RAD/asthma and Singulair

RAD/asthma and Singulair

Joined: July 3rd, 2010, 9:13 pm

July 7th, 2015, 2:53 am #1

Hi all! I know there are a number of asthma moms here...DS is 4 and had a bad winter in which a couple of colds went straight to his chest and he ended up in the ER and on oral steroids. He also has a long history of coughing long after a cold is gone. So...the doctor prescribed him an inhaled steroid to use at the first sign of a sniffle (QVAR). I kept him on it a while, as he kept getting what appeared to be colds, but I now think he has developed some allergies. So, we took him to the ped again and he took him off the QVAR and put him on Singulair. I haven't noticed that much difference...still waking with stuffy nose and some slight coughing during the day. I have heard horror stories about Singulair and am not sure I want him to stay on it but I am afraid to take him off of it without having the QVAR in place. Those of you who have asthma kiddos...do your kids take Singulair and if not, what do they take? We don't know what to yet and have an appointment with an Allergy and Asthma specialist next week but I hate to keep him on it if it isn't needed. Thanks!!! Not a fun camp to be in...the "A" camp...scary.

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Joined: September 13th, 2008, 5:13 pm

July 7th, 2015, 1:40 pm #2

The thing to bear in mind about Singulair is that for some people, it makes a dramatic difference, and for others, it does absolutely.nothing. I have asthma and allergies, and my doctors tried me on it twice, and it made no difference whatsoever. I have heard the horror stories, too, and if you've had him on Singulair for more than a week with no improvement, I would call the doctor's office to let them know that. I'm also wondering whether your child should have a rescue inhaler (or maybe they prescribed one, too?).

The allergy specialist should get you straightened out. In the meantime, I would avoid anything you know is an allergen for DS. Are they performing allergy tests at the specialist? If not, you might think about putting him on OTC children's Allegra or Zyrtec (make sure he gets a good night sleep with the latter) till a day or two before the appointment. You have to stop antihistamines a few days before allergy tests, though, so be sure you know protocol from the allergist. Good luck!

Maggie (in VA)
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Joined: November 27th, 2011, 4:22 pm

July 7th, 2015, 2:41 pm #3

Hi all! I know there are a number of asthma moms here...DS is 4 and had a bad winter in which a couple of colds went straight to his chest and he ended up in the ER and on oral steroids. He also has a long history of coughing long after a cold is gone. So...the doctor prescribed him an inhaled steroid to use at the first sign of a sniffle (QVAR). I kept him on it a while, as he kept getting what appeared to be colds, but I now think he has developed some allergies. So, we took him to the ped again and he took him off the QVAR and put him on Singulair. I haven't noticed that much difference...still waking with stuffy nose and some slight coughing during the day. I have heard horror stories about Singulair and am not sure I want him to stay on it but I am afraid to take him off of it without having the QVAR in place. Those of you who have asthma kiddos...do your kids take Singulair and if not, what do they take? We don't know what to yet and have an appointment with an Allergy and Asthma specialist next week but I hate to keep him on it if it isn't needed. Thanks!!! Not a fun camp to be in...the "A" camp...scary.
My DS sounds similar to yours. Winter coughs/colds are the worst! We use a rescue inhaler (an albuterol derivative) and QVAR when things are bad and will leave him on the QVAR for a few weeks after a cough subsides. In desperation last winter, we tried Singulair, although I was VERY hesitant about doing so after reading all the horror stories. My ped said it's a miracle drug for about 20% of the kids that use it and for the majority of the rest it does nothing. I think the behavioral problems develop in a minority of kids, but I still hated taking the chance. He was on it for about a month with no real issues and no huge improvement either. Suddenly, though, he started having terrible nightmares and really severe sleep issues. After a couple weeks of this we took him off Singulair and things got better. I can't be sure it was the Singulair, but it was certainly suspicious. We now use Zyrtec when we think his allergies are bad, since that's what works for my allergy-induced asthma. It seems to work ok for DS, too, although it's not perfect.

Good luck!
Leigh
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Joined: November 20th, 2006, 6:03 pm

July 7th, 2015, 5:54 pm #4

Hi all! I know there are a number of asthma moms here...DS is 4 and had a bad winter in which a couple of colds went straight to his chest and he ended up in the ER and on oral steroids. He also has a long history of coughing long after a cold is gone. So...the doctor prescribed him an inhaled steroid to use at the first sign of a sniffle (QVAR). I kept him on it a while, as he kept getting what appeared to be colds, but I now think he has developed some allergies. So, we took him to the ped again and he took him off the QVAR and put him on Singulair. I haven't noticed that much difference...still waking with stuffy nose and some slight coughing during the day. I have heard horror stories about Singulair and am not sure I want him to stay on it but I am afraid to take him off of it without having the QVAR in place. Those of you who have asthma kiddos...do your kids take Singulair and if not, what do they take? We don't know what to yet and have an appointment with an Allergy and Asthma specialist next week but I hate to keep him on it if it isn't needed. Thanks!!! Not a fun camp to be in...the "A" camp...scary.
We COULD NOT get DS' asthma under control until we found Singulair. We had not heard any horror stories yet at that time, and for us, it was a miracle drug - for a few months. He was on it for two years longer, until drs finally admittted that the night terrors and hallucinations, severe depression/ suicidal statements (in a four year old!!!) were "possibly" from the singulair. My son said there were monsters in his head making him do terrible things. DS' brain was totally scrambled and he now has severe learning disabilities (he had learned letters and sounds fine before singulair, but now can't retain any of that). This drug can be a psychiatric disaster, especially in children. If it's not life or death and nothing else works, I wouldn't try it at all - and if you have tried it and are not sure it's making any difference, I would discuss with his doc, taking him off of it. Symptoms don't always come on right away; for many it's months and months later when all of this happens (for us it was gradual - nightmares, then night terrors, depression, then loss of motor control, then memory loss... I could go on and on, but all of it except for daytime hallucinations and nightmares which after a year and a half off of it are now infrequent, went away within two weeks. Oh and memory issues, which seem to be permanent. DS will be in special ed this year, despite being "scary smart" and testing off the charts in math, and comprehension. He just can't learn to read, and can't retain more than three pieces of information for any length of time. I totally blame the Singulair for scrambling his brain (twin sister has none of these issues, either.)

