Community Discussion Forum Adults and PKU Best Clinics

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    Avatar of Matthew

    How do you all like your clinics where you go for PKU care? Are your doctors very knowledgeable? Do they seem committed to helping you? What are the best things, overall, about your clinic? Worst things? Does your state university have a good genetics program? How's the coverage for your supplies?

    I am asking all these questions because I have PKU and am graduating college in a couple months and am looking for the best areas of the country to focus my job search and settle down in. I am in Louisville, KY and I am not very impressed with my doctors here, but maybe I am spoiled, coming from such an amazing hospital like UW-Madison.  

    So, here's your chance to brag on your doctors… or hang them!!………… ;-) just kidding!

    Avatar of Breanna

    I am from Wisconsin as well, but my sisters and I attend the PKU clinic at Children's Hospital of Wisconsin in Milwaukee. Up until recently the Milwaukee clinic provided absolutely wonderful care. I truly felt like the doctors, dietitians, and genetic counselors really wanted what's best for me, and they cared about me as a person rather than just as a patient. There was a point when I emailed my dietitian weekly, and I loved going to PKU appointments. We now have new doctors, and I am not sure how satisified I am with this new staff.

    I do not want to give the new doctors a bad name by any mean, because I am trying not to make any rash judgments before I get to know them. However, there have been more than a few times that we have felt like the clinic has not taken our concerns seriously (ie my ninteen month old sister developed tremors, and my recent lab work showed abnormal thyroid levels). My sisters tremors appeared around the time when we were transitioning from our old doctor to the new ones. The new doctor told my mom it was no big deal. It almost felt like he thought she was a new paranoid parent. She has nine kids, three of which have PKU, so she knows what is normal for a baby and what isn't. When my mom spoke to our old doctor she immediately got my sister in to see a neurologist. With my recent thyroid issues I have decided to take this to my regular physician, because my PKU doctor didn't see it as a problem even though thyroid issues run in my family.

    On a more positive note as I'm sure you already know we have wonderful coverage in Wisconsin. If I remember correctly the only difference between coverage for the Madison clinic and the Milwaukee one is that in Milwaukee our blood tests are provided free. The Children's Hospital clinic also does a great job of setting up events such as cooking classes, holiday parties, and baseball tailgating parties.

    I hope this helps!

    Avatar of Matthew

     I went to that same clinic for about 4 years of my childhood as I was living in that area, but I don't really remember much and I think I was too young to really understand anyway.

    I have slight tremors in my hands, they are more noticeable sometimes more than others, but most of the time pretty easy to control. I think they are related to poor diet control when I was a teenager. I also have an 80% hearing loss in my left ear and I think this was related to the diet as well. I got a bunch of tests done at Madison, but no one could really figure out what happened- they just called it tinnitus.

     I am surprised that your sister developed tremors this soon! (assuming that she has PKU and has been on the diet)

    I hope things go well with your sister and your thyroid problems. 

    Thanks for sharing!

    Avatar of Breanna

    My sisters does have PKU, and she has been on the diet since four days of age. The tremors developed when she was only a few months old. They were not typical tremors that involve the hands being shaky or unsteady. Instead they were tremors in which several times a day her leg would shake uncontrollably for a few seconds, and then it would stop. The neurologist was never able to figure out what was wrong, and the tremors went away on their own within a few months. We were never able to determine whether or not they were related to PKU.

    We have decided to not worry about it anymore, because today she is one of the brightest toddlers I have ever met LOL, and she has been developing like she should be. However it still would have been nice if at the time the new doctor who was following our care would have helped us out.

    Avatar of Grace

    I live in the Berkshires of Mass I go to the clinic in Worcester. They are ok. I would rate 6/10, they try but i am more into a holistic aproach, but few doctors in moderm medicine are up or educated on the benefits of this so what can i expect i guess. The geneticis is good she answers questions and is ok personably, she is nice, the dietition is nice as well and again she is good for what can be expected, My only real complaint would be that they do not get back to me about my levels in a timely manner all the time…sometimes I have to call and call, but They have been better recently.The coverage in Ma is good 5000 for food a year and unlimited formula. not sure if this will hlep but Mass is a beautiful place to live good luck on your search.

    Avatar of Kristi

     I live in Tucson, AZ.  We had a great doctor here, and he traveled to clinics throughout the state, except for Phoenix where they have their own doctor.  Dr. Heidenreich left AZ and took another job in another state back in '08 and since, we haven't had clinic down here.  Now, we have to travel to the only genetics clinic, which is in Phoenix.  I visit Dr. Aleck in Phoenix (2 hours from Tucson) next week for my second visit and have met him at a few PKU Christmas parties that I've gone to.  He seems very nice and knowledgeable also.  My dietitian is the same as before, and she is great–I can email her or call her.  I don't have questions very often but when I do Dr. Aleck and Melanie have been able to answer them.  There is a new dietitian that was just starting at the clinic when I visited last year and she and I were having some communication issues re. the fact that I don't keep super  close track of my phe intake day-to-day but rather keep a mental running idea of how many high vs. not so high vs. low things I eat per day.  I understand what she was expecting of me, and I understand that ideally, that I'd count very closely every bite that goes into my mouth.  But my dietitian and I have realized that with levels of 3-6 usually with my system, it works-and I realize that with maternal PKU someday I will have to be more exact.  I try to tell myself that she may be new to the PKU world and with working with me, so maybe over time we will see eye-to-eye more.  I was able to do a 3-day diet record for her when she asked and she adjusted my formula intake, so it wasn't a bad thing all around.

    As far as coverage in AZ, not so wonderful.  Back 10 years ago, we lobbied and got a bill passed for insurance companies to have to cover 50% of formula and medical food for metabolic disorders, with a $5K cap.  I've had some issues with coverage through my dad's company, as they fit into one of the loopholes.  With my insurance through my old job, I was fighting with the insurance company to get the 50% of formula covered.  I did get it approved at one point, but they didn't always follow through and I got rejected the second time around, but I was leaving the job anyway so didn't fight it much.  My husband is military so now we have Tricare and the battle was minimal and the coverage is good…just a co-pay of $9 for phlexy-10 per month and a small co-pay for dr visits (which is good, since I use a full tank of gas to get to/from my appointments now!)

    What field are you going to be looking for a job in?  Do you like certain climates/landscapes?  I grew up in Tucson and love southern arizona–we don't have natural disasters like a lot of other places are threatened with (hurricaines, blizzards, earthquakes, tornadoes).  I can deal with the heat usually, as there are plenty of swimming pools to cool off in and air-conditioned buildings.  If I want snow in the winter, we take a simple day trip up the nearby mountain and within an hour, I'm throwing snowballs around.  A lot of people have a hard time adjusting to not having green, but the beautiful mountains all around and good weather for doing things outdoors is appealing.


    Healthcare for PKU Adults in Australia now and in the future is a priorty for us to work on as the expert doctors in PKU are treating children and the adult's have been left to fend for themselves basically. The medical professionals I am sure are trying to help it isn't affective or good enough . As you all know PKU and rare metabolic disorders are specialised area of medicine and with the adults ageing there probably will be other health issues that need to be addressed. I have a meeting with the leader of the opposition party here in NSW and the local member on Monday to see if I can get some assistance. The meeting will be interesting!

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