Adjusting my daughter’s ADHD meds – at her request

In June of 2015 we started our daughter Lexie on medication for ADHD. At the time, we weren’t even sure she had a problem. Her teacher had shown concern that she couldn’t sit still in class and was having trouble concentrating. The test from her pediatrician had proved inconclusive but she suggested trying medication to see if it would help – and it would give us the answer to the question whether Lexie had ADHD or not.

Jumping to medication may seem like a jump when you don’t have a definite diagnosis but no amount of redirection seemed to help Lexie. We worried about the side effects of the medication and that we would be creating some kind of zombie who shuffled through the day. But we also didn’t want her to continue struggle in school.

adderall-xr-10-mgWe started her on the lowest dose possible but saw little in the way of change. But the next highest dose seemed just about right but we waited until she started the school year to finalize the amount of medication she took. We wanted to see how she did in a school setting verses just being at home in the summer. At our first parent-teacher conference, her teacher said she was doing great. Lexie’s reading had already jumped several levels and she seemed to have no problem paying attention.

Everything progressed well through the school year. The dose seemed the right amount to give Lexie the focus she needed without diminishing her bubbly nature.

Then she started third grade. From the beginning, she began complaining about not being able to focus. She would tell us when her teacher had to redirect her or when she would get in trouble. Comments from the teacher came home echoing the same thing – Lexie wasn’t paying attention in class.

Lexie has never been a fan of taking the medication. She doesn’t like that it sometimes makes her not hungry. She worries that she isn’t her same fun self on the meds. But she also finally has realized the benefits. She too knew that last school year she had less problems.

drugitem_5271When I asked her if she thought the medication wasn’t working properly, she said yes. We talked about how much she has grown in the past year and how medications must change as you get bigger. She suggested that might mean she needed a higher dose. She then thought about it for awhile and even talked about it with her teacher who of course wouldn’t tell her what to do but did ask her questions to help her fully explore her options.

When we went to see the pediatrician, my eight-year-old calmly explained to her rationale for going to a higher dose. The doctor agreed it was a good thing to try so we went up one more level in her medication.

And so far it has been helping. Both Lexie and her teacher say she is more focused in class. So barring a drastic change in her weight at her one-month follow up appointment, it looks like Lexie was correct in asking for an increase in her medication.

Changing my daughter’s ADHD medicine due to insurance

Last June, my daughter began taking a generic version of Focalin to help her focus in school after she was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD). By July, we had increased the strength. We thought her behavior was much improved. Even the doctor noticed a difference at a follow-up appointment. We decided to wait for school to start to see if it was the correct dosage to help her with her classroom learning.

When we met with Lexie’s teacher for a parent-teacher conference in November, we learned that she was doing great in school and that even her reading scores had risen from last year. Her teacher said her dosage was perfect.

That was all well and fine until we received a letter that the Lexie’s medical insurance plan was being discontinued, and we would need to select a new one. When we looked at the plans out there, we were left with two choices – either select an insurance that had her pediatrician on the plan and NOT her specialists (ophthalmologist and allergist) or pick one that had the specialists but would cause us to lose the doctor she has had since birth.

If you have been following my blog, you will know that Lexie has had a variety of medical issues (situs inverses, eczema, allergies, polysplenia). Things have been going well, and I was eager to keep the pediatricians we knew and who knew her.

capsuleBefore choosing our new health insurance, I made sure Lexie’s meds were on their approved list. She takes two antihistamines as well as the ADHD medication. I checked, and they were on the list. Yeah!

January hit and when I went to fill Lexie’s ADHD medication, the pharmacy said that the insurance wouldn’t cover that drug. They wanted her switched to Adderall.

It seems I had missed something very important when looking up coverage of her drug. Her medication had an “ER” at the end of it. That is for Extended Release.

Her new insurance would cover the generic Focalin but not the Extended Release version. They requested we switch her to Adderall Extended Release. Her pediatrician petitioned them to allow her to stay on the Focalin, but the insurance denied the request. While waiting for the decision, we had no choice but to put her on Adderall.

I warned her teacher about the change, so she could watch for any side effects and to let us know if the medicine wasn’t working as well as the previous one. Her awesome teacher sent me an email every day for the first couple of days. She noticed no side effects, and it seemed to be working fine.

That is good news and bad news. Good that she is responding to the new medicine but bad that we will no longer go back to the medication her doctor prefers. I guess all that really matters is that the medicine is working, and Lexie is able to focus during school.

 

Starting ADD medication  

Lexie at her Fiesta parade in April.

Lexie at her Fiesta parade in April.

I wrote back in March that Lexie’s teacher was concerned that she might have an attention or focus problem. I brought it up to Lexie’s pediatrician at her 7-year-old checkup in April. After a few basic questions, she gave us the paperwork to have her assessed for ADD or ADHD.

Basically this included a questionnaire for both parents and her teacher. They like to have four assessments so we had Lexie’s reading teacher also fill out a form. The pediatrician then scored the questionnaires. We met with her at the end of April to go over the results.

