Allergy parents - OIT & insurance/epinephrine

[Poppy]

Since DS will be going back to school, we are catching up on all his allergy stuff we've been putting off.

1) We got his first blood test on the allergist's recommendation (previously just did skin testing) and unfortunately, he is showing sensitization to peanuts still, including the particular protein the allergist considers the one that is likely to cause anaphylaxis. So based on that, OIT (eating progressively more peanut to build up a tolerance) is now on the table for the first time. We meet with the Dr to discuss next week. What should I ask? Has anyone here done OIT? I would love to reduce the chances of anaphylaxis after accidental exposure but I am worried about the process and the maintenance, and the chance that it might not work.

2) I am trying to refill his epi pens but the insurance site is telling me that only two sets are covered. We will need to leave one set at school and the after school program says they need an additional set because they can't access the school's pens. So we need a third so that we can have a home set, too. Has anyone run into this? Can we file for some waiver to the insurance company or will we need to purchase OOP?

[starburst604]

Hi Poppy! We are 1.5 years into OIT for egg with my DD (she's 6) and will do peanuts after this. Happy to answer any questions!

For the epi pens, they will just fill those 2 at a time. If you go in for a refill they should cover that, because theoretically you could have needed to use one and it has to be replaced. I've not found it a problem to buy 2, then order a refill a week later. Like you we need several sets.

[boiler717]

Can your son self-carry the epi pens? I prefer that to sets stored in the nurses office. They school should definitely have a work around besides dedicating two sets to them.

[starburst604]

So for our first consult for OIT I provided her with all of DD's past bloodwork and skin testing. We talked about her prior reactions, and which allergen was the priority for us and we agreed that egg was a good first step. Some things to ask about would be how often you will come in for escalation and how long you will be there. For us it's every 2 weeks for escalation and she sits for an hour after the dose. You'll probably want to know what you can expect as far as reactions go - just be aware that can be so individual and hard to predict. Our provider told they are able to monitor on site if they do have to use the epi and 99% of kids do not need to go to the hospital for observation.

OIT can be a long commitment. We could have been finished by now, but things have come up that caused us to have to pause, down dose and ramp back up again. First was DD was seriously ill and hospitalized in Jan. 2020. Then came Covid and we just maintained the dose she was on from the spring through summer and started escalating again in Fall 2020. But that's the good thing about it, you can just maintain if things come up and you can't make the escalation appointment. You'll need to think about what time of day you will dose, because the child can't be active for 2 hours after. For us, after dinner works because she has a full belly (needed to avoid reaction) and she usually just relaxes after dinner. Anyway as I mentioned we've been at it for almost 2 years now and DD has gone from taking a few drops of a solution of 1/100 egg white/water to 5ml of straight egg white! It still amazes me every evening when we do her dose that we've come this far. Pretty soon she should be able to do a baked good egg challenge and we may stop there because right now our goal isn't to have her be able to eat a scrambled egg but to be able to have it as an ingredient in baked goods and other foods.

ETA: in our case (again very individual) she has only reacted once during OIT, very early in and she vomited with no reaction beyond that. 

[Poppy]

Jul 22, 2021 13:45:22 GMT -5 starburst604 said:

Hi Poppy! We are 1.5 years into OIT for egg with my DD (she's 6) and will do peanuts after this. Happy to answer any questions!

For the epi pens, they will just fill those 2 at a time. If you go in for a refill they should cover that, because theoretically you could have needed to use one and it has to be replaced. I've not found it a problem to buy 2, then order a refill a week later. Like you we need several sets.

Thank you!

How did your daughter tolerate the treatment? Does she have ongoing mild symptoms (eg skin or gut issues?). How big of a PITA is the maintenance?

ETA sorry I was writing while you posted, I see you addressed some of this.

[starburst604]

Jul 22, 2021 14:03:01 GMT -5 Poppy said:

Jul 22, 2021 13:45:22 GMT -5 starburst604 said:

Hi Poppy ! We are 1.5 years into OIT for egg with my DD (she's 6) and will do peanuts after this. Happy to answer any questions!

For the epi pens, they will just fill those 2 at a time. If you go in for a refill they should cover that, because theoretically you could have needed to use one and it has to be replaced. I've not found it a problem to buy 2, then order a refill a week later. Like you we need several sets.

Thank you!

How did your daughter tolerate the treatment? Does she have ongoing mild symptoms (eg skin or gut issues?). How big of a PITA is the maintenance?

ETA sorry I was writing while you posted, I see you addressed some of this.

