Did you just sing the title? I sure did! It's been well over 20 years since I last watched George and Weezy Jefferson and their maid in that deluxe apartment in the sky. What was the maid's name, anyway? Funny that I don't remember, 'cause I still to quote her when the dishes are piled up and the windows are covered with fingerprints. Really, any time that there is something around the house that I don't want to do! Oh, well. Her name is not the important thing here anyway...
When I sat down to write today, it wasn't to tell you about the time that I spent watching television when I was a kid. It was to share my excitement over one of the little things that makes such a big difference in my adult life. Okay, maybe it's not a BIG difference, but it is exciting!
[insert drum roll]
Overachiever #1 is moving up from the EpiPen Jr to the adult strength EpiPen!!! We've been talking about it for quite some time, as his weight has been hovering right around that magical 55 pounds that is the general cut off for up-dosing. (Up-dosing... Is that even a word?) Sometimes he is a pound or two over. Sometimes he is a pound or two under. But he is hovering. So last week we decided to go ahead and make the switch.
You may wonder why this is is so exciting. Carrying an EpiPen is carrying an EpiPen, right? WRONG! With three Epi carrying Overachievers, we have them all over the place. They are in Overachiever #1's waist pack, the school nurse's office, my waist pack, my purse, The Big Overachiever's waist pack and, of course, on the kitchen counter at home. While Overachiever #1 and The Big Overachiever just carry a standard twin-pack, I am compelled to carry one twin-pack of the yellow and one twin-pack of the green. It doesn't matter that Overachiever #1 has forgotten his waist pack maybe 4 or 5 times in as many years. As the mom, it is my responsibility to plan for that once a year mishap! Yeah, I've been a bit neurotic about that.
The excitement of up-dosing is that I can now carry just 2 EpiPens with me, because all overachievers in this household are now on the same dose. This means that I can carry a smaller purse! Or I can even go back to alternative carriers like the one that I used to have that was a leg holster. Or maybe I'll just keep carrying my big purse and dedicate that extra space to MY belongings since the rest is taken up by children's books and portable game players and all of the medical notes that I still have not turned into the school secretary.
The little boy that once took away my own breath and all feeling of security in the moment that he stopped breathing during dinner is growing up and turning into a responsible big boy! The feeling of helplessness that once gripped me has loosened its hold so that I can shake off the fear of group anaphylaxis to a food containing both alligator and peanuts when I'm the only one to remember the EpiPens. (But it's possible, right?!) We can now participate in most activities while taking precautions to limit the risk of exposure to allergens unseen. The transition from the green-capped EpiPen Jr. to the yellow-capped EpiPen is more than just a change in dosing. It is a tangible sign that we are movin' on up from an allergy family to a family that lives with food allergies.
Well we're movin' on up! (Sing with me!)
Tuesday, May 7, 2013
Sunday, March 31, 2013
Onto the Next Vote!
GREAT news! Not really breaking news because I was on Spring Break with my Little Overachievers when it happened, but great news nonetheless!!
HB0866 was passed by the TN House Education Committee last week with a great deal of support. The Senate version of the bill, SB1146, was also passed by the Education Committee. I have not heard when the bills will be voted upon by the full House and Senate, but I will be sure to share the date when I have it!
Many thanks to those who spread the word about this bill, and those provided direct support through letters and phone calls to committee members! I would like to give a special thanks to those who were able to represent our community at Legislative Plaza. I so wish that I could have been there with you!
UPDATE: The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13. Many thanks to all who lent their support to this process!!
LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13. See this post for more info!
HB0866 was passed by the TN House Education Committee last week with a great deal of support. The Senate version of the bill, SB1146, was also passed by the Education Committee. I have not heard when the bills will be voted upon by the full House and Senate, but I will be sure to share the date when I have it!
Many thanks to those who spread the word about this bill, and those provided direct support through letters and phone calls to committee members! I would like to give a special thanks to those who were able to represent our community at Legislative Plaza. I so wish that I could have been there with you!
- Jill Connell, Memphis
- Alyssa Tucker, Memphis
- Becky Basalone, Knoxville
- Jenine Ward, Murfreesboro
- Connor Ward, Murfreesboro
- Amanda Hargett, Murfreesboro
UPDATE: The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13. Many thanks to all who lent their support to this process!!
LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13. See this post for more info!
Friday, March 22, 2013
TN Legislative Update
I received an update late this afternoon regarding the pending legislation that I have been talking about all week. The original phrasing of Amendment 4828 to HB0866 would have required all schools in Tennessee to stock epinephrine auto-injectors that are basically prescribed to the school rather than a particular student. The new phrasing authorizes schools to stock this life-saving medication which can be used on any student believed to be experiencing anaphylaxis. This is still an important change from current law which restricts the use of epinephrine to those students who have a prescription and their own auto-injector on campus. I have not received confirmation as to whether SB1146 (the TN Senate version of the bill) has received the same modification. I hope that you will all continue to lend your support to this important legislation!
