It shouldn’t be this hard…

I almost forgot how exhausting and frustrating dealing with the “medical system” can be until the universe gave me a big reminder over the past two days.

As many of you know, Trinity my youngest daughter who will be eighteen in a few weeks has ADHD. She has been on medication since the fourth grade and over the past 5 years has been on a patch called Daytrana. Daytrana has been an almost perfect medication for her which is why I drive 20 to 30 miles out of my way each month to obtain her prescription. A pharmacy in Tustin has the ability to order us a box each month and if they can’t get it usually another pharmacy in Villa Park can get it for us.

Since Tiara was little and started requiring multiple medications daily, I learned that getting all her prescriptions filled through our local independently owned pharmacy was the only way to keep my sanity. I have been going to Mariners Pharmacy on Superior in Newport Beach for twenty-one years because if I get into a serious bind the pharmacist will go to the ends of the earth to help me fix the problem. Since Trinity started taking Daytrana Mariners has never been able to fill the prescription for whatever reason so I drive to Tustin Pharmacy, another small independently owned business.

On Monday, I realized Trinty only had one patch left so I called Tustin Pharmacy to confirm they had a box in stock. I quickly learned they DID NOT have any, so I then called Villa Park to learn they too were out of Daytrana 20mg also and they had been recalled! NOOOOOOOOO! I then learned that the 10mg patches had not been recalled. Okay, I can deal with this.

I called Dr. Dang her psychiatrist and conveyed the information to the receptionist She called me back and said I could come to pick up a new prescription for two boxes of 10mg Daytrana. Are you are wondering why I had to physically drive to the doctor’s office to pick up the script? It’s because ADHD medication is strictly controlled and it cannot be called, faxed or emailed into the pharmacy. You must present the actual physical paper to the pharmacist.

I called Tustin Pharmacy and told them I was getting a prescription for 10mg patches so please order 2 boxes ASAP. When I arrived at Dr. Dang’s office the receptionist handed me the prescription and showed me a paper she had just received from Tustin Pharmacy indicating the Daytrana 10mg needed preapproval and wouldn’t be covered by insurance. Awesome! A box of Daytrana is $350 which we pay for each month until our deductible is met and now it wouldn’t even go towards the deductible. I knew this was because the insurance company didn’t want to give us two boxes. Because I knew better than to trust the system I drove straight to Tustin to present the prescription to the pharmacist and discuss the preapproval. She told me the Dr. Dang’s office should be able to get it done before the medication arrived the following day. Perfect!

I called Dr. Dang’s office back to make sure the receptionist understood that she needed to start on the preauthorization right away. I could tell she wasn’t clear on the situation and once I got her on the phone and explained what she needed to do she had a bunch more questions for me. Big sigh of relief. I’ve got this.

The next morning the plan is that Trinty will drive to school, attempt to make it through yoga her first class and then drive to the pharmacy and pick up her patch during her office hour and return to school. I reluctantly let her drive herself to school which makes me very nervous without her ADHD meds but I prayed she would be safe. I sent her with our health savings debit card to pay for the prescription which should be at the pharmacy by 11 am. At 10:50 my phone rings.

“Mom, they don’t have my patches. They didn’t arrive in the order. What am I going to do,” she cries into the phone.

“Why didn’t they arrive?”

“I don’t know. I can’t deal with this Mom, please. Do something.”

“Okay, ask the pharmacist to call the other local pharmacies and see if anyone else has any and call me back.”

“Okay, Mommy. I’m so upset.”

“It will be okay, I love you.”

Ten minutes later she calls me back.

“MOOOOOOM, the 10mg have been recalled too! What am I going to do?
“I’ll call Dr. Dang’s office and get you a prescription for oral medication, you are going to have to switch. Can you go back to school?”

“I think so. I’ll go back now.”

I place a call to Dr. Dang’s office and explain the situation to the receptionist who promises Dr. Dang will call me back as soon as she can between patients. I do a few more errands and am on my way to Mariners to pick up my Synthroid when Dr. Dang calls me back. I pull over to the side of the road so I can concentrate while we discuss what medications Trinity can try.

There are two “classes” of ADHD medications Ritalin and Adderal. Daytrana is derived from the Ritalin class so we were trying to figure out which dose of Concerta which is long-acting, about 8 hours, would work for Trinity. Dr. Dang decided to write prescriptions for 36 mg Concerta, 18mg Concerta and 10mg of short-acting Ritalin and with instructions on how to start the dosing until we figured out a good dose. I drove straight back to Newport to obtain the prescriptions and then drove to Mariners. I showed Young, my pharmacist, the prescriptions and asked if he had any of them in stock.

