Food Visit 3, Part III: The Appointments ... Aka the reason we are there!
Reducing travel stress, ensuring there are fun things along the way and familiar items to get excited about are all great, and help the trip … however, the true reason we are doing all of this is for the medical appointments. Here is where we will breakdown how they went, what we did and El’s reaction to all!
El’s appointments started the morning after we got there with her first round of challenges. If this is the first appointment recap you are reading a ‘Challenge’ appointment is when she challenges a high-dose of the food she has currently been treating at home.
We spend roughly 9 weeks at home doing daily treatment of foods, where she ‘treats’ the same dose of the same food for one week, then ‘up-doses ‘ every week until we go back to California or we have hit the ‘cap’ on how much she is allowed to eat. Most foods are 9 week up-dosing so if we go back beyond 9 weeks she holds the last dose amount until we go back.
This past 9 week treatment phase she was treating denatured mare milk, chestnut and buckwheat, with an ‘outright’ soy challenge (which means she didn’t have to treat at home where she already consumes a lot of this protein).
Her first challenge was chestnut, then buckwheat and her outright soy. After each challenge she has to exercise for 5 minutes straight. She can choose to run up and down the hall, jump on a trampoline or use the stationary bike (little big for her, but she can do it!). Post the chestnut challenge she decided to jump on the trampoline, which they bring into her visit room and she can watch a show or listen to music while she jumps. This kid jumped her heart out for five minutes while watching Paw Patrol and dancing.
Immediately after the jumping she is hooked back up to the heart monitors, has her blood-pressure checked and they listen to her lunges. After reviewing the vitals and no visible irritation (hives, redness, swelling, stomach pain, etc.) she PASSED CHESTNUT!!
After she passes a challenge she moves right on to the next food. This kid gobbles the food right up, every time!
She quickly ate the buckwheat mixed with melted Enjoy Life allergy friendly chocolate, and decided to run around the hall this time. They have a long hallway with tape on each end that the patients run back and forth to for the five minutes. She was a trooper in her sneakers running up and down the hall and even convinced me, mom, to join in. Phew! I give those kids a lot of props with the intense 5 minutes of exercise. It’s a lot for their little legs and small lungs!
The timer went off and we quickly went back to the room where she was hooked up and vitals checked again. SHE PASSED BUCKWHEAT! This was exciting and a little nerve-racking to us where she had been consuming buckwheat right along without knowledgeable issue. However, the closely linked proteins to her anaphylactic allergens placed this food in her sensitive column triggering it to be a ‘treatment food’. Because of the challenge – which we did two of – she was able to pass this one and not have it capped, allowing us to use it in baking again!
We were about 30 minutes into the appointment and she was already on her third and final challenge of the day! Outright soy was next. El gulped it right down and went back to the trampoline to be able to watch some more Paw Patrol. (I have to say I was slightly relieved to not have to run up and down the hall in flip-flops again myself lol. Though I would have happily…)
Another success! She passed all three challenges with flying colors and moved chestnut, buckwheat and soy into her maintenance foods, all not capped.
With the items ‘not capped’ this allows her to have them throughout the day in various foods, drinks, etc… She still needs to eat the defined amount in the morning with her maintenance food, but it is also ok if she eats a granola bar that has buckwheat in it or has a glass of soy-milk at lunch. The one big caveat is she cannot have any of her maintenance food within 4 hours of her treatment foods. Our rule is she cannot have any maintenance food after 1pm. This allows her to have a few more options for lunch time and we can still start treatment food by 5pm. On days she doesn’t consume maintenance food after her morning allotment we are able to start treatment even earlier. Depending on the day and activities we strategize this one!
You can check out the fun we had outside of appointments in article “Visit 3, Part II: El’s List“.
Day two came a little early with an 8am PST appointment. El would be challenging one more food, Mare Milk, and dosing for her upcoming treatments at home.
She started with the denatured mare milk challenge, again drinking the milk right up! The trampoline was the exercise of choice and she decided to watch a building show on YouTube Kids. After being hooked up to the monitors and vitals checked again … she PASSED! This was a big one as it is keeping us right on track for her to dose clarified butter on her next trip!!
