medications

Spawn of Satan

Posted on by bostonkisses

So since Judith’s weight hasn’t made a huge improvement, her GI decided to try an appetite stimulant to see if that would help her gain more. Granted Judith did gain almost 2 lbs. when we had her at the pediatrician, and that put her back up to the 2nd percentile for BMI, but she’s still within the really “dangerous” zone for a CF kid since she barely has any body fat and no reserves to fall back on if she would get sick. Ideally, she should be at the 50th percentile or higher so she has some wiggle room when she does get sick, so we need to do what we can to get her weight up, especially since there are direct correlations to better lung health when CF patients have higher BMIs.

Judith’s GI wanted to try the medicinal route before we move to discussing more “invasive” methods (like g-tube placement). We filled the prescription for periactin, gave it a try, and ended up having to pull her off of it for a week because her behavior was declining. The last time she behaved like this was when she was on prednisone during exacerbations last year. Stopping the periactin for a week gave her system time to reset itself back to it’s baseline, and her behavior improved.

Fast forward to a week later, when it was re-introduction day. I gave her an evening dose per her GI’s instructions, and about a half hour later it was pure hell in my house. Naturally all of this happened on a night when John had meetings at church, and I was flying solo through the massive meltdowns. She had 3 big meltdowns in the span of an hour and a half, 1 of which lasted for 20-25 minutes and consisted of full out kicking, shrieking at the top of her lungs, and throwing things at me. The other 2 weren’t quite as long or as violent, but were still pretty intense. Judith decided to go to bed a few minutes before 7p (a little over an hour before her normal bedtime), and was zonked for a solid 12.5 hour stretch. If I was able to handle alcohol, I would’ve had a nice, stiff drink after dealing with the demonic behaviors that were triggered from the periactin. Seriously, I was thisclose to calling our pastor or even a priest to see if they performed exorcisms, because these reactions are so not typical of Judith!

I had to send an immediate message to her GI doctor, letting them know that we can’t have Judith on this medicine, especially with her going back to school next week, and if she would be on it long-term, sending her to kindergarten with these massive mood swings and outbursts of anger. After talking to some other CF moms whose kids took periactin, this isn’t a super common occurrence, but it has happened for others; the mood swings, anger, and other changes were too intense and too much, so they pulled their kids off the med as well. I did notice that when a drug has the potential for a negative behavioral effect, Judith will react, and it can be extra intense because of her autism.

Thank God it was only 1 dose, and it was able to work through her system so we didn’t have a lot of lingering effects the rest of the week! Her GI doc will be getting back to us sometime within the next week to discuss other options, but after discussing this at length with John, we’re both ready to wave the white flag and push for g-tube placement. Neither one of us really wants to put Judith through this, but we feel like we’re out of options and don’t have much of a choice anymore. There are a lot of positives we can get from her having the tube, and we’re ready to do whatever it takes to get her weight up into a healthy range, ideally to a point where it will help her with her overall lung health.

Insurance Issues

Posted on by bostonkisses

Can I just say how much I hate insurance companies, yet at the same time am grateful for coverage? It’s a love/hate relationship that drives me batty on the reg.

The latest addition to this saga occurred on Wednesday. I have one of my personal medications on auto refill, so I get a text message or a computer-generated phone call each month when my prescription is ready to be picked up. Usually when that happens, I check Judith’s supply of meds, and submit the refills for her so I can pick everything up at once. Right now I have a huge stockpile of inhalers and miralax, so I only had to refill her monthly supply of hypertonic saline.

A couple hours later, we headed to the pharmacy, and I decided to go through the drive-thru to pick everything up, mainly because it was cold and I didn’t want to have to get Judith in and out of the car (right now, she takes forever to get herself situated so I can buckle her in). Everything went as expected, except my copay was higher than normal; because we have a program here in PA that allows people with certain conditions to receive medical assistance through Medicaid, Judith is automatically dual-insured without income being a deciding factor. I’m very grateful for this program, because I don’t know how we’d otherwise be able to afford all of Judith’s specialist visits, medications, and everything else. Anyway, the pharmacy worker said the copay balance, and I thought, “Wow, I can tell our deductibles reset at the beginning of the year!” I did think it was slightly odd, though, because last month my medications cost the same as they did back in December, but it was one of those things where I thought that maybe they were just catching it now.

Even so, I still felt like something was off. I had to pull over into a parking space so I could put my cards back in my wallet, and my gut wanted me to check the pricing on my meds. I’m really glad I did, because it turns out my meds still cost the same as they had in previous months (hooray for generics!). So what was off? I checked Judith’s hypertonic saline, and lo and behold, there was a copay charge. I looked at the insurance information, and I noticed they only billed our primary insurance, which triggered the copay.