I was on the lookout for this after all the research I'd done, but fortunately she's had zero ongoing issues. Nothing with her gut or skin. She used to get eczema as a baby and then sometimes in the dry skin season in the following years, but none since starting OIT. Can't speak to the maintenance period yet - the dosing has been fine but it may be a challenge for us to find something that she will agree to eat daily to maintain. Because she's never had things like muffins, cookies etc, she thinks she doesn't like them and won't try them at all even when they are safe for her. But I'm gonna figure out something dammit!

[magpie]

I'm no help on OIT, but my insurance works like starburst604's for epipens. You fill it, wait a week and then fill it again. The extra set counts as a refill.

[starburst604]

Jul 22, 2021 13:46:27 GMT -5 boiler717 said:

Can your son self-carry the epi pens? I prefer that to sets stored in the nurses office. They school should definitely have a work around besides dedicating two sets to them.

Our school doesn't allow that, and we have to keep a set both at after care and the nurse's office. I actually feel a little better about that - while I'm in the habit of having the epipen with us all the time, I don't want to rule out that I could ever make a mistake and not have it in her backpack for some reason (like I wash the backpack and forget to put it back or something). 

[Poppy]

Jul 22, 2021 14:10:42 GMT -5 starburst604 said:

Jul 22, 2021 14:03:01 GMT -5 Poppy said:

Thank you!

How did your daughter tolerate the treatment? Does she have ongoing mild symptoms (eg skin or gut issues?). How big of a PITA is the maintenance?

ETA sorry I was writing while you posted, I see you addressed some of this.

I was on the lookout for this after all the research I'd done, but fortunately she's had zero ongoing issues. Nothing with her gut or skin. She used to get eczema as a baby and then sometimes in the dry skin season in the following years, but none since starting OIT. Can't speak to the maintenance period yet - the dosing has been fine but it may be a challenge for us to find something that she will agree to eat daily to maintain. Because she's never had things like muffins, cookies etc, she thinks she doesn't like them and won't try them at all even when they are safe for her. But I'm gonna figure out something dammit!

Thank you so much.

Yeah the maintenance is a concern. They told us a little over the phone: 3 months treatment, coming in every 2 weeks for escalating doses. I think they said maintenance dose is 3 peanut kernals/day.

DS used to be allergic to milk and eggs also, but luckily has outgrown them. But he still absolutely refuses to eat cheese (I think because he's not used to it; luckily he eats eggs and drinks milk without complaint). I am worried it will be a battle to get him to eat peanuts. Ideally they will allow 3 peanut M&Ms as maintenance. Lol. Probably not.

[starburst604]

Jul 22, 2021 14:19:08 GMT -5 Poppy said:

Jul 22, 2021 14:10:42 GMT -5 starburst604 said:

I was on the lookout for this after all the research I'd done, but fortunately she's had zero ongoing issues. Nothing with her gut or skin. She used to get eczema as a baby and then sometimes in the dry skin season in the following years, but none since starting OIT. Can't speak to the maintenance period yet - the dosing has been fine but it may be a challenge for us to find something that she will agree to eat daily to maintain. Because she's never had things like muffins, cookies etc, she thinks she doesn't like them and won't try them at all even when they are safe for her. But I'm gonna figure out something dammit!

Thank you so much.

Yeah the maintenance is a concern. They told us a little over the phone: 3 months treatment, coming in every 2 weeks for escalating doses. I think they said maintenance dose is 3 peanut kernals/day.

DS used to be allergic to milk and eggs also, but luckily has outgrown them. But he still absolutely refuses to eat cheese (I think because he's not used to it; luckily he eats eggs and drinks milk without complaint). I am worried it will be a battle to get him to eat peanuts. Ideally they will allow 3 peanut M&Ms as maintenance. Lol. Probably not.

I belong to some OIT groups on FB and lots of people maintain with peanut M&M's!! A peanut is a peanut!

[Poppy]

Jul 22, 2021 13:46:27 GMT -5 boiler717 said:

Can your son self-carry the epi pens? I prefer that to sets stored in the nurses office. They school should definitely have a work around besides dedicating two sets to them.

Ugghhh this will be a novel.

The district has a policy permitting self-carry but I can't get it to load right now. Not sure about the aftercare program; when I asked if we needed a second set even though they are on school premises, she said, "We will need to have our own Epi-Pen as we cannot access the school’s clinic during program hours. What a lot of families will do is split a package of Epi Pens between the school and <program>. So the school would have one pen and <program> will have the other. If you choose this option we would just need a copy of the prescription label from the box to keep with the Epi-Pen."

