PKU.com Community Discussion Forum Parent support problem with Doctors Reply To: problem with Doctors

#8419
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katiemag16
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Gracie – you are definitely not asking too much.. It is the doctors responsibility to get you your child's level ASAP esp if you are still trying to juggle with the appropriate intake of food to be consistent with his levels.  My advice would be to find another clinic near you.  If it makes you at all at ease, when I was diagnosed with PKU 24 years ago – the closest (and best reputable) clinic was in Boston, MA which is about 3 and half hours from my house.  Yes, it was time consuming when I was younger and had to go more frequently, but the doctors were the best for me at the time and that was most important!  Try to be easy on yourself.  You will have bad days – my mom often tells me from when I was born, but remember your son can lead a long and healthy life with PKU.  There have been so many medical advances in the past 10 years alone.  In addition, next year there will be a self-monitoring kit coming out (similar to a diabetic kit) and it will allow you to check your son's level as often as you would like with immediate feedback.  In the meantime, I would do some research of other clinics.  Do you mind me asking where you live and what clinic you go to? Hang in there

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