I think what people fail to understand about being the parent to a special needs child is that it isn’t the ‘child’ that has us exhausted, stressed or just plain worn out, it is scheduling therapy appointments, managing medicine, educating school districts, advocating for extracurricular activities and yes, even running to the pharmacy 4 times a month for medication that puts us over the edge. It would put anyone over the edge.Now, the part of this that has me worked up today, is that the fact that medicines mean dealing with the pharmacy. And although the people at our pharmacy are nice enough, the whole experience drives me to the edge quicker than virtually any other thing in my life.
Let’s start with the fact that I have to go multiple times a month. Why? Because it isn’t like any of Gabriel’s medicines actually get finished at the same time each month – mostly because they are started at different times, and then changed, or upped or downed, or adjusted in some other crazy fashion to make picking them all up at the same time impossible.
Now let’s add the fact that because Gabriel’s medicines are covered by Adoption Support (Yes, thank you to adoption support, I appreciate it immensely, but since they are so kind, they require no less than 82 proverbial hoops to jump through for this favor), I can only get the medicine refilled the moment it needs to be. Which looks like this:
“I need to refill a Rx for my son.”
“OK, when will you be out?”
“I have one more dose for tomorrow, and then we’re out.”
“What time do you give it to him tomorrow?”
“8:00am.”
“OK, then we will have your RX filled and ready to go by 7:59am the day after tomorrow. Please don’t try to pick it up early this time.”
And there is no getting around this – I’ve tried. No 3-month supplies, no ‘auto refill’. Nada.
Which brings me to the next challenge here – They never have the medicine in stock.
What is up with that?? Seriously.
Gabriel has been on one of his medicines for the last 15+ months – same medicine, every month, ordered from the same pharmacy.
Now, let’s also mention here that is a MOOD STABILIZER (which I could use from dealing with the damn pharmacy), so, not just theoretically here people, he isn’t going to just magically stop using it one day. Nope, not gonna happen.
Yet, it never fails, when I call to refill it, the conversation sounds like this:
“I need to refill my son’s Rx.”
“We don’t have that in stock.”
“Well, we are out of it starting tomorrow, and this, as I am SURE you learned in pharmacy school, is a mood stabilizer, which means that I cannot just stop giving it to him.”
“We should have it on Tuesday.”
“NEXT Tuesday?”
“Yes.”
“Ah, we can’t wait that long – what can I do?”
“Well, you can drive out to the-middle-of-nowhereville, they might have some, but you’ll have to call them yourself.”
“Of course. Can you order it for next month now?”
“No, we can’t order it until you need it.”
“Yeah, I agree, let’s not plan ahead.”
Now you get that I have to drive to the pharmacy, deal with them not keeping my son’s meds in stock, and that isn’t even the worst part.
The worst part is that they can’t seem to get it right. How is that possible?! I mean these are Bipolar meds – not antibiotics or allergy meds – we need the right dose, the right total amount, all at the right time. That’s why it is called a prescription.
I am going to just skip ahead to today’s example – why? Because you are going to get bored of this complaint soon, so I’ll tell my story:
I drive up to get Gabe’s meds (only refilling 2 today), before school. Why did I do this before school?
Because they just called last night (we sent in new Rx on Thursday after our Dr. Apt) to let us know they are finished, and Gabe needs the ‘extra’ Rx bottle to take meds to his new school today.
OK, there I am, in the drive through.
“I need to pick Rx for my son.”
“OK.”
Wait. Wait. Wait.
“Here you go, please sign.”
Done.
“Wait a second,” I say as I open the bag, “There is only one of these, and I need a second one with a Rx label on it for the school.”
“OK.”
She leaves. Comes back. Gives me the second bottle. A GENERIC bottle that doesn’t have the little ‘insert syringe in here’ spout to make measuring the liquid medicine easier.
I open it anyway, trying to just cut my losses and make it to school on time. I realize I cannot get the stopper out, so I hit the ‘call button’.
“Hi, yeah, I can’t get this out, and need you to pour like ¼ of the bottle into the extra one.”
She takes it, and then returns with it, un-removed, and nothing transferred to the other bottle.
“You’ll need to just put the syringe into this bottle and transfer it that way to the other bottle.”
Did you get that? She can’t take the stopper out and POUR the medicine from one bottle to another, she wants me to do it with a 1 ml syringe – one syringe at a time.
While this process is going on, I realize that I only have one bottle of the second medicine, which contains 250ml.
Now, the Rx is for 7ml twice a day – that is 14 ml a day.
Anyone quick with math?
Correct! 250 is not 14x30 – or in plain English, she didn’t give me a full month’s supply.
