Monday, May 27, 2013
Saturday, May 25, 2013
#PKU Stinks!
Lily is 3 1/2 and is completely aware of her PKU and all of the restrictions that goes with it. She knows that she can't have certain foods and that her food needs to be weighed and accounted for. She knows that we keep track of her phe and are continually making her drink her "milk." The strange thing is that it doesn't bother her, much.
Lily's great about all of the restrictions. We don't put her dietary restrictions on the rest of the family. This PKU journey is our family's but I don't think that it's right to make the other kids have to change their diet, so that Lily doesn't feel left out or have her feelings hurt. She's going to encounter foods that she can't eat and I feel that it's my duty to teach her that and show her how to adjust.
With that said, Lily's gotten into some strange habits regarding our food. She likes to smell our "regular" food! Anytime, we're eating something new, Lily asks "Can I smell it?" At first, it was really weird. I mean, who wants to smell someone else's food. And do I really want to eat it after Lily has had her nose all over it? But because she's so cute and asks so nicely, I let her smell my food. Then I started to wonder, is this just the curiosity of a 3 year old or is it because her foods smell and taste so different from mine?
To me, Lily's PKU food is much blander than our food. I'm sure you can add more seasonings and spice things up a bit. But Lily is still 3 and doesn't like "speecy" food! We no longer think it's weird that Lily wants to smell our food, but other family members (grandparents, aunts, etc) have noticed Lily's strange question. So, now I"m wondering....how many of you have had your PKU kids ask to smell your food?
Maybe, it's just our little Lily being curious because she knows our food is off limits.
Lily's great about all of the restrictions. We don't put her dietary restrictions on the rest of the family. This PKU journey is our family's but I don't think that it's right to make the other kids have to change their diet, so that Lily doesn't feel left out or have her feelings hurt. She's going to encounter foods that she can't eat and I feel that it's my duty to teach her that and show her how to adjust.
 |
| Here's Lily at the March for Babies Walk! |
With that said, Lily's gotten into some strange habits regarding our food. She likes to smell our "regular" food! Anytime, we're eating something new, Lily asks "Can I smell it?" At first, it was really weird. I mean, who wants to smell someone else's food. And do I really want to eat it after Lily has had her nose all over it? But because she's so cute and asks so nicely, I let her smell my food. Then I started to wonder, is this just the curiosity of a 3 year old or is it because her foods smell and taste so different from mine?
To me, Lily's PKU food is much blander than our food. I'm sure you can add more seasonings and spice things up a bit. But Lily is still 3 and doesn't like "speecy" food! We no longer think it's weird that Lily wants to smell our food, but other family members (grandparents, aunts, etc) have noticed Lily's strange question. So, now I"m wondering....how many of you have had your PKU kids ask to smell your food?
Maybe, it's just our little Lily being curious because she knows our food is off limits.
Wednesday, May 22, 2013
Lily's #PKU Menu Plan
I've been trying to get a little more creative with what we feed Lily. Since we do receive some assistance with her PKU food, we do have the luxury of ordering food from Cambrooke, Maddy's, and other low protein manufacturers. I'm sure that because we have these awesome foods in our home, I don't really attempt much in the low protein department. Sadly, I do rely heavily on the packaged foods. Lily loves them, I know exactly how much phe she's getting, and to be honest- they're pretty easy to make up.
My goal is to become better at making more foods and using the 5 low protein recipe books that we have! I've always wondered what a typical menu plan looks like for other PKU families. What do you eat for all of your meals? Do you try to make the PKU food similar to the "regular" food that you're serving? Are most of your PKU meals made from scratch or do you use a lot of store bought foods? How much "regular" do you put into your PKU meals?
Since I have these questions, I thought that other families might also. So, here's what Lily's weekly menu plan looks like. Since we're finishing up track season and starting softball season, we've been doing WAY TOO MUCH fast food, so there hasn't been a lot of home made meals in the past couple of weeks. Don't worry though, track just finished and school is almost over, so the madness of running everywhere is starting to slow down! Thank goodness.
I have found a new site that has some AWESOME recipes for PKU. It's called Cook For Love. Now that things are slowing down and I've realized that I make Lily the same things over and over. I'm going to make more of an effort to try new recipes and not rely on premade items so much. Wish me luck!
Here's a little more information about Cook For Love....
