My daughter,Sarah is now 27 and married 3+ years and recently had her tubes tied so as to never have children. She had started treatment at 2 weeks old until 10 yrs but she hated/resisted the diet and cheated. Her levels were up and down and she also has ADD, learning disability, and problems with depression. She states she could not ever go back on the diet so she decided not to have kids. I think it was a very responsible thing to do despite she is my only daughter. She claims she did not want to bring a child into this world with problems if she could not comply with the diet during pregnancy. My problem is, she is on Medicare disability and they now will not pay for the over $6,000.00 surgery. I am going to appeal, where can I get medical/clinical info. I understand this was her choice, but the state would have paid more for a retarded child had she become pregnant. It has been years since I have been involved with PKU. best web site for info? Her ever devoted Mom, Marsha
I wish I could help but considering I’m only 15 I’m not really sure where you could get info on this. Your daughter is off diet right now right? If she is on diet and sees a PKU doctor you could talk to them. If she isn’t on diet I’m not sure where you could get info.
I’m not trying to push your daughter back on the diet or anything because that is totally her option. I just really hope she doesn’t experience any health issues because of being off diet (if she hasn’t already). But all in all I really hope the best for you and your daughter and I wish I could help! nBreanna
(again sorry I couldn’t be much help)
you might want to check with your state on there laws about physical or deathly harm to you or the unborn child if you do become pregnant, if you are not able to continue with the diet.
is her husband ok with that??
there is always that chance that her children will come out fine. i have 4 children and only one has pku.
INFACT MY DAUGHTER HAS BEEN ON HONER ROLE SINCE SHE WAS IN 4TH GRADE. STRAIGHT A’S. SHE IS A CHEERLEADER, POINT GAURD ON BASKETBALL TEAM, AND PLAYS 2ND BASE ON HER BASEBALL TEAM.
I believe the reason Marsha said her daughter decided not to have children is because she isn’t doing well with her diet. And if that is the case and she is off diet then she won’t beable to have healthy children (that is unless she goes back on diet). I’m not saying people with PKU can’t have healthy children but for that to happen they have to be on diet, drinking their formula with levels between 2-6mg/dl (sometimes 2-4mg/dl depending on your doctor). Marsha had said that her daughter was off diet so if her daughter became pregnant while being off diet then the baby could (and chances are would) be mildly to severely mentally retarded, have heart problems, be premature or even have a miscarriage ect. If she were on diet though, she could have happy healthy children (and none of her children would have PKU…that is unless her husband is either a carrier (then she would have a 50% chance of having a PKU child) or if her husband had PKU aswell (which would be a 100% chance that her child would have PKU).
I guess that is one huge reason why I’ve decided to stay on diet and keep my levels where they need to be and avoid trying high phe foods. Someday I know I’ll want children and to have to go off diet and then return would be hard (atleast I imagine). Also Marsha I’m not trying to scare you but eventually (weither your daught is going to have children or not) it’s high suggested she goes back on diet. I’ve met adults who went off either during childhood or as a young adult (in their 20’s or 30’s) and they aren’t doing to great. One women couldn’t not walk (she is now back on diet but she said it won’t change that her muscles have broken down) and another man has a very hard time keeping a job. So again not trying to push or scare you, I’m just saying that maybe something your daughter might want to think about somewhere down the road, even if she isn’t going to have children it will still effect someone….HER! nBreanna
I am a PKU MOM with a 10 yr old healthy girl.
Most likley the reason the state wont pay for it is cause she can have a healthy child.
Its Just a decision that she made not a medical one.( I RESPECT HER DECISION )
I am a little older than some of the others,but i checked into it when i was younger,and did not want to comply with the diet.
When i hit 28 yrs old all changed for me.
I was very happy that i did not get the Tubes tied nor would the DR. agree to do so.
The state would pay for it if there was a na definite possibly that the child would not make it.
Now that i am older i cannot have anymore children. nMy kidneys pooped out, and now the Drs. are willing to tie my tubes.
I hope i made some sort of sense for you.
Good Luck ,and Take care.
I think that is awesome about your daughter.
Keep up the great work…… nKNOWLEDGE IS POWER.
Take care, nTracie-PKU