I tell her the correct math --
“There is a second bottle missing here – I need 14 ml a day for the full 30 days – which means we need 420ml.” (Yes, I used the calculator on my cellphone to make sure I asked for the exact right amount.)
“Oh.”
She takes the bottle.
“I don’t have time to wait for this one; I need to get my son to school, so I’ll come back for it. Could you just finish the other one?”
She leaves.
And brings both of them back at the same time; the first one was done, sitting on the counter next to pharmacist while he worked on the second one. Seriously?
Gabriel was going to explode, so I calmly told him that it was my day to explode over having to wait, and that he could just watch how I was holding it together and try to do the same.
Good news is that we got the meds, neither of us blew a major fuse, and we were off. Deep Breath, exhale.
For me, this is worse than nails on a chalkboard, or being cut off on the highway -- those things are fine with me. However, the pharmacy is just something I don’t have a choice about at this point. Gabriel is Bipolar and all Bipolar people need their medication to be stable. I understand that. But it still drives me crazy!
OK. I feel better. Thanks for listening. : )
Anyone have a rant to get off their chest? What drives you crazy about managing your child’s needs?
Leave me a comment!
H
Photo: One of the little goats at the petting zoo in Victoria Canada -- get the irony? A goat? You know, "What gets your goat?" I crack myself up.
15 comments:
oh wow! that is absolutely ridiculous!! So sorry you have to deal with that B.S. i don't think i could hold it together as well as you.. ecspecially how many times you have to deal with it! My hat tips to you Sister!
Beyond frustrating. Great job holding it together. I might have been in tears at that point.
My biggest frustration right now is waiting lists. All the experts agree that early intervention is key, but there are not enough services, so we wait and wait and wait....
I thought my little prescriptions needs were anonnoying-- girl you got me beat! ..
I don't understand why the risperdol/risperdone now comes in a round domed tablet that I have to beg my husband to cut into 4 pieces-- the pill is the size of an asprin! -- The insurance we have won't pay for the liquid version-- and WAlmart-- will not cut the tablets for us....
Oh, and we can't fill our prescriptions early either... it needs to be like 2 or 3 days till we run out! Maybe it's time for a new pharmacy?
We have traditional Medicaid and are allowed to refill as much as a week out thank goodness. However with two kids (and myself) being bipolar and the kids have multiple other issues and are on med cocktails we are literally at the pharmacist every few days (or more). Sometimes you wanna go where everybody knows your name... but the pharmacy wasn't exactly what I had in mind.
My biggest problem has been that since we recently stopped having private insurance we're struggling to find doctors (psychiatrists, therapists, pediatricians, dentists, eye doctors, and specialists like a nephrologist and gastrointerologist) that take Medicaid. We asked Medicaid to tell us who to use and many times we were given numbers of doctors who didn't take children?! or weren't taking new patients, or didn't take Medicaid anymore, if they ever did.
And then of course we have to get them to all of these appointments, and meet Medicaid's requirements - right now we're dealing with vision issues. I have one child who had an eye appointment in April, but didn't really need glasses unless he was reading so we didn't take him in until August. Now he needs new glasses because his vision is a little worse, but he's not eligible until August and this year he has Summer school. This should only take 3 more trips and 4-5 more phone calls to fix. *sigh*
So frustrating!
Mary in TX
That sounds absolutely infuriating! I'm so glad we have an awesome pharmacy (that delivers free of charge). Would it be possible to find a small, privately owned pharmacy where you can develop a bit of a working relationship with your pharmacist? (Though you've probably already thought of that...)
What gets my goat is waitlists. My little guy has PDD-NOS. He's a toe-walker. Big time. All the time on his toes. He went through serial casting at 17 months to correct a heel cord contracture that was caused by toe walking. Yet we have to wait another 15 months for OT services, risking more contractures, visits to orthopedic surgeons and physiotherapists, more casting to correct contractures that could be prevented by...you guessed it...OT services.
Oh, and another thing that gets my goat is unhelpful comments and advice from parents of neurotypical kids who know nothing of what you're experiencing. Empathy is great! Unqualified "help"....not so much.
That is seriously one of the most ridiculous things I've heard! You would think by now they would know you, or what to expect...or the 'deal' with the meds...anything. You would also think that someone, somewhere might be bright enough to know that this is not an arena to make people jump through hoops!
For me, I'd say medications and not getting return calls from doctors...or you being the one to be reminding THEM of what needs to be done next!
Jess -- I agree, wait lists are ridiculous!
Stacey -- cheat the system by having the doc write it for liquid -- if the pills don't come in the exact dose (like you need 1/4 of it) I am pretty sure you can have liquid -- but that would drive me nuts too!
