Married to PKU (a spouse's journey)

Progress

Thu, 29 Jul 2010 13:39:00 GMT

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Post Walk and a visit...

Fri, 02 Jul 2010 13:00:00 GMT

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Its the most wonderful time of the year!

Sat, 22 May 2010 13:31:00 GMT

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What goes up, must come down

Sat, 13 Mar 2010 01:59:00 GMT

First, an apology. I have been posting mostly on Facebook so this site has been neglected. Fortunately, most of you have followed me there. This blog will soon be linked to the new Facebook site for Ryans PKU Foundation. More frequent updates of the day-to-day of loving an adult with PKU will be better for all of us.

Lately, I have been turning into the over-bearingly protective wife. That is not good for either of us, but Owen is just so fragile right now. This past month, like I feared, his body started to attack itself again. He started having low blood sugar issues again. Just this past Saturday he dropped to 48! The fact that he was still walking (more like stumbling) and talking just proved even more that his body is too used to working on its reserves. The issues we were having with his anxiety came forward again as well. This time he was the one to become upset about it and asked me to take him to his PCP. I was like a mother hen the entire time and the poor Dr had to put my in my place. I just cannot help it! I love Owen so much and seeing him suffering just tears me up.

The result of the visit is what "should" have happened back in June when we last dealt with this cycle. Owen is trying a anti-anxiety medication AND we are FINALLY getting him onto an appetite stimulant. Since the calorie supplements have done absolutely nothing, we are both praying that this stimulant will help him put on the weight he needs. All three of his remaining doctors agree that if his weight goes up, then the blood sugar issues and quite possibly the anxiety issues, will get under control. Right now his body is worn out from working with what little reserves he has. He has lived essentially in starvation mode for ten years now (only 4 of which I have known him).

What did I mean by remaining doctors? We lost his wonderful neurologist to cancer and are completely heartbroken by it. He had experience with metabolic disorders and had even written medical journal articles on them. He truley understood Owen and the world of first-generation PKU survivors. We are going to miss you Dr. Ringholtz.

A Christmas gift

Mon, 28 Dec 2009 17:05:00 GMT

With working a couple of jobs, it has been dificult to maintain this site and all the other things I do on the side. However, I had to stop in and share the great news. Owen is starting to put on weight again! It started with him deciding to start fixing up the basement. He wants a workshop down there and has been building shelves and counters. Then, it continued with that large snowstorm last weekend. He tried so hard to be outside shoveling and clearing paths, even though the effort sent his heart rate way up and his blood sugar way down. He kept at it though, and within a day I could see the difference. He was eating more and starting to develop a little muscle. This has continued and he has put on two pounds! That does not seem a lot, but his norm the last two years has been 105 and he cannot seem to get over it. Now, he is 107.

We are hoping and praying that he can keep the two pounds on. What has happened in the past is that his wieght will go up a little and then his body will quickly attack the new muscle. It does not seem to be happening this time and for that we are grateful. If is wieght goes up then his blood sugar issues and some of the other side effects from the low wieght and PKU should resolve itself. Please pray that he can keep these two new pounds on. We have a goal of 110 by his annual appointment at UVA in June.

When a PKU person is ill

Fri, 06 Nov 2009 23:36:00 GMT

We have just seen first hand what it is like when a PKU adult gets ill. Now, you must remember that Owen has complications that many PKU adults do not have (chronic low weight and hypoglycemia). However, you are still dealing with a person whose body does not work the same way ours do. You cannot give them chicken noodle soup. With their limited diets, not feeling well and not wanting to eat because of it can be a bit more risky.

Last Monday, Owen came home complaining of chest congestion and a feeling that his throat was closing up. Over the next three hours his temperature rose to over 101, he had chills and aches and worse congestion. I packed a bag just in case we ended up in the ER. By 4pm the next day (when he was able to get to the Dr.) he had bacterial bronchitis. The doctor did not rule out the flu as the start of it. He prescribed an antibiotic and sent us home. This was not his usual pcp but he did note Owens other conditions.

We went home and for the next four days it was a battle to keep foods and fluids in, get his temperature down and his cough progressive. It has been over a week and he is still recovering from this. His body had a hard time with this illness. Because a PKU persons body does not work the same way ours do, they may need extra care and extra time to recover. The nurse we worked with during this illness said that just the PKU would make him considrered a "high risk" patient.

He loves it

Sun, 11 Oct 2009 03:11:00 GMT

At the UVA picnic we signed up for a free box of the Loprfin rice. It came in and Owen LOVES it! It was really easy to measure and make. I served it with Tasty Bite brand Pubjab Eggplant. It is a spicy blended eggplant sauce that he likes. It made a fairly large meal, but he cleaned his plate. Looks to me like we will be ordering a case of the stuff. YEAH!

