As the mother of 2 adults with PKU, (both were on the diet from birth. One until age 5 and one until he became a teenager)I was wondering if most people go to a PKU clinic or are there some that just go to a regular family doctor for their PKU check-ups? I ask because I’d love to see both of my children back on their PKU diet. But because of the distance they are from the nearest PKU clinic, both are quite hesitant to do so. I feel quite confident they’d go back on diet if they could do so from where they live. Is this an issue for anyone but my two kids??
(age 32 with pku) I tried going to clinics here in my state but they really did not show much interest in me so I was not highly motivated to go on a regular basis. Plus it is 2+ hours from home and that is a long trip on a regular basis. I guess I am waiting till they get a clinic on this side of the state, which may be possible some day
My kid’s clinic is about 3 hours from their home. It’s a very nice clinic with caring staff. But neither one of the kids wants to go there. They are adults so it’s up to them I guess. But they both have issues that I think are related to high PHE levels. I just think it would be better for them to be on the diet and they should do it anyway they can that they would feel comfortable with.
what kind of issues do they have from high phe levels?
Hello everyone. I’m new to this group. And I hope you don’t mind my imput as I see you are all parents of adults with PKU. I am a 31 yr old adult with PKU and never been off of diet. And I can understand what an inconvenience it can be for your children on the distance it is to a PKU treating clinic.
Let me just say from experience……. regular family doctors normally will not treat the pku as they aren’t specialized in its treatment. They certainly know a common knowledge of it but not enough to properly treat it. It would be much better if your children be set up as a patient of a clinic (they are usually at children’s hospitals). If distance is their issue then they can work something out with the dr. and dietician.
As an adult with pku you don’t need to be seen as often as a child. And so long as you are not going to be preparing for pregnancy then getting the bloodwork done doesn’t have to be but maybe 1 a month.
Your children can see if they can go in for an initial appointment which will be worth it so they get set up on their diet plan and formula intake and all that and talk about either having the bloodwork done at home and mailed into the clinic or as some get an order from their pku dr. to have their bloodwork drawn at the local hospital lab and shipped to the clinic and then do as much as possible over the phone in regards to the diet. And just go in the every 6 months to 1 yr that most clinics require of adults. Now if any of your children are girls/women then make sure they use birth control till they decide they want to start thinking about getting pregnant and then the amount the clinic will want to see them and have phe levels taken will be different.
I’ve dealt with the distance thing before in the past and have had my bloodwork taken at my local hospital and shipped to my clinic and then did alot of the stuff of the phone with my dietician till my next appointment. Just giving you all a little advice if the main issue is distance.
But yes them getting back on the diet is the best for them all the way around.
Hope I’ve not butted in and I have been of some help.
I always go to my PKU Clinic. They pester me if I don’t. I even get my dietician ringing up and sending letters through my post telling me that I haven’t gone to the clinic at Nottingham City Hospital. At the same time they set me an appointment without me asking for one. The PKU clinic seems to take it very seriously and are eager to do the checkups. They’ve asked me to go back to the clinic next month to take a blood test due to returning to the Express Cooler, though I don’t really need it. I just had an appointment on Tuesday I’ve heard that if you don’t attend your clinics, in the future you will be taken off the list and will be unable to seek help if you ever come to need it.
Me and my sister (We’re 15 and 7) see my PKU doctor and dietian at Childrens hospital, and lucky for us distance isn’t an issue because it’s only about a 20 minute drive. We usually do out blood tests at home and then send them in. I also have that slight problem with making appointments when I should (well actually my dad does that), but they always send a note and then my dad makes one. But our real problem is bloodtest because we always forget to do them. We’ve tried almost anything, even if we write it on our calendar we always manage to forget with all the busy stuff going on. nBreanna
Being the mom of a newborn with PKU I was immediately very greatful to live so close to a Children’s Clinic that treated PKU. I am about fifteen minutes from it and go for weekly visits. The staff is very kind and supportive. Once I started reading about how others don’t have a clinic available I realized how lucky we are. I can’t imagine having to figure this stuff out on my own or only having help through the telephone. I intend for my daughter to stay on the diet for life and to make that possible I must be really up on following the diet in preparing food for her throughout childhood. I am going to get the big PKU food list notebook soon so I can start learning how to count phe before I actually have to do it on a daily basis. Our nutritionist is very helpful. I don’t know how I would know about all this without her.
I’m actually surprized that they are not on diets, I visit both my regular doctor and my clinic. I used to go more often but now only go once a year. Still monitor my levels with blood tests.
dynocop you only have to go to your clinic once a year? I have to go every six months…unless they want me to come in for a third check up, but that’s probably because I’m a teen
Missy what kind of blood work did the clinic do on you? I am just curious as our clinic doesn’t do any at anytime! Thanks for any feedback that you have.