PatchMD: An honest review

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Nutrition is difficult when you’re not working with a complete gut. My son, L, has short bowel syndrome as a result of a congenital condition called gastroschisis; his intestinal motility has regulated quite a bit, and that has helped tremendously with his calorie absorption and hydration, which is why we have been able to wean him off of TPN and remove his g-tube over the last year and a half — but vitamins are a different story. He has always had difficulty maintaining his vitamin levels, even when he was getting a vitamin cocktail straight to his veins every night, and without TPN his vitamin deficiencies remain our biggest everyday struggle.

L particularly struggles with absorption of water-soluble vitamins (A, D, E, and K). Our gastroenterologist has actually called him “her most difficult kid” when it comes to vitamin D. Apparently in a typical gut, certain vitamins and nutrients are best absorbed by certain sections of the small intestine; since L’s small bowel didn’t form properly we don’t actually know exactly which sections he has, but since he only has about 20 percent of what he should have and almost all of that has been surgically repaired at this point, L probably just doesn’t have the sections that are best at absorbing these vitamins.

We’ve tried a range of supplement options, ranging from Flintstone chewables (which his labs laughed at) to double doses twice daily of pediatric AquaDEKs, which is a bright orange liquid multivitamin containing the water soluble vitamins A, D, E, and K (let’s pause to appreciate the clever name they came up with for that one!). AquaDEKS is actually designed for kids with cystic fibrosis, who also typically struggle with malabsorption.

The normal range for vitamin D is 20-100. AquaDEKs helped maintain L’s levels when he was receiving TPN, but after stopping TPN and having his central line removed L had never been out of the high teens. GI and our nutritionist did some research and decided to do a trial run of patch vitamins from PatchMD, which they had not tried before with any of their pediatric patients. Since L’s absorption issues lie in his gut, the hope was that patch vitamins, which absorb directly into the bloodstream through the skin, would allow us to bypass that difficulty altogether.

Here’s how it went for L, who was 4 years old at the time:

Effectiveness: We did see a bump up in his numbers within the very first month — although, as is often the case, this test run wasn’t isolated to a single variable. He had successfully learned to swallow pills just the month before, so the initial boost may have actually been a result of the prior month of swallowing his 50K iu vitamin D pills (we had previously been poking holes in them and trying to squeeze their innards into his g-tube, and hoping he got most of it).

With the help of both the Vitamin D3 patch and the adult multivitamin patch, L maintained vitamin D levels in the low 20s and then mid-20s through the summer, putting us in the normal range for the first time ever! I initially thought PatchMD was a huge success for us.

However, this number began to trend down month after month and dipped down near 20 again as the weather turned cold and L was getting less sunshine. Because L had miraculously started swallowing pills like a pro just before his 4th birthday, we ultimately discontinued patch vitamins and went back to an oral multivitamin (we’re currently using DEKAs, which is essentially the capsule version of AquaDEKSs), along with an oral iron supplement and the 50K iu vitamin D — and his vitamin D levels have skyrocketed, hitting 36 and then 45!

So it seems that, for us, patch vitamins are more effective than liquid vitamin supplements, but nothing beats the regular old pill.

Ease of use: So simple. Slap the patches on his back at bedtime and they’ve run their course by morning. We rarely had them come off before morning, and a few times we forgot to remove them and they stayed on all day, even through sweaty outdoor play and weekly “splash day” at preschool. And they are easily removed — L is still a bit traumatized by having tape on his skin after all the sterile dressing changes he’s been through, but it didn’t take long for him to get comfortable with us pulling these off of him.

Pricing: Around $20/month per type of patch before discounts – and they always have coupon codes for 30% or 40% off (the amount varies depending on whether you’re willing to subscribe to a recurring order – which I eventually did, and it was easy to cancel, but you do have to cancel several days before your order is set to ship). We didn’t even try to run it through insurance since these are OTC. Vitamins aren’t cheap, but these were at least a lot more cost-effective than quadruple daily doses of pediatric Aquadeks, which were running us around $30 every two weeks.

Shipping times: Excellent. At its most impressive, I received a shipment notice a whopping 14 minutes after I placed my order! That was probably an anomaly, but the patches always shipped within 36 hours of placing my order, and we received them within 4-5 days at the most — even the time I placed an order at the beginning of a holiday weekend.

Customer service: Meh. I didn’t have a lot of need to interact with customer service, because everything went smoothly with all my orders. The only time I did reach out to them was during a special promotion that wasn’t properly applying to my order — and I didn’t receive a reply.

VERDICT: Proceed with caution.