We went to the DC Green Fest today and came home with more samples and more recipe ideas. It was at the festival last year that we were given the smoothie recipe that I was able to modify for Owens needs. He still asks for it at least once a week. I cannot wait to try some of the natural and organic foods we picked up. Hopefully, Owen will like some of them as well.

Busy Busy

Sun, 04 Oct 2009 00:26:00 GMT

We had the UVA PKU picnic a few weekends ago. It was great to see familiar faces and catch up on the latest and greatest. I did a presentation for Ryan's PKU Foundation and the NPKUA. It went well. However, it also was a wonderful example of why Diet-For-Life is so important. Visiting with us that day was the first baby diagnosed at UVA with PKU. He is now 60 and it was heartbreaking. The brain damage was very, very apparent, he is....well, he is very low functioning. It was so sad. There was a 19 year old who is in college now, but the rest were kids and teens. I was amazed by how many new babies there were. It made me wonder if this disease is on the rise...that there are more people out there now with that recessive gene.

We had some great food and some great fun. Owen really likes the Maddy's sugar cookies and cakes and both were there. It was nice to see him have a full plate of food and be comfortable with it. We met a family from our area with a PKU boy in middle school. That makes three families in our county. Owen made friends with a couple from West Va that is being serviced through UVA as well. All around it was a great day. I wish we were able to get together more than once a year.

Owen has made little progress with his weight, but we are not seeing as many hypoglycemic moments. We are trying the Vitaflo Vita Joules calorie supplement to help with the weight issue. For his birthday this week, I made cupcakes with the Maddy's brand yellow cake mix. He also had his favorite "cheating" food, homemade pizza. I make regular pizza dough (but with unbleached flour) and his pizza has homemade sauce, Cambrooke shake-N-Cheese, a very light sprinkle of mozzerella and lots of mushrooms,peppers, chopped tomatoes on it. Recently, I also made the asperagus soup, the mushroom strata and the pumpkin custard from the "Apples to Zucchini" cookbook. These are some of his favorite foods from the book.

Welcome....again

Sun, 06 Sep 2009 23:05:00 GMT

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.

I just sat down and read my early posts. Not much has changed, excepts that I now know that anything that can be made with ground beef/turkey can be made with mushrooms too! I chuckle over that statement, but it is true. Manwich, tacos, burgers, etc...with mushrooms instead. We are still dealing with Owens weight, still working through food aversions (although he has overcome a couple of them) and now dealing with a couple of other issues (see last post). We have some questions for Vitaflo and hope to get those resolved this week as well. That is unless anyone reading this knows if the sweetener in the formula is high fructose corn syrup or something else? Owen needs to reduce the hfcs due to the hypoglycemia.

I am hoping that this year will see this blog take off a bit more, but even if it does not, I will not shut it down. Already there have been families that have been helped. Even if it is just one person whose either has PKU or has a loved one with this condition....

Please, send me questions or comments. Together we can work through the mystery of what happens to PKU children once they grow up.

Not sure what to do

Fri, 04 Sep 2009 15:16:00 GMT

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 have been trying hard to add cornstarch to as much of his food as possible. Usually, that means adding it to gatorade or koolaid but not much else. You need to use a quarter cup just to get an extra hundred calories. That is simply not enough right now. He is still having daily symptoms of low-blood sugar and the severe symptoms are still happening at least once a week.

As to the depression/anxiety. I am finding myself doing the same excuse I do with his memory. "It is the PKU and there is little/nothing I can do about it". However, this time, this excuse cannot be used, but I am scared to take the steps that I know must be taken. I need the Lords strength and words now more than ever. He is not getting better. He was trying to hide it from me after the UVA appointment. Now I am seeing it every day. It is affecting his life and as much as I try to ignore it, it is affecting mine too.

I am at a crossroads and it is a painful, personal, "deja vue" situation. I was forced, by someone whom I thought loved me, to go on anti-anxiety meds when I never needed them. The details are too painful to write. I do not want to see any person anywhere made to do something like that. BUT, it has clouded my judgement when it come to the man I love more than anything. Owen was not like this before. He says that he has always dealt with some depression/anxiety and I agree with that. But it did not affect his daily life like it is now. I want to leave the potential for medication in his court, to let it be his decision, but I am afraid of what will happen if he chooses not to seek help. This is the PKU, but it is something that could threaten his life, it has already affected it dramatically. It is something that can be treated and may go away with time.

It is all one big nasty circle really. Low weight = no reserves = hypoglycemia = increased anxiety and decreased energy = no appetite. Low wieght + depression = no reserves = all of the above equation. The cycle goes around and around. It needs to be broken. Either by getting his weight up with help or reducing the depression with help.

How do I get him to see, without forcing him? How can I show him how much these cycles are affecting his life? I love him and will see him through all of it whether he choses to get help or not, but it hurts. Knowing that he can break the cycle and get better, but doesn't...hurts. (sigh)