My goal is to become better at making more foods and using the 5 low protein recipe books that we have! I've always wondered what a typical menu plan looks like for other PKU families. What do you eat for all of your meals? Do you try to make the PKU food similar to the "regular" food that you're serving? Are most of your PKU meals made from scratch or do you use a lot of store bought foods? How much "regular" do you put into your PKU meals?
Since I have these questions, I thought that other families might also. So, here's what Lily's weekly menu plan looks like. Since we're finishing up track season and starting softball season, we've been doing WAY TOO MUCH fast food, so there hasn't been a lot of home made meals in the past couple of weeks. Don't worry though, track just finished and school is almost over, so the madness of running everywhere is starting to slow down! Thank goodness.
Here's a little more information about Cook For Love....
Cook for Love is a non-for-profit dedicated to the PKU community. Our mission is to empower members of our community to improve their health through cooking and education. Our goal is to dispel the myth that, given severe dietary restrictions, people on low protein diets must settle for less.
Cook for Love evolved out of sheer stubbornness (the Irish in us). As moms, we refused to accept that our children had to eat foods that we did not find palatable. Providing nourishment is one of the most basic responsibilities of any parent. The stakes are just so much higher and the road so much more complicated when your child is diagnosed with PKU. When we received that devastating phone call, we too were lost and did not know where to begin. The kitchen seemed like a good place to start. Cooking for a person is an expression of love. Never is that statement more true when your child’s ability to reach their potential is dependent upon the foods they eat.
Cook for Love is committed to creating low protein foods that taste delicious. We struggled in our kitchens when our children were diagnosed with PKU and by sharing our recipes we wish to help you avoid some of the frustration we experienced. We provide step by step instructions and videos for making meals and treats that you and your loved ones will truly enjoy.
Whether you love to cook or are doing it solely out of love, please join us as we share new recipes and our experiences.
Tuesday, May 21, 2013
Meatless Monday Link Up #6
We had two great recipes added to our Meatless Monday collection last week!
Pink Recipe Box made a delicious
Caprese Quick Bread.
Here's the other recipe from Pink Recipe Box.
These Oaty Chocolate Chip cookies look AMAZING!
Don't forget to grab your bling! The link is found on the main page
Friday, May 17, 2013
The Economic Side of #PKU Part 2
There are not that many people who have PKU in the United States. Approximately 14,500 people in the United States have PKU. Of that 14,500 people, 5,500 of them were not diagnosed at birth. Those 5,500 were not started on a proper diet immediately and are now living in dependent group homes or mental institutions! There's also an unknown number of people who had PKU but it was never diagnosed, because they were born well before the newborn testing. Most of these undiagnosed people were just labeled "Mentally Retarded".
Knowing this information helps to put the next part into perspective. The other day I mentioned that having PKU is expensive for families. Having to buy low protein food and formula is tough. But it would be even harder for families and society to have to take care of a person who has not had their PKU treated.
The following information can be found on the National PKU Alliance website.
Even though PKU is expensive, it would be even more expensive to take care of PKU patients who did not maintain a low protein diet or drink their formula. Let's think about my state, Illinois. In Illinois, the PKU formula is provided to my family for free. Yes, I know that it's paid somehow, probably through the taxes that you and I pay. (Thank you) I'm sure right now, you're thinking- great another state run program that's helping some other family but not mine. But please read on....
The annual cost of medical formula for PKU averages $7,100 per year, per person. However, the cost of diagnosing and treating the PKU is extremely less expensive that treating someone who was not properly diagnosed. Here's the break down.
Cost per infant for newborn screening (varies by state) $50
*Covered by insurance companies
Number of newborn screenings each year 4 million
Annual cost of newborn screening for all $200 million
Annual cost per person for medical formula $7,100
Number of Americans needing formula 20,000
Annual cost of formula for all Americans with PKU $142 million
*Not all states pay for the formulas
Annual cost of Nursing Assistant care in residential care center $50,000-$100,000
Number potentially requiring care because of non-treatment 20,000
Annual cost of managing disable patients treated too late $1-2 billion
Can you see that even though PKU is expensive, it could be so much more? Imagine if there was no newborn screening or no insurance or government help. The ideal annual cost is only $7,100 compared to the non treated cost of $50,000-$100,000.
When I first saw these numbers, it blew my mind. I know that I would never not treat my children, but guess what, there are some families that just do, for a variety of reasons. Plus, there's countries that don't provide newborn screening! So, now do you understand why newborn screening is essential? Please use this information to be more aware of PKU and to urge your state to screen for more diseases and disorders.
