It’s not often I write about my family on Diva Dietitian.  I don’t want my kids one day to read my blog and be horrified by something I’ve written.   You know, something that could be “embarrassing.”   And my biggest rule is not to write about my husband or my marriage.  I just try to keep some parts of my life private.

I am writing this because if there is anyone else going through a similar situation, I hope you may benefit from this.  And if you are going through this or have gone through a similar scenario, please leave me a comment.

Anyway, last week I noticed my 5 year old son started acting really different (Thus, the lack of posts last week) I was a worried mess.  Prior to this, he had never had any real health issues except a little asthma stuff going on during soccer season last fall.

The only thing I could think we had done differently around here was we had been giving him Singulair for his allergy induced Asthma.  A couple weeks ago he started coughing at night and in the morning.  I was on top of the dust in his room….clean sheets, vaccuming, HEPA air filter & all his stuffy friends are in his closet- hidden away.  But he was still coughing.

When he struggled with a bit of Asthma last fall, we did fill a prescription for Singulair, but I only gave it to him once or twice AND really just we just gave him the nebulizer in the evenings and before soccer games.

Because I launched the drug Singulair as a sales Rep for Merck many years ago, I thought I knew all about Singulair.  I learned it was safe, very safe.  I remember meeting parents in Pediatrician offices who were in tears because their kids could play outside again.  Happy Tears because their kids could breath.  Singulair worked, it really worked and changed lives.

I’m always hesitant to give my kids medicine unless they really need it.  But this was Singulair and I knew it was “safe.”

I thought, “let me just give it to him and see if it makes my son feel better.”

After a few days of giving my son Singulair, I noticed that he was coughing less so I made sure he had it every night before he went to bed.  After about a week, he wasn’t coughing at all.  I made sure he got Singulair every night. I was psyched- it was working!

On March 16th (about two weeks after starting the Singulair) I took him to the Pediatrician for a rash he had developed on his elbows and a little on his hands.  There was some weird bumpy Viral rash going around called Moluskum (or something like that) that was contagious and I wanted to make sure that’s not what it was.  Our Ped, confirmed that it did not look like that and was probably just an allergy to grass or something else like a new soap (which we had not changed)

While we were there, I told her how my son was popping his shoulders a little bit and playing with his fingers a little.  My son has inherited my Dad’s genes and is double jointed.  Last week, he started playing his hands and shoulder’s.   I thought it was just a little boy thing and he thought it was cool.  Regardless, I asked our Ped with a wink, “Dr. J, that’s not good for him to do right?”  Maybe if the Dr. told him not to do it, he would stop doing it.

Last Wed, I noticed. He was blinking his eyes a lot and doing these strange things with his fingers a lot more.   It looked like he was playing the guitar all the time, but without an instrument in his hands.  I noticed a bit of the blinking the week prior, but just thought he had itchy allergy eyes.  I also noticed him playing with his fingers.  Again, I just figured he thought this was a cool neat thing his body could do.  He’s a a boy after-all.   Our Nanny noticed the blinking thing too the week prior, but it didn’t seem too bad, nothing to really worry about.  We all just thought is was allergies.  And if it was, well- Singulair is supposed to work for that too.

Also, last Wed, I noticed he started to bob his head back with the blinks and/or do this shoulder thing.  I asked his K teacher if she had noticed anything and she had noticed he was biting his nails the past two weeks (which he never did before) and that he was indeed blinking.  His school work was all great and socially he’s doing awesome too- lots of great friends.

I called our Pediatrician after school after my conversation with his teacher.  I told her a little bit more about what was going on and that I think it could be a side effect from the Singulair.  She said she had seen some behavior stuff with Singulair, but not tics.  I did not give him Singulair starting Wed.  Tuesday night was his last dose.   My little man was also up Monday and Tuesday mornings of this week very early.  I found him downstairs on the couch snuggling his blanket.  He told me he couldn’t sleep and heard a noise under his bed???  Weird for him,  but I didn’t think anything of it.

Friday, I took him to the pediatrician right after school and he got a Strep test (negative results.)  The Ped did notice the blinking and weird body twitching while we were there.  She also asked him if he’s been feeling different.  He said, “A little.”

She asked,  “Do you know how long you’ve been feeling this way?”

He said, “Since Dr. Seuss’s Birthday.”