Both my questionnaire and Lexie’s primary teacher indicated that Lexie might have a focus problem. But the one from my husband and her reading teacher didn’t. Since all four questionnaire were not in sync with each other, there was no definite diagnosis of ADD or ADHD.

As we discussed this, Lexie is rolling across the exam table and even though she had my husband’s phone to play with, she can’t sit still.

The doctor talked briefly about our options – trying therapy to redirect Lexie or trying some medication to see if that helped her focus. If the medicine worked, we would then have our ADD diagnosis. If it didn’t then we would need to look at other methods for redirecting her.

I think because we are already frustrated with her, medication seemed the easier solution to at least get a definitive diagnosis. The doctor went over the side effects – decreased appetite, sleep problems or even possibly heart palpitations.

One thing I didn’t realize is that most ADD medications are stimulants. As such, since Lexie was born with a congenitive heart defect (which resolved itself before 9 months old), the doctor ordered an EKG that would be evaluated by her pediatric cardiologist (who we hadn’t seen in almost 6 years).

Well, her cardiologist had since changed offices and he didn’t have access to her old records. If he had, we probably would have been saved from having to make an appointment to see him. As it was, we got a call that he had noted something unusual on her EKG and we needed to follow up with him.

After a second EKG, an echocardiogram and refreshing his memory about Lexie’s medical history, he pronounced her heart strong and saw no problem with her taking ADD medicine. (He did note that he could see why she might need the medication as she again could hardly sit still during the exam.)

So after one last appointment to again go over the side effects, we were given a prescription for Focalin. We were to start her with the lowest dosage of 5 mg and then if after two weeks that didn’t seem to help, we were to move her to a 10 mg dosage.

After a few days delay of getting the insurance company to understand the dosage instructions so they would cover her medication, we tried to start Lexie on the medication on June 12th. I say try because the medicine came in a pill format and Lexie has never taken a pill.

My husband thought it would be no trouble as he has never had problems swallowing pills. I on the other hand remember struggling with it as a child. Lexie takes after me and had trouble swallowing the capsule.

The instructions indicated that we could open the capsule and add it to a spoonful of applesauce which we didn’t have since neither kid eats it. So we decided to open a capsule and add the contents to some water and administer it by a syringe as we do all of Lexie’s other medications. Lexie however panicked and the most of the meds dribbled down her front side.

Admitting defeat for the day, we tried again the next day. This time we sprinkled it on a spoonful of yogurt and she had no problem taking it. She has now been taking it for a little over a week and there has been very little change in her behavior. We will probably try the higher dosage in the coming week and then meet with her doctor next month to check her weight and discuss if the medication is helping her.

Treating the child not the fever

My son followed one of my childhood Christmas traditions this year; he was sick. As a child, I routinely had strep throat during Christmas. This year Jase woke up with a 102 degree temperature on Christmas morning.

My daughter and I had a low-grade fever the weekend before Christmas. Now when I mention this to my husband, his usual response is to give them fever reducing medicine such as children’s ibuprofen. But I am not one to take medicine, unless I really need it. So unless the fever is causing some discomfort, I don’t want to give them medicine to reduce it. I am definitely one to treat the child and not the fever. After all, the fever is there for a reason.

Actually, this time in both incidents, I did reach for the medicine. Lexie complained her head hurt and just wasn’t herself, so we gave her ibuprofen. But the next day, she still had the same low-grade fever but was playing enthusiastically with her brother. No medicine this time.

Now with Jase and Christmas day, we wanted him to enjoy the morning of opening presents, so we convinced him to take some chewable ibuprofen. I say convinced because he really hates taking medicine. Lexie, on the other hand, has been taking some form of medication every day basically since birth and is pretty good about taking her medicine though on some of the nastier tasting antibiotics we do end up bribing her. (Candy works wonders.)

sick childJase took the medicine and had a wonderful Christmas morning. It is amazing that you can see almost exactly when the medicine wears off. His face is flush and he just curls up on the couch. The next day he was feeling even worse and tried a liquid cold medicine. It didn’t go over too well. After that, he refused to take any medicine. And since he fever was under 102, I didn’t force the issue. We just concentrated on giving him fluids and letting him rest.  We offered him anything he wanted to drink, but he stuck with juice (which he almost never drinks) and milk. I was just happy to get him to take anything since he didn’t eat at all the day after Christmas.

Now in this case, we let Jase decide about the medicine, but just so you don’t think he is in charge all the time, if it had been a prescription medication, he wouldn’t have had a choice just like if the fever had been higher than 102, he would not have been the one to decide whether he took it.

That said, it is no fun to be sick while on our Christmas break. But the good news is that he didn’t break his perfect attendance record at school. And as a reward for perfect attendance, he earned a free ticket to tonight’s Spurs game against the Brooklyn Nets. Yep, now that everyone is finally better we are all going to the basketball game. This is Lexie’s first time and could possibly supply a whole new blog topic for new week. We will see. Until then…Go Spurs Go!