Stacy

AS MOST OF YOU KNOW (IF  YOU READ THE OTHER POST), I HAVE PKU. WELL, I WAS READING UP ON THINGS AND LEARNING NEW THINGS THEY HAVE DISCOVERED IN THE PAST 2 YEARS ALONE.

NOW WHEN I WAS PREGO WITH BOTH BOYS I HAD TO GO ON MY PKU DIET. NO CHOICE ABOUT IT. WELL, I LEARNED AT 16 IT WAS A DIET FOR LIFE. I WENT ON IT BRIEFLY BUT I JUST REFUSED TO ADMITT TO MYSELF THAT IT WAS A BIG DEAL OR THAT I HAD IT. I REFUSED TO ADMITT THAT. I KNOW IT DOESNT HELP DENYING THINGS BUT….WHATS GOT ME REALLY IRKED IS THIS….

IN THE PAST TWO YEARS SINCE I HAD ANGUS THEY ARE LEARNING PKU CAN EVENTUALLY BE FATAL! I DID NOT KNOW THIS AT ALL AND MY DOCTOR DID NOT EVEN BOTHER TO CALL ME AND LET ME KNOW ANY OF THIS AND YES HE KNEW B/C I CALLED TO FIND OUT YESTERDAY.

PEOPLE WHO HAVE BEEN OFF DIET FOR A LONG PERIOD OF TIME (ME) TEND TO EITHER GET NUEROLOGICAL PROBLEMS OR EMOTIONAL PROBLEMS. TO THE POINT THEY DONT REALIZE IT. I MEAN, THEY CANT SEE IT LIKE OTHERS CAN…WELL, I GOT TO THINKING THAT THIS MAY BE WHY IVE DONE THE THINGS IVE DONE, ESPECIALLY HERE LATELY…I KNOW I AM MORE ON THE EMOTIONAL SIDE AND ITS GETTING OUT OF HAND AND I NOW FINALLY SEE THAT!

ON TOP OF ALL THAT THEY CANT REMEMBER THINGS LIKE THEY USE TO. COMPREHENSON ISNT AS WELL, ETC.

ANYWAY, PLEASE DONT THINK IM DUMB CAUSE IM NOT. IF I WAS I WOULDNT HAVE REALIZED THIS.

I USED TO LOOK AT MY PKU AS A WEAKNESS. IT ALWAYS MADE ME THE ODD BALL IN SCHOOL. SPECIAL MEALS, ETC.

I MEAN ITS BAD …AND NOW THEY KNOW IT CAN KILL US IF IT GETS TO OUT OF HAND…WTF…WHO DOESNT TELL THEIR PATIENTS THIS! THEY SHOULD BE OBLIGATED TO TELL THEM. ITS NOT LIKE THEIR ARE A LOT OF US CAUSE THERE’S NOT.

I DECIDED, FOR MYSELF, THAT IT WOULD BE BEST IF I WENT BACK ON THIS DIET. ITS NOT A MATTER OF IF I WANT TO OR NOT..ITS A LIFE AND DEATH THING AND IT WILL ALSO MAKE ME INTO A BETTER PERSON…THE “REAL ME!”

BUT I NEED MY FRIENDS TO KINDA STAY IN TOUCH, SO I CAN TELL IF ITS MAKING A DIFFERENCE. IM JUST CURIOUS. I WAS ONLY ON IT WHEN PREGO SO I WAS EMOTIONAL ANYWAY BUT THIS IS GOING TO CHANGE THE WAY I LOOK AT THINGS, I WILL BE MORE POSITIVE AND I SURES THE HECK WONT BE DOING THE CRAP I DO NOW…THE WHOLE LYING (ITS LIKE I CANT HELP IT OR IM SCARED WHAT PEOPLE THINK SO I TELL STUPID WHITE LIES…I HAVENT LIED TO ANY OF YOU I PROMISE) THING OR CAUSING CRAP THING. KNOW WHAT I MEAN. I HAVE NEVER BEEN THAT PERSON.

I KNOW THIS SOUNDS FAR FETCHED BUT ITS TRUE!

I WILL HAVE TO MEASURE EVERYTHING I PUT IN MY MOUTH. I WILL ONLY BE ALLOWED SO MUCH FOOD A DAY! I AM NOT ALLOWED TO EAT MEATS, WHEATS, GRAINS, DAIRY FOOD PRODUCTS, NUTS, PASTAS AND SO ON! ANYTHING HIGH IN PROTEIN I CANT HAVE!