If you live in Tennessee and you have not already done so, please write letters of support this weekend. These should be emailed directly to members of the TN House Education Committee and TN Senate Education Committee. Please include the following details.
- Your first and last name
- Your city and state
- Briefly state why you support authorizing schools to stock epinephrine auto-injectors for use on any student experiencing anaphylaxis
- Ask committee members for their support
- Thank them for their time and service
Questions can be posted below in comments or directed to afanta@kvbpr.com.
UPDATE: The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13. Many thanks to all who lent their support to this process!!
LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13. See this post for more info!
Wednesday, March 20, 2013
Letters to Support Auto-injectors in TN Schools
If you've read my blog within the last few days, then you probably know that there is pending legislation that would require authorize schools in Tennessee to stock epinephrine auto-injectors. I feel like going into detail about the bill now would be silly because I'm already preaching to the choir. If you don't know what I am talking about, take a look at my previous entry and you'll catch up quick!
My request tonight is for Tennessee residents to write a letter to the TN House and Senate Education Committee members to indicate their support for the bills that would require stocking of epinephrine auto-injections in all Tennessee schools. Our legislators need to hear our stories if they are to understand the importance of this legislation! Below are some suggestions to consider as you write.
My request tonight is for Tennessee residents to write a letter to the TN House and Senate Education Committee members to indicate their support for the bills that would require stocking of epinephrine auto-injections in all Tennessee schools. Our legislators need to hear our stories if they are to understand the importance of this legislation! Below are some suggestions to consider as you write.
- Start now! Letters need to be emailed to afanta@kvbpr.com by the end of business on Thursday, March 21.
- Address one letter to the TN House Education Committee, and another to the TN Senate Education Committee.
- Introduce yourself! Include your full name and city/state.
- Briefly state that you support legislation to require epinephrine auto-injectors in Tennessee schools.
- Ask committee members for their support.
- Thank them for their time!
- Consider including a picture or two of your allergic family member. I plan to include one picture of my 8 year old having fun at his birthday party, and another of him in the hospital receiving treatment for anaphylaxis.
Thank you so much for your support of this legislative process!!! Please post any questions to the comments below. I will answer them as quickly as I can get to them.
3/22/2013 Update
HB0866, Amendment 4828 was passed by the TN House Education Subcommittee on 03/19/2013. The wording of the amendment has been changed from "requiring" schools to stock epinephrine auto-injectors that could be used on any student thought to be experiencing anaphylaxis to "authorizing" them to do so.
UPDATE:
The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13. Many thanks to all who lent their support to this process!!
LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13. See this post for more info!
3/22/2013 Update
HB0866, Amendment 4828 was passed by the TN House Education Subcommittee on 03/19/2013. The wording of the amendment has been changed from "requiring" schools to stock epinephrine auto-injectors that could be used on any student thought to be experiencing anaphylaxis to "authorizing" them to do so.
UPDATE:
The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13. Many thanks to all who lent their support to this process!!
LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13. See this post for more info!
Tuesday, March 19, 2013
HB0866 Passes TN House Education Subcommittee
Many thanks to all who shared yesterday's entry about pending legislation! Passage of HB0866 would require authorize all schools in TN to stock epinephrine auto-injectors for use on students experiencing a life-threatening allergic reaction. Epinephrine is a life-saving medication for patients experiencing anaphylaxis and must be utilized soon after symptoms begin to ensure maximum efficacy. The TN House Education Subcommittee agreed after hearing testimony today that our schools need should be authorized to be prepared to address life-threatening allergic reactions when our children are in their care and agreed to pass this bill to the entire committee.
Below are the steps that Tennessee residents can take right now to help our TN House Education Committee members recognize the importance of this bill.
Below are the steps that Tennessee residents can take right now to help our TN House Education Committee members recognize the importance of this bill.
- Write a letter addressed to the House Education Committee - TN State Legislature. Tell them why it is important to you that they pass this bill. Please include your first and last name, as well as your address (city/state) so they will know you are a resident of Tennessee. Letters that are emailed to afanta@kvbpr.com by the end of business on Thursday, March 21, 2013 will be assembled and presented together to Committee members.
- Consider having your allergic child write their own letter asking the Committee to pass the bill.
- Spread the word! Share this information with your family and friends, your medical team and your social media contacts.