Knowing this information helps to put the next part into perspective. The other day I mentioned that having PKU is expensive for families. Having to buy low protein food and formula is tough. But it would be even harder for families and society to have to take care of a person who has not had their PKU treated.
The following information can be found on the National PKU Alliance website.
Even though PKU is expensive, it would be even more expensive to take care of PKU patients who did not maintain a low protein diet or drink their formula. Let's think about my state, Illinois. In Illinois, the PKU formula is provided to my family for free. Yes, I know that it's paid somehow, probably through the taxes that you and I pay. (Thank you) I'm sure right now, you're thinking- great another state run program that's helping some other family but not mine. But please read on....
The annual cost of medical formula for PKU averages $7,100 per year, per person. However, the cost of diagnosing and treating the PKU is extremely less expensive that treating someone who was not properly diagnosed. Here's the break down.
Cost per infant for newborn screening (varies by state) $50
*Covered by insurance companies
Number of newborn screenings each year 4 million
Annual cost of newborn screening for all $200 million
Annual cost per person for medical formula $7,100
Number of Americans needing formula 20,000
Annual cost of formula for all Americans with PKU $142 million
*Not all states pay for the formulas
Annual cost of Nursing Assistant care in residential care center $50,000-$100,000
Number potentially requiring care because of non-treatment 20,000
Annual cost of managing disable patients treated too late $1-2 billion
Can you see that even though PKU is expensive, it could be so much more? Imagine if there was no newborn screening or no insurance or government help. The ideal annual cost is only $7,100 compared to the non treated cost of $50,000-$100,000.
When I first saw these numbers, it blew my mind. I know that I would never not treat my children, but guess what, there are some families that just do, for a variety of reasons. Plus, there's countries that don't provide newborn screening! So, now do you understand why newborn screening is essential? Please use this information to be more aware of PKU and to urge your state to screen for more diseases and disorders.
Wednesday, May 15, 2013
The Economic Side of #PKU Part 1
Having PKU is expensive for many reasons. In order to control the PKU and not develop permanent brain damage, a person with PKU must maintain a low protein diet for life and drink their metabolic formula for life. Depending on the state that a person lives in, determines just how expensive this is. Currently, most states don't mandate that insurance companies cover the metabolic foods and formula that PKU people need to survive. Now if you needed to control your diet for diabetes, insurance companies cover the insulin medicine that you would need. BUT if you needed to control your diet for PKU, insurance companies would not cover the medicine (medical grade food & formula) that you would need. Does that seem fair?
Just to put things into perspective, here is a list of typical foods that a PKU person would eat daily and the cost of the food items compared to "regular" food items....
PKU Foods/Cost "Regular" Foods/Cost
Low Protein Linguine- $10 Linguine- $3
Low Protein Bread Loaf- $12 Loaf of Bread- $4
Low Protein Pierogoi- $17.50 Box of Pierogi- $4
Baking Mix- $29 Flour- $3
Low Protein Brownie Mix- $12 Brownie Mix- $3
8 Low Protein Bagels- $12 Bag of Bagels- $4
25 pieces of Low Protein Chocolate- $22 Big bag of mini chocolate bars- $6
Now there's a lot of "regular" foods that PKU people can eat, but the foods still need to weighed and have the protein/phe levels known- veggies, fruits, coconut milk, coconut yogurts, margarine, certain salad dressings, hard candies, etc. Some people with PKU have a high phe tolerance and can put in a small amount of white bread and cow's milk into their daily diet.
Lily has a low phe tolerance of 295 mg per day. Thomas is currently at 50 mg per day, but he's still a baby and his number is expected to rise. Since Lily has a low tolerance, we rely heavily on the low protein foods and fruits and vegetables. Currently our insurance does not cover Lily's food. However Illinois hospitals have a division for families to provide food at a discounted cost for qualifying families. Not all states have this. So imagine if you live in a state where your medical food isn't covered, how do you get by? It can be really tough.
Here in Illinois, our medical formula is provided for free. Each month, I call the state office and order our formula. It gets shipped from England, to New York and then to us! I am extremely grateful that I live in a state that provides the formula. Formula is not covered under insurance and is extremely expensive. I can't go to a store and just pick something up. PKU formula is medical grade and provides protein to help my children grow, but it doesn't have phe in it (the type of protein that my kids can't have). If ordering the formula online, it costs anywhere from $67-$95 per can! My kids go through 2 cans each week, each kid! I'd be spending close to $300 each week on their formula. Plus it's not like baby formula. They need to drink their formula every day for life, in order to meet all of their dietary needs!
