ADHD Psychiatric Update and The Laundry Thief

Can you believe it?  TWO blog posts in one month!  This is amazing given how busy we have been.  There has been a ton of medical crap going on with Ellie.  Nothing serious, but I am tired.  She is tired. It sucks.  Yes, I am complaining.  I am only going to update you on the latest nonsense (you know skipping over the whole December ER visit due to low oxygen saturations) and move right into what has been going on these past few weeks.

First off, how about a little humor? We have a laundry thief in the house.  Ellie has this great obsession with her grey pants and grey shorts.  As in, they are the only articles of clothing she wants to wear.  As soon as they make it through the dryer cycle, she is stripping down and putting those grey shorts on.  Yes, for all you people inundated with snow, it is freaking hot out here in Texas - hence the shorts.

Anyway, Ellie thinks she is so sneaky. She will put the dirty shorts back into her drawer as soon as she puts on her PJs, trying to trick me into thinking that they are clean.  She also has the propensity to remove them from the dirty basket in the laundry room.  She discovered that I was hiding them in the washing machine so then she filched them and again put them back into the drawer.  I have now taken to hiding them in the laundry basket in the master bedroom or in the dryer.

ADHD vs. Comorbid Psychiatric Disorder

A few months ago, I posted about finding the right ADHD medications for Ellie.  We opted to take her off the Risperdal due to rapid weight gain and we had been trying other stimulants.  She had uncontrolled muscle movements and tics from Vyvanse and Adderall XR. 

We have tried adding in medications that used to work well for her to see if they would help again now that she has been off them for a while. Unfortunately, she was experiencing some significant adverse reactions that we did not see back whens she was on these medication previously.  I have absolutely no idea why she is responding so differently this go around. (No, it isn’t puberty).  She is now back on Risperdal, which is helping a little bit for her hyperactivity only.  We cannot keep her on this long term as she is back to rapidly gaining weight. (Weight gain for Ellie is not bad given her history of failure to thrive.  The concern is that it is really rapid - several pounds over a few weeks rather typical pediatric weight gain over a year.)

In addition to not having her ADHD under control, her thyroid is fluctuating and there are several changes at school.  We recently started to see behaviors that we have never seen before as well as a significant increase in hyperactivity even with an increase in Risperdal.

Neurology and I have both decided that it is time to consult with a pediatric psychologist.  It will be a while before she can be seen, but we are hoping that her doctor can pull some strings and get a phone consult.

DNA Gene Testing for Psychiatric Medication

A few weeks ago, during her f/u neurology appt, we swabbed her cheek for DNA testing.  Most studies have been performed on adults undergoing treatment for depression.  Certain genetic factors can affect how certain enzymes metablize various medications.  Medication recommendations are based off these results - use as directed; moderate gene-drug interactions; and significant gene-drug interactions.  The studies, on average, show that only 30% of those participants in the DNA tested group exhibited better control of their depressive symptoms than those in the non-DNA group.  Still, we were desperate and will take that 30% chance.

There are several gene companies out there such as GenoSight, Kalios, GenoMind, etc.  I originally contacted Dynamic DNA Laboratories as they do everything in house and you do not need a doctor’s prescription to run the test (they have their own staff review the results with you).  I spoke with their scientist and he stated that Ellie’s extra 21st chromosome does not affect the results.  Our neurology office uses GeneSight so we went with them.  It is important to note that many insurance companies consider the DNA testing for Medication Management to be experimental and with thus not cover such testing.  The average out-of-pocket expense is ~$300.

We just got the results and it was very disappointing.  While she should be able to tolerate the following as directed: all antidepressants, hypnotics (ie Xanax), antipsychotics, and mood stabilizers, there is only 1 (yes, I said one), ADHD medication that fell under the “used as directed” category.  All other medications have moderate to significant DNA interactions.  The good news as that we will no longer play Russian roulette with medications, but what if this one medication doesn’t work? 

Apparently, Ellie’s gene report looked “unusually empty” so the neuro clinic called GeneSight.  According to their lab, Ellie is the lucky 0.7% where the report comes back like that.   I mean, of course she is.  Why can’t anything ever be simple when it comes to The Bear?!