PatchMD vitamins are very convenient and they did seem to work better for us than some of the liquid supplements we’d tried. If nothing else is working — or if you’re just looking for a hangover cure or a boost for your complexion, both of which the company offers — full steam ahead, it’s worth a try. But if you have any kind of chronic deficiency you’ll want to keep a close watch with regular bloodwork. (Although, if you have any kind of chronic deficiency and don’t monitor it with regular labs, you might want to seek out a new doctor.)

Disclaimers: I did not receive any products or perks in exchange for this review; I simply wanted to offer up our experience, since I didn’t find any reviews from short gut parents when we started patch vitamins. And, I am not a medical professional. I’m a mom. For medical advice, talk to your physician or provider.

Have you tried patch vitamins? What supplements have worked for you? We’re still struggling with iron levels, so I’d love to hear your suggestions!

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What to expect when you’re expecting surgery

I set out to write an honest post about what it’s like to be drawing close to a big surgery that could change our lives dramatically without knowing whether that change will be dramatically good or dramatically bad. I think that the best picture I can give of what that feels like is to say that right now, I’m not at a point where I can dive into all that.

Let’s just say there are feels. Lots of feels. So many that I kind of need to ignore the feels and stick with facts for now.

So here are some facts and tips from our first three experiences with big surgeries, along with some additions from other minor surgeries we’ve had along the way. L was only 3.5 months old at his last big surgery, so my facts and tips regarding those kinds of procedures are focused on tiny bodies and very early stages of development, and I don’t have advice for preparing older children to understand what’s about to happen – although I would love to hear yours, if you have some.

Here’s what I do have:

Ask questions. Early and often, and don’t stop until you’re satisfied with the answers. Write down a list of questions and bring it to appointments with you to make sure you get them all answered. Ask them to explain again if you don’t understand. Ask questions even if you don’t really know what you need to ask.

A good place to start may be to ask what kinds of things you should be asking, especially if you can connect with a knowledgeable and objective third party – a parent who’s gone through the same procedure; a specialist or surgeon who is familiar with the diagnosis or procedure but is not involved in your child’s care (i.e. before we met with the surgeon who’s going to be operating on L next month, I had emailed a surgeon at Boston Children’s and had inquired with specialists at two other hospitals in other states via friends, just asking what we should ask the surgeon and if they had any advice to help us make our decision).

And at L’s second surgery, our surgeon had expressed concern about keeping L under anesthesia for any longer than he had to after the two-hour mark, but we were expecting a minimum of four hours in the OR; in our pre-op meeting with the team, I simply turned to the anesthesiologist and said, “Make me feel better about this.” And you know what? She did.

img_3911You can probably accompany your child further than you think. If they don’t offer, ask. For L’s last line placement, I scrubbed up and carried him right into the operating table, then stayed with him and held his hand and talked to him while they put the gas mask on to start sedation. Plus then you get a cool paper outfit and neat hat and stuff that you’ll definitely want to keep for the scrapbook.

Do not do this if you’re going to freak the flip out once you get in there. Seeing the OR could be scary. Your child might struggle with being handed over, or laid on a table, or with getting the mask, or a number of other things. It’s a horrible feeling to watch your child’s eyes glaze over and drift away. If any of these things are going to make you lose it, don’t go in. You’re not taking the easy way out; you’re doing what’s best for your child. The surgical team needs to be focused on taking care of your kid, not on calming you down.

Anesthesia is scary – but in most cases, it’s maybe less scary than it seems. The anesthesiologist that I mentioned told me that there were people in the OR whose sole job was to monitor vitals and make sure that if there were any signs of adverse reactions, the surgeon knew to wrap it up immediately. She also told me that while extended anesthesia in babies and young children has been linked with developmental disorders and delays, it’s likely that correlation does not equal causation because children who undergo extensive anesthesia have a reason for needing multiple and/or lengthy surgeries, and those reasons are more likely to be the cause of those correlations than the anesthesia itself (i.e. L had gross motor delays, but he had his abdomen cut wide open three times and spent a good deal of his first few months flat on his back, for pete’s sake).

Ask for updates. Most hospitals probably have some kind of update system in place – we could see on a screen what phase of the procedure they were in based on a color coding system, for example. But ask what else they might be able to do. During L’s big surgeries, we had a nurse call my cell phone right from the ER to give updates on how things were progressing. This not only was a huge reassurance, but it also meant we didn’t have to sit in the heavy hush of the waiting room for 6+ hours. Which brings me to my next point:

Don’t just sit in the waiting room the whole time. Get up. Walk around. Eat something. Go outside. Bring a laptop and find somewhere comfy to watch something stupid on netflix. Maybe even laugh, if you can. You’re allowed to feel things besides fear and anxiety and dread.

