Showing posts with label PKU Formula. Show all posts
Showing posts with label PKU Formula. Show all posts

Wednesday, May 22, 2013

The Cost of PKU

I would like to share a little more information in honor of PKU Awareness Month.  I sometimes discuss other costs of PKU, but just realized I have not really explained the financial cost in detail.  I got my inspiration from recent posts by Kelly over at Littlest Sweet Pea .

If I had to insert a disclaimer here, it would be that all PKU families are not created equal.  Everyone has different needs, different insurances, and lives in different states where coverage and programs are not all the same.  And although most children Carson's age are picky eaters, not all of them are, and not all are as picky as Carson!  Also, there are thankfully several options available for formula and low protein foods.

Currently, Carson is covered under my insurance plan at work, which is pretty fabulous.  However, it is far from perfect for the coverage he needs. It does not cover his nutritionist visits (and they are the most important people in our lives!), which so far have been $46 per visit (we go twice a year).  And because Alabama does not have a policy to provide medical foods, unless you qualify for Medicaid or WIC (which we don't right now), we have to pay for Carson's formula.  The most important part of Carson's diet is his formula.  The formula gives him all the protein he needs minus the part his body can't process, therefore it is specially made.  He drinks the brand Phenex-2.  Presently we get one case a month of 6- 400g cans, which is about the size of a small can of powdered baby formula, in comparison.  My insurance pays 70% after a $50 deductible, leaving 30% for us to pay, which amounts to just over $130 per month!  This is our biggest expense.
   

I make him a loaf of bread about every 2 weeks, and it has several ingredients:

1 cup Wel-plan Baking Mix (made of cornstarch and wheat starch):  400g box for $9

1 3/4 cup wheat starch: CamBrooke Foods Wheat Starch is a 6lb box for $17.99 (I think one of these lasts me about 3 months)

3 tbsp Metamucil (I buy the largest container I can find, Original flavor and always brand name): 29oz container at CVS (which is where I had to buy it last) was $16.29

2 tbsp Coffeemate powder:  22oz for $4 at Walmart

2 tbsp sugar

1 1/2 tsp yeast:  Fleischmann's Active Dry Yeast 4oz jar for about $4.50

3/4 tsp salt

1/2 tsp molasses

Most of these ingredients last 3 months, 6 months, some maybe a little longer, so it's hard to calculate a total cost.  That comes to about $50 for everything, so if I bought everything 4 times a year, that's $200 (but it's likely closer to $100).  That's probably only a little more than most people who buy a loaf of bread at the store every week.  If I wanted to buy a low protein loaf already made it would cost $11.99 for ONE loaf from CamBrooke, plus since it is a cold ship item you are required to spend at least $50 minimum, then pay over $20 shipping on top of that.  See why I make the bread myself?  Plus it tastes a whole lot better!

The most used items in my house are CamBrooke's MixQuick, which I use to make Carson's chocolate chip cookies each week, and sometimes for pancakes.  A 6lb box is $34.49!  That is by far the most expensive food item I buy.  I use Chocolate Dream Dairy-Free Chocolate Chips, which I buy at Whole Foods in Birmingham, and they are about $5 for a 12oz bag (maybe twice as much as regular Nestle chips).  The other big food item I buy is low protein pasta.  He eats it almost every day.  I buy the Loprofin Fusilli from Nutricia North America, which is $11 for a 500g box.  A box of Great Value at Walmart, about the same size, might be less than $2, I don't remember exactly.  Carson eats a whole cup of pasta each time now, so one box does not last very long anymore.  These are his main staples.


Another comparison item, one I can buy at Walmart, is Biscoff spread.  This is his peanut butter alternative (which is much tastier than peanut butter!) and he uses it most days on bread to make a sandwich.  A 14oz jar is almost $4; in comparison, a bigger 18oz jar of Jif is less than $3.

Carson's only other sandwich of choice is a grilled cheese.  CamBrooke's American Cheese Slices are about $11.99 for a bag of 32 slices, versus the brand I buy for the rest of us, Velveeta, which would cost maybe $6 for the same number of slices.