The mare milk challenge was the final challenge for this visit and we moved into dosing for her fourth visit. Dosing moves us into a new set of foods which consisted of macadamia nut, pecan, almond and donkey milk. If the dosing in clinic all pass, these foods move into her Treatment foods at home. They start with micro-doses, gradually moving to fractional teaspoons until our next visit where she will then challenge in the office.
First up for her was almond. Where the dosing/introduction of these nuts is so small the clinic actually makes gummies with the micro amounts of these nuts for the patients to start on. She quickly chewed up the almond gummies.
Dosing is different from challenge, where you sit relaxed with the monitors still connected for 15 minutes. Post the 15 minutes more vitals are taken, her skin is looked over and they examine the inside of her mouth for any swelling or discoloration.
We do a variety of things during this time from color, workbooks, tablet play and watching something on SoCal’s “big TV’s”. We colored for a bit on the paper lining her table and then we transitioned to watching the rest of the Paw Patrol show she started during her first challenge.
Almond dosing PASSED and would move into her at home treatment!
Once El’s stats were read and recorded we moved onto her next gummy – macadamia nut. Pretty cut and paste from the last one. She ate it quickly, we talked and played tick-tac-toe on the paper and then she watched a few more minutes of TV to complete her 15 minutes.
El’s vitals all looked great, her belly felt good and she PASSED macadamia nut! SoCal does not do more than three dosing and/or challenges on the same day so this concluded or second day appointment with all stars and a happy little girl (and Mom!).
From there we took off to the beach for the day, read about it in “Trip 3 – Part two: El’s List“.
The third and final day of appointments was quickly approaching and not only would we hopefully wrap up her appointments successfully, we would also be flying out later that day. This is always a stressful one for me. We ensure there is more than 5 hours from the end of her appointment until we board the plane. Ideally I would love a full day, but with flights, costs and school/work responsibilities its usually more convenient to fly out that night (Trip 3 – Part Two, you can read about our day of flying out).
We were up early Friday morning to use the gym, have some breakfast and head off to her last appointment at 8am PST. This appointment was dosing only for donkey milk and pecan. Pecan is very high on her tree-nut allergens, keeping a positive attitude and ensuring I did not exude any stress to El was difficult and necessary.
She ate the pecan gummy like a champ and we hung-out watching a show and playing tick-tac-toe while she sat hooked up to the monitors and timer set for 15 minutes. She passed! This momma exhaled a heavy sigh of relief … where El was just excited to move on to the new milk.
I love watching her taste, compare and describe her thoughts and feelings around the different milks – between camel, mare and now donkey milk! This 5 year old has quite the pallet. 🙂
She drink it right down (1 ml) and said, “yum! I like that better than camel”. We played some more games, watched some more TV and another 15 minutes passed just like that. Her vitals were checked, skin checked, mouth checked and she PASSED!
El had successfully passed all her dosing and challenges across the three appointments this trip. We would be moving her prior treatment foods to morning maintenance and the new foods she dosed into a treatment schedule. We now had a little more time to talk with the doctor about the next 9 weeks, her schedule and other questions or concerns we had.
The biggest concern was the supply chain shortage and exporting issues with Donkey milk… Due to the clinic (and us) not being able to get it for a few more weeks we actually decided to take a full week plus off of treatment. This was cleared with SoCal Food Allergy, and a nice pause for all of us.
We booked her appointments 13 weeks out from the last instead of the standard 10. This allowed us a few weeks of flexibility in case the donkey milk did not show up in time and gave El a full 3 weeks in school before we had to pull her out to go back to California.
I am very thankful for this time. As we moved into the last week of June and first week of July at home, it was nice to have a ‘start to summer’ break where we enjoyed some adventure, activities (and a few late nights) without the worry of treatment schedule and conflicting foods. We only took 8 days off which seemed like a lot, but also just enough that she wanted to start again. She dove right back into treatment like the star she is and I am sure will continue to be throughout the program … her end goal is always simple, but so important, “I am so excited to have a sleepover at my friends house”.
Until next visit …
Thanks for following along!