Mary -- I HEAR YOU SISTER! Yes, our Adoption Support is what is considered an 'open coupon' -- but it still means we have to find providers. We have been VERY lucky so far. But, we pay for psych and psychiastric services out of pocket in order to have the best help we can....
Amber -- Hi! Nice to meet you -- thanks for leaving a comment. :) I am just livid that your little guy would be on a wait list if it means surgery in the future! Ugh! I guess this is another reason we need more good doctors out there...so we can all get serivces in a timely manner. Don't worry, I'll be directing Nick towards medical school. LOL
Mia -- I too am driven nuts by the fact that I am always "leading" the crusade no matter how "amazing" our doctors are. But, I guess that is what we do, right? GO MOMMY ADVOCATES! LOL BTW, love your new blog design!
Oh can I relate! You are preaching to the choir, baby! I spend most of my week making appointments, going to appointments, missing appointments (try not to) going to the pharmacy, and waiting, waiting, for the right med, the right dose, etc. I can't imagine working outside the home right now because who would take my kids to all of these appointments???!! I am with you, why can't the pharmacy get it straight!
Wow. Just, wow. I cannot believe you have to deal with this insanity every single month. How do you manage to hold it together? This is seriously just infuriating and terribly irresponsible on the part of the pharmacy and those asinine regulations. Sorry you have to deal with that!
yuck! that is a terrible pharmacy. we have medicaid and i haven't had many problems. i did have trouble finding a psychiatrist though, like everyone else. i went to a very well known childrens hospital that did some developmental testing. i was begging for medication for my son to sleep (he was getting about 3-4 hours per night). i knew he had bipolar but the fellowship intern who was treating us didn't believe me. then he tells me (after 6 weeks of useless testing) that we needed an in-home service to help our parenting skills. how is that supposed to help my son sleep? ugh. i was so mad i told him off (gently) and left and didn't go back. i ended up finding our gem of a psychiatrist we use now. he did believe me and he did prescribe meds. that's not as bad as the pharmacy issue though. so sorry.
oh yeah, about appointments. that's why i had to quit my job. i couldn't keep up with the OT, speech, play therapy, psychiatrist, blood draws, hearing tests, PPT's, and sick and well visits. people (including my dh) have no idea how much all that really is.
I can't imagine! I was just listening to one of my son's therapists stressing out over scheduling for the little guys. She came in and just thanked me for being so laid back over scheduling for our son. i guess the issue they are facing is the other kids mom's have thier own schedule, plus the kids naps to schedule around. i just schedule everything around the kids naps and school. i don't get it, how can you have mom activities interfere with your kids therapy...i must be getting some thing wrong.
about the pharm. i am on meds myself, and the pharm told me i was not filling the as i should be, he had ordered for me and i did not show up for 2 months, so he asked if i was taking my meds properly. hows that for thinking ahead? that was while i was getting the kids' meds filled. thank goodness we are just on allergy meds (which is one thing causing the behaviors). the target store pharm is my fav place by far, so much better than the chain i went to previously! (sorry so hastily typed, waiting for kidlet's bus!)
That is nuts!! It makes me so grateful that we have such a wonderful pharmacy! Although it for sure a pain in the behind going several times a month I have been so lucky. If they dont have em's med they call around adn pick it up for us. They are always going above and beyond.
I am really sorry about the hassel!! On top of everything else that is the last thing you need to be dealing with!
Oh man. You need a screaming closet if you go through all of that.
Is there any way to just buy one extra bottle of each med, keep it in the fridge, and always have the backup?
In theory, after a while, the pharmacy will know the drill... In theory. :)
If there's any way possible I think you should shop the other phramacies in the area, check their policies for keeping meds in stock (whether they can/will order ahead, etc. See if they have auto-refill/reminders, see if they seem to have their act together.
Even with different pharmacies in the same chain I've found one that's great and a bunch that were just horrible to deal with.
It saves me so much hassle going to one a bit out of the way than having to go back to the other one 4 times to fix some mess they've made.
One of my pet peeves is that every night my son wakes up and wants to sit on my lap because every little noise scares him. I love him very much but I have sciatica, scoliosis, arthritis in the ankles, knees, and back plus he weighs over 75lbs. Plus add to that the fact that my chair is used and not the most comfortable due to the fact that I am not able to work so I'm luckily I even have a chair to sit on. This is not the greatest situation for me. I love him but he's just too big to sit on my lap and he's killing my body when he does. I try to let him sit for a bit but eventually I have to kick him off. It breaks my heart.
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