I called around and found a pharmacy not far from our pediatrician and hospital, which is roughly 45 minutes to 1.5 hours from us, depending on traffic. I'm out there quite often, so it really isn't out of our way. I can drive there in my sleep by now. I asked if they could make her appetite stimulant into a suppository and they said yes, the pediatrician faxed the order in, and it was ready the next day. When I picked it up, the pharmacist said, "You know, we can make medications into transdermal gels, too. It is less intrusive than these are." He went on to tell me it is frequently done with Zofran and can be done with just about any medication. KayTar takes acetaminophen suppositories for her episodes, because it is all the pain relief we can get in the proper form, and she takes phenergan suppositories also due to the available forms. But now, this pharmacy can make ibuprofen and Zofran into transdermal gels to be applied to her wrist during an episode, and we never have to physically disturb her. It was like the clouds parted and the angels sang. I almost kissed the man. It was a heavenly moment. We have an entire new world open to us now, a world where KayTar can get any medication she needs and we never have to get it close to her mouth. It is amazing and I wish we had known about it sooner. I am thrilled! The downside is that they don't take insurance up front, you have to file a claim to be reimbursed. However, the up front cost is minimal for the service they provide. We got a month of KayTar's appetite stimulant for roughly $30. Ask me if it is worth it. Because it so is. If you have trouble getting your child or infant to take medications, I highly recommend it. They can also neutralize the bitterness of medications, unlike Walgreens or the like that just add an additional flavor over the top. They can make gummie bears or lollipops. They can do just about anything with these medications.
As for how KayTar is doing on the medication? It is making a difference. Not such a difference that we can stop Pediasure, but she is desiring to eat now, almost daily. Most days she still refuses to eat until the evening...but then she might take two jars, or a jar and a yogurt, or a yogurt and chips. She ate like a hog (okay, for HER) on Monday...1 serving of chips, 2 meat circles from her brother's lunchable, 1 Oreo, 2 jars of food. It was amazing, not only because she ate, but because of WHAT she ate. She's NEVER touched that sort of meat before this weekend. And Oreos are a no-no because of the cream inside, but she chowed down on that sucker. We are still letting her take the lead, but it doesn't feel like such a crisis, because I know most days, eventually she'll eat something...and even if she doesn't, SHE IS FINE. We saw her ECI nutritionist for the last time Monday and the squirt has finally gained! She is 29 pounds now, finally, after not gaining an ounce in what feels like forever. I've finally breathed that sigh of relief...I know that even without the food, she is okay. The eating is just icing on the cake (without all that pesky gagging). I'm so glad we found a pharmacy that enables us to get this medication into her. Surprisingly, she has no qualms about getting her twice daily "bummies" as we call them. She says "Bummies go ight hee-yah ina diaper." I think it is so strange that she prefers that to swallowing a bit of medication, but then, she's KayTar, so it makes sense. I'd love to peek inside that little brain of hers and experience this world the way she does. It would be an eye opening experience for sure. Knowing she processes things differently is one thing, but to be able to experience it? That would be amazing. Maybe one day the scientific community will be able to simulate what it is like for these sorts of kiddos, so we can all really understand what it is like to walk a mile in their shoes. I'd love to know.
Absolutely awesome for KayTar. WE have used a compunding pharmacy before for epilpesy meds that are pill form only and non-crushable.
Ny cahnce will you tell use what theya re using for an appetite stimulant. I know lots of kids on Topamax, which is an appetite depressant. I have heard periactin will work, but it's not designed as an appetite supporessant, that's just a side effect.
Hope this "good" eating continues!
wow, did I type blindfolded? Sorry!
It IS Periactin. You're right that it isn't designed for that, but we have her on a low dose to try and keep other effects to the minimum, but since it is a antihistamine, it is actually helpful with her chronically drippy nose, too.
Brilliant that they can do that with the medicine! And good for Kaytar on the suppositories, because lord knows they are not for my "bummie."
But most of all, check out that girl eating! And new foods to boot!
I'm glad you found something that's working.