“I have 10 pills of 36mg Concerta but nothing else and I don’t think I can get any more from my wholesaler.”
“Okay, that’s fine. I’ll just pick up my Synthroid and drive to Tustin Pharmacy.”

I got back in the car and drove to Tustin. During this time I have been receiving continuous calls and texts from Trinity who was in tears and decided she couldn’t go back to school and take her history quiz because she would fail. I felt so bad for her. It’s really hard to see your child struggling so much just because they don’t have their medication. She was at home in bed crying and a friend invited her to the beach but she didn’t want to go.

“Please, get out of bed and go to the beach. It will be good for you. I’ll get your medication, don’t worry.”

“Okay, Mom.”

I handed the prescriptions to the pharmacist in Tustin and was silently praying she would have them.

“Do you have these in stock?”

“Let me check,” she said.

I sat down and waited a few minutes.

“Well, it looks like we have fifty of the 10mg short-acting Ritalin but don’t have any of the long-acting Concerta she needs for the morning. I’m so sorry.”

Okay, think Tiffani… “Let’s fill the one you have and order the 18mg of Concerta and I’ll go back to Mariners and get the 10 pills of 36mg Concerta so she can go to school tomorrow.”

“Okay, perfect.”

While waiting for the prescription to be filled, I called Young and asked him to save the 10 pills for me and order 20 more.

“I’m not sure if my wholesaler can get me anymore. Let me call him and I’ll call you back.”

“Okay.”

The prescription was ready and I realized Trinity still had the health savings card, shoot. Oh well, it was only $50, so I paid for it and headed back to Newport. I called Trinity.

“Babe, I need the health savings card and I have some meds for you.

“Yay!”

“I’m on the freeway, I should be there in fifteen minutes, meet me on the street.”

“Okay, Mom. Thank you!”

I pulled up to 32rd street in Newport, gave her a pill and took the card and drove to Mariners again. When I walked in Young did not look happy to see me.

“Young, can you give me those 10 pills and order 20 more?”

“I’m not sure. I’ll call my wholesaler now.”

I wait five minutes and he is off the phone.

“I just spoke to my wholesaler and he can’t get me anymore. I can give you the 10 pills but then you will need Dr. Dang to write a new prescription for 20 pills and bring it to Tustin. I’m sorry.”

“Okay, that’s fine. Please just give me the 10 pills.”

I get back on the phone and call Tustin Pharmacy and ask them to order me 20 pills of 36 mg Concerta. Gratefully, she agrees to do it right away and says I can bring in the prescription the next day when Lou picks it up since I will be in Arizona.

I then call the poor receptionist at Dr. Dang’s office again and explain the situation. By this time it is almost 4 o’clock and I am exhausted, starving and so done with the whole thing.

One more call to Trinity asking her to pick up the prescription at Dr Dang’s on her way home from the beach because I cannot go to one more place.

Trinity feels so bad that I spent my entire day trying to get her meds and is very appreciative and grateful. I make one more stop at the market because I need chicken for Stella because I make all her food. Since I’m going to Arizona the next day I need to have enough of everything prepared before I leave.

I spend the rest of the day and night getting ready to go out of town, teaching Lou how to give Stella all her medication and discussing Trinity’s new dosing. Both Trinty and Lou laughingly beg me not to leave for Arizona the next day, so I text Tabitha for reinforcements. She offers to check in on them both, while I’m gone. I’m excited and nervous for my trip which is why I woke up at 3:30 am this morning and decided to write this post.

As always in reflecting upon the past two days I feel so grateful that I was able to drive back and forth to all those places to finally get my child what she needed. BUT, what if I didn’t have a car, what if I was at work and couldn’t leave, what if I hadn’t built relationships at both pharmacies? It’s not Dr. Dang’s fault nor the pharmacists, so whose fault is it? Big Pharma, the insurance companies, the FDA? I’m not sure. I just know it’s not fair and it really shouldn’t be this hard to get my child the medication she needs so she can function. I used to deal with this type of stuff daily with Tiara and I don’t miss it! It did send out prayers to all my TSC families and everyone else in the universe that has to do what I did over the past few days.

Anyways, I ‘m off to Arizona for a book signing at Artistic Impressions by Mara and then an interview with inspired media 360 on Friday, followed by lots of girl time with Mara, Beth, and Jen my BF’s from college, sans our fourth BF, Laura who is going to Vegas for her 25th wedding anniversary with her hubby. Apparently we are getting massages and facials on Saturday and doing some fun/crazy work-out Mara does daily. I’ll try to remember to take lots of pics.

Have a wonderful day and keep washing your hands.

live, love and laugh, like it’s your last.

xoxo tiffani