- Show your support for the bill by appearing in Legislative Plaza when the bill is presented Tuesday, March 26 at noon. Please email Andrea at afanta@kvbpr.com if you are able to attend.
- Watch for updates on this legislation. I will continue to post information here as it comes to me from those working directly with the bill's sponsors.
- UPDATE, 3/20/13 AT 11:00 AM - A similarly worded bill is just starting through the TN Senate. Please also send letters addressed to the TN Senate Education Committee to Andrea so she can compile those and present them all together for more impact. I will post again when I have additional information on the Senate bill.
3/22/2013 Update
HB0866, Amendment 4828 was passed by the TN House Education Subcommittee on 03/19/2013. The wording of the amendment has been changed from "requiring" schools to stock epinephrine auto-injectors that could be used on any student thought to be experiencing anaphylaxis to "authorizing" them to do so.
UPDATE:
The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13. Many thanks to all who lent their support to this process!!
LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13. See this post for more info!
LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13. See this post for more info!
Monday, March 18, 2013
Pending Legislation for Epinephrine Auto-Injectors in TN Schools
The TN House Education Subcommittee will be meeting tomorrow at 3 pm. On the agenda is HB0866 which would require authorize all public and private schools to stock epinephrine auto-injectors to treat students in the event that their own auto-injector is unavailable or they are having an anaphylactic reaction for the first time while at school. The bill stipulates that every school shall stock auto-injectors in at least 2 secured but unlocked locations such as the school office and cafeteria.
The bill is written in such a way that a school nurse or other trained personnel may utilize the auto-injectors for anaphylaxis under a standing protocol from a physician. The prescribing doctor would be exempted from liability "unless the physician issued the prescription or standing protocol with intentional disregard for safety." The school nurse or school employee administering the epinephrine would also be exempted from liability with the same phrasing.
Assuming that HB0866 is passed by the Subcommittee, it will be presented to the full House Education Committee at noon on Tuesday, March 26.
You may wonder why this bill is important. The following are statistics pulled from FARE's website.
Now for the most pressing question. What can we do to help our House Committee members understand the importance of this bill?
The bill is written in such a way that a school nurse or other trained personnel may utilize the auto-injectors for anaphylaxis under a standing protocol from a physician. The prescribing doctor would be exempted from liability "unless the physician issued the prescription or standing protocol with intentional disregard for safety." The school nurse or school employee administering the epinephrine would also be exempted from liability with the same phrasing.
Assuming that HB0866 is passed by the Subcommittee, it will be presented to the full House Education Committee at noon on Tuesday, March 26.
You may wonder why this bill is important. The following are statistics pulled from FARE's website.
- Researchers estimate that up to 15 million Americans have food allergies, including 1 in 13 children. That works out to roughly 2 children per classroom.
- Failure to administer epinephrine promptly after an allergic reaction begins is a significant risk factor for fatal anaphylaxis.
- Teens are among the group of patients with the highest rates of fatality due to food-induced anaphylaxis.
- Food allergies can begin at any time, even to foods that have previously been consumed with no ill effects.
- 20 - 25% of anaphylactic reactions in a school setting occur when there was no previously known food allergy
Now for the most pressing question. What can we do to help our House Committee members understand the importance of this bill?
- Show your support for the bill by appearing in Legislative Plaza when the bill is presented Tuesday, March 19 at 3 pm and/or on Tuesday, March 26 at noon. (You do not have to speak!) Please email Andrea at afanta@kvbpr.com if you are able to attend in order to work out the logistics.
- Write a letter addressed to the House Education Committee - TN State Legislature stating why you support the bill. Please include your name (first/last) and address (city/state, at minimum) so the committee members will know that they are hearing from TN residents. Letters can be emailed to afanta@kvbpr.com no later than Thursday, March 21, 2013.
- Consider having your allergic children write their own letter to the Committee saying what the bill would mean to them.
- Spread the word! Share this information with your friends, family, physicians and blog readers.
3/22/2013 Update
HB0866, Amendment 4828 was passed by the TN House Education Subcommittee on 03/19/2013. The wording of the amendment has been changed from "requiring" schools to stock epinephrine auto-injectors that could be used on any student thought to be experiencing anaphylaxis to "authorizing" them to do so.
UPDATE:
The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13. Many thanks to all who lent their support to this process!!
LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13. See this post for more info!
UPDATE:
The bill that would allow TN schools to stock epinephrine autoinjectors for all students perceived to be in experiencing anaphylaxis was passed by the House and Senate of the TN General Assembly on 4/15/13. Many thanks to all who lent their support to this process!!
LAST UPDATE:
There is a bill signing ceremony for this legislation on 6/4/13. See this post for more info!