Ellie has been on methylphenidates, amphetamine salts, detroamphetamine, lisdexamfetamine, and guanfacine.  She used to tolerate amphetamine salts and guanfacine (the short acting) - all within the moderate to significant gene-drug interaction She is currently on clonidine and is experiencing no issues even though it is listed under moderate gene-drug interaction.

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Uncontrolled movements / tics with Vyvanse

• There are multiple ADHD meds out on the market and everyone has a different type of genetic make up. That means that a medication that works for you may not work for your friend’s child. For example, Ritalin did not work for Ellie, but Adderall helped her for years. The opposite is true for one of her peers. Side effects experienced are not the same from one person to the next. So while Ellie had an uncommon reaction to Vyvanse, it may be the miracle drug for another child. This blog post by no means is intended to slam the ADHD medication Vyvanse or say it is a horrible med because it’s not. All meds, even Tylenol can have serious side effects. This is just a post to update what has been going on with Ellie.*

Video taken at school 6 hours post Vyvanse.

The Beginning 

When Ellie was 22 months old, we saw a developmental pediatrician.  In the room during testing, barely walking, she shoved the exam table across the room, hoisted herself with just her arms onto the table and then rushing down, and mouthed a developmental tool so much that we couldn’t get it out of her mouth to even test her.

At home, she had the continual mouthing making it difficult for her to play with toys, eat, and even use writing implements.  Her hyperactivity looked like excessive, dangerous, non-purposeful climbing.  She would have this glassy look in her eyes.  Then there was the usual impulsivity and distractability.  

Things were so bad that I had to hold her while on the phone, and bring her into the bathroom with me where she would hang from the shower curtain or climb into the sink with the water on.  I was in tears with the developmental pediatrician.  Something had to be done. Thus began Ellie’s journey for managing 

ADHD.

We started off with ABA (applied behavior analysis) therapy, which is often used in Autism, but occasionally in ADHD.  We added in short-acting guanfacine AKA Tenex (a nonstimulant medication).  With the addition of Tenex, the hyperactivity significantly decreased, but she still had the other behaviors.  She was 3 years-old at the time.

Starting Stimulants - A Light Switch

By 4 years-old, it was obvious that the mouthing, impulsivity, and distractability were severely impairing her daily activities and learning.  It was recommended that we try a stimulant medication.  I opted to wait. . . until she was 4.5 years old.  I regret waiting.  She started Adderall after a trial of Ritalin that did not work well.  It took 3 doses changes before we saw anything.  I kid you not, it was like a light switch went off.  She could focus, she could sit, she could finally experience the joys of playing in a sandbox or coloring.

Medication Roulette

As always, good things come to an end.  By 7 years -old, she was maxed out on the Adderall so we added in Risperdal.  This worked well and she finally, after 3 years of not growing, she started to gain weight. .  . a lot of weight and rapidly.  Seven pounds in 6 weeks and she slowly continued to gain over the year.

Of course, 9 months later, the Adderall completely stopped working so stopped it and we added in 10mg of Vyvanse while continuing the Risperdal. It worked!

And. . . More Weight Gain

Unfortunately, 6 weeks ago, Ellie started to experience worsening reflux with vomiting.  The doctor added in Cyproheptadine to increase gastric emptying.  This medication was her old appetite stimulant.  You can see where I am going with this.

Ellie started eating a huge breakfast, 2 lunches at school (she would eat her entire lunch at snack time and then have to buy lunch at lunch time) and would eat from 4pm-6pm.  Which, led to more rapid weight gain.  I felt the need to do something.  As she had gained over 14 lbs in 1 year.

Time to Stop the Risperdal

Yes, the Risperdal work for her behaviors when paired with a stimulant medication, but my thought was we could knock out this mediation and increase the Vyvanse since she was tolerating the 10 mg. Thus, we began a month-long weaning program.  Let’s just say her ADHD was unbearable.  Hitting, hyperactive, oppositional, impulsive with throwing, distracted to the extent that it would take 7 minutes just to get her shoes on (remember the movie “UP” with the dog and “squeril”? - yes, like that). Add in the tantrums due to being unable to regulate herself and also poor communication skills, well, it was tough - especially when she got kicked out of her special needs dance class last week and she couldn’t understand why.

An Undesirable Effect from Vyvanse Increase

Last week, her Vyvanse was increased to 20 mg.  We saw some face rubbing and thought it was allergies.  We also saw some jaw popping, but we thought she was doing it on purpose for sensory reasons.  We were wrong.

