It has been 3 weeks since Charlie's endoscopy. We are learning that time gives insight, peace and perspective. A well known fact but one Derek and I are practicing often.
We are so pleased with our team... Allergy in Charlotte, GI in Greenville and our overall team guiding his care at CHOP in Philadelphia. When your child needs specialized care, it is not always in your backyard... But we want the best, so we have found it.
Our 24 hour adventure to Greenville children's for Charlie's procedure was smooth, calm and uneventful which is exactly what we hoped. Thank goodness for Lolly and Pop keeping the most beautiful "normal" for William while we went for Charlie's "tummy Doctor check up."
A Marriott with two adjoining rooms and an indoor pool was perfect for Derek, Charlie and I... And he no doubt enjoyed his only child 24 hours! Lots of attention for this little guy!
Endoscopy highlights:
8 am arrival time was perfect, Charlie tolerated being NPO beautifully, the whole team adores
Him and is very child friendly.
We prepared him for every step... A check up, hospital pajamas, sleepy medicine and wake
Up with mommy and daddy. Thankfully he is sedated prior to his iv being placed... And his pulse ox. The most stressful Part awake Was his name band. He just did NOT want to wear
It.
Recovery was perfect this time. His iv was in his foot and they brought us back immediately. Therefore, as he woke up he saw Derek and I and just wanted
To be held. Perfect. Exactly as it should
Be.
Uneventful. Peaceful. Calm.
And the best news of all... 0 eosinophils shown in the multiple biopsies taken.
What does this mean? Our immediate question.
It means that 1. Charlie's Prevacid dose is perfect and 2. His diet is perfect and not causing any allergic response in his esophagus! Prayers answered and amazing news.
So what now?
A food trial and then another endoscopy 8-12 weeks after the last food is introduced to see how he is doing. Our food trial will include sweet potato, oats and some legumes (chickpea, black bean...)
Food introduction is slow but we are just so thankful we don't have to take anything away and we know his current diet is safe. Furthermore, have you seen how cute and healthy he is?! Clearly his diet is doing some great work for him, if only we could grow an avocado tree and a coconut tree!
Thank you for your thoughts, prayers and cheering for mister Charlie!!!!
Wednesday, February 24, 2016
Tuesday, November 24, 2015
"You've got this!"
After Charlie was diagnosed with allergies, we retreated a bit. Restaurants and play dates out in the world just didn't feel safe. Peanuts and eggs felt like they were everywhere, and they were / are!
However, we finally feel like we have a grasp on this. We are careful. We are advocates. We know how to keep Charlie safe. If something seems unsafe, we stay away. When we go to a restaurant, we clean the high hair and the table. We don't care that we get the "oh look at that family cleaning everything" looks. We are keeping Charlie safe. We make it normal. Charlie knows it's the routine, william helps (most of the time). Life with the Luthers.
We were recently at two birthday parties ..
One for sweet Charlie's friend turning one and one for Williams friend who adores Charlie and invited him to attend. We packed Charlie's safe muffin, pulled it out at cupcake time and VOILA "normal." Derek and I smiled, high fived and shared a "we've got this!" Normal.
Now enter snack time and meal time. Charlie's safe list of foods is mostly comprised of fruits vegetable and coconut. It's amazing the doors that coconut opens. We hope for potato one day! It's the little things!! We are finally getting into a groove of "food matching." When William has cereal with milk, so does Charlie... Last night, chicken and orzo soup for the family... Whole wheat noodles and steamed carrots in a bowl with a spoon for Charlie. Normal. Appreciating the little things. Lunch today for the boys was comprised of "trail mix" made of corn chex and craisins... Mandarin oranges... And a peanut butter and jelly sandwich,,, William with regular milk and charlien with hemp milk. "Mommy! Me and Charlie have the same lunch. We are brothers and we are matching!" Again, the little things... And again, normal. Normal. Normal. Normal.
Next up some "food matching" at thanksgiving... A little dose of "you've got this" and we will make it NORMAL!
However, we finally feel like we have a grasp on this. We are careful. We are advocates. We know how to keep Charlie safe. If something seems unsafe, we stay away. When we go to a restaurant, we clean the high hair and the table. We don't care that we get the "oh look at that family cleaning everything" looks. We are keeping Charlie safe. We make it normal. Charlie knows it's the routine, william helps (most of the time). Life with the Luthers.