I used to get my last cat's epilepsy medication compounded at a special pharmacy, because it was the only way I could get it into her. And she desperately needed it. The pharmacist was cool. He usually used tuna or other yummy-cat loving treats out of his freezer to mix it with.... :-)
Not that I'm comparing your daughter to a cat, understand, I just think the compounding option really can be a livesaver.
look at her eating! Kyla, that's great.
it's sad that there's not more info out there about alternative methods of medicine delivery...thanks for doing your bit.
What a great step forward! It makes you wonder why no one thought of this before and why this isn't more readily available.
I am so happy that Kay-Tar is improving. I can feel your lightening in your writing...
That is such wonderful news! The eating and the medication!!
Charlie's ENT said that young kids feel the same modesty about their mouths that we feel about our bottoms. That's why Charlie freaks out when the doctor tries to look in his mouth but has no problem with a rectal thermometer. Strange!
So glad it is working!
And I bet we use the same compounding pharmacy.
KayTar outweighs Persistence now.
And you will have to take me out to lunch or for cocktails to compare sibling notes because I can't seem to write all I want to say. :)
P.S. Your blog HATES me. I can't get my comment up.
Oh, I nearly cried to see that photo!
It's so good to find a team of health professionals who can work with you.
I had no idea they could do this with medications! Very informative Kyla, thank you! I'm just so pleased to hear that lift in your voice. And so happy for Kaytar to be desiring food again.
Geez, I really want to check into that for The Girl. I'm so glad you found a way to get your baby eating.
That is wonderful Kyla!
So glad to hear the meds are working for Kaytar. And 29lbs is awesome!
Definitely a trooper!
Oh my goodness, that is so wonderful. I'm so thrilled for you and KayTar. Yay KayTar!
I'm so glad you found that pharmacist. And that you got such wonderful information to share.
Great news!!! Love the Pic of the little one eating.
I would drive for that magic, too. Great, great news. And I see that your header is out of quarantine. A good week all around. ;)
I'm so glad you were able to find someone to make the medicine that will be good for the girl! I didn't even know there were that many options out there...I was very excited, and I don't even have anyone in my life that needs anything like that at the moment...thank you for sharing, and YAY for the progress with the food!!
Wow, awesome update! So glad to hear it.
Now that is brilliant! Gosh I wish i'd had a pharmacists like that when Willow was a little, it would have made the world of difference.
I almost cried to see her eating :)
Hooray! This is wonderful news, and makes me wonder if we need to look into appetite stimulants for L.--sounds like a dream!
I had the a similar issue with formulations for Julia's reflux meds. Most pharmacies, including the one at the children's hospital, made them in concentrations that required she take 5-10mls. When we brought her home she was taking 75 mls of feeds and would vomit so to add 5 or 10 mls was just not going to work.
This gel is a dream though. I am going to keep that in mind for the future. A future in which hopefully both our kids have no gtubes!
That is AWESOME! The weight gain AND the new gold mine for medicine AND the eating!
I'm also inquiring about some websites about the things we have been discussing. I hope to have some input soon.
Huzzah! Hurray! What a breakthrough!
So many good news in this post. First off, the pharmacy...I think I WOULD have kissed that pharmacist if I'd had a chance! (Although from now on, I will be annoyed that all other pharmacies don't offer the same services...my youngest is awful at taking oral medication, too. This could have saved us so much stress).
Second, the eating! She is gaining AND she is eating new things. I think she's turned a corner, Kyla, and only thanks to your and Josh's patient and persistent parenting. Well done! Saviour the victories, my friend, as I'm sure there'll be more ups and downs.
That is FANTASTIC news all around!
(Wish I had known about gels when Ben was a baby!)
That is wonderful news.
dude--transdermal? that is so so so cool!
Running on empty
I had NO idea about transdermal gels. Thanks for the info! And WOW abut Kaytar's eating.
The Halleluiah chorus is going off in my head right now!! Hooray!!
Hooray for eating, Hooray for meds Kaytar can take! I'm so happy for you!!
Oh and by the way--my 4 year old weighs 26 lbs and my 3 year old weighs 25 lbs. Kaytar is kicking their booties!
YES! hot damn.
(and the pharmacists... are they hawt?)
Kyla, that is SUCH good news! I am so happy that one of your constant worries might be alleviated a bit now. It's not like you don't have others to keep you busy...
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