IM NOT SURE IF YOU ARE FAMILIAR WITH PKU AT ALL BUT ITS SOMETHING YOUR KIDS GET CHECKED FOR WHEN THEY ARE BORN! THATS ONE OF THE THINGS THEY CHECK FOR WHEN THEY GET PRICKED IN THE HEEL.

PKU IS A GENETIC DISORDER THAT IS PASSED FROM THE PARENTS. THE PARENTS DONT HAVE TO HAVE IT (THE PKU), THEY JUST HAVE TO BE CARRIERS. IT EFFECTS 1 IN 25,000 BABIES AND NOW EVERY BABY IN THE U.S.A IS TESTED AT BRITH FOR THE DISORDER.

BASICALLY, THE BODY IS MISSING AN ENZYME THAT BREAKS DOWN THE AMINO ACID PHENYLALANINE (PHE..THIS IS WHAT I AM RESTRICTED ON) WHICH IS FOUND IN ALL PROTEIN.

A PERSON WITH PKU CAN NOT HAVE ANY MEAT, DAIRY, NO BEANS, OR SOY BEANS, WHEAT, GRAINS. SINCE I CANT HAVE ANY SOY EITHER THAT RULES OUT TOFU AS WELL.

SO, FOR THOSE PEOPLE WHO THINK GOING VEGETARIAN IS EASY, ITS NOT, BECAUSE VEGETARIANS GET THERE PROTEIN FROM CHEESE, BEANS, MILK AND TOFU; SO ITS NOT THAT SIMPLE FOR PEOPLE WITH PKU!

THE TREATMENT IS VERY EXPENSIVE WITH DOCTORS VISITS TO AS MUCH AS $500 A VISIT AND SOMETIMES MORE. THEN THERE’S THE PILLS, FORMULA, TABLETS AND OTHER THINGS LIKE LOW PROTEIN FOOD WHICH ARE ALL VERY EXPENSIVE AND VERY FEW INSURANCE COMPANIES COVER IT! IF THE DIET IS NOT FOLLOWED IT CAN LEAD TO EMOTIONAL ISSUES/PROBLEMS OR NUEROLOGICAL PROBLEMS. JUST DEPENDS ON THE PERSON.

AND EVEN WORSE, IT CAN EVEN BE FATAL!

I WAS TAKEN OFF AT 7 YEARS OLD…HAVE BEEN ON IT A FEW TIMES SINCE; ONCE FOR EACH PREGNANCY.

THIS DIET IS VERY IMPORTANT FOR MY MENTAL AND EMOTIONAL STATE, FOR MY WELL BEING AND MOST IMPORTANTLY MY LIFE!!!

I CONTACTED MY PKU DOCTOR YESTERDAY. WE ARE SCHEDULING A VISIT. I WILL HAVE TO GO TO LITTLE ROCK FOR IT BUT THATS NOTHING IF IT WILL IMPROVE ME AS A PERSON AND KEEP ME ALIVE.

I ALSO DECIDED YESTERDAY THAT I WAS GOING TO GO BACK ON MY DIET COME TODAY B/C I HAD TO GET THE RIGHT FOODS! THIS IS GOING TO BE REALLY HARD ON ME! ITS GOING TO BE TOUGH! AND IM GOING TO BE VERY HUNGRY BUT I WONT BE ABLE TO EAT ANYMORE THAN WHAT I AM ALLOWED! ESPECIALLY SINCE I AM TRYING TO LOSE WEIGHT AS WELL.

I AM GOING TO NEED MY FRIENDS THROUGH THIS UNTIL I GET USE TO IT AND DO OKAY! TO ME, ITS IMPORTANT I HAVE MY FRIENDS HELPING ME THROUGH THIS BECAUSE ITS VERY HARD, ESPECIALLY AFTER HAVING ALL THE “GOOD STUFF” THAT I AM NO LONGER ALLOWED TO HAVE. IT’LL DEFINITELY TELL ME WHO MY REAL FRIENDS ARE!

I HOPE I CAN COUNT ON ALL YOU! I BECAME AWARE OF THINGS I DIDNT KNOW ABOUT JUST IN THE PAST COUPLE OF DAYS! BAD NEWS AND GOOD NEWS WHEN IT COMES TO MY PKU BUT IT HAS TO WORK FOR ME.

THANK YOU AND I LOVE YOU ALL!