We were recently at two birthday parties ..
One for sweet Charlie's friend turning one and one for Williams friend who adores Charlie and invited him to attend. We packed Charlie's safe muffin, pulled it out at cupcake time and VOILA "normal." Derek and I smiled, high fived and shared a "we've got this!" Normal.
Now enter snack time and meal time. Charlie's safe list of foods is mostly comprised of fruits vegetable and coconut. It's amazing the doors that coconut opens. We hope for potato one day! It's the little things!! We are finally getting into a groove of "food matching." When William has cereal with milk, so does Charlie... Last night, chicken and orzo soup for the family... Whole wheat noodles and steamed carrots in a bowl with a spoon for Charlie. Normal. Appreciating the little things. Lunch today for the boys was comprised of "trail mix" made of corn chex and craisins... Mandarin oranges... And a peanut butter and jelly sandwich,,, William with regular milk and charlien with hemp milk. "Mommy! Me and Charlie have the same lunch. We are brothers and we are matching!" Again, the little things... And again, normal. Normal. Normal. Normal.
Next up some "food matching" at thanksgiving... A little dose of "you've got this" and we will make it NORMAL!
Thursday, November 19, 2015
A plan... A real plan...
As most of you know, at 6 months, Charlie was diagnosed with egg and nut allergies. Since that time it has been a journey. In the past 10 months, Charlie has experienced quite a bit. He has had several allergic reactions ending in urgent care visits, emergency room visits, changes in medicines, sleepless nights, appointments with specialists, blood draws, allergy skin testing, an endoscopy and a trip to CHOP. Finally, we feel as though we have a solid plan and a beautiful village of doctors, nurses and dietitians to support Charlie (and us!).
The short version of a 4 hour visit...
Charlie has 3 different allergic conditions which make him a wee bit complicated.
IgE mediated allergies - these are the "normal" allergies; hives, coughin, itchy, watery eyes, anaphylaxis (actually, the "easy" ones in some ways or better yet, the most straight forward). You can test for them and you can avoid the allergens. At this point Charlie is allergic to egg and quinoa. He passed his peanut trial at the age of 13 months! That was huge. He carries his epipen everywhere and William can teach a stellar I service on when and how to administer epinephrine.
FPIES- food protein induced intercolitis syndrome
This is a fancy name for an allergy that doesn't show up until the child has repeated exposure to an allergen and then has severe and continuous vomiting as a reaction. Charlie is FPIES to rice; and thus must avoid all grains, legumes and poultry. Who knew rice eliminated so much? Sigh.
EoE- eosenophilic esophogitis
The hardest to say and the most complicated. This is diagnosed only by biopsies taken during an endoscopy. A personal without EE has zero eosinophils. A person wth EE has greater than 15 in any given section. Charlie's numbers were higher than 15 in two portions thus diagnosing EE. It has been compared to asthma of the esophagus by which the white blood cells rush to the area when a trigger is present causing inflammation and pain. Typically it can be managed with some medication and mostly diet. The top triggers are wheat, nuts, egg, soy, shellfish, fish and dairy. So, that limits diet yet again (hence the reason why we have been a bit perplexed about moving forward with diet etc)
We have an incredible team here in Charlotte; however, our allergist and pediatrician recommend a true center that cares for children with EoE to care for a little one as complicated as Charlie. So, when we learned that CHOP is one of the top programs in the world and you have a village there, you go!
We met with the team for about 4 hours to review every single
Detail about Charlie. If anyone reading this were to say, what is your one piece of advice? I would say, if you know deep in your heart something is not quite right with your child, write everything down. I have kept a detailed food journal and behaviors / sleep for Charlie for over 6
Months and boy was I glad! They asked us dates, timing, food introductions, reactions... And we KNEW IT ALL. (Proud
Moment for Derek and I!)
And now... The plan moving forward ...