The only precooked food I buy Carson is CamBrooke's Mini Pizza Pockets.  That should have been listed under his main staples as well!  The best comparison I could find is Totino's Pizza Rolls.  A bag of them, twice the size of one box of Carson's pizza pockets, was $3.29 at Target.  That contains 40 rolls.  A box from CamBrooke contains only 6 (obviously larger) rolls, for $9.99 per box.  One box lasts Carson 3 days (meals).  He eats them twice a week, so that amounts to $29.97 a month (3 boxes).

Most everything else he eats is typical stuff like we eat that we can buy anywhere, like cereal and fruit and vegetables.  But make no mistake...this is an expensive diet!

As I mentioned before, there is no assistance from the Alabama government on medical foods (which are provided to everyone, regardless of income, in many other states), nor is there any help for the special low protein foods he has to eat to fill his tummy without getting too much protein.  Insurance does not pay for those, much like a diabetic having to buy special foods (except much more expensive and much more volume!).

There is a bill that has been through Congress a few times but has yet to be passed or approved.  Every year since its inception the bill has been lobbied by various organizations supporting PKU and other inborn errors of metabolism who require such diets.  I believe the opportunity for the current session has already ended, but please click here to learn about the Medical Foods Equity Act .  Contact your local members of Congress and help support this cause in the future!



Tuesday, May 14, 2013

PKU Awareness Month


Educate.  Advocate.  Inspire.

May is PKU Awareness Month!  I want to take a few minutes to shine some light on this subject that
most people know nothing about.  I have found some great bloggers recently who have really given me some great inspiration, about both PKU and life in general.  Check out my Favorite Blogs list and pay some of these folks a visit!

Feel free to check out my PKU tab at the top of the page to read some detailed info about PKU and our personal experience with it (I have updated it just a bit today).  We have such a whirlwind of things going on in our life right now, just finishing up our first Autism Awareness Month, and then running right into the same for PKU!  I hope everyone will take a little time to read about this rare disorder and tell other people about it.  Education is the first step!

I hope to devote more time to working on this blog in the near future, to make it more helpful, supportive, and useful.  I plan to add more info about traveling with PKU, which seems to be a highly searched topic, as well as eating out.  I don't have much of a need for recipes right now, so I probably won't be very helpful on that subject, though I love to read them anyway!  I also have a dream to start some kind of local PKU group.  Alabama has only a small number of people who have PKU, so I know it has not been easily done.  I mainly just want to create a place where everyone in Alabama can go to find resources, information, and support.  Any advice or wisdom would be appreciated, if you would like to chime in.

Carson and his PKU Diet


I like to give an update from time to time about Carson and his diet.  (note:  Some of this info is also included on the PKU tabbed page, in case you don't want to read double!)  Lately there hasn't been much to update.  He is still picky as ever and not much has changed about his diet.  He has finally had a little growth spurt, after remaining the same size for about a year, so I think his diet needs might change a bit soon.  He transitioned well from his PKU formula for infants and toddlers, Phenex-1, to the adult formula, Phenex-2.  He did not give me any problem about drinking it, and right now he still wants it and asks for it all the time.    I also know that if his taste for it ever changes, there are so many options out there now for him to choose.

He still only eats bananas and applesauce for fruits, and broccoli and cauliflower are his only veggies.  He likes tomato sauce, so he eats lots of pasta with sauce and I even made alphabet soup.  Pasta serves as a great facilitator for new food tries (as does lopro rice).  I made pesto sauce and he loved that; I also make stroganoff from time to time, mushroom soup by itself on the pasta or rice, lopro mac and cheese, or veggie broth (I don't think he was crazy about that last time).  He loves his bread now, thank goodness, and will eat a sandwich any time (lopro grilled cheese or Biscoff spread), plus I make rolls and breadsticks out of it for him to have with meals, especially when we eat rolls too.  He eats homemade lopro chocolate chip cookies every day.  It's a struggle to keep those baked!  That's his favorite!  And for breakfast, his no-fail Chocolate Cheerios!  Or sometimes lopro pancakes...

For a while he would eat blueberry muffins, but this last batch has been allowed to ferment.  He refused to eat them after just one bite.  And so we continue with the normal frustrations of a young child and his picky eating habits...just with a special diet.