This brings up my issues of trust regarding caregiver training. I know the school mandates training on EpiPens for teachers with students who have them. But I don't know if that is true for this program. And even when they have training, I don't fully trust that things wouldn't go sideways if a kid had a reaction. But like, splitting the pens into singles is NOT appropriate, right? I get that the pens are expensive but... ugh.

wrt self-carry, even if that is an option, I do not know if I prefer it. My son is very responsible, but he is 6. I don't know if he can really be expected to remember 100% of the time (heck, there have been occasions where H and I both forget to grab the pens on the way out the door). I honestly don't know which method would be safer, but I am inclined to just pay what we need to pay to get the extra set and leave them on-site.

[Poppy]

Jul 22, 2021 14:11:27 GMT -5 magpie said:

I'm no help on OIT, but my insurance works like starburst604 's for epipens. You fill it, wait a week and then fill it again. The extra set counts as a refill.

Thank you. We might just try this strategy.

I am going to take this opportunity to vent, though. I am looking on the insurance company's drug cost estimator site. It says $262 for one set, $290 for two sets. It won't give me a price for 3 since that exceeds maximum covered quantity. But I guess with this method we will have to pay $290 + $262 for 3 sets, which is annoying.

[starburst604]

Jul 22, 2021 14:34:46 GMT -5 Poppy said:

Jul 22, 2021 13:46:27 GMT -5 boiler717 said:

Can your son self-carry the epi pens? I prefer that to sets stored in the nurses office. They school should definitely have a work around besides dedicating two sets to them.

Ugghhh this will be a novel.

The district has a policy permitting self-carry but I can't get it to load right now. Not sure about the aftercare program; when I asked if we needed a second set even though they are on school premises, she said, "We will need to have our own Epi-Pen as we cannot access the school’s clinic during program hours. What a lot of families will do is split a package of Epi Pens between the school and <program>. So the school would have one pen and <program> will have the other. If you choose this option we would just need a copy of the prescription label from the box to keep with the Epi-Pen."

This brings up my issues of trust regarding caregiver training. I know the school mandates training on EpiPens for teachers with students who have them. But I don't know if that is true for this program. And even when they have training, I don't fully trust that things wouldn't go sideways if a kid had a reaction. But like, splitting the pens into singles is NOT appropriate, right? I get that the pens are expensive but... ugh.

wrt self-carry, even if that is an option, I do not know if I prefer it. My son is very responsible, but he is 6. I don't know if he can really be expected to remember 100% of the time (heck, there have been occasions where H and I both forget to grab the pens on the way out the door). I honestly don't know which method would be safer, but I am inclined to just pay what we need to pay to get the extra set and leave them on-site.

Re: the splitting of the epipens, you're right that it's not best practice. After DD did have to receive the epi her second week of kindergarten, I wouldn't want to go that route. She only needed one pen and EMT was there minutes later, but it took me a couple of days to get a new set of pens ordered and back in the nurse's office. If lightning struck twice and she needed it again before the new pens were there and the other one was somewhere else on the premises it could have been tricky. But, I also never would have thought that her second week of school they would give her some animal crackers with eggs either! (There was a big clusterfuck that happened when the free food for all schools program got launched that week and the school nurse was NOT happy about it at all. )It was the first time in her life she needed to get an epipen and it was....scary!

[starburst604]

Poppy - do you have a deductible for your prescriptons with your insurance? The cost for our pens can be all over the place depending on where we are in the deductible cycle. I try to stock up on them end of year when we've met the deductible and they cost $0!

[Poppy]

OMG starburst604 , I'm so sorry. I would have been so upset.

We are really lucky and have never had an accidental exposure (unless you count the time we gave him peanut butter as a baby and he had his first reaction) and have never had to use the EpiPen. But yeah, I have read too many stories where the first one didn't work or was administered incorrectly and the second one was needed. No way am I splitting them up. But I always have this fear that he will have a reaction at childcare/school and the response will be botched. That's a huge factor in our consideration of OIT.

[Poppy]

Jul 22, 2021 14:45:54 GMT -5 starburst604 said:

Poppy - do you have a deductible for your prescriptons with your insurance? The cost for our pens can be all over the place depending on where we are in the deductible cycle. I try to stock up on them end of year when we've met the deductible and they cost $0!

I do not know how Rxs work with our deductible. He has a 2k deductible but we just might meet it after OIT (7x $70 copay plus who knows what else). Probably need to fill the EpiPens before we hit the deductible, though. I will try to be more aware next year.

[boiler717]

Jul 22, 2021 14:56:00 GMT -5 Poppy said:

OMG starburst604 , I'm so sorry. I would have been so upset.

We are really lucky and have never had an accidental exposure (unless you count the time we gave him peanut butter as a baby and he had his first reaction) and have never had to use the EpiPen. But yeah, I have read too many stories where the first one didn't work or was administered incorrectly and the second one was needed. No way am I splitting them up. But I always have this fear that he will have a reaction at childcare/school and the response will be botched. That's a huge factor in our consideration of OIT.