Friday, February 15, 2013
Not "Just" a Cookie
When I think back to the Valentine's Days of my childhood, there are three things that I remember quite vividly. First is the careful planning and crafting of the shoe box that would collect my valentines. For some reason, my creations always included purple hearts and ric rac ribbon. I am quite certain that my art teacher had other supplies available. But those two features are absolutely required to make a winning Valentine's box! Next is the heart-shaped box of chocolate candies. I never did figure out the code that was supposed to tell you what filling to expect, so I had to punch in the bottoms of each one to figure out what was inside. Just thinking about those chocolates has my mouth watering! And then there are the cookies... There were always homemade cookies with a ton of frosting and shaky little conversation heart phrases.
Times have changed. Or perhaps the Little Overachievers' school just has different priorities. Either way, transforming shoe boxes into collection boxes for valentines is not in the lesson plan. Instead, it's a paper bag decorated with stickers. Somehow, it's just not quite the same. Multiple food allergies (for all of us!) make the box of chocolates a no go. But the cookies... The cookies, I can do!
Overachiever #1 is limited to his medical formula, granulated white sugar, artificial color and artificial flavors. A few years ago, I would have told you there is nothing remotely cookie-like to be created with those ingredients. Today, however, I know better. Always the procrastinator, writing out valentines was saved for last night. So this morning I dropped the Little Overachievers at school and then set out to create memorable "just sugar" cookies in time for the afternoon parties.
Four pounds of granulated sugar, a surprisingly small amount of water, and lots of stirring yields a mixture that feels about like wet sand.
Times have changed. Or perhaps the Little Overachievers' school just has different priorities. Either way, transforming shoe boxes into collection boxes for valentines is not in the lesson plan. Instead, it's a paper bag decorated with stickers. Somehow, it's just not quite the same. Multiple food allergies (for all of us!) make the box of chocolates a no go. But the cookies... The cookies, I can do!
Overachiever #1 is limited to his medical formula, granulated white sugar, artificial color and artificial flavors. A few years ago, I would have told you there is nothing remotely cookie-like to be created with those ingredients. Today, however, I know better. Always the procrastinator, writing out valentines was saved for last night. So this morning I dropped the Little Overachievers at school and then set out to create memorable "just sugar" cookies in time for the afternoon parties.
Four pounds of granulated sugar, a surprisingly small amount of water, and lots of stirring yields a mixture that feels about like wet sand.
A packed handful of the mixture can be rolled out like cookie dough.
Cookie cutters work just as well for packed sugar as they do for cookie dough. Sugar doesn't hold together quite the same, so a spatula is required to transfer each cut out. (Don't ask me how long it took me to figure that out!) You can also use candy molds or silicone ice cube trays to make "just sugar" candies.
A couple of hours in the dehydrator is enough "cooking" to transform the wet sugar into a solid cookie or bite-sized candy. Store bought powdered sugar is a no-go in our house due to the inclusion of corn starch to prevent clumping. So I use a coffee grinder to pulverize granulated sugar. The resulting powder can be mixed with artificial color and a few drops of water to create a glaze that is easily spread with a small rubber spatula. Once the glaze has dried, an artificially colored decorating pen can be used for writing messages.
The end result is not just a cookie. It is a smile that preempts tears. It is a single "Yes, please!" in a world of "No thank you - I'm allergics." Most importantly, it is the start of a new family tradition and, I hope, a memory that the Little Overachievers will recall with fondness when they are adults thinking back on what "makes" Valentine's Day for them.
Saturday, January 26, 2013
ARRRRRR, Matey!
When we started talking about birthday plans a few weeks ago, the Little Overachievers were united on just one thing. They wanted to be pirates. And once they had made up their minds, they were determined to have a pirate party at one particular place with all of their friends. And I do mean ALL of their friends! Or at least all of their classmates. So I booked a location (no WAY could that many kids would fit into our tiny house!) with lots of space and a cool pirate ship to play on. Then I started shopping. I got a Jolly Roger flag, pirate hats, eye patches, plastic swords and all sorts of treasure for the kids to go find. (Have I ever mentioned that I love online shopping? No way could we have pulled this off with real world pricing!)
I had great plans! No. Scratch that. I had the grandest of plans!! We were going to set up a treasure hunt. I even made a bunch of treasure chests! I was going to give each kid a list of treasure to collect and then that would be their goody bag to take home. There would be a staged area for photos with an adult taking pictures of every kid in their pirate gear. We would have games and lots and lots of fun! Have I mentioned that we were going to do all of this in a time slot of less than 2 hours? Okay. Fine. So my plans were perhaps a little ambitious considering the 5 minutes of time that I was allowed to set up before guests were to arrive. Plus we were 3 minutes LATE to the party, so we had guests arriving before us!