Dr. Seuss’s  birthday was March 2nd.  Yep, 2 weeks ago, about when we started giving him the Singulair- maybe a day or two prior.  We agreed to keep him off all medication to see if it clears up and to follow up in a few days.

I went home Googled Singulair again.  I wanted to know how long this drug would take to get out of his system.  I wanted to see if these side effects have been reported or added to the Package Insert since I sold it (over 10 years ago)

It said that the half life (amount of time for 1/2 of the drug to be eliminated) is 5 hours. So, what that means that it could take up to 10-30 hours or so for the drug to be out of his system.  But everyone is different.

However, I know as a prior rep for the product, that Singulair can take up to a week or two to show full effect of the product (stopping asthma symptoms.)  So maybe it could take that long for it’s effects to wear off?

Singulair is a Leukotriene Blocker.  Think of a gatekeeper or bouncer at a party.  A bunch of leukotriene’s already went through the gate.  Then, when Singulair (bouncer) is at the gate, new leukotrienes in line can’t get inside.   They are not allowed to party.   Singulair blocks them from attending.  And although the drug may be out of the body in a few hours or days,  what are those leukotrienes doing that were waiting at the gate?  Or what’s going on inside the party (body) without those leukotrienes present?  Maybe the party stinks without the leukotrienes present.  I’m sure it must change the dynamic.

Anyway, Friday night was a BAD night.  We had friends over and it was like my son was not my son.  I watched him all night.  He was really struggling and seemed confused and a little dazed.  He said his head hurt a little earlier and I took his temp (around 4:30/5:00 pm)- no fever.  His movements looked like Tourettes Syndrome.  He was constantly blinking, nodding and moving his hands.  I used my iPhone to video his behavior.

At about 10:30 pm I took his temp and he had a 101. 5 fever.  I gave him some Motrin which brought the fever right down.  I called our Ped and sent her my video.  We were sent to the ER. 

BTW-I am NOT going to post the video, just don’t want to & because the video makes me sad to watch.

So Friday around 11:30 pm, I drove down town to Philadelphia (an hour drive) We were at the CHOP ER in the middle of the night (or should I say Nightmare!) until 6:00 am Sat. morning.   My experience at CHOP is a whole post in itself.

Long story short, CHOP did not do the the blood tests my pediatrician had called in for us.  CBC with diff, Thyroid, ASO (antibody levels), Lyme’s  etc.   We were basically there all night (mostly just waiting around.)  We told the same story and showed the same video to 3 different people (nurse, Resident, Attending) and came home with no answers, no bloodwork done, no EKG- nothing.  Just a referral to a neurologist as they think the video looked like a Tic Disorder or Tourettes.  And I knew that already.  What a waste of a night.

Saturday morning our Ped called livid that they did not do the tests.  We were both frustrated and tired.  After an hour or two of sleep, I went by her office with my son to pick up a prescription for Amoxicillin, a STAT order for bloodwork to get done that day (because CHOP failed to do it!) and a lollipop for Cole (because our Pediatrician is awesome and thoughtful!)  Our Dr. wanted to rule out Lyme’s disease, check his CBC, and look for antibodies that can develop with PANDAS (post strep syndrome, although his strep test was negative Friday)

So I proceeded to Doylestown hospital to get the blood work done, after being up all night the night before with my little guy who thought he was just going out for Mango Water Ice at Rita’s. We got to Doylestown Hospital at 11:00 am to hear that they would not take our insurance.  Because with Coventry insurance, you have to go to LabCorp (now closed)  I was in tears.  And yes, I think healthcare is starting to suck in this country.  Even though we had a STAT RX for the blood tests, they wouldn’t do it.  And for a little 5 year old boy?!?  Seriously I was angry.

My options: check him into the ER to get the blood work done or wait until Monday.   I looked at my son and was thrilled I could just take him out for an icy treat, just like he expected.  We both needed some normalcy.

We again called the Ped on her cell, filled the RX and went home.  My son took his first dose- 1 tsp of Amoxicillan.   His blinking stuff was still going on, less than the night before though- much less, but he was still not himself. He got  a second dose before bed at 8:00.

I again Googled Singulair to look for information.  I found several websites with parents who also thought Singulair was the cause of their child’s tics.

Here is what I found on the Singulair.com website:  Note:  behavior issues ARE LISTED- FIRST at the top including tremor, feeling anxious, trouble sleeping and Agitation.  And although specifically Tics or Tourette like symptoms are not on the list, that means nothing to me.

