HELP!!!

HELP!!!

Avatar of Sandra

HELP!!!

August 25, 2010 in Uncategorized

Ok, so 3 yrs ago, I wasnt able to afford my own supplement, so the hospital sent me one that was free to try. I loved it! I was on it for two weeks before I started having seizures and felt crazy pulling my hair out and such. I come to find out that they had sent me a very high phe supplement by accident, but knew about it for a week and didnt tell me. I drove myself to the nearest hopstital, only to get yelled at by a doctor who thought I was lieing about having PKU cause he had never heard of it, and sent home with a $1400 bill to say hi to them. Ever since then, I have been suffering from severe stomach pain, nausea, vomiting, fainting, blackouts, seizures, vertigo, and constant migraines on almost a daily basis. I have attempted to work, but I now have to take many sick days in a row, and cant work. I have been trying to get disability for 3-4yrs now and every time i go to the hospital for something, i just get yelled at and sent home because i have no insurence and cannot work to get it. Medicaid told me Im not pregnant, and thats why I cant get medicaid, SSI says Im fine, even though at the time I went to their doctor I couldnt even touch my nose, and fell over. My eyes were so glazed I couldnt even see stright. I went 2 whole months without food before i could start to eat again. I almost died, and doctors didnt care cause im broke? I couldnt walk, eat, drink, stand, sit, or anything, and I never know when im going to feel ok, and when its going to get that bad again. I feel that this was not even my fault, it was theres, but now no one cares, or listens. I am a singer and had to turn down a record deal because of this. Im scared for my life, and im in a big rut unable to move without any help. Ive done everything others said i could try.

12 Reviews of HELP!!!

  1. Registered: Feb 26, 2007

    Posts: 0

    Chicago, Illinois

    Are you completely off diet right now? Have you visited a PKU clinic? I know my clinic has a small grant fund for people without insurance. I am sure you know that if the symptoms are PKU related they should be minimized by being on diet. I’m not sure I understand your situation that fully, but I would try contacting a PKU clinic or support group. If there are a group of PKU individuals in your area, they may be able to help you with formulas and supplements when you run short.

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Wow, I am so sorry to hear you are going through this horrible experience! I agree with Sarah. Have you contacted a PKU clinic? They should be able to help advocate on your behalf.

  3. Registered: Aug 25, 2010

    Posts: 0

    Indian Harbour Beach, Florida

    Thanks guys!! Well right now im in search of a dietition who is interested in helping me. But as far as being on diet, i am on it but really need to be on it better. I dont have a proper cook book, and need testing suplies, but hopefully i will soon. My PKU clinic is very far away, and I dont have a car or anyone who wants to take me.

  4. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    where are u located?

  5. Registered: Aug 25, 2010

    Posts: 0

    Indian Harbour Beach, Florida

    In Indian harbour beach FL. u?

  6. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    around tampa fl, we have an amazing clinic in st josephs childrens hospital, if u were closer i would help u out..how far is that from the tampa area?

  7. Registered: May 27, 2009

    Posts: 0

    , Florida

    Hey SD7, I live on the other coast, but we have friends- a church we visit once or twice a year- in Palm Bay. Maybe I can find a way to help? Are you currently taking anything like PhenylAde or anything like that? Maybe Kuvan can help. They may be able to assist you in a trial even without insurance. When I was a child I received testing at my health department here in Brooksville. Maybe if you get them the information they can do the testing there? I know the state of FL seems to forget the PKU kids grow up.

  8. Registered: Aug 25, 2010

    Posts: 0

    Indian Harbour Beach, Florida

    Yeah im taking phenylade. I cant take kuvan, it causes gastrointestinal problems, which i have severely already,

  9. Registered: Aug 27, 2010

    Posts: 0

    Plainfield, Illinois

    If you have been diagnosed with PKU, (most likely at birth) there should be a record of it in your personal medical records. Had you been on diet prior to these events? If you have had treatment for PKU when you were a kid, contact the doctor that you saw as a child, or the clinic you went to. They should have record of your previous medical treatment. Many states provide PKU formula free to residents that have been diagnosed with PKU. All that is required to determine if you have PKU is a simple blood test, which does not cost very much even without insurance. If you are looking for a center that deals with PKU regularly, I recommend the Waisman Center in Madison, WI. I realize that you are in Florida, but the Waisman Center is part of the University of Wisconsin, and is one of the leading PKU research universities in the country. If you call them they can surely provide you with a list of reputable doctors in your area that can assist you with your PKU. Call Mary Rasmussen at the Waisman Center and she can connect you with someone that can help. Her phone number is (608) 263-5993 or you could email her at mrasmussen@waisman.wisc.edu

    As far as the hospital sending you the incorrect supplement, you may wish to speak to an a attorney to see if you may have a legal case against the hospital.  

  10. Registered: May 27, 2009

    Posts: 0

    , Florida

    Hey Sundance7,

    Another resource is NORD: National Organization for Rare Disorders. They may be able to help with costs. The number is 877-798-8716 (M-F 9am-5pm). I went to the health department when I was a kid, maybe the health department there can help (it’s all Florida). If I can think of anything else I will let you know. I have hidden PKU until recently- I did not let many people know. My 5 and 9 yr old girls now have a bunch of questions about PKU for me. Hang in there and let me know if we can help. –Pete ><>

  11. Registered: Jun 27, 2009

    Posts: 0

    , New York

    The Florida PKU Foundation might be a good resource for you to check out. The Donatucci family started it a few years back (their son has PKU) and are great people. Here is their link to the clinics in Florida :
    http://www.floridapku.org/clinics.htm

  12. Registered: Apr 16, 2016

    Posts: 0

    No Location

    I have been reading your story sandra and I feel very lucky in the way that in the uk where im from all my prescriptions are free and I have just whent back on pku diet as I feel I need to be on it I am at present seeing a doctor and dietician every 4to6minths to keep an eye on howvim doing with my diet..im not as strict on it but I take pku air coolers and have been since january this year I am also lucky in that I dont need to pay insurance if I need to go to hospital but it makes me think how lucky I am when I read other stories …hope you manage to get on track with your diet

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