- change some medicines (increase one, take one away)
- start a new multivitamin
- complete dietary analysis of Charlie for 4 days to review
All Vitamins and minerals he gets from his foods
- see a new GI doctor in Greenville SC
In January (visit and endoscopy) *this doc was a resident and fellow at chop and follows all of the same protocols
- continue with our team here who will follow the plan from CHOP
- don't change any foods at this point and HOPE for lower eosenophil counts during his next endoscopy to introduce new foods once he is baseline
The team is supportive, so so smart and dedicated to sweet Charlie. He charmed them all with those sweet sparkly eyes, chunky cheeks and love for life! We asked Charlie to thank them all many times as they came in and out of the room and he would raise his arm high and mumble "your welcome" to them! Of course, they thought he was pretty great (oh, and they love his weight as well!!!!)
So all in all, our sweet Charlie is in great hands and we are thankful and peace filled knowing we have a PLAN!!!!
The short version of a 4 hour visit...
Charlie has 3 different allergic conditions which make him a wee bit complicated.
IgE mediated allergies - these are the "normal" allergies; hives, coughin, itchy, watery eyes, anaphylaxis (actually, the "easy" ones in some ways or better yet, the most straight forward). You can test for them and you can avoid the allergens. At this point Charlie is allergic to egg and quinoa. He passed his peanut trial at the age of 13 months! That was huge. He carries his epipen everywhere and William can teach a stellar I service on when and how to administer epinephrine.
FPIES- food protein induced intercolitis syndrome
This is a fancy name for an allergy that doesn't show up until the child has repeated exposure to an allergen and then has severe and continuous vomiting as a reaction. Charlie is FPIES to rice; and thus must avoid all grains, legumes and poultry. Who knew rice eliminated so much? Sigh.
EoE- eosenophilic esophogitis
The hardest to say and the most complicated. This is diagnosed only by biopsies taken during an endoscopy. A personal without EE has zero eosinophils. A person wth EE has greater than 15 in any given section. Charlie's numbers were higher than 15 in two portions thus diagnosing EE. It has been compared to asthma of the esophagus by which the white blood cells rush to the area when a trigger is present causing inflammation and pain. Typically it can be managed with some medication and mostly diet. The top triggers are wheat, nuts, egg, soy, shellfish, fish and dairy. So, that limits diet yet again (hence the reason why we have been a bit perplexed about moving forward with diet etc)
We have an incredible team here in Charlotte; however, our allergist and pediatrician recommend a true center that cares for children with EoE to care for a little one as complicated as Charlie. So, when we learned that CHOP is one of the top programs in the world and you have a village there, you go!
We met with the team for about 4 hours to review every single
Detail about Charlie. If anyone reading this were to say, what is your one piece of advice? I would say, if you know deep in your heart something is not quite right with your child, write everything down. I have kept a detailed food journal and behaviors / sleep for Charlie for over 6
Months and boy was I glad! They asked us dates, timing, food introductions, reactions... And we KNEW IT ALL. (Proud
Moment for Derek and I!)
And now... The plan moving forward ...
- change some medicines (increase one, take one away)
- start a new multivitamin
- complete dietary analysis of Charlie for 4 days to review
All Vitamins and minerals he gets from his foods
- see a new GI doctor in Greenville SC
In January (visit and endoscopy) *this doc was a resident and fellow at chop and follows all of the same protocols
- continue with our team here who will follow the plan from CHOP
- don't change any foods at this point and HOPE for lower eosenophil counts during his next endoscopy to introduce new foods once he is baseline
The team is supportive, so so smart and dedicated to sweet Charlie. He charmed them all with those sweet sparkly eyes, chunky cheeks and love for life! We asked Charlie to thank them all many times as they came in and out of the room and he would raise his arm high and mumble "your welcome" to them! Of course, they thought he was pretty great (oh, and they love his weight as well!!!!)
So all in all, our sweet Charlie is in great hands and we are thankful and peace filled knowing we have a PLAN!!!!
To begin... Our little village
We have a beautifully grace filled and loving little village. Thank you to each of you-- for the prayers, for the thoughts and for the love for our family.
You never imagine after working in a magically wonderful healing place for 6 years that you will be back, with your own Child. how thankful we are to have a village in Philadelphia and at CHOP. After a long day of appointments at CHOP we have a solid plan moving forward and the team has a good grasp on our sweet Charlie! Peace.
We are thankful for every little and big act of kindness... From groceries for Charlie, a ride from the airport, the messages, the phone calls, love, care and play dates for william, care for him from both sets of parents, care for our home and our pups... And the list goes on. Thank you from the bottom of our hearts💗💗💗
More details to come...
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