As a previous Pharma & Biotech sales rep for 15+ years,  I ALWAYS reported any side effects reported to me.  I also know that parents don’t always report side effects or may not know there child is having a side effect.  I also know that a physician may not always associate side effects with a drug, especially if it’s not in the Product Package Insert.  Tics, specifically, are not listed in the US Singulair prescribing information.  Other neurological symptoms and behavior things are listed.  Bottom line, side effects often go un-reported.

In addition to the Singulair website, I also found several websites with parents swearing Singulair caused tics and tourette symptoms in their children.

I know parents want to find a reason for any health issues their kids have.  I know I do.  And as a Mom and Registered Dietitian, I have been writing down everything my son eats and does.  We also never do fake colors or sweeteners at our house either.  And there is Aspartame in Singulair- could that be it? Could this be a food allergy?  I even stopped giving him Peanut Butter last Wed. and found myself wishing that this is some crazy reaction to nuts or wheat.  I’m an RD- I could handle that!

I know you can’t believe everything you read, especially on Google.  But I must say that some of these Singulair TIC side effect stories hit home and sounded so similar to what we are going through.  Hmmm….

Sat and Sunday, my son’s tics appeared to be happening much less.  They were less frequent and less severe.  After, finally, a good night’s sleep, we all went to church on Sunday morning.  I needed to pray….and cry.  Luckily, we sat in the back because the tears I had been holding in to be strong for my little guy, all poured down my face.  I prayed for my son.  I prayed for an answer and for the strength to get through this.  I prayed that my little guy would just have a normal morning at Sunday school.

Half way through the service, I took a trip to the bathroom for a tissue break AND because I couldn’t help myself- I had to go peek into my boy’s Sunday school room.  He was having fun.  I saw a few blinks, but he seemed happy- just sitting next to his best buddy listening to his teacher.

After church, his best friend came over to play.  We were thrilled he could come for a spur of the moment play date.  We launched rocket balloons off the deck, played a little Wii, ran around outside and played on the swingset.   And with the exception of some eye blinking (much less) and a few head nods (also much less) my boy seemed to be having a really great day.   Before bed, he got his fourth dose of antibiotic.

So yesterday, Monday morning, I took my sweet boy for his blood tests- 8:30 am.  And I’m hoping they are all accurate because he had now 5 doses of Amoxicillan because of nightmare attempting to get them done over the weekend.

I told him we had to get tests and that if he was brave we would go out and get a special toy he wanted, these little Mario and Luigi guys.   When he asked what the tests were, I told him a white lie.  I told him I couldn’t read the Dr’s handwriting and that we just had to go to the test center and follow the directions.

My naive little man walked into the test center as brave as can be and clueless that he was about to get stuck with a needle.  I held him on my lap, put a movie on my iPad, and listened to him cry through it.  I wanted to cry too, but I didn’t.  They filled up 5 different vials with his blood.  We didn’t look, neither one of us.

He said, “Dr. J said I didn’t have to get any more shots until I’m 10!”

I ensured him Dr. J did NOT lie and that this was a blood test, not a shot.  We just had to check some things to make sure he was getting better. He was cool with that.

Most of his labs came back yesterday afternoon and was completely normal (Thank God!)  We are just waiting on the antibody test- which we should get later today.  I’m hoping it’s normal.

Because if this particular ASO test is elevated, it could be this thing called PANDAS, which stands for Paediatric Autoimmune Neuropsychiatric
Disorders Associated with Streptococcus.  And if it is PANDAS, anytime my son has Strep or is near Strep, his brain may react and he could start with the TICS again.  From what I’ve been reading, I think therapy includes prophylactic antibiotics or IVIG therapy or Plasmaphoresis.

I’m praying this is a side effect from Singulair and that is on it’s way OUT!  OR maybe this is something simple like a nut allergy.  Today, Cole is having a good day.  I’ve only noticed a few blinks, no head nodding and he seems very happy. He also was coughing a little this morning.  Maybe that means the Singulair’s effects are going away?  Leukotrienes are you back?

Whether it’s the Antibiotics working, the Singulair leaving his system or the lack of Peanut Butter- today he is having a very good day.  Honestly, I know it’s probably not the Peanut Butter, that’s the Mom in me looking for a simple solution to a complicated puzzle.

I’m just happy to report that today I felt like writing and that my boy is pretty much back to his happy normal self, with the exception of a little blinking here and there.

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