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

#8434
Avatar of Breanna
BreaMarie91
Member

Hi Gracie,

Unfortunately things like this do happen. Have you tried to voice your concern to your sons doctor or dietitian? My only advice for now would be to continue contacting your sons doctor or dietitian a few days after his phe level is sent in to check if they have received his level yet. If you are looking for a new clinic you can go to this link macpad.org/page.aspx. If I am correct there are three different clinics in Massachuetts. If you do change clinics though be warned that in some cases clinics do send their blood tests to the same labs.

Also like Katie said everyone has their good and bad days. I think that's how life in general goes, not just PKU. There are so many factors that can effect phe levels (fevers, teething, growth spurts etc), so at times your sons levels may not be exactly where you would like them. Just keep in mind that doctors are more worried about whether or not the phe levels are high long term. Many (if not all) children, teens, and adults who have PKU have had their share of high phe levels and today so many of us are doing wonderful despite this fact.

Please let me know if there is anyway I can help you!

Hey Katie,

I have a question. The new self-monitoring kit is suppose to come out next year? Last spring I spoke to Elaina Jurecki, and I thought she said this was still in the early stages of development. I could be wrong, which is why I am asking.

Breanna 18 CPKU

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