Ryan's PKU Foundation - Holly's Blog

Author:	Holly	Created:	10/3/2008 8:02 PM
This is a unique support group started because of my experiences as the spouse of a PKU adult. There is hardly anything out there for adults with this condition and nothing for their significant others. I do not want others to feel alone in the battle to keep a loved one healthy.

Welcome....again

By Holly on 9/6/2009 6:05 PM

It has been nearly a year since I stared this blog as a support site for the loved ones of PKU Adults. While it looks like there has been hardly any activity here, quite a few people have responded via my Facebook page or in person during various PKU events. Recently, I sent information to NPKUA and hope that they might link this page to theirs. The UVA PKU picnic is next weekend as well, and along with hte NPKUA survey, I will have cards out with the info for this blog too. Now, more than ever, is the time to show support for the adults with this condition. They are being left behind and so are the ones who love them.

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Not sure what to do

By Holly on 9/4/2009 10:16 AM

It has taken me a few days to rewrite the lost blog page. The longer I waited, the more it became apparent to me that some of what I wrote was not entirely honest. It was hard to face and will be even harder to put into words.

Owen has been trying a little to eat a little more. This has been showin in attempts to eat breakfast and a evening snack. Some days he does, some he doesn't. While I am happy with the attempt, it has not been consistant enough to help with his need to put on weight. I...

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Try again later

By Holly on 9/1/2009 7:13 PM

I wrote a nice update tonight. But then I had to step away from the computer and it logged me out. I lost all of it so will try again tomorrow

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Setback

By Holly on 7/27/2009 5:35 PM

Owen had his annual appointment at the genetics clinic at UVA. He has not been there in three years because we have been communicating with his nutritionist via email nearly every month. We felt that he really needed to go see Dr. Wilson and his nutritionist because the ineveitable consequences of being underweight plus the damage that PKU does was becoming too much. Owen is suffering from true hypoglycemia as well as depression. He was able to deal with the latter but with my unemplyoment and our recent home...

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A benefit from a tick...

By Holly on 7/18/2009 3:49 PM

Thanks to a tick bite that needed to be checked by his primary care doctor, Owen has been diagnosed with hypoglycemia (and I probably spelled that wrong). We had already figured out what triggers most of the attacks and, with the Doctors advice, are working to eliminate some of them. The hardest part is getting Owen to eat 6 small meals a day. He barely eats two meals and a snack. I can see this becoming a long battle, but it must be done. I do not know of anyone with blood sugar issues and PKU. He will be seeing...

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A Long Break

By Holly on 6/25/2009 8:41 AM

Owen and I have been in the midst of a insanely long move. The closing on our house was delayed five times, but finally, we own our first home! We moved in over the weekend and internet was just hooked up.

The whole process has been very stressful for Owen. We have not checked his levels in awhile, but his nutritionist just realized that it has been ages since he has been to UVA. I hope that when Dr. Wilson hears about Owens blood sugar issues, he takes action. We also just had his annual neurology...

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Walkathon

By Holly on 5/1/2009 3:02 PM

It is nearly time for the walk-a-thon. While Owen and I are excited, we are also a but down. While I have been given two items for the raffle, there have been no donations or sponsorships coming out of our wokplaces this year. Last year I was able to get a handful of people to "sponsor" me to walk. With all that the foundation needs to do this year, we need these donations more than ever. There needs to be legislative changes in the state. Too many families are left without help to pay the high prices of required...

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Trouble resolved

By Holly on 4/12/2009 7:00 PM

The issue with Owens insurance has been resolved. It was all with Apria and Anthem quickly resolved it. Thank heavens! With us moving in one month, that was not something we were prepared to deal with.

The issues with his blood-sugar continue to be an issue. His nutritionist said for Owen to visit his primary care doctor. With this being PKU and Owen being on Kuvan, his low weight and recent low tyrosine issues, we were hoping that he would be sent to UVA. Hopefully, I can talk with her in detail...

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BIG TROUBLE

By Holly on 3/25/2009 5:31 PM

We just got a phone call from Apria saying that Anthem has refused to cover Owens formula! The reason why we are with Apria is because Anthem recommended them. They say that it is because he as to take the formula by mouth. That is why Anthem is refusing to cover. Well, Owen has been with Anthem for 7 years now and they have always covered in one way or the other. We used to have to pay for it out-of-pocket and wait for reimbursement, but for the last year it has only been a copay because of Aprias help.

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Back at 7

By Holly on 3/11/2009 6:48 PM

Daylight savings time sure has me messed up. Owen is over here whining that his computer still has not gone the one hour ahead. His levels are back down to a 7 but now his tyrasine levels are low. We are going to report that to Biomarin, just in case. Owen continues to repsond cognitively to Kuvan and we have high hopes.

We are also adjusting to my own new special diet because of my auti-immune condition. I miss tomaotes! There have been many successes with compromise and a few failures. Mashed...

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