRRRRRRRRRRGGGGGGGGGGGGGGG

Vicki improved thismorning when she emptyied her

bowel.She passed massive cricket ball shape.Her nausea

settled alot but now as i write this its flaring up

again so are getting a anti nausea drug called

stemital, a family memeber of maxolon.

If we end up no where with all this i will beg demand

or bribe a dr to do the blood test!

Vicki is 14 years old.Minus a kidney and lower lung on

opposite sides to cancer she had a wilms at the age of

2 years 5 weeks then relapsed for the lung tumor a

year later.

I have reasearched alot of papers on vincristinine a

chemo drug which does periphiel(cant spell) nerve

damage she had all the classic symtoms.

Then when she was 10 she slipped of her bike impacting

the bike seat into her tailbone causing the mutiple

fracture injury, which wasn,t diagnosed for 10 weeks.

Approprate phsyio was not done hence the on going

CRPS.

Vickis self pain managment has been great this year

she has come out of her shell and taken control of her

life.This set back is so out of chrictor for her.

Please keep in touch your reply was the most helpful

and knowledgable.

I wouldve been a qualifed nurse if i had not fallen

pregnant during training.I have nursed palitive care

dementia paitents.

so we are discovering common ground.

take care debi

regards

lois and tribe

>

>

>

> hi my name is debi (DEBIRSD4i HER SYMPTOMS SOUND

> LIKE SOMETHING I WAS BORN WITH BUT DIDNT MANIFEST

> ITSELF UNTILL I WAS IN MY 20S, ITS CALLED ACUTE

> INTERMITTANT PORPHYRIA. A VERY EXTREEEEEEMELY RARE

> BLOOD DISEASE. IT IS GENETIC AND YOU HAVE HORRIBLE

> ABDONINAL PAINS WITH NAUSEA AND VOMITING AND YES

> PANIC ATTACKS. THEY HAD ME HAVING EVERYTHING FROM

> GALLBLADDER ATTACKS TO PHYSIOLOGICAL PROBLEMS. I

> SAW ALL THE DOCTORS AND EVEN MAYO CLINIC. PHYSIC

> DOCTORS TO GOD KNOWS WHAT ELSE, BUT IT TO CAN

> CAUSE PHYSIC PROBLEM S. ALONG WITH AN ACUTE ATTACK.

> HAS ANYONE ELSE EXHIBITED THESE SYMPTOMS YOU ANY

> AUNTS COUSINS EXT. I WOULD LIKE TO KNOW HOW OLD

> VICKI IS? ALSO THIS IS GOING TO SOUND CRAZY BUT FOR

> A TEST U CAN DO ON YOUR OWN IS HAVE VIC URINATE IN A

> CLEAR STERILIZE BOTTLE AND PROCEED TO SET IT ON A

> WINDOW SEAL WITH THE SUN DIRECTLY ON IT FOR 24 TO 48

> HRS. IF IT TURNS A REDDISH PORT WINE COLOR IT COULD

> MEAN ITS POSITIVE FOR PORPHYINS ALSO ASK YOUR DOCTOR

> TO DO A 24HR TEST FOR PORPHINES. AND A BLOOD TEST

> FOR (GET READY) OH HECK CANT SPELL IT BUT ITS A

> SPECIAL BLOOD TEST TO DETECT THE DEFECT

> BUT HE WILL KNOW WHAT THE TEST IS. FOR GENETIC

> DEFECT. ANYWAY DOCS DON'T EVER CHECK FOR THIS AS ITS

> SOOOOOO RARE! I KNOW THIS SOUNDS CRAZY BUT ITS ALL

> TRUE. THERE IS TREATMENT FOR IT. SUCH IS HIGH

> CARBOHYDRATE DIET, a lot OF SUGAR CANDY EXT. ALL

> THIS DOES IS ABSORB THE EXTRA ENZYMES SHE IS

> SPILLING OUT. AND FOR PAIN NARCOTICS SUCH AS DEMEROL

> WORKS WELL. THERE A TONS OF MEDS SHE MUST STAY AWAY

> FROM. BUT FIRST SEE ABOUT THIS WITH YOUR DOCTOR. ITS

> PRONOUNCED (POR-FEAR-IA) IV BEEN ON REMISSION FOR

> YEARS SO I DONT HAVE TO DEAL WITH THAT ANYMORE BUT

> THE RSD I DO. PLEASE LOOK IT UP ON WEB SITES THERE

> ARE 7 DIFFERENT KINDS. I BELIEVE THERE IS A SUPPORT

> GROUP TO. IAM A NURSE AND WOULD BE VERY INTERESTED

> IN WHAT THE OUTCOME IS. ALSO A GOOD DRUG FOR NAUSEA

> IS SOFRAN IT WORKS FAST IF GIVEN I.V. PLMK I HOPE I

> HAVNT STUCK MY NOSE IN TO MUCH. GOOD LUCK DEBI

> (DEBIRSD4)

>

>