STACY

I WAS BORN WITH PKU. ITS A VERY RARE GENETIC DISEASE THAT IS PASSED DOWN FROM YOUR PARENTS.  MOST OF THE TIME YOUR PARENTS ARE JUST CARRIERS, THEY DONT ACTUALLY HAVE THE DISEASE THEMSELVES. FIRST, I WANT TO TELL YOU AND GIVE SOME INFORMATION ABOUT PKU! GIVE YOU AN IDEA OF WHAT ITS LIKE TO HAVE, ETC..THEN IN ANOTHER BLOG I WILL TELL YOU WHAT I WAS TOLD BEFORE I GOT RELEASED FROM THE HOSPITAL! IT HAD A LOT TO DO WITH WHY I COULDNT FIGHT THE PNUEMONIA I HAD! SO HERE IS SOME INFORMATION ON PKU. FIRST, THOSE OF YOU WHO HAVE KIDS. YA KNOW HOW YOUR KIDS GOT THEIR HEELS PRICKED WHEN BORN TO CHECK THEM FOR THINGS. WELL, PKU WAS ONE OF THEM! I WAS THAT ONE IN 25,000 THAT HAD IT THE TIME I WAS BORN…THATS IN A YEAR. NICE HUH! BLAH!

 Imagine being forced to say no to a child crying for more food at supper. And begs for eggs, cheese, meat like a child begs for candy.  With  PKU, a genetic disease that means our body can’t tolerate anything more than a low-protein diet. We would give her vegetables and we could give her, say, two little sprigs of broccoli, I would be crying at the dinner table that she wanted more broccoli Saying no to a kid who wants more broccoli brought tears to my mom’s eyes. It was so sad.

PKU is described by scientists as an autosomal recessive genetic disease that is characterized by a deficiency in an enzyme called phenylalanine hydroxylase (PAH)…..Without PAH, the body cannot metabolize the amino acid phenylalanine. It then builds up in the blood, crosses the blood–brain barrier and causes severe brain damage. Fortunately, PKU can be detected at birth in blood tests, and was one of the first treatable genetic diseases.

From infancy, PKU sufferers are restricted to a low-protein diet to avoid the worst complications of the condition. This diet is essential during childhood to prevent damage to the brain while it is still growing; however, it is now also recommended for life to optimize school performance, concentration and the ability to think clearly…..
 

However, help may now be on the way. A new pharmaceutical being developed by researchers at McGill University and the McGill University Health Centre (MUHC) – along with colleagues at the Scripps Research Institute and BioMarin Pharmaceutical Inc. – is offering PKU sufferers the hope of being able to eat a normal, protein-rich diet. Their preclinical evaluation study was published in December in the Proceedings of the National Academy of Sciences.

“The problem is that the PKU dietary modification is extreme,” said study first-author Dr. Christineh Sarkissian, a research associate at McGill’s Departments of Biology and Human Genetics and the MUHC/Montreal Children’s Hospital Research Institute. “It’s not a lifestyle choice, it’s an obligation, and it’s very difficult to say the least.
..Eat a special diet which consists largely of drinking an amino acid formula that’s very nasty and gritty,” Fischer explained. “The patients can’t eat meat, nuts, fish, dairy or grains. And when I say grains, that means no pasta, no bread, no crackers, nothing. So for example, when a typical teen goes out and has a cheeseburger.  The teen can’t have the cheese, the meat or the bun. She can have the lettuce and the pickle.”….
 

Even individuals who have lived on the restricted PKU diet for years (I WAS LET OFF AT 7 YRS OLD) may still suffer health effects into adulthood, Sarkissian explained, especially if they increase their protein intake as they get older…..
 

“The majority of adult PKU patients, depending on how sensitive they are at the blood-brain barrier, will end up suffering from agoraphobia and other conditions that can result from insult to the brain,” she said. “The majority of kids who go on to university need to remain on the diet, otherwise they just can’t function clearly.”….

Sarkissian is hopeful that the new injectable treatment she developed with her former supervisor and now colleague, the corresponding author Dr. Charles Scriver – Emeritus Professor of Pediatrics and their academic and industrial collaborators – will make it possible for PKU patients to eat a more normal diet…..

“As we go into clinical trials, we’ll see how it works in humans,” she said. “Certainly in the animal models we showed that the phenylalanine levels came down to normal. The treatment itself is enzyme therapy, so patients will receive an injection once or twice a week instead of, we hope, needing to be on the diet.”….

“I’ve got high hopes about this research,” said Fischer. “I couldn’t be more excited. It would change our life in two ways: From our point of view, I’m sure the most important thing would be the less restricted diet. Us older adults are hungry a lot of the time, we never get enough food to fill us. We would be excited to eat all the cauliflower we want.