His current weaknesses, or higher phe foods that could cause him trouble in the future, are Mexican food and potato chips.  We have a fave Mexican restaurant in our town, Buena Vista (shout out!), where he loves to eat tortilla chips with salsa, and a side of Mexican rice.  He also loves potato chips, and occasionally is allowed to eat tater tots or hash browns.  These are the only forms of potato he likes!  I guess we should be thankful!  On those days, we just have to figure something low in phe he can eat to make sure he doesn't get too much.

We are very blessed, though, that he does not seem to mind right now if we are eating something different from him.  I try to downplay the fact that Maggie eats the same things we do by being very discrete.  I have noticed that Carson watches on occasion, but he has yet to react or say anything about it.  We have tried to never make a big deal out of it, and our rule has always been "no eating off each others' plates".  If I have something Carson can eat, I put it on his plate myself, I do not let him reach onto my plate, so I do the same thing with Maggie.  It still works...so far.  Maggie has come along to shake things up now! 

To see what products we currently like to use, as well as an embedded link to find low protein foods, click on my PKU tab above. 

Happy PKU Awareness Month!  Don't forget to Share the Love!

Thursday, May 31, 2012

PKU Awareness

Since today is the last day of PKU Awareness Month, I wanted to do a blog post and share it on facebook to remind everyone I know and just get the word out about this rare occurence and how it affects real people...people you know. If you have time please be sure to read as many of my posts about PKU as you can, as well as the description on the right side of the page. Even if you've already read it, read it again. Everyone who cares for my Carson or anyone else with PKU needs a reminder once in a while.

I want to reflect for just a moment on the purpose of this blog. When I first started writing on this blog a few years ago, I was desperate for a connection, to find anyone out there with whom I could relate because I felt like we were so alone. That was a successful endeavor. I have happened upon several blogs of people and families who also deal with PKU. One of the first people to send me a message was Shane Austerman. He and his wife and son live in Iowa, many miles from my home here in Alabama, and their son, only 4 months younger than Carson, also has PKU. I have connected with this family, with Jackee, I follow their blog, we have communicated by email and send Christmas cards each year. For that, I am so thankful. To have other people's experiences to read and to share means so much to me.

Tuesday, June 29, 2010

Happy Trails!


Our Western Adventure began on Friday, May 28th. We (Marty and I, Carson, Nana and Paw-Paw[Marty's parents], Grandma Ravenna, and Nanny) boarded a plane with about 30 other people in our group, headed for Salt Lake City. This was the worst flight I had ever been on in my life! Add to the drama that I am more scared of flying than when I was younger. The first take-off was a little rough to me, but I was doubly enraged when I found out we were on one of those continuing flights. A couple of hours later we landed at Houston Hobby! We were just there 6 weeks ago. I said, "You mean I have to do this AGAIN?!" Meaning that we would take off and land a few more times. I told Marty I didn't think I could do this! We took off, much smoother this time, and landed again in Albuquerque, New Mexico. Then we finally made it to Salt Lake, after I thought we might land in Phoenix first! I was happy to be landing in our final destination, finally, but this was the worst part. There was a front coming through, coupled with the mountain range, which made for the worst turbulence many of us had ever experienced. That plane bounced and bumped and swayed, and we had to circle the airport again before we could land because of "traffic". That was horrible. I was ready to get that sucker on the ground! Thankfully, Nana was holding Carson, although if we were going to crash and die I would rather be holding him, but I was on the verge of having a panic attack and reaching for the barf bag! That's the first time I ever actually felt sick on an airplane. I may have shouted several hallelujah's and praise the Lord after we finally landed safely on the ground! I told Marty I was never going to fly again (for the fourth time, I'm sure!).

We boarded the bus, our home for the next 10 days, with our driver and soon-to-be pal, Randy. Carson instantly loved riding the bus because of the big windows through which he could see all the cars passing by.

It was rainy and cold outside, so our tour of Salt Lake was very wet. We drove on to Park City, Utah, where the weather had cleared up, and spent the evening shopping and eating (first stop: Wal-Mart!). Our hotel there was very nice and we welcomed some sleep.