This is just one perspective of PKU economics. We also take weekly blood draws and them sent to figure out the phe levels. Plus our monthly drive to the clinic and cost of the appointment.
Please don't read this and think that I wish my kids didn't have PKU. Honestly, sometimes I think about it and know that it would be easier that way. But my kids are mine and are perfect just the way they are. Their genetic disorder is part of them and has given us so much. I'm beyond feeling the guilty part and hating the diagnosis. I'm at the point where PKU is just part of our family, expensive or not! Don't read this and think that I'm wanting your sympathy. I'm just wanting to educate everyone about PKU, all aspects of it. I know that having PKU children can be challenging, but there are so many other disorders and diseases out there that are much more difficult. I'm grateful for the life that I've been given, and know that I'm right where I'm supposed to be!
Just to put things into perspective, here is a list of typical foods that a PKU person would eat daily and the cost of the food items compared to "regular" food items....
PKU Foods/Cost "Regular" Foods/Cost
Low Protein Linguine- $10 Linguine- $3
Low Protein Bread Loaf- $12 Loaf of Bread- $4
Low Protein Pierogoi- $17.50 Box of Pierogi- $4
Baking Mix- $29 Flour- $3
Low Protein Brownie Mix- $12 Brownie Mix- $3
8 Low Protein Bagels- $12 Bag of Bagels- $4
25 pieces of Low Protein Chocolate- $22 Big bag of mini chocolate bars- $6
Now there's a lot of "regular" foods that PKU people can eat, but the foods still need to weighed and have the protein/phe levels known- veggies, fruits, coconut milk, coconut yogurts, margarine, certain salad dressings, hard candies, etc. Some people with PKU have a high phe tolerance and can put in a small amount of white bread and cow's milk into their daily diet.
Lily has a low phe tolerance of 295 mg per day. Thomas is currently at 50 mg per day, but he's still a baby and his number is expected to rise. Since Lily has a low tolerance, we rely heavily on the low protein foods and fruits and vegetables. Currently our insurance does not cover Lily's food. However Illinois hospitals have a division for families to provide food at a discounted cost for qualifying families. Not all states have this. So imagine if you live in a state where your medical food isn't covered, how do you get by? It can be really tough.
Here in Illinois, our medical formula is provided for free. Each month, I call the state office and order our formula. It gets shipped from England, to New York and then to us! I am extremely grateful that I live in a state that provides the formula. Formula is not covered under insurance and is extremely expensive. I can't go to a store and just pick something up. PKU formula is medical grade and provides protein to help my children grow, but it doesn't have phe in it (the type of protein that my kids can't have). If ordering the formula online, it costs anywhere from $67-$95 per can! My kids go through 2 cans each week, each kid! I'd be spending close to $300 each week on their formula. Plus it's not like baby formula. They need to drink their formula every day for life, in order to meet all of their dietary needs! This is just one perspective of PKU economics. We also take weekly blood draws and them sent to figure out the phe levels. Plus our monthly drive to the clinic and cost of the appointment.
Please don't read this and think that I wish my kids didn't have PKU. Honestly, sometimes I think about it and know that it would be easier that way. But my kids are mine and are perfect just the way they are. Their genetic disorder is part of them and has given us so much. I'm beyond feeling the guilty part and hating the diagnosis. I'm at the point where PKU is just part of our family, expensive or not! Don't read this and think that I'm wanting your sympathy. I'm just wanting to educate everyone about PKU, all aspects of it. I know that having PKU children can be challenging, but there are so many other disorders and diseases out there that are much more difficult. I'm grateful for the life that I've been given, and know that I'm right where I'm supposed to be!
Tuesday, May 14, 2013
Why Newborn Screening Is Essential
A month after Lily was born, we attended our first Illinois PKU Yearly Meeting. It was a big deal. The meeting was held at an extremely nice country club near Chicago. I'd never been to a country club and I was impressed as we drove up the drive that was surrounded by perfectly manicured trees and shrubs. It was almost like another world. Ryan and I were introduced to quite a few people and I seemed to relax a little. The other families were telling us how great their kids were doing on diet. I also had the opportunity to meet a few adults living with PKU. They had families, jobs, and were living a perfectly "normal" life.
Then the first speaker started his speech. Within the first few minutes the speaker told us all of the terrible things that can happen to people with PKU- brain damage, mental impairment, ADHD symptoms, depression, etc. My heart just sank. I looked at Ryan and we both looked down at our precious Lily, only 3 weeks old. That's when I just knew that those things were never going to happen to our little girl.
