I am asked fairly often which medications we have used with Raya and why, and whether or not they worked for us, so here's a rundown of what we've used in order of when we used them:
Prevacid (lansoprazole): Raya started on Prevacid at 1 month old because of reflux that did not improve with other interventions, such as propping her up while she slept, keeping her upright for 30 minutes after feeding her, burping every few minutes during feeding, adding rice cereal to her milk, and modifying my diet while breastfeeding. It had worked great for Raya's older sister and it helped Raya too. Prevacid is a PPI (proton pump inhibitor), which means that it reduces the amount of acid produced by the stomach. She used Prevacid solutabs, which had to be dissolved in a small amount of water & administered orally by syringe. The problem we had was that there were many times that she would spit up (or vomit up) little beads of Prevacid up to 6 hours after I had given it to her, which led us to believe that she wasn't getting the maximum benefit out of it. Because of that and the inability to put Prevacid through a tiny little NG tube, we switched to Prilosec at 2 months old.
Prilosec (omeprazole): We switched to Prilosec mainly because it was MUCH easier to administer than Prevacid. I've been told that Prilosec compounds more easily than Prevacid. They are both PPIs and we found out during one hospital stay that our hospital pharmacy doesn't even stock Prevacid, they only have Prilosec. This was reason #2 for our switch. :) While she was inpatient, they gave her Prilosec and I think the only reason she seemed to do better on that than the Prevacid was because it was compounded & could go through her shiny new NG tube, so the medication actually went where it was supposed to.
Reglan (metaclopramide): Yes, we put our baby on the dreaded/feared/hated drug Reglan. (GASP!) Reglan is an antiemetic (anti-puke) and prokinetic that is used to treat delayed gastric emptying and vomiting due to DGE. When it works, it increases the rate at which the stomach empties so that the food doesn't end up sitting in the stomach too long, causing pain & nausea, and eventually vomiting. If you google it, you'll see all kinds of things like "Reglan Lawsuits" and BLACK BOX WARNING and SIDE EFFECTS. Reglan has been known to cause neurological side effects that can become permanent with prolonged use or high dosages.
Raya was about 5 months old when we started her on Reglan. When her doctor first mentioned it, she explained to me what the risks & possible side effects were and that if I ever saw any signs of them, to call her office right away. Then she said that even though everything you read about Reglan is about the negative side effects, she had been prescribing it for over 20 years and had only ever seen ONE case where a child had a neurological side effect. The child developed a tick (or is it tic...) and once that happened, they discontinued the medication and the tick went away.
SO. When we started it, we had hoped that it would help to increase Raya's slow motility, which we hoped would help decrease the vomiting & nausea. She was on Reglan for about 2 1/2 months and we saw little or no change in the vomiting so we discontinued it and moved on to something else.
Eryped or Erythromycin Ethyl Succinate (EES): We'll just call it EES. :) After we DCd the Reglan, the next thing on the very VERY short list of motility drugs was EES. It is an antibiotic commonly used in treating respiratory infections, but it also acts as a prokinetic. For the first few weeks that she took it, we didn't see a difference in the frequency of Raya's vomiting but we did notice that the amount that came up when she vomited was lower, meaning that it was helping to move more of her formula through her GI tract more quickly.
When it seemed to stop working, we took her off of it (on the doctor's orders) for a couple of days to see if there was a change. The volume of her vomiting increased again, so we put her back on it. Unfortunately, it never seemed to help her again so we took her off of it for good.
We did use it again for a short time in October/November 2010 when she was hospitalized and had a GJ tube placed. After the tube placement, she started draining large amounts of bile from her stomach, which if we didn't drain out her G port, she would vomit. In order to help reduce the amount that was being drained out of her, the GI on call put her on EES and it did help for a little while. Long enough to get us out of the hospital. :) Honestly I was glad that it didn't really make much of a difference for her because I wasn't thrilled about the idea of long-term antibiotic use.
Neurontin (gabapentin): After consulting with a specialist in Ohio, our GI doctor put Raya on Neurontin around the age of 6-7 months. Neurontin is an anti-convulsant that is used for seizures and neuropathic pain. (pain coming from the central nervous system, like fibromyalgia or RSD) The theory was that her vomiting hadn't responded to any of the interventions we had directed at her stomach, so perhaps it was brain-initiated vomiting instead of stomach-initiated vomiting. After about 2 1/2 months, it was clear that even the increased dosages we had tried weren't making a difference so we discontinued that as well.
After a few days of being off the Neurontin, Raya's reflux went CRAZY. We hadn't expected that because we had no idea that it had been having any effect on her reflux. We put her back on it and after only 2-3 doses, her reflux symptoms were back to their previous levels. (We have since learned that any time we change her medications, her body responds by having an increase in reflux so the Neurontin may not have been directly related to the reflux.) As she grew out of infancy, her sensory issues became more evident and we were told that she has visceral hyperalgesia, meaning that her gut is overly sensitive to any kind of sensations like gas pain, being full, or feeling nauseated. Since Neurontin is used to treat neurpathic pain, it makes sense that the drug would help to calm her gut pain. While we have reservations about having her on a strong drug long-term, we feel like this medication is playing a huge role in her continued comfort and keeping her from vomiting like she used to.