I reluctantly lined up my treasure chests which suddenly seemed too obviously homemade - and not in a good way - to call treasure chests. (I am actually rather proud of myself now that I've adjusted to the idea of them being used as party props for a bunch of little kids rather than ready for a movie set as I had envisioned!) Then I tried to do an assembly line for guests to get their pirate gear and treasure. That was a very big reminder of why I could never be a teacher. (How do they handle having so many kids RIGHT on TOP of THEM?!) I had to resort to sending them all to play and calling them back to me a few at a time. They were allowed to select a sword while I labeled a hat and goody bag. Then they each filled their own goody bags from the kid-friendly treasure boxes. A couple of parents jumped in to help draw on beards, mustaches and tattoos with an eyebrow pencil. Eventually we got everyone dressed up. They were having so much fun already that it seemed silly to interrupt them with the games that I had planned. Their ideas were way better than mine anyway!
You are probably asking yourself why I would put myself through this when I had rented out a play place where they typically run parties while parents sit back and chat with other adults. Guilt. Plain and simple guilt. I have been to a whole lot of birthday parties in my life. There is one thing they all have: cake and ice cream. If not cake, then another favorite dessert. But the Little Overachievers don't eat like other kids... Knowing that we can't give them something as simple as a beautifully decorated, professional quality cake makes me feel sad. And feeling sad for my kids not being able to eat like their friends makes me feel guilty because they share their allergic tendencies with me. So how does a mom allay this overwhelming feeling? She compensates by throwing the best darned birthday party she can so no one will even notice the lack of cake!
I am not creative by nature, so I thought about all of the birthday parties that I attended as a kid and which ones were the most exciting. I should be able to duplicate one of those, right?! But I kept coming back to a party that I did not get to attend. It was in January of first grade, the Saturday after I had missed an entire week of school due to the chicken pox. My fever didn't break until Thursday night, so I wasn't allowed to go to school on Friday. According to my doctor and the school, I would have been allowed to return on Saturday if it had been a school day. But it wasn't. It was party day instead. I was sooooo excited to be well just in time for the big party! But my mom kept me home because she said if I stayed home sick on a Friday that I shouldn't be attending social events over the weekend because that would look bad. (Yeah, like anyone was going to think that my scabbed over face was from anything but the chicken pox?!) When I got to school that Monday, the only thing that anyone talked about was this birthday party. This was in the early 80s when every business that was worth my quarter had a PAC-MAN machine to play. The birthday girl's mom had rented out the local community center and put together costumes for all of the guests. Using the lines for the basketball courts, she reconstructed a PAC-MAN maze. Guests in ghost costumes chased each other around and even had the little "out" box where the PAC-MAN characters who had been caught had to sit to rejuvenate. It has been three decades and I am still bummed that I didn't get to go to that party!
So that's why my kids have to have the best birthday parties ever. Because when their friends leave, I don't want them talking about how awful it was that there was not even any cake or ice cream. I want them thinking it was THE best party EVER, and not even realizing that we didn't serve them anything more than juice and a lollipop made with Overachiever-safe ingredients. For what it's worth, I think we may have achieved that.
Our guests greeted their parents with mustaches and tattoos and smiles. Even the girls! They immediately started telling tales of sword fights and walking the plank. I hope that when they see all of their friends on Monday that they are still smiling, even if their parents do refuse to draw on new mustaches.
I had great plans! No. Scratch that. I had the grandest of plans!! We were going to set up a treasure hunt. I even made a bunch of treasure chests! I was going to give each kid a list of treasure to collect and then that would be their goody bag to take home. There would be a staged area for photos with an adult taking pictures of every kid in their pirate gear. We would have games and lots and lots of fun! Have I mentioned that we were going to do all of this in a time slot of less than 2 hours? Okay. Fine. So my plans were perhaps a little ambitious considering the 5 minutes of time that I was allowed to set up before guests were to arrive. Plus we were 3 minutes LATE to the party, so we had guests arriving before us!
I reluctantly lined up my treasure chests which suddenly seemed too obviously homemade - and not in a good way - to call treasure chests. (I am actually rather proud of myself now that I've adjusted to the idea of them being used as party props for a bunch of little kids rather than ready for a movie set as I had envisioned!) Then I tried to do an assembly line for guests to get their pirate gear and treasure. That was a very big reminder of why I could never be a teacher. (How do they handle having so many kids RIGHT on TOP of THEM?!) I had to resort to sending them all to play and calling them back to me a few at a time. They were allowed to select a sword while I labeled a hat and goody bag. Then they each filled their own goody bags from the kid-friendly treasure boxes. A couple of parents jumped in to help draw on beards, mustaches and tattoos with an eyebrow pencil. Eventually we got everyone dressed up. They were having so much fun already that it seemed silly to interrupt them with the games that I had planned. Their ideas were way better than mine anyway!
