Before Noah was born I was naive enough to think that if I received a prescription I could just hop on over to my local grocery store, turn in the little slip of paper with the illegible signature, and 15-20 minutes later I could walk out with the little white bag in hand and call it good.
Not so much the case when it comes to special needs baby and his many rounds of prescriptions. I have had to (and will probably continue to) experience one after another pharmacy mishap.
So...I thought I would save you the gas, the headache, and maybe even some anxiety by filling you in on the tips and tricks I have already learned (and am still continuing to learn with each refill). :)
*****revision (please be sure to look at lesson 6 if you only have time to read one)
Lesson 1: What is a Compound Pharmacy???
A compound pharmacy is one in which they can turn almost every single medication that comes in a pill into a liquid (or "suspension"). This is very handy when trying to give an infant any type of medication.
****I only learned of such a pharmacy after already
filling and paying for a bottle of medication that came in these massive
pills and had to ask the pharmacist how to then give my infant these
pills before he said "oh...you will actually have to call and have that
made at a Compound Pharmacy."
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| Notice the cool topper on the bottle...lesson 3 |
PROS: They can put flavoring into the liquid to help mask the bitter flavor that most medications spring on you. (be careful to double check that the flavor you are choosing and the medication being ordered does not counteract one another as is the case with one of Noah's prescriptions).
CONS:I am not sure how other states work but I have found that locally most of the compound pharmacies are small family owned places where most everyone is related. The problem with these types of pharmacies is that because they are small and family owned they also have very limited hours (say M-F 9-6) Pretty much the only time my husband and I can pick up anything at these places is by rushing during our lunch hour since they are only open during work hours and also closed the entire weekend. Another issue I have with these pharmacies is that you have to literally call ahead almost 3 full days to get anything made on time. Good luck trying to fill a prescription around any type of holiday or close to a weekend either because it seems that most of the employees and pharmacists have a very laid back attitude and do not seem to feel the need to get things done on time. I am not just talking about one place either. I have now had to experience this with a few different compound pharmacies. So please please please make sure to keep a close eye on all medications and when you are at least 7 days before running out call that day to order a refill. It really truly does suck if you notice on say a Thursday morning that you only have two days left of a medication that has to be made at a compound pharmacy and then you have to beg and plead for them to put a rush order on the medication to pick it up on their final opening hour of a Friday evening. (yes...I have begged and pleaded and I don't think they liked that very much).
A final note about many (not all) compounded medications. They usually have to be refrigerated and well shaken before you administer the drug. This can be a hassle if you want to plan a vacation or all day outing and must pack around a small cooler for a measly bottle of medication to keep it cool.
Lesson 2: Syringes (not as easy as one would have thought)
The days of using a medicine dropper or tablespoon seem to be long gone. New regulations and measurements have made it so that
syringes are the preferred method of administering a prescription medication to a child. The problem with syringes are that you have to flush them after each use so that the sticky liquid doesn't clog them up. The problem with flushing syringes is that you then have to wipe them down or air them out so that there is not even a single drop of water left inside to haphazardly take the place of that single drop of needed medication. This then poses a new problem. Wiping them off all the time and you will eventually wipe off the measurement lines. Airing them out with the plunger pulled out will make the actual shaft of the syringe shrink ever so slightly and then the plunger starts to get stuck. This in turn poses a problem with trying to slowly drip medication into your childs mouth and the stuck plunger all the sudden breaks loose and the entire syringe full of medication shoots into the back of their mouths and then in turn cough it back into your face. Not pleasant for anyone and causes much anxiety not knowing if they coughed out all of it or actually was able to receive their dose. I ask for a new syringe with each and every single refilled or new prescription. They come in all different sizes. I prefer to use a 1ml syringe for most of Noah's medications because it is small enough for me to slip it into the back of his cheek and push out the fluid while he is sleeping. It may take me filling it up many times to get it all in but it is better than having to yank open his mouth wide to fit in a large syringe which scares him then I have to hear him fuss or cry and pray I don't choke him with a much larger amount of fluid at one time.