There are not that many people who have PKU in the United States. Approximately 14,500 people in the United States have PKU. Of that 14,500 people, 5,500 of them were not diagnosed at birth. Those 5,500 were not started on a proper diet immediately and are now living in dependent group homes or mental institutions! There's also an unknown number of people who had PKU but it was never diagnosed, because they were born well before the newborn testing. Most of these undiagnosed people were just labeled "Mentally Retarded".
It wasn't until 1958 that the first simple PKU test was created. Robert Guthrie found a way to easily check the level of proteins through a simple blood drop. It was much easier and less expensive than earlier methods. Then in 1966, hospitals began testing all newborns with the Guthrie test at 24 hours after birth. Finally there was a way to test for PKU and administer treatment immediately. Remember, with an appropriate low protein diet, PKU can easily be managed and people can live a "normal" life.
Newborn screening may have begun with PKU, but it's about so much more. Eventually more disorders were added to the newborn screening. Each year more than 4 million children in the United States are screened at birth for congenital diseases and disorders! And of those babies, more than 5,000 are saved through early detection of their disorders and diseases.
So what exactly is tested in the newborn screening? To be honest, most of them I had never heard of. But I know that newborn screening saved the life of my Lily and Thomas. Without the newborn screening, we would never have known that they had PKU and wouldn't have started them on a low protein diet. They wouldn't have met their monthly development goals and would be labeled as having mental retardation. Yes, mental retardation is the medical term that my children would have, if it wasn't for newborn screening.
So, when your child comes back into your hospital room with a little band aid on their heal after 24 hours of birth. Be thankful that newborn screening exists in our country. Because there are still many countries around the world who do not offer newborn screening or have it as an option. Newborn screening should never be an option. It is essential in the livelihood of our future. A simple heel prick and drop of blood on filter paper can change the future of every child.
Here's the current listing of disorders that can be checked during newborn screening in the United States. Please note that not all states check for all disorders! Currently Illinois (my state) tests for 31 disorders during the newborn screening. Most states only check for 10 of the top disorders. The main reason- money! Isn't money always the problem? The machine that administers the tests costs around $400,000. For a list of what your state tests for, please check out the March of Dimes website. For a list of international newborn screening, please check the International Newborn Screening and Global Resource Center's website.
*Amino Acid Metabolism Disorders:
1. Arginosuccinic Acidemia
2. Citrullinemia
3. Homocystinuria
4. Maple Syrup Urine Disease
5. Phenylketonuria (PKU)
6. Tyrosinemia Type I
*Biotinidase Deficiency
*Congenital Adrenal Hyperplasia
*Cystic Fibrosis
*Fatty Acid Metabolism Disorders
1. Carnitine Uptake Deficiency
2. Long-Chain L-3-Hydroxyacyl-CoA Dehydrogenase Deficiency
3. Medium-Chain Acyl-CoA Dehydrogenase (MCAD) Deficiency
4. Trifunctional Protein Deficiency
5. Very Long-Chain Acyl-CoA Dehydrogenase Deficiency (VLCAD)
*Galactosemia
*Glucose-6-Phosphate Dehyrogenase Deficiency (G6PD)
*Human Immunodefiiciency Disease (HIV)
*Organic Acid Metabolism Disorders:
1. 3-Hydroxy-3-Methylglutaric Aciduria (HMG)
2. 3-Methylcrotonyl-CoA- Carboxylase Deficiency (3MCC)
3. Beta Ketothiolase Deficiency
4. Glutaric Acidemia Type I
5. Isovaleric Acidemia
6. Methylmalonic Acidemia
7. Multiple Carboxylase Deficiency (MCD)
8. Propionic Acidemia
*Sicle Cell Disease and other hemoglobinopathy disorders and traits
*Toxoplasmosis
Then the first speaker started his speech. Within the first few minutes the speaker told us all of the terrible things that can happen to people with PKU- brain damage, mental impairment, ADHD symptoms, depression, etc. My heart just sank. I looked at Ryan and we both looked down at our precious Lily, only 3 weeks old. That's when I just knew that those things were never going to happen to our little girl.
There are not that many people who have PKU in the United States. Approximately 14,500 people in the United States have PKU. Of that 14,500 people, 5,500 of them were not diagnosed at birth. Those 5,500 were not started on a proper diet immediately and are now living in dependent group homes or mental institutions! There's also an unknown number of people who had PKU but it was never diagnosed, because they were born well before the newborn testing. Most of these undiagnosed people were just labeled "Mentally Retarded".