You are probably asking yourself why I would put myself through this when I had rented out a play place where they typically run parties while parents sit back and chat with other adults. Guilt. Plain and simple guilt. I have been to a whole lot of birthday parties in my life. There is one thing they all have: cake and ice cream. If not cake, then another favorite dessert. But the Little Overachievers don't eat like other kids... Knowing that we can't give them something as simple as a beautifully decorated, professional quality cake makes me feel sad. And feeling sad for my kids not being able to eat like their friends makes me feel guilty because they share their allergic tendencies with me. So how does a mom allay this overwhelming feeling? She compensates by throwing the best darned birthday party she can so no one will even notice the lack of cake!
I am not creative by nature, so I thought about all of the birthday parties that I attended as a kid and which ones were the most exciting. I should be able to duplicate one of those, right?! But I kept coming back to a party that I did not get to attend. It was in January of first grade, the Saturday after I had missed an entire week of school due to the chicken pox. My fever didn't break until Thursday night, so I wasn't allowed to go to school on Friday. According to my doctor and the school, I would have been allowed to return on Saturday if it had been a school day. But it wasn't. It was party day instead. I was sooooo excited to be well just in time for the big party! But my mom kept me home because she said if I stayed home sick on a Friday that I shouldn't be attending social events over the weekend because that would look bad. (Yeah, like anyone was going to think that my scabbed over face was from anything but the chicken pox?!) When I got to school that Monday, the only thing that anyone talked about was this birthday party. This was in the early 80s when every business that was worth my quarter had a PAC-MAN machine to play. The birthday girl's mom had rented out the local community center and put together costumes for all of the guests. Using the lines for the basketball courts, she reconstructed a PAC-MAN maze. Guests in ghost costumes chased each other around and even had the little "out" box where the PAC-MAN characters who had been caught had to sit to rejuvenate. It has been three decades and I am still bummed that I didn't get to go to that party!
So that's why my kids have to have the best birthday parties ever. Because when their friends leave, I don't want them talking about how awful it was that there was not even any cake or ice cream. I want them thinking it was THE best party EVER, and not even realizing that we didn't serve them anything more than juice and a lollipop made with Overachiever-safe ingredients. For what it's worth, I think we may have achieved that.
Our guests greeted their parents with mustaches and tattoos and smiles. Even the girls! They immediately started telling tales of sword fights and walking the plank. I hope that when they see all of their friends on Monday that they are still smiling, even if their parents do refuse to draw on new mustaches.
Wednesday, January 23, 2013
What's In a Name?
Within any community, a change in leadership is unsettling. Mergers are particularly nerve wracking because combining two similar entities requires compromise. Each party involved - from the upper levels of management down to each individual employed or served by an organization - has a desire to maintain certain aspects from the previous organizations. Different people have different priorities, and inevitably someone will not get what they want. The allergy community is currently undergoing one of these transitions.
The Food Allergy & Anaphylaxis Network (FAAN) and the Food Allergy Initiative (FAI) formed to cause a new organization called Food Allergy Research & Education (FARE) in 2012. You can read the press release and FAQ regarding the merger for yourself. Multiple issues are addressed in these articles, including the reason that "anaphylaxis" was not included in the new name. To paraphrase FARE on this matter, it is important for people to recognize and appropriately address food allergies before anaphylaxis occurs. A small, but vocal, contingency within the food allergy community has taken exception to the omission of the word anaphylaxis in FARE's name. A petition has been started demanding that the organization's name be altered to Food Allergy and Anaphylaxis Research and Education (FAARE) to more appropriately represent the anaphylactic community.
I disagree with the assertion that excluding the word anaphylaxis from the new name hurts anyone in the allergy community. I have multiple food allergies, as do my husband and both of our children. Three of us have experienced anaphylaxis related to one or more allergens. All four of us have less severe food allergies that, thus far, have not led to anaphylaxis. The assertion that anaphylaxis is the most important thing to know about food allergies is a fallacy. Ask anyone who "only" gets hives or profuse vomiting caused by food allergens whether their allergy is "no big deal" just because the their airway is not cut off. Even those food allergies that are milder and responsive to antihistamines (rather than requiring epinephrine) can have a serious impact on someone's livelihood. When is the last time you managed to remain productive despite severe vomiting or diarrhea or a "simple" case of hives that required sedating antihistamines? Increased awareness of food allergies means realizing that there can be a variety of symptoms up to and including anaphylaxis.