The negative about the long bus trip is packing up and moving to another place so many times. Having to get up early to do this doesn't leave time for enough sleep, and packing is alot of work! Hence, I am still very exhausted. The next day we headed for Jackson Hole, Wyoming.




While in Jackson Hole, we stayed at the wonderful Wort Hotel. We laughed at Marty's parents because they stayed in a Cowgirl Suite! Diane and Tommy, our travel agent and her husband, stayed in the Silver Dollar Suite, which was REALLY nice. We had good breakfast there, and everything was wonderful.




Our first night in Jackson Hole we experienced a chuckwagon dinner, show and ride at the Bar T 5. It was fabulous! Carson, however, did not agree. The man with the mustache talking into the microphone scared him at first and he screamed. He also screamed every time the crowd cheered or said "Yee-haw!" He seemed terrified! It was so pitiful! He was just really sleepy. By the end of the night he was accustomed and having a good time. We ate outside and had great entertainment. Indians chased us on their horses. They put on a good show and the music was wonderful. The band played and sang very well and had great harmony. We were really impressed. It was also VERY cold that night, so we had to snuggle up!



My favorite activity of the trip was our horseback riding adventure in Jackson Hole. Marty and I rode horses with about 5 others from our group while the rest of the family kept Carson for us. It was rough riding up the mountain, and harder coming down, but it was well worth it. We saw some gorgeous views and had alot of fun together. Marty's horse, George, was a real character. Of all the people riding, he may have been the least experienced and got the craziest horse! George would just wander off to eat grass whenever he felt like it. Marty asked our guide, Colby, "Did you not feed this horse before we left?!" It was hilarious! My horse, Ringo, would always follow George if we were ever behind him on the trail. Sometimes George marched to his own beat. One time we crossed a mud hole, well all the other horses did. But George decided he would go around it, and of course Ringo followed! I decided since they were named after Beatles, they thought they were rock stars and were too good to walk in the mud! LOL!

We left Jackson early the next morning to make our way toward Yellowstone National Park. Along the way we made a tour of Grand Teton National Park.
The Teton mountains were spectacular, as we could see from our horseback ride. We saw many beautiful views of the snow-capped mountains and reflective pools along the Snake River


While in Yellowstone, we saw many amazing sights of God's creation. It is one of the most unique places we have ever been. I must admit I have never experienced feet of snow, frozen lakes, and steaming vents all in one place! We saw alot of snow on the side of the road. The funniest thing that happened was when we stopped beside a frozen, snow-covered lake for a photo op. Some brave souls climbed on top of the snow to get their picutures made.


Some should not have been so brave!

When we got to the Lake Yellowstone Hotel, the lake was still frozen over!
It was SOOOOOOO cold down there at the lake that I could barely stand it! We saw many hot springs steaming and beautiful colors of water and rock. We saw waterfalls and buffalo and elk and even one moose! We took the Grand Loop Tour and saw Old Faithful and other geysers. Our tour guide that day talked nonstop and we were all about to pull our hair out by the end of the tour! One little break so Carson could take a nap would have been nice! He was a nice man, though, I just wish he would have given us a little break. The dinner in the restaurant at the hotel was very good, and I loved the atmosphere. The public area was very classic and spacious with plenty of sitting room to visit (or play cards!). It was just the rooms that were too small for my comfort. After 2 nights in that old hotel with no TV, having nightmares, and sharing a rather small bed between the 3 of us, I was ready to get out of there.





After leaving Yellowstone, making our way toward South Dakota, we stopped in Cody, Wyoming to take a trolley tour, then some toured the museum while others went shopping. We went to hunt down a tyrosine supplement for Carson that was prescribed the day before we left! Carson's tyrosine, one of his other amino acids, was low and the doctor wanted to boost it. It took forever before we reached civilization to have a chance to look for this, and thankfully we tracked it down at a health food store. Randy was so awesome to drive us around looking for this. Anyway, I felt alot better after that. Once we left the beautiful little town of Cody and learned all about Buffalo Bill,
we made our way to The Ranch at Ucross to spend the night. That was the most beautiful place I have ever seen in my life!!! We felt like we were in heaven after being in that old Yellowstone hotel. The weather was warm, everything was so pretty, it was comfortable, spacious, and even though we still didn't have a TV in our room, it was WONDERFUL!!!
The food there was the best we had so far, and they had a room where you could go watch TV and even get on the internet! I went there and got on Facebook, of course, and showed some people this blog who had never seen it before. We had so much fun!