It wasn't until 1958 that the first simple PKU test was created. Robert Guthrie found a way to easily check the level of proteins through a simple blood drop. It was much easier and less expensive than earlier methods. Then in 1966, hospitals began testing all newborns with the Guthrie test at 24 hours after birth. Finally there was a way to test for PKU and administer treatment immediately. Remember, with an appropriate low protein diet, PKU can easily be managed and people can live a "normal" life.
Newborn screening may have begun with PKU, but it's about so much more. Eventually more disorders were added to the newborn screening. Each year more than 4 million children in the United States are screened at birth for congenital diseases and disorders! And of those babies, more than 5,000 are saved through early detection of their disorders and diseases.
So what exactly is tested in the newborn screening? To be honest, most of them I had never heard of. But I know that newborn screening saved the life of my Lily and Thomas. Without the newborn screening, we would never have known that they had PKU and wouldn't have started them on a low protein diet. They wouldn't have met their monthly development goals and would be labeled as having mental retardation. Yes, mental retardation is the medical term that my children would have, if it wasn't for newborn screening.
So, when your child comes back into your hospital room with a little band aid on their heal after 24 hours of birth. Be thankful that newborn screening exists in our country. Because there are still many countries around the world who do not offer newborn screening or have it as an option. Newborn screening should never be an option. It is essential in the livelihood of our future. A simple heel prick and drop of blood on filter paper can change the future of every child.
Here's the current listing of disorders that can be checked during newborn screening in the United States. Please note that not all states check for all disorders! Currently Illinois (my state) tests for 31 disorders during the newborn screening. Most states only check for 10 of the top disorders. The main reason- money! Isn't money always the problem? The machine that administers the tests costs around $400,000. For a list of what your state tests for, please check out the March of Dimes website. For a list of international newborn screening, please check the International Newborn Screening and Global Resource Center's website.
*Amino Acid Metabolism Disorders:
1. Arginosuccinic Acidemia
2. Citrullinemia
3. Homocystinuria
4. Maple Syrup Urine Disease
5. Phenylketonuria (PKU)
6. Tyrosinemia Type I
*Biotinidase Deficiency
*Congenital Adrenal Hyperplasia
*Cystic Fibrosis
*Fatty Acid Metabolism Disorders
1. Carnitine Uptake Deficiency
2. Long-Chain L-3-Hydroxyacyl-CoA Dehydrogenase Deficiency
3. Medium-Chain Acyl-CoA Dehydrogenase (MCAD) Deficiency
4. Trifunctional Protein Deficiency
5. Very Long-Chain Acyl-CoA Dehydrogenase Deficiency (VLCAD)
*Galactosemia
*Glucose-6-Phosphate Dehyrogenase Deficiency (G6PD)
*Human Immunodefiiciency Disease (HIV)
*Organic Acid Metabolism Disorders:
1. 3-Hydroxy-3-Methylglutaric Aciduria (HMG)
2. 3-Methylcrotonyl-CoA- Carboxylase Deficiency (3MCC)
3. Beta Ketothiolase Deficiency
4. Glutaric Acidemia Type I
5. Isovaleric Acidemia
6. Methylmalonic Acidemia
7. Multiple Carboxylase Deficiency (MCD)
8. Propionic Acidemia
*Sicle Cell Disease and other hemoglobinopathy disorders and traits
*Toxoplasmosis
Monday, May 13, 2013
Meatless Monday Link Up #5
WOW, we've made it 5 weeks with the Meatless Monday Link Up! Thank you so much for stopping by and sharing your recipes. If you've been featured please grab a button- you can find it on the main page of the blog or here!
Look at the low protein yummy pasta meal that
Me, You and PKU created!
We love chorizo at our house but I had NO IDEA that there
was a vegan version! Part Time Health Nut shares this tasty recipes.
Katie from PKU Treasurechest has a lot of low protein recipes on her blog.
Here she shares her Potato - Ramps soup!
Sunday, May 12, 2013
Medical Foods Equity Act For #PKU
I've recently written about how expensive it is to purchase low protein foods. Also that most states don't mandate that insurance companies have to cover PKU foods and formulas. Now for PKU patients, their low protein foods and formulas are their medicine. Without them, there would be no way to take in all of the right kinds of foods to ensure that they are growing properly and that their brain is not being damaged.