My position is that FAAN and FAI leadership made the right decision when they chose to omit "anaphylaxis" from the name of the new organization. Further, I believe that those who are creating such a fuss over the name are taking resources away from FARE's stated mission.
The Food Allergy & Anaphylaxis Network (FAAN) and the Food Allergy Initiative (FAI) formed to cause a new organization called Food Allergy Research & Education (FARE) in 2012. You can read the press release and FAQ regarding the merger for yourself. Multiple issues are addressed in these articles, including the reason that "anaphylaxis" was not included in the new name. To paraphrase FARE on this matter, it is important for people to recognize and appropriately address food allergies before anaphylaxis occurs. A small, but vocal, contingency within the food allergy community has taken exception to the omission of the word anaphylaxis in FARE's name. A petition has been started demanding that the organization's name be altered to Food Allergy and Anaphylaxis Research and Education (FAARE) to more appropriately represent the anaphylactic community.
I disagree with the assertion that excluding the word anaphylaxis from the new name hurts anyone in the allergy community. I have multiple food allergies, as do my husband and both of our children. Three of us have experienced anaphylaxis related to one or more allergens. All four of us have less severe food allergies that, thus far, have not led to anaphylaxis. The assertion that anaphylaxis is the most important thing to know about food allergies is a fallacy. Ask anyone who "only" gets hives or profuse vomiting caused by food allergens whether their allergy is "no big deal" just because the their airway is not cut off. Even those food allergies that are milder and responsive to antihistamines (rather than requiring epinephrine) can have a serious impact on someone's livelihood. When is the last time you managed to remain productive despite severe vomiting or diarrhea or a "simple" case of hives that required sedating antihistamines? Increased awareness of food allergies means realizing that there can be a variety of symptoms up to and including anaphylaxis.
My position is that FAAN and FAI leadership made the right decision when they chose to omit "anaphylaxis" from the name of the new organization. Further, I believe that those who are creating such a fuss over the name are taking resources away from FARE's stated mission.
Thursday, January 17, 2013
My Drive Thru Endoscopy
For those living with eosinophilic gastrointestinal disorders, the upper GI endoscopy (sometime paired with colonoscopy) is a fairly frequent procedure. As a parent, I have become almost nonchalant about what this process means for my children. To the casual observer, Overachiever #1 seems to take it all in stride. From his outward appearance, you would never guess that he is anxious about the process. But he holds tight to Tigger and his blanket, both of which never leave his bedroom except on these "special" occasions. Overachiever #2 is not quite as easy to calm. He really psychs himself out in the days leading up to a scope. There was a time when it took two nurses to literally peel him off of me! But now he knows the routine. As long as we stick with the routine, he makes it through. But you can see that he is really scared. We give him control over the little things like what he wears back. For some reason, the idea of putting on a hospital gown is too much for him. So the doctors and nurses agree to let him go back in street clothes as soon as I agree that they can cut them off him in an emergency. Still, it is so difficult that he asked his doctor a year ago if he could stop food trials. It isn't that he doesn't want to eat like his friends. It's that he would rather stick with eating the same 4 foods every day than endure more scopes.
The first time the boys were scoped, they got a little tour of the endoscopy suite. The doctors and nurses told them what everything was and showed them the camera that would be taking pictures of the inside of their belly. The tour is repeated any time they ask for it. With kids, they typically induce anesthesia with medicine that they breathe through a mask. That mask is scary for them! The medicine is yucky and they complain about tasting it for days. But the IV and other "stuff" is put in after they are asleep. When they wake up in post op, all that is left is the IV and maybe some oxygen so they don't even know what else they are hooked up to.
Yesterday (technically the day before yesterday at this point in the night!) I went in for an upper GI endoscopy to determine whether or not I have EoE as the boys do. I am very stuck on how different the process is for the very same procedure when it is performed in a large GI Lab for adults than when it is done in a small GI Lab for pediatric patients. When the boys have their scopes, I go back to preop with them. The preop rooms are much like regular exam rooms, with a bed, a couple of chairs and, most importantly, a door that gives some privacy. There is a basket of toys for the kids, and a TV for me - not that I ever get to watch it! The nurses, anesthesiologist, nurse anesthetist and GI specialist all parade through checking and cross-checking diagnoses, medications, allergies, loose teeth and everything else that might be important during the 15 minutes that the boys are out of my sight. Often, there are multiple medical professionals in the room at the same time, all doing their own thing. At some point, the Child Life Specialist joins the fray with her friend Blueberry. The boys pull out their own stuffed animals and Blueberry acts out the procedures that are about to take place. There is a lot going on, and I often feel like I need to clone myself to attend to everyone. But there is always time to answer questions and tend to personal comfort. Always!