Be prepared for post-op. Ask what to expect, and be prepared for it to not go 100% smoothly. This will vary greatly based on the type of procedure. If you’re expecting invasive neonatal or infant surgery here are some things I was completely and totally unprepared for:

  • Swelling. Preemies and infants are tiny. Surgeries involve an awful lot of retained fluids, and in an 8-lb person there’s not a lot of space for all that fluid to go. They cut open L’s belly, but the swelling extended all the way up to his face and right down to the tips of his toes. L was almost unrecognizable for a while after his big surgeries. That was hard, and made harder by how unprepared we were to see him like that.
  • Intubation. I knew they would intubate him. I was not prepared for the way it felt to see my child crying silently around a vent tube.
  • Pain management. It took a little while to find exactly the right combination of meds to keep him comfortable. And in the second week, when I was asked to weigh in on giving him another dose of narcotics or not, I was not prepared for the way it felt to see him slowly glaze over and drift away again and know that I had made that choice.
  • Unexpected outcomes. L’s jejunostomy was a difficult one, to say the least, and we thought it would be gone after his second surgery. The surgery was more complicated than we’d expected, and he kept that ostomy for another 6 weeks. It had not occurred to us that they wouldn’t be able to take down the ostomy at the second surgery, and so we felt a little defeated even though the news from the surgery was generally very good. If you’re up to it, hash out every possible outcome and complication with your surgeon before surgery so you can go into post-op as informed and prepared as possible.
  • Backward steps. Recovery = progress = moving forward. But sometimes, it’s not a straight line. Sometimes your kid isn’t ready for what you’d like them to be ready for. Sometimes there isn’t a clear finish line. Sometimes steps back are necessary for progress.

Accept help. People will probably offer. You will probably be inclined to turn them down. If you need something, don’t be afraid to say yes, and specify what you need.

Be gentle with yourself. Whatever you’re feeling? It’s okay. You might not react the way you expect. You and your partner might react differently. That’s okay too. Z tended to get emotional at all the appropriate times, like when we found out good news and bad news, and I tended to sit stone-faced through post-op debriefs feeling like an a**hole because I wasn’t properly emotional, but then cry at all the inappropriate times, like in the checkout line at the grocery store or driving 70 mph down the highway (that last one might be less okay).

If you find yourself needing more support, whether from family and friends or medical staff or a therapist – seek it. You’ve been through a lot, and you’ve spent most of that time taking care of someone else. Remember to take care of yourself too.

I’ve done this a few times, but I don’t claim to be an expert. This is the kind of thing that’s never quite the same, and always hard. If you have more tips or advice, please leave a comment!

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A Bit of VyGyvering: Using curly tubing for enteral feeds

When we switched from TPN to enteral feeds in March, we were supposed to go from the lovely, stretchy, old-school-phone-cord Vygon “curly” tubing we’d been using for TPN to the short, not-stretchy, not-curly, not-lovely, anxiety-inducing-because-who-knows-what-it-will-get-wrapped-around-in-the-middle-of-the-night regular tubing that comes attached to enteral feed bags.

That would not do.

So, after a bit of quick googling that turned up some ideas but no methods or results from trial runs, we decided to try our hands at MacGyvering the Vygon IV tubing so we could use it for enteral feeds. We simply hooked up the Vygon tubing to the G-tube extension on one end, inserted the end of the feed bag tubing on the other end, taped the crap out of it and hoped for the best. And — it has now been approximately 115 nights, if my count is correct, and we have fed the bed exactly once.

For anyone out there who’s interested in trying it, here’s a quick tutorial:

1. Widen this end of the Vygon tubing just a smidge by inserting the tip of closed scissors and spinning the scissors a few times. Bonus points if your scissors coordinate with the color of your feed connectors. Z is stylish that way.

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2. Insert the connector of the feed bag tubing that looks like a geometric purple Christmas tree into this end of the Vygon tubing that looks kind of like one of the Easter Island dudes with giant Dumbo ears. (As you can see, these are very technical instructions.)

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3. Insert the other end of the Vygon tubing into the small port on the G-tube extension.

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4. Tape the crap out of it. Wrap around the connection at the small port, keeping downward pressure on the Vygon tubing toward the g-tube extender, then keep wrapping around all the elbows of the port end of the extension in a way that allows you to come back around the connection point in both directions – so, if your first pass around it is clockwise, make sure you come back around counter-clockwise before you’re done so there’s pressure on it from all directions to keep it in place.

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When you’re finished it will look something like this:

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5. Tape the crap out of the other part too. Take a moment to make a weirdo face while you think about the prospect of being able to sleep better at night, if only your dear sweet child would actually sleep for once….

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6. Proceed with priming the tubing and hooking up as usual. Ta Da!

If you try this out, or if you have other solutions, we’d love to hear about it in the comments!

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