***after talking at length with the pharmacist I was told the best method for cleaning syringes is to fill a cup full of warm water (do not just put it under running water from a faucet), put the tip of the syringe into the warm water and suck it up and push it out a couple times. Then (with the plunger totally pushed all the way in) shake the syringe and then put it in a cup or elevated position for the next use. Never leave it soaking in water or put it in a sterilizer machine or dish washer. Also, do not soak up soapy water which can cause residue to coat the inside of the syringe.
I never in my wildest dreams thought I could write at such length about syringes.
Lesson 3: Bottle Toppers
Not all pharmacies have these and some even charge you for them but always ask for them and find out. These bottle toppers are these small pieces of round plastic that fit snug inside a prescription liquid medicine bottle at the opening. They have a small hole in the top that allows only the tip of a syringe to be tightly pushed in to suck out the medicine. I LOVE THESE. I don't have to stick the entire syringe inside the bottle and get it all sticky to fish out the tale end of the medicine. It also is a safe guard in case you happen to trip over your kitchen rug and drop the medicine bottle without its lid on it. I also love (and kind of makes me feel like I am acting in Grey's Anatomy or ER) when I get to take the medicine bottle, tip it upside down, insert the syringe, and suck out the medicine totally upside down. :) It's all about finding the joy in even the smallest of tasks right :) ha ha.
Lesson 4: ML (milliliter) versus MG (milligram)
Make sure you fully understand the difference between these two. You may get a prescription of something that is 15 MG/ 1 ML and you are to ordered to take 1 ML. DO NOT confuse the two numbers and accidentally take 15 ML. This is the simplest of examples. ALWAYS double check with your prescribing doctor and then triple check that the pharmacist followed the doctors orders precisely. You are to NEVER assume that pharmacists (or their techs) are making something correctly....always ask. When in doubt follow what your doctor told you to take. (EX: Noah takes 60 MG a day of a medication but that has to be broken down into two 30MG doses. The mediation was made with a ratio of 15MG per 1 ML. So I give Noah 2 ML of his medication TWICE a day) See how this can all be confusing. Then add about 3+ different medications into the mix and we literally have to have a paper taped to our pantry door to remind us daily to give him the correct dose.
Lesson 5: Pharmacists and their techs/cashiers are really good listeners (so why warn you)
I warn you of this because I have thought I heard one of my doctors correctly but accidentally confused myself with all the MG vs ML stuff and totally assumed Noah was to take a certain dose of a certain drug. I was in the wrong. Yet, because my pharmacist was such a good listener and wanted to make sure I was a happy customer they went ahead and listened to me and made Noah's dosage according to what I told them and not what the doctors orders told them. This also happened when I had to have one of Noah's Neurology doctor prescriptions refilled late on a Thursday and couldn't get a hold of her so I called his pediatrician that Friday to have them refill it. They were more than happy to accommodate my wishes but the nurse that called it in called in the wrong dose even though the pharmacist had the original dose already in his computer from the last time he filled it. So PLEASE once again....double and triple check all dosages and ML and MG are correct.
Lesson 6: Call your insurance before you pick up any new prescription
This is the most important lesson I can list regarding pharmacies and prescriptions
Firstly, if you do not know already, check to see if the medication you are prescribed comes in a generic brand and if your doctor gives you the go-ahead to take the generic brand. This will save you much $$$$.
Second, find out if the medication you are having being made into a compound/suspension/liquid form is covered for a FULL MONTH under one co-pay (or for one price).
Pharmacy's bill a high price to your insurance for compound medications even if you are only billed your specific co-pay amount. Certain insurances change things up on pharmacies in regards to how much they can bill for one prescription during a one month cycle. For instance, Noah's seizure medication is the generic version called Toperimate (Topamax). One month I was able to get a full 30 day supply of this liquid gold for a small price of one generic brand co-pay amount. The next month when I went to get a refill I was handed a very tiny bottle not even full. I asked why I was only give such a small amount and was informed that my insurance now will only let the pharmacy fill a 10 day supply at one time because they can only bill the insurance $75 at a time each time I pay a co-pay for each compounded medication. If they were to make the full 30 days supply they would have to bill my insurance their price of $200 and then my insurance would then bump up this generic drug into another higher category (or tier) and I would then have to pay mucho dollar bills every single month. So, now I was supposed to call into make a refill every 6-8 days, pick up a ten day supply by paying a co-pay, and then have to do the whole thing over with subsequent payments every single ten days. So now my one month supply just tripled in price because it was a compounded medication and it didn't matter if it was generic or not.