On Tuesday, her Vyvanse was upped to 30 mg.  We did it Tuesday as it was a snow/ice day and I could monitor her.  Nothing of great excitement occurred. 

Then Wednesday, after arriving at school, I get the call and a video.  Ellie had uncontrolled movements and tics.  Face rubbing, crossing eyes, head shaking, jaw movements, fingers twitching, arm waving, feet shaking and tapping.  At home, it was so bad that she was practically falling off the toilet and she couldn’t even get food to her mouth.  

Taken 11.5 hours after Vyvanse

How do you treat it?  Well, you don’t.  You have to wait for it to get out of the system.  Vyvanse’s half life is 10-12 hours, meaning that a fair amount of it should be out of her system, but it can take a few days for it to be completely out.  At 13.5 hours, it was just as bad and it was also time for her bedtime Clonidine.  Clonidine is sometimes used to decrease tics in those who have Tourette’s syndrome.  Once it kicked in, it decreased her movements by 50% and she was able to sleep.  This morning, they are much better, but she still has the movements.  Neurology says it may be another 1-2 days before it is completely out of her system.

Where Do We Go From Here?

I am not sure.  There are several other medications out there.  She tolerated Adderall so well that perhaps the long-acting, extended release will work. We could put her back on Risperdal, but she would still need something else with it.  I am nervous and stressed.  I don’t want her to endure trial and error of a bunch of meds.  I don’t want to go through several weeks of finding the right med, the right dose, and with minimal side effects.  My heart hurts for her.

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Weight Gain, Cecostomy, and Constipation

The Chunky Chicken is back!  Ellie's ADHD has been out of control.  She won't sit in her chair, is shoving things off kids' desks at school, and tearing pictures off the walls.  At home, she gets distracted putting on her shoes.  One shoe half on and "oh my goodness, I must go over there!".  She does great in the mornings, but in the afternoon, it is as though we never gave her the afternoon adderall.  Unfortunately, she has maxed out of the Adderall dosage-wise.  As in we cannot go up on the dose.  So we started a new, non stimulant medication.  The main side effects are fatigue (She is going to be at 6:30pm now!) and weight gain.  The weight gain is excessive.  She is gaining 1 lb a week and eating nonstop.  Sadly, the GI doc warned us that if she gains too much more, she may need to go on a diet.  Honestly, I think that she has already gained too much weight.  Yes, she had failure to thrive and needed to gain weight, but this is excessive and piling on too quickly.  It is unfortunate, because I feel like this new medication is working.  Yet, I have to weigh things - ADHD out of control or weight gain with the associate diabetes and high cholesterol.

In other news, where I last left off, Ellie hadn't had a bowel movement in 19 days.  GI wasn't coming up with a good solution or taking me seriously.  Well, after 21 days, they had us come in for an office visit.  The new plan was to give a SMOG enema through the cecostomy tube.  Usually, we put in normal saline.  A SMOG enema is saline, mineral oil, and glycerin.  These are the types of enemas we used to give Ellie rectally.  That night, I was supposed to give 180 mL of a SMOG enema followed by 180 mL of saline.  Well, I only got in 30 mL of the SMOG enema before the tube clogged.  Did all the oil and glycerin clog the tube or was there a big ole piece of stool blocking the tube?  I waited a while and was able to get some saline in.  I called GI in full on panic mode and asked if I could mix the 180 mL of saline with the 180 mL of the SMOG enema to make it less viscous and it worked!  I was able to get all of it in and we got results!

The following day Ellie had her Chait Trapdoor placed.  This is the permanent button in her colon.  It was a quick day surgery and she recovered nicely.  They used guided x-rays to place the Chait Trapdoor and we discovered that after 22 days, her colon was cleaned out!  The post-op nurse spent a great deal of time going over what to do if the button comes out.  Apparently, this is a common thing.  Yet, if you see what the Chait Trapdoor looks like, you'd think it would hurt if pulled on.

Chait Trapdoor

Adapter

We are now doing every other day saline enemas and they seem to be working (I don't want to jinx this so I am knocking on wood right now).  Even though it has been nearly 2 weeks since the button was place, Ellie is still having a lot of pain when I open/shut the trapdoor and when I attach the adapter device.  I called Radiology to see if this amount of pain is normal this far out, but of course I never heard back.

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