I’m glad you aren’t willing to split! That is very unsafe.

[court26]

I think a lot of this has been covered, but my DS is 2 years into maintenance for egg OIT and 1 year for peanut OIT so happy to answer questions. Also he went to 2 different offices based on no options in our area to start. I took FMLA and drove him 3 hours away for the egg! It is a huge commitment. He is also 4 years into allergy shots for his environmental stuff- each of the immunotherapies is 5 years and I feel like it’s taking forever but sooo worth it!

We have had to get a waiver before because aftercare/school/home sets all needing to be not expired and it has never been an issue. Now we have a combo of epi pens and Auvi-Q and I don’t know if that makes a difference.

[whattheheck]

Do not split them. They are packaged as a pair b/c sometimes you need a second shot before emergency help arrives.

How much are you willing to spend out of pocket?

If you have no objections to using a Christian based program - RxOutreach has junior epi pens - a two-pack for $30 but they are unfortunately currently unavailable (I'm including a link anyway in case they come in stock and you want some as a back-up). rxoutreach.org/find-your-medication

Another option is GoodRx where they seem to run about $100-$125 for a pair depending on the pharmacy. www.goodrx.com/epinephrine-epipen?c=homepage-lander-sem-6&gclid=Cj0KCQjw0emHBhC1ARIsAL1QGNcK8gtgxxhqvAH4uqlKTIpEuwxhlQikpLarZ3cs4EyvwAx8Lf7bAU0aAgEbEALw_wcB&gclsrc=aw.ds

Also - speaking to your pharmacist is another option. Mine is a freaking wizard when it comes to getting stuff over-ridden on my or my kids' insurance. She is particularly helpful with my kids because since they are insured through my ex I do not have access to their health insurance (despite a Court order saying that I do).

Good luck.

[jg183]

We have been in OIT peanut maintenance for 4 years. My son is still allergic to egg and has tried OIT for it a few times but his anxiety has gotten in the way when we got to a reasonable amount. He is doing an oral food challenge later this month though because his numbers have decreased.

The maintenance can be annoying and updosing is very stressful but the peace of mind that you get after is amazing and so worth it. At least with OIT you know what they have eaten and when you are just dealing with an allergy in general you always are wondering. I have so much peace knowing he can be around peanuts (which his school serves everyday).

let me know if you have questions

[Poppy]

Thanks so much for the OIT info. We met with the allergist today and I felt really well prepared to ask our questions. We decided to start OIT in a few weeks! I feel like it's not optimal timing with school starting but we're anxious to get that protection.

starburst604, court26, jg183: It sounds like this practice group targets 3 peanuts as a maintenance dose, whereas the FDA approved treatment targets 1. The Dr we spoke with today also said that at his old practice, a lot of families wanted to try to get to 8. Can I ask what your maintenance dose is/will be?

[court26]

Poppy for us they considered getting to maintenance of 1 peanut to be safe for cross-contamination, 4 to be safe for “bite proof” and 8 to be tolerated for regular eating. My son hates the taste and texture so he stopped at 4 and eats the equivalent in peanut butter (1 tsp) everyday on a cracker, chased by 2 mini Hershey bars (haha). He never wants to be able to eat anything with peanut butter so we allowed it.

[court26]

And as long as during the updose period he stayed on the same peanut product, after a certain week, my son was able to dose with peanut pieces, Reese’s pieces, peanut butter, etc. they had a list with the equivalent amounts of each thing. He thought he would like the candy but it was a no go. It was nice to have options.

[gretchenindisguise]

For the epi-pen issue - check into auvi-q. I was able to get one free or really cheap through my allergist.

I participated in the study (as an adult) sponsored by aimmune, which was oit for peanut but starts with a peanut powder.

I still eat a peanut every morning I shell a week's worth on Sundays and just put one on my breakfast every morning. It's pretty easy unless I forget to prep on Sunday then I get thrown off course a bit. It still completely freaks my mom out. I was worried because I used to have a very averse non-physical reaction to peanuts - it was like before they were even in body warning bells were going off and saying danger Will Robinson! That went away after a while. Now it's just something I take every morning like medicine.

[jg183]

my friend did the patch study and was told that the long term recommendation for the patch was to do oit after because it doesnt get far enough!!!
My son eats 3 peanutbutter m&ms each day (now he's down to a few days a week after 4 years of maintenance). At the end of updosing of 4 for awhile he had to do a challenge of 12 in one sitting which he passed and after that I was able to be calm. He hates the taste so he is not interested in eating a large quantity and I feel good that he is safe against a decent amount