On May 20 & 21, the National PKU Alliance is lobbying for teh Medical Foods Equity Act (MFEA) in Washington D.C.! This is a huge deal for people with PKU and people with so many other disorders. So, if you're in the area and have a story to tell, please share. The appointments begin at 2:00 on May 20 and continue throughout May 21. If you are wanting to help, please contact Nicole Polkowski at nicole.polkowski@npkua.org.
If you're not able to help out in D.C., don't worry, you can still make a difference. You'll be able to contact your representative in August when Congress is in recess.
Not sure what the MFEA is? Then read on or find the information on the National PKU Alliance website.
On May 20 & 21, the National PKU Alliance is lobbying for teh Medical Foods Equity Act (MFEA) in Washington D.C.! This is a huge deal for people with PKU and people with so many other disorders. So, if you're in the area and have a story to tell, please share. The appointments begin at 2:00 on May 20 and continue throughout May 21. If you are wanting to help, please contact Nicole Polkowski at nicole.polkowski@npkua.org.
If you're not able to help out in D.C., don't worry, you can still make a difference. You'll be able to contact your representative in August when Congress is in recess.
Not sure what the MFEA is? Then read on or find the information on the National PKU Alliance website.
"The National PKU Alliance has been working since 2009 to help pass the Medical Foods
Equitey Act in Congress. This bill would require all insurance companies to cover the cost
of medical foods (formula and foods modified to be low in protein) for CHILDREN AND
ADULTS with PKU and other inborn errors of metabolism. This includes federal
insurance programs, such as Children's Health Insurance Program, Tricare, Medicaid,
Medicare and self-insured plans that are often exempt from state mandates because
of ERISA.
Bill Information
Equitey Act in Congress. This bill would require all insurance companies to cover the cost
of medical foods (formula and foods modified to be low in protein) for CHILDREN AND
ADULTS with PKU and other inborn errors of metabolism. This includes federal
insurance programs, such as Children's Health Insurance Program, Tricare, Medicaid,
Medicare and self-insured plans that are often exempt from state mandates because
of ERISA.
Bill Information
The bill has been introduced in the Senate and in the House during the last two Congressional Sessions. The NPKUA hopes to have the Bill reintroduced in the new Congressional Session that began in January 2013. The NPKUA has recently collected letters from WI PKU families and adults to submit to Senator Tammy Baldwin's office in an effort to convince her to reintroduce the MFEA into the Senate. The NPKUA is also working with past sponsors of the Bill to get it reintroduced into the House.
The Medical Foods Equity Act would:
- Require all insurance companies to cover the cost of medical foods
- Require that insurers cover the medical equipment and supplies needed to administer medical foods
- Cover the use of pharmacological doses of vitamins and amino acids.
- The Secretary of Health and Human Services would determine the minimum yearly coverage for all health insurance plans
- These new federal standards would not pre-empt state standards that require a higher minimum standard."
Friday, May 10, 2013
#PKU Awareness Month Part 1
May is PKU awareness month and I've been wanting to write an entry about this for a couple of weeks now. The problem is I just don't know what to write. Yeah, I've got two kids with PKU and I don't know what to say. Sounds pretty silly right?
I mean, I obviously pay attention to PKU. I have to weigh out their foods each day and prepare special meals. But that's about it. I don't research PKU and know what's the latest in treatments. I don't participate in clinical trials. I don't do public speaking about PKU. We currently just live with it.
My dad asks me a lot about what's going on with PKU and research. And I don't have a great answer. I know that many people are using Kuvan and are having some success. I know that the local trials of PegPal have been stopped. But other than that, I know nothing else! I do feel really guilty about my lack of understanding or maybe desire to research PKU.
Maybe I don't pay close attention to it because I don't have to. My kids have always had wonderful phe levels. They've always taken their formula. They love low protein foods. They don't try to sneak other foods. And our 3 year old knows how to advocate for herself. I'm lucky and maybe that's part of the problem.
I want to make better decisions for my children and that means that I need to become more of aware of what's happening in the PKU world. I need to become more involved. I need to be more than just a mother of PKU children, I need to be knowledgeable.
I've starting taking some steps in this direction. I recently started a meatless meal link up, hoping to find more PKU/low protein recipes. The problem, only 1 person with PKU has added a recipe! I have 3 cookbooks full of recipes, but I want to hear from others who are actually in the trenches. I've also started a Northern Illinois PKU group and we're going to have a get together in a couple of weeks. My fear is that me and the kids will be the only ones who show.