“Aside from just the diet portion,” Fischer added, “PKU affects mood and the ability to concentrate, and diet therapy does not work perfectly for everyone. ..

I WAS TOLD WHEN I LEFT THE HOSPITAL I HAD TO GET BACK ON MY PKU DIET! SO NO MEATS, WHEATS, GRAINS, DAIRY FOOD PRODUCTS, NO PASTAS, NO BREAD…FRUIT AND VEGGIES IS ALL I CAN HAVE..ALONG WITH ALL THE OTHER STUFF THEY MENTIONED I HAD TO DO FROM THE NASTY GRITTY FORMULA TO TONS MORE….I WILL NOW POST MY NEW POST!

I am sorry. I had to share this.  I am so proud to call her mine. The lady in charge of the children’s group at our local hospital where stacy is staying said Stacy came down last night because she was feeling better. She volunteered to sing them a song. The lady in charge recorded stacy and some other guy who volunteers to help her with the song and OMG..i could feel the love in her heart. She was singing the song When You Lie Next to Me. I’ve never heard her sing until then. I had to post on an mp3 and send it to all her friends and family. Its kind of muffled but i did the best i could with it. Please take a listen. Stacy volunteers at a local school that is for Diabled children with Mental Retardation, Down Syndrome, Autism and even just children with delays like speech and walking. This is the only school in our area and its a Non Profit Organization who relies on charities and the community to keep them up and running. The name of the school is called the BENTON COUNTY SUNSHINE SCHOOL. Its in Rogers, AR. I think she needs to sing this song to those little ones.

http://singshot-11.vo.llnwd.net/d1/mixdown/4/5/4/5/145454.mp3

Best regards.

Coz Trotter

Hey everyone!

I just wanted to let everyone know that i have been sick now with WALKING PNUEMONIA for going on 3 weeks now and it really sucks. See, i have never had pnuemonia in my LIFE! And well, i went to the doctor and he gave a Z-pack. For those who are not familiar with those its pack of 5-6 pills usually. I had 5. I was in bad shape. I had a horrible cough. I was coughing every 5 minutes or less. I also had tummy issues and i will spare you those issues b/c its just nasty. LOL! But i couldnt eat anything without getting sick. Also, the runny nose from H*ll that im sure we all know about…

Okay well, i got a Z-pack of 5 pills, cough meds, and the generic for CLARITIN for my runny nose…not WTF. 5 days of meds isnt going to clear up walking pnuemonia. Sure it will make you feel a lot better but its not going to heal you, as i would say.

Well, the problem is this. Some of you on this site i am sure are familiar with the Arkansas weather here lately. For those of you who dont, i will tell you. WE HAVE NOT HAD A WINTER…NONE AT ALL. Its 50’s and 60’s for like day or two, maybe even three days…and then BOOM..its 20 degrees and snowing. No kidding, just a week to a week and a half ago it was 70 degrees one day and then the next day it was 20 odd degrees and we had an ice storm and snow. And i wonder why i cant get better. Its been this way since, oh…i would say….October. Mid to late october.

We just went through a spell a couple of days ago of FREEZING WEATHER (it snowed) and then the next day after two days of that it was in the mid 50’s and sunny. The day before yesterday was sunny and get this 70 degrees! Today was 60’s. Tomorrow’s high is 40 degrees.

Okay, i had to tell you that so you get my point. Now, here it is…so i ve been sick with this for 3 weeks before i got it checked out by a doc…it just got really bad and wouldnt go away. I dont usually get sick like this. So i got my meds and heres the weather acting all messed up and here i am trying to get better….well HOW IS A PERSON SUPPOSE TO GET BETTER WITH THIS KIND OF WEATHER..i mean really.

I was getting better…runny nose was gone, cough was gone but the major stuff was still there other than the hoarseness. And today…my cough is back, my hoarseness is back and my nose is major runny like it was before…..i think im going to have to go back to the doc. Should i DEMAND a real antibiotic for this crap or should i let him give me another stupid Z-pack. I need more cough medicine too…its bad…cant sleep at night cause of it and how often it is…

So this has really interefered with my trying to lose weight b/c my doc told me its bad to diet when sick and i know that and understand that, thats why when i am sick i dont diet. I eat healthy and make sure i get plenty of liquids. I mean, im not dumb, i did go to college and get a nursing degree…lol….

So, any suggestions! OR how i should handle my doc…hes a good doc…just kinda dingy sometimes…