Just say no to Singulair

Last Thursday night I had what I was determined to be the last of these totally sleepless nights with Cooper. He was up every 45 minutes - no exaggeration! It was horrendous and it's been like this for weeks - started gradually getting worse and worse at around the 4.5-5 month old mark. Granted, he was not sleeping through the night before that, BUT he was at least giving me 3 hour stretches throughout the night.

Friday morning I got up and once I got Cooper situated with the nanny I sat down and just cried and cried. I was at my wits end, finally. I decided this can't continue. I thought long and hard about what could be causing this. I have read countless books on how to create a consistent bed time routine, how to soothe them back to sleep when they're restless and waking at night, how to prevent reliance upon night time feedings and crutches like pacifiers. None of the techniques worked with him. The only thing I didn't try was "cry-it-out" and I was not about to resort to that since it's well known that it doesn't work for (and can be dangerous for) reflux babies.

I decided there had to be another factor involved so I started looking up his medications again. Prevacid, Singulair, and Intal. He was on the Prevacid first and he was sleeping OK (not through the night but not horrible like this) on that before we introduced the Singulair. I didn't find anything that implicated the medications at first so I called Cooper's doctors - the lung specialist (Dr.C) and the GI specialist (Dr.E; formerly referred to as Dr.Beverly Hills).

Dr.C's office (spoke to a nurse) said that the Singulair and Intal are not known to cause insomnia like symptoms but that in children Singulair can cause "behavioral changes" like mood shifts and things which if seen are signs that changes might be needed and she said sleep disturbances are considered a form of behavioral change and she recommended we cut back to 3x/week instead of daily.

Next, I spoke with Dr.E and explained what was happening. She said she was surprised Cooper wouldn't be sleepy and sleep through on the Singulair since it is sedating and she said the fact that he's waking up screaming indicates he's in pain or extremely fearful of something. I told her about his gas too and she said that Prevacid (nor the other meds) wouldn't cause the gassiness but that refluxers tend to have gas pain issues b/c they take in more air when they swallow and it builds up throughout the day and becomes painful at night and early morning. That explains why he has fireworks in his pants all night and early morning. She said to give him a double dose of Mylicon gas drops 3x/day or more for 24 hours to see if that results in any change. And, if it doesn't, she said to start switching him over to Alimentum formula again b/c gassiness can be a sign of lactose intolerance. Alimentum is hypoallergenic but it also has a funny smell and taste and she said that he might reject it this time (even though he accepted it months ago when on it last time) because babies over 6 months have a more discerning taste sense so she said mix it half and half with his current formula and see if he'll take it.

Dr.E also mentioned that Prevacid can cause digestion to slow down since we've turned off his acid pumps and that he might be having stomach cramps since he gets solid food now and he might need a medication that helps move the food through quicker but that'll be a last resort after we try other things first.

The Mylicon drops did not help so I started the switch over to Similac Alimentum but Cooper refused to drink it. Took one sip and actually hit the bottle away. LOL I waited a while and tried again. Same result. Again. Same result. LOL So I decided to try Similac Sensitive instead - he'd been on that once before too - it's lactose-free and intended for babies with fussiness and gas due to lactose intolerance but not good for babies with milk protein allergy - that's OK though b/c he tested negative for that twice. Thankfully, he was accepting of that so over the weekend he's gotten half that and half Enfamil. Today he's getting 2/3 Similac Sensitive, 1/3 Enfamil Lipil. In just 2 days I am seeing a reduction in his gassiness! =)

After 2 nights without the Singulair I noticed he was able to fall asleep peacefully for naps and at night - no protesting, no whining and crying like he has been doing prior to naps and bed time. He also slept 3.5 hours for the first stretch last night (3rd night without Singulair) and then 2 hour stretches thereafter. That's a major improvement. AND when he woke up he was not screaming or crying - just moaning and wiggling and the like. He also only ate 2 bottles of formula last night compared to 3.5 that he's been taking up til now.

After seeing these gradual improvements over the weekend I hopped online to do more digging around to find out about his medications. My search found no indication that Intal would cause sleeplessness or pain that may lead to that. BUT...I found THIS SITE and started reading all the first hand accounts from parents and grandparents who had children on Singulair. I noticed too that on the home page of www.medications.com, it shows Singulair has the second highest number of side effect reports on their site! I also received some notes from women in my online support group about their children's' experience on Singulair and these sources of information were all I needed to decide that Cooper will not be receiving this medication AT ALL anymore - not 3x/week, not ever again. In a nutshell, for many people it causes stomach pain, anxiety, agitation, night terrors, restlessness, and more. It can cause depression and suicidal thoughts too in children, adolescents and adults. I was absolutely horrified when I read accounts of how the drug affected babies, children, and adults alike. I called Dr.C's office this morning and left a message informing them that I will NOT be giving him the Singulair anymore and that they should call me to discuss alternatives.

Meantime, Cooper's first nap of the day has been soooo much better than days prior - he fell asleep calmly and sweetly in the nanny's arms (no fuss) and he wiggled at the 45 minute mark but kept sleeping and last time I checked he had been asleep for over an hour already. :)

So...today I have hope. I have hope that the steps we're taking are making him feel better which are helping him to sleep better.