I'm not loud. I'm not an extrovert. I'm not aggressive. I'm just a simple, passive mother who wants to show her children (all 4 of them) that PKU is just something extra. That there are many successful adults with PKU and that if on diet, anyone can be successful. I'm hoping that by taking my small steps on the PKU path, that I may one day be able to look back and know that I did what I could for all of my children.
I don't want to look back and wish that I'd been a better advocate for my children's special needs. With that being said, I will do my best to learn more about PKU, the current research, potential treatments, etc and share them with my readers. By being better educated myself, I am spreading PKU awareness this month and always.
I mean, I obviously pay attention to PKU. I have to weigh out their foods each day and prepare special meals. But that's about it. I don't research PKU and know what's the latest in treatments. I don't participate in clinical trials. I don't do public speaking about PKU. We currently just live with it.
My dad asks me a lot about what's going on with PKU and research. And I don't have a great answer. I know that many people are using Kuvan and are having some success. I know that the local trials of PegPal have been stopped. But other than that, I know nothing else! I do feel really guilty about my lack of understanding or maybe desire to research PKU.
Maybe I don't pay close attention to it because I don't have to. My kids have always had wonderful phe levels. They've always taken their formula. They love low protein foods. They don't try to sneak other foods. And our 3 year old knows how to advocate for herself. I'm lucky and maybe that's part of the problem.
I want to make better decisions for my children and that means that I need to become more of aware of what's happening in the PKU world. I need to become more involved. I need to be more than just a mother of PKU children, I need to be knowledgeable.
I've starting taking some steps in this direction. I recently started a meatless meal link up, hoping to find more PKU/low protein recipes. The problem, only 1 person with PKU has added a recipe! I have 3 cookbooks full of recipes, but I want to hear from others who are actually in the trenches. I've also started a Northern Illinois PKU group and we're going to have a get together in a couple of weeks. My fear is that me and the kids will be the only ones who show.
I'm not loud. I'm not an extrovert. I'm not aggressive. I'm just a simple, passive mother who wants to show her children (all 4 of them) that PKU is just something extra. That there are many successful adults with PKU and that if on diet, anyone can be successful. I'm hoping that by taking my small steps on the PKU path, that I may one day be able to look back and know that I did what I could for all of my children.
I don't want to look back and wish that I'd been a better advocate for my children's special needs. With that being said, I will do my best to learn more about PKU, the current research, potential treatments, etc and share them with my readers. By being better educated myself, I am spreading PKU awareness this month and always.
Wednesday, May 8, 2013
Northern Illinois #PKU Group Get Together
I've finally decided to organize a northern Illinois PKU group! I've been wanting to meet others with PKU and kids with PKU, but traveling to Chicago for events, just isn't in the cards for us. So....I'm starting something a little closer to home!
Our first get together will be in a few weeks. I'm hoping that some of my readers may be able to attend or at least can pass the information on to someone else. Everyone is welcome, whether they have PKU or not.
If you're on facebook, you can find all of the information on my site- Littlest Sweet Pea.
And if you're not on facebook- here's the info anyway!
When: May 25, 2013
Where: Alpine Park Rockford, IL
*We'll be meeting at the shelter near the playground
Time: 11:00am- ?
Please bring your own snacks and drinks. If you've got a wonderful recipe, please share with us!
Our first get together will be in a few weeks. I'm hoping that some of my readers may be able to attend or at least can pass the information on to someone else. Everyone is welcome, whether they have PKU or not.
If you're on facebook, you can find all of the information on my site- Littlest Sweet Pea.
And if you're not on facebook- here's the info anyway!
When: May 25, 2013
Where: Alpine Park Rockford, IL
*We'll be meeting at the shelter near the playground
Time: 11:00am- ?
Please bring your own snacks and drinks. If you've got a wonderful recipe, please share with us!
Monday, May 6, 2013
Thursday, May 2, 2013
Just Because....
The older 2 kids got cameras for Christmas from their grandparents. The other day, I took out their cards and uploaded the pics to the computer. This is what I found....
I'm thinking that Lily got a hold of the cameras and was behind some of these pictures!
 |
| I'm gonna get you! |
 |
| Lily & Chloe |
 |
| Peek-a-boo |
 |
| Yes, that is lunch meat! |
 |
| Wow! I look uh... |
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| Trying to get away from a diaper change! |
I'm thinking that Lily got a hold of the cameras and was behind some of these pictures!