After our lone, glorious night at the ranch, sadly, we had to move on. We made our way to South Dakota. We spent 2 nights there at the Best Western Four Presidents, which was very uniquely decorated with log banisters and deer or elk head. However, I have no pictures of it! We visited Crazy Horse (in the rain!), and Marty said it looked the same to him as it did when he saw it 16 years ago. We also saw Mt. Rushmore and witnessed the lighting ceremony one night. We took an 1880 train ride in the Black Hills, then we went through the Badlands, Custer State Park, and we ate at Wall Drug Store.






The funny thing that happened on this leg of the journey was at Custer State Park. We took the Wildlife Loop Road and saw lots of antelope, elk, deer, and buffalo, but we also came to a place where there were burros. Yes, donkeys that walk up to cars and stick their heads in looking to get fed! Nanny called them "beggar donkeys"! I couldn't pass up the opportunity to get a picture of this field full of them, and because it was so beautiful as well. .
When I got out there, I realized there was also a prairie dog town out there, and I was so excited! You could hear the little guys barking all over the place, so I went back to the bus and got the video camera. While I was standing there filming this, Marty yelled for me to look to my right, and when I did I saw one of the donkeys had walked up right beside me and I screamed! It was hilarious! No pictures of that, just the funny video.

From South Dakota, we rode the bus all day to get to Estes Park, Colorado, our last home away from home for the trip. We stayed there 2 nights. The first night, we had another "chuckwagon" dinner, which was nothing like the first. It was at the Aspen Lodge. The food was grilled out and it was tastier, but the entertainment and atmosphere were lacking. It was so cold and Carson and I were both already so sick with stuffy ears and runny noses that we did not ride the "wagon". It wasn't a covered wagon anyway, and all they saw were a couple of elk. We stayed by the fire and listened to an old man sing and play the guitar.


The next day we toured Rocky Mountain National Park. We enjoyed the view of many snow-covered mountains and snow piled up above our heads. It was cold at the top, over 12,000 feet high. After coming down, it was warmer and we shopped and ate in Estes Park. It's a very nice town, but once again, we got rained on! It came a full-blown thunderstorm on us there! And once again, our awesome bus driver Randy showed us how awesome he really is. He took Marty to get some more diapers or whatever we needed. Later we were on a photo stop at the Stanley Hotel, and I realized I left my cell phone in one of the shops. It was only a few blocks, so Marty took off on foot. When Randy found out what had happened, he drove over there, stopped in the middle of the street, and honked for Marty to get on the bus. He was great!



Randy looking cool in his hat and boots, waiting for us to hurry and get on the bus!
On the last day, we rode to Denver to drop off at the airport for our flight home. I was very sad. It was a long trip and I was very tired and sick, but I was going to miss spending every waking minute with these 30 people for 11 straigt days. I especially knew I would miss the ones I might not see for a long time, or ever again. Randy pulled over and gave us a very touching farewell speech. Some of our group had witnessed to him and been an influence on his life in the short time we knew him. He had never met anyone like us before! I cried, but I tried to hide it. It was just so sweet! We took up a nice tip for him and signed a card thanking him for all he'd done. It was a bittersweet goodbye, because I am pretty sure I will never see him again. Anyone out there praying, remember Randy the bus driver from Colorado, because he is having some health issues too.

I know this is the longest post I've ever written, and probably the longest you've ever read, but I wanted to tell the story of our trip for those out there who have not been able to hear it or see our pictures yet. It was an amazing journey with amazing sights and amazing people, and there is no way I could have condensed 11 days' worth any shorter! That's why it is so long and has taken me 2 weeks to finish it! We made alot of great memories and funny stories that we can share and cherish for years to come. The only problem I have is that poor little Carson will never be able to remember what a great time he had, or how wonderful all the people were to him and how much he was loved and adored. He made 2 really close buddies, James and Cheyenne. At least Marty and I will never forget how wonderful they were to Carson and to us, and we will be able to tell him about it in the future. We are so thankful for all the people who helped us along the way, and boy did we need it! We are so blessed to have spent this time and shared this experience with 2 of our grandmothers, Grandma Ravenna and Nanny. It is something that we all will never forget, I'm sure.