Now I was starting to get frustrated, because this isn’t the first time that something like this has happened, and I knew that it was ultimately going to lead to a lot of time spent on the phone calling the insurance companies, and also on the computer messaging her CF team to potentially get a new prescription. So I pulled into a space, unloaded Judith from the car, and headed to the back of the store where the pharmacy was located.

Long story short, apparently our secondary insurance (which is the medical assistance) randomly changed their formulary, and was no longer paying for the generic brand of hypertonic saline we were getting. Yes, you read that right: they weren’t paying for the generic version. The version that’s cheaper than the name brand. The kicker? I just refilled the prescription 3.5 weeks ago, and it was the exact same brand. I totally get that formularies change at the start of the new year, and that happens for all insurance companies. But to randomly change it at an awkward time? Ridiculous. This isn’t the first time they’ve pulled this stunt, either. So I asked the pharmacist to just refund the copay that we had paid, and I would call the insurance company to see what’s going on. I’m not too worried about running out, because I have a full month’s supply still in the box thanks to my diligence in getting it earlier and making sure I had enough of a stockpile in case we had to increase treatments.

Another long story short, the secondary insurance is indeed not covering that particular generic brand anymore, but they’ll cover the name brand. I’m still scratching my head over this one, because it doesn’t make sense to me to contract with only the name brand and end up paying more money in the long run, but whatever. Their trained dogs, their circus and all that. I sent a message to clinic to get a new prescription for the name brand, HyperSal, and they sent it immediately, including a higher amount to fill per month so we continue to have extras on hand when we need to increase treatments!

Go figure, after all of that time spent trying to figure this shit out on Wednesday afternoon, the prescription is hanging in limbo, waiting for, you guessed it, insurance approval. I’m willing to bet gobs of money that it’s our primary that’s the hangup this time, and if it is, that means it’s going to get worse because they absolutely refuse to coordinate benefits with Medicaid (and won’t give me an acceptable answer or explanation as to why, either, and just say “because” when pressed).

I mean, really people. Why do you keep pulling these shenanigans?! JUST APPROVE THE DAMNED MEDICATION ALREADY! It’s not that freaking complicated!

The sad part is, we’re not the only ones fighting battles like this. Millions of people around the U.S. go through this constantly as well, and it’s ridiculous. Our system is so incredibly broken, it’s disgusting. No one should have to be saddled with ridiculous co-pays for crucial medications needed to help them survive or improve their quality of life! No one should have to jump through 50,000,000 hoops heavily wrapped in red tape to access what they need for their health. For those of you fighting insurance battles on a regular basis, I feel for you, and know you’re not alone in these frustrating moments.

Oh, Hey There, Reflux

Posted on by bostonkisses

It’s baaaaaaaaaaaack.

That pesky, silent invader has returned. Honestly, I’ve had my suspicions that it never really got to the point where Judith did outgrow the condition, but because she wasn’t showing a lot of the “classic” signs of reflux (and we didn’t have a CF GI specialist to follow stuff like this), she’s been unmedicated for 4 years.

Backstory for new readers:

Because Judith was born prematurely at 29 weeks, she was rapidly diagnosed with GERD. Reflux is extremely common in preemies; hell, it’s pretty common with term babies as well! For preemies, the tendency to have various types of reflux is due to their systems being underdeveloped, which makes total sense when you think about it. And just like term babies, it can take some trial and error to find the antacid or PPI that will give them the most relief. Judith’s former pediatrician assumed that she outgrew her GERD when she was 1 year actual, and Judith’s former CF team decided to just monitor her for symptoms.

Fast forward to the present day, and I’m a bit frustrated that our former CF team didn’t do any testing to make sure the GERD was gone, or to see if it wasn’t gone/was recurring. I’ve questioned it for a few years, but was always told that she wasn’t symptomatic, so they wouldn’t put her on meds. Ok, I get that she wasn’t symptomatic, but now this means my child has been going unmedicated for who knows how long, and didn’t know how to communicate when something was bothering her! It makes me wonder if the issues of her stomach hurting after she eats or drinks something too fast that would aggravate reflux (hello, chocolate Pediasure!) was a symptom that was overlooked.

Anyway, yesterday I found out that Judith’s gastric emptying study was normal as far as emptying goes, but they were able to detect reflux. It’s not going into her lungs, so yay for that! I really wasn’t overly surprised when they said they saw it happening, and knew we’d be putting her back on the meds to help. So last night, we made the trek to CVS, in gross, snowy conditions, to pick up her Zantac.

Can I just say that while we did like our former CF team, I’m very, very glad we’re now at CHOP, and Judith is getting the GI attention she needs? Dr. M. is my new favorite person!