When I was called back yesterday, I had to say goodbye to my husband in the waiting room. They would not allow him to go with me to preop. I was not allowed to take my smart phone with me due to concern over loss or theft. There were at least 8 beds in preop, separated by curtains that didn't quite close all the way. The guy that escorted me back dropped a gown on the bed and told me to disrobe completely. I am not particularly modest by nature, but I was very uncomfortable in that setting. I felt like no matter which way I turned, some stranger was getting a peep show! I carefully folded my clothes and put them into the clear plastic bag provided for personal belongings. Then I sat on the bed and waited. And waited... There were no magazines to flip through, no TV to watch and no signs posted where I could see them. In that sterile environment and without the apps on my phone to distract me, the anxiety that I was already feeling about the procedure increased. Would the doctor respect my request for an approach that differed from what he would typically do for patients in my circumstance? What would the biopsies reveal? Would I have to choose between two equally unappealing treatment options if it turned out to be EoE, or would I still be without a diagnosis for the symptoms that bring me misery? Would I have anesthetic awareness as I have with previous procedures? I may be geeky enough to have thought it was pretty cool to hear and feel the (dulled) sensations of having my wisdom teeth cut out. But I did NOT want to feel the endoscope probing my insides! I am not one to be anxious about medical procedures, but I very seriously considered walking out. What kept me there was knowing that I would have to admit to my kids that I was too afraid to go through with a procedure that I have scheduled and delivered them to roughly a dozen times (each!) in the past 4 years.
The first time the boys were scoped, they got a little tour of the endoscopy suite. The doctors and nurses told them what everything was and showed them the camera that would be taking pictures of the inside of their belly. The tour is repeated any time they ask for it. With kids, they typically induce anesthesia with medicine that they breathe through a mask. That mask is scary for them! The medicine is yucky and they complain about tasting it for days. But the IV and other "stuff" is put in after they are asleep. When they wake up in post op, all that is left is the IV and maybe some oxygen so they don't even know what else they are hooked up to.
Adults don't get the tour. Apparently we aren't supposed to be afraid! They took my glasses from me in preop, so everything was blurry. I knew what most of the equipment was, so that helped. But then they placed a bite block in my mouth and kept it in place with a collar that felt so tight on my neck. Logically, I knew what was happening. But emotionally, I was a wreck! I felt like I was being restrained and suffocated. The word torture comes to mind. At the same time, a nurse anesthetist was injecting medication into my IV. I get why they do it in that order, but this knowledge did not ease my anxiety.
When the boys wake in post op after a procedure, I am standing by the bed stroking an arm or even rocking them in my lap. The nurses are all smiling and try very hard to help them ease back into wakefulness. Most kids get popsicles. Mine get cups of the best ice on the planet. Once they are able to sit up and keep down a little bit of liquid, the curtains are fully drawn so they can have privacy as I help them get dressed. They are rewarded for being such awesome patients with a treat from the prize box. They get hugs and waves from all the staff. Their doctor takes the time to tell them how awesome they did. When they are discharged, a wheelchair is brought and they get warm blankets on their lap for the ride to the car. By the time we walk into our Home Away From Home, you would never know that they had been under anesthesia, except that they want something to drink rather than something to eat.
I was awakened yesterday by nurses yelling at me through my drugged up fog. They had a schedule to keep, and the extra hefty dose of meds that I'd been given to prevent anesthetic awareness meant that I was waking slowly and putting them behind. The roof of my mouth felt like hamburger meat, presumably from the bite block. My throat was hurt so bad that every breath (in or out!) felt like fire. My asthma was flaring and so I needed a breathing treatment. In addition to the scope, my esophagus had been stretched which caused significant chest pain. I was discharged just as soon as I could sit on the side of the bed unassisted. My instructions were to start with small amounts of fluids, move to soft foods and eventually solids by dinner.
While my kids are typically back to normal the next day, I am still in major pain. I am dehydrated because simply swallowing saliva is painful. I spent all day in bed because it's easier to deal with pain if you can sleep through it. I have eaten one actual meal of very soft food and don't plan to do that again for a while! While esophageal dilation is not a typical part of my children's scopes, it is something that is possible.
There are two things that I want to remember and still be working on a year from now. First is that I need to be more aware of just what it means to take my children to the GI Lab for a scope. It not "just another scope." Rather it is an anxiety producing experience, even when you know what to expect. Second is to take steps to communicate my experience to those who can address the anxiety producing nature of larger GI Labs that treat outpatient surgical procedures with all the warmth of taking and fulfilling an order at a drive thru window.
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