Carafate (sucralfate): When Raya started vomiting blood a few weeks after having her G tube surgery, she was given carafate to help heal whatever the source of the bleeding was. Carafate binds to the proteins on the surface of ulcers and forms a protective barrier so that the ulcer (or other lesion) can heal while the barrier protects it from further damage from stomach acid. The unfortunate thing was that carafate is supposed to be administered within certain time frames in order to give it adequate time to act, and at the time, Raya was on very long continuous feeds so there wasn't enough time to allow the full recommended time frame between dosing her and feeding her. It was discontinued when she was hospitalized and had a GJ tube placed but she's used it off and on because of occasional gastric bleeding.
Elavil (amitriptyline): Elavil is an anti-depressant that has a lot of alternative uses (anxiety disorders, ADHD, migraines, PTSD, etc.). One of the alternative uses is to help control retching (dry heaving), which is a common side effect of a fundoplication surgery (anti-reflux surgery). Raya did not have a fundo, but she definitely suffered from retching & vomiting. She was put on elavil during her hospital stay in October 2010 after she had gotten her GJ tube because she was still vomiting bile and having several retching episodes a day in spite of not being fed into her stomach anymore.
After a little while of being on it, we noticed an improvement in the retching & vomiting she experienced first thing in the morning and when she would wake up from her naps. After about 3-4 months, we started to notice a significant decline in the frequency of her vomiting & retching and by the time she had been on it for 6-7 months, the vomiting stopped completely. We feel like it was a combination of the GJ tube, Neurontin, Elavil and occupational therapy that ultimately stopped the chronic vomiting.
In August/September 2011, we slowly weaned Raya off of the Elavil because she had gone for over 3 months without vomiting & was no longer having retching episodes. We took 3-4 weeks to wean her off but even with that long of a weaning period, she had a very difficult time coming off of it. Elavil is an anti-depressant, and when she had come completely off of it, she acted just like you would expect someone who just came off of their anti-depressants to act. She cried for an entire day for no apparent reason, she was moody, she had difficulty sleeping, and it was just a difficult time for her (and all of us!) That said, I still wouldn't have done anything differently. It did what it needed to do for her when she needed it and her body adjusted to being off of it after a couple of weeks.
Periactin (cyproheptadine): In November 2011, we started Raya on Periactin to hopefully help stimulate appetite and help her to eat more. Because Periactin is an antihistamine, we waited until her 2nd birthday to start using it since that's what the American Academy of Pediatrics recommends. Unfortunately, we only used it for a week or two and then Raya broke her arm and was unable to hold her spoon to eat her sour cream, so we stopped using it until she got the cast off. In December 2011, we started using it again and have seen some improvement in the number of times a day that she is willing to eat, and in the amount she eats per sitting. Sometimes. :) We cycle the periactin on 5 days, off 2, so she gets her dose on Monday-Friday and has a break on Saturday & Sunday.
BUT. It hasn't been without side effects. Antihistamines are supposed to make kids drowsy, right? (think Benadryl :) Well, listed in the possible side effects of Periactin are, and I quote, "Insomnia, Restlessness (especially in children)" Yep, I have a restless insomniac 2 year old. It has affected her ability to nap and has greatly decreased the number of hours that she is able to sleep some nights. Each time we cycle it, she seems to have different side effects.
After using it off & on from November 2011 to April 2012, we decided that the benefits (or lack thereof) were no longer worth the side effects. We have discontinued it but we will definitely use it again in the future when she's eating more and needs a little boost. :)
Clonidine: Due to an inability to fall asleep that did not respond to non-prescription alternatives (and we tried several things) Raya was put on clonidine. The lack of sleep, brought on by anxiety and inability of her mind to "shut down" enough to go to sleep, was beginning to adversely affect her health and ability to recover from illnesses. Clonidine also had an effect on her ability to maintain focus and be more calm during the day and there have been no side effects from it aside from a dip in blood pressure shortly after giving the dose, which has not been a problem.
Zantac (ranitidine): In an attempt to see if the high level of acid suppression Raya had been on since birth was hindering her stomach's ability to break down food and thereby contributing to her delayed gastric emptying, we replaced her PPI (Prilosec/omeprazole) with an H2 blocker, Zantac/ranitidine. The result after 2+ months was no improvement in the delayed gastric emptying and increased reflux and the discomfort associated with it. We added a PPI back in but kept the ranitidine anyway because they work in different ways. She seems much more comfortable with both than with just the ranitidine.
Nexium (esomeprazole): Nexium is a Proton Pump Inhibitor (PPI) like Prevacid & Prilosec. The plus with Nexium is that it comes in packets that can be dissolved in water and given via G tube rather than having to be compounded. (And yes, Prevacid comes in SoluTabs, but they are easy to clog a tube with.) The down side is it's hefty price tag. Since coupling Nexium with Zantac, Raya seems more comfortable.
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