I was irate! I called my insurance myself (just to make sure the pharmacy wasn't trying to pull one over on me) and found out this was all true. So then I asked to speak directly to a Prescription Insurance Specialist (you have to ask specifically to speak to these types of folks). After an hours worth of chatting (he was really nice), I found out that this exact same generic seizure medication came in a "sprinkle capsule" form and I could get not only 30 days but 90 days worth for only ONE co-pay amount. No brainer! Now that Noah can eat baby food I just open the little capsule, sprinkle in his medication directly into one spoonful of food, and down it goes....for one low co-pay price! Why didn't the pharmacy inform me that there was this 'other' option. Well folks...its because they make WAY more $$$ from making compounds.
So long story short. Your insurance wants to pay out the least amount possible so they will let you know of all the cost saving alternatives to almost every aspect of insurance related questions. Call them up and find out if the medications you need have 'other' cheaper ways of filling and taking them.
Lesson 7: Keep a Drug Journal
Keep a log of every single medication (prescribed or over the counter) in a journal or database or even on a napkin. Just keep a list and track every side effect they have, every dosage change, the dates they went on it or came off it, who prescribed it, what the prescription generic name is as well as the pharmacy prescription refill number located on the bottle, and also the name and phone number to the pharmacy that you are ordering this medication from. This will save you a lot of brain power when you go into a doctors appointment and they ask you to list all this information.
Lesson 8: Do a little Research
I may know a few commercial jingles to a few over the counter drugs but that is about it. I am not a pharmacist or doctor and have absolutely no idea what goes into any type of medication. Whenever you are given a new mediation go and research it. Yes, this is a double edge sword because the internet can either be your best friend or your worst enemy. However, it is good to note possible side effects (most never actually occur but some of them do and it is good to know these). You will also find if the medication has a generic, what the original use of the drug was (Noah's seizure drug was originally a weight loss drug and a major side effect is loss of appetite- go figure), and if the mediation comes in many different types of forms (liquid, capsules, pills, sprinkles). You can also research if the medication should or should not be taken with food, if it works better to be taken in the morning or night, or if it interacts with any other type of drug or food even. It's best to know what you are putting in your body or your child's system so become an expert on each new medication being prescribed. Every good pharmacy should include some of this information on a brochure or print out when you pick up your medication but not everything is listed. It is also really good to find a forum and ask other actual users their thoughts and experiences. You will be amazed at what you find out that the doctors or pharmacists didn't tell you.
Lesson 9: How we get Noah to take his medicine
We mask it with other flavors or textures :) The conventional flavors of cherry and grape are a thing of the past. Did you know you can have their compounded medications made with flavors like strawberry banana or coconut or even passion fruit??? Yum! With other medications we pick up at our grocery store pharmacy that taste very bitter we hide in his sweet potatoes or applesauce. He also seems to take medications better for me when there is some texture to them (this may be because of his Dysphagia and swallowing problems). So I like to suck up his dose in a syringe and then suck up a bit of baby banana's and he has no idea what is going down. We have also found that if he is sucking on his pacifier we can slip in a 1ml size syringe on the side and inject the medicine in without him even knowing and he just continues to suck away on his binkie.
Lesson 10: UMMMM.......forthcoming since I am stuck knowing only 9 right now. But I have about three refills to pick up in the next couple weeks so I am sure I will experience something to talk about by then :)
Update (7/31/12). I knew I would come up with something. It is more of a warning than a trick. If you were to call and get a compound prescription made, be forewarned that once they actually make it you are stuck buying it. Even if your doctor calls you to tell you to cancel the prescription. I battled this for hours the other day trying to get out of having to pay for a prescription that I had compounded. Also, make sure that your insurance company doesn't all of the sudden change the price tiers on your prescriptions without you knowing it. This is also something I battled the same day. In the end I ended up paying $42 for a compounded prescription that was only $7 three weeks ago and now I can't even use it. Please learn from my lessons :)