Here are some of my favorite pix of Carson's favorite activities on the trip:

"Fixing" people's hair
"Sleeping" in his Pack n Play!
Walking Dada
Learning to climb from his new buddy, James
Examining fossils (my future archeologist!)
Eating...Nanny's arm, anyway!
Looking out windows, whether plane, train, or bus
Crawling on hotel floors
Playing with his shadow (a new discovery)
Helping his "girlfriend" Cheyenne and the ladies play Farkle

As for my travel tips, my advice is...good luck! Honestly, I packed basically the same as I did for our much shorter trip to San Antonio. The main difference was the food. To pack enough food and formula for 12 days was a very daunting task. All along I had planned to do the same as before with the formula, measure out the amount for each day in plastic baggies. The night before the trip, I realized this was not going to happen. I finally wised up and decided to just take the cans and the scale with me. I do not yet have a pocket gram scale, so I had to bring the regular one, which has a glass top on it. I had one of those bubble bags left from Carson's formula shipment, and it fit perfectly.

I also struggled with how to pack the baby food. Carson eats 3rd foods, which only come in the glass jars. I counted up how much of each thing he would need and had a box that held them all stacked 2-high. I put a thin magazine in between the 2 rows, and had each group of jars in a plastic bag with bubble wrap stuffed in between the jars. I taped up the box and laid it so it would sit upright when the suitcase was upright. I put the scale above this box, and fit some cans of formula and a pack of diapers. This was our smallest suitcase, which was small enough to carry on the plane. That way we could make sure nothing happened to it and be responsible for it ourselves. It was unbelievable how much better it worked than I had imagined. I got up every morning and measured and mixed Carson's formula, and Dada did it a few days too. When we first got off the plane, I did realize I forgot one important thing...a tablespoon! So when we made our first stop at Wal-Mart, that was on my list. We also bought dish detergent and a bottle brush and had to wash the bottles and dishes in the bathroom sink again.

Several places had a refrigerator in the room, but of course the old Yellowstone Hotel did not. So while we were there for 2 days, we put ice in our little ice bucket and packed the open jars of baby food in there at night. The hotel kitchen allowed us to keep our blue ice pack in their freezer at night. We would give it to them at dinner and pick it up at breakfast the next morning. I had been so worried about this before-hand, but in the end it all worked out just perfectly. I said we could have just put it outside in the snow! Ok, it wasn't hardly cold enough...only in the lower to mid 30's. The ranch did not have a fridge in the room, but when we asked them about it, they actually brought one to us! So don't be afraid to ever ask for what you need. You will be surprised!

We did end up buying diapers on the last leg of the trip, but of course we had the fabulous Randy to take us anywhere we needed to go! Another pack of diapers just would not have fit in all our luggage. Since we took the stroller to the airport gate, it counted as a checked bag. With Southwest you get 2 free per person, but Carson doesn't get any because he is not a ticketed passenger. So I had to limit our packing to 3 checked bags, and then we put the food and some formula and diapers in that carry-on suitcase. Luckily, they didn't count our carry-on bags. I think I read the diaper bag doesn't count as one, but if it did we would have had too many. I didn't carry a purse, I just used the diaper bag and camera bag. We only used the stroller a few times on the trip. We kept it under the bus, but I sure am glad we had it for those few times. Of course Carson got held and carried alot, considering there were 30 adoring adults (and one teenager!). It has been quite an adjustment with Mr. Spoiled Rotten being back at home. He spent 11 days sleeping with Mommy, being free from car seats, and being held and played with all the time. But we are coming along just fine.

It was alot of work all along the way, but it was well worth the effort. I felt the most stressed out when packing before we left. I let everything worry me about what to take and how it would all fit, but of course it turned out fine. I had extra space left at the end of the trip to store souvenirs. Would I do it again? Not anytime soon, but sure! Maybe one day...