If you don't think it's making a major difference in his asthma symptoms, I would really talk to his doc about quitting. My doc was a real sh*t about it, and said "all of her patients were on it" which is ridiculous, because I met two of her patients after the fact who had taken their kids off it without her approval b/c she poo poo'd their concerns about their kids behavioral changes. If it's working for him I might keep him on it and stop at the first sign of any of this, but if it's not making a big difference, there is no reason to take the risk. I know asthma is so scary. DS had pneumonia twice this winter, and other ongoing respiratory stuff. Just sucks. My guy is doing better now, and I'm told may still outgrow this - hope yours does too . GL!! Best,
Kenny
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Joined: March 25th, 2008, 8:46 pm

July 7th, 2015, 7:47 pm #5

Hi all! I know there are a number of asthma moms here...DS is 4 and had a bad winter in which a couple of colds went straight to his chest and he ended up in the ER and on oral steroids. He also has a long history of coughing long after a cold is gone. So...the doctor prescribed him an inhaled steroid to use at the first sign of a sniffle (QVAR). I kept him on it a while, as he kept getting what appeared to be colds, but I now think he has developed some allergies. So, we took him to the ped again and he took him off the QVAR and put him on Singulair. I haven't noticed that much difference...still waking with stuffy nose and some slight coughing during the day. I have heard horror stories about Singulair and am not sure I want him to stay on it but I am afraid to take him off of it without having the QVAR in place. Those of you who have asthma kiddos...do your kids take Singulair and if not, what do they take? We don't know what to yet and have an appointment with an Allergy and Asthma specialist next week but I hate to keep him on it if it isn't needed. Thanks!!! Not a fun camp to be in...the "A" camp...scary.
My kids came at 25 weeks and were constantly sick when they started being exposed to people and struggled with illness-induced asthma for their first several years. I did a few things that may or may not have helped eliminate it:

1) Always lived at least a mile from the freeway.

2) Did not use weed killers in the yard.

3) Did not use air fresheners in the house.

4) Did not let them be exposed to even 3rd hand smoke.

5) Gave fish oil, vitamin D and probiotics

6) Gave lots of fruits and veggies (sigh, I wish they still ate so well)

It may be pure luck but they do not have asthma at all now. I have albuterol ampules for emergencies but they are off the steroid inhaler and the singulair (which I have no idea if it helped because the sickness was constant and maybe singulair kept it from being even worse, but maybe it did not).

I wish I could know if their current health is luck of the draw or if the above really helped. But they haven't even seen the pulmonologist in 2 yrs. This from a boy who needed oxygen his first 4 months!

Hopefully things improve soon. Watching your child struggle to breathe sucks.
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Joined: July 3rd, 2010, 9:13 pm

July 8th, 2015, 3:44 am #6

Hi all! I know there are a number of asthma moms here...DS is 4 and had a bad winter in which a couple of colds went straight to his chest and he ended up in the ER and on oral steroids. He also has a long history of coughing long after a cold is gone. So...the doctor prescribed him an inhaled steroid to use at the first sign of a sniffle (QVAR). I kept him on it a while, as he kept getting what appeared to be colds, but I now think he has developed some allergies. So, we took him to the ped again and he took him off the QVAR and put him on Singulair. I haven't noticed that much difference...still waking with stuffy nose and some slight coughing during the day. I have heard horror stories about Singulair and am not sure I want him to stay on it but I am afraid to take him off of it without having the QVAR in place. Those of you who have asthma kiddos...do your kids take Singulair and if not, what do they take? We don't know what to yet and have an appointment with an Allergy and Asthma specialist next week but I hate to keep him on it if it isn't needed. Thanks!!! Not a fun camp to be in...the "A" camp...scary.
While he is having less nasal symptoms this last week, it may just be because it has been rainy and the pollen has been low. Also, I have been cleaning a lot more. We did use his rescue inhaler tonight after he stuck his face in the vacuum canister while emptying it (loves to vacuum). He may not have needed it, but was coughing quite a bit. Other than that, he has not used it since after bronchitis in March. But, since he has had minimal issues (just nasal stuff with minimal coughing) except during winter illnesses, I may just take him off it the Singulair. Will ask a lot of questions of the specialist next week.

Just read that Miralax may cause similar psychiatric issues. Ugh. DS has been on that for most of his life. He is on a small dose now, but when we try to wean him off he ends up constipated and not eating. Don't know if this stuff is true or not. But it gets old.

Sorry to hear of all the struggles you all have been through!
Last edited by gr8tful1 on July 8th, 2015, 3:50 am, edited 1 time in total.
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Joined: September 13th, 2008, 5:13 pm

July 8th, 2015, 4:10 am #7

There is a lot of, frankly, hysteria being generated by the alternative medicine community about Miralax. Encopresis and gut problems are common to neurobehavioral disorders, and I suspect that parents are mistaking the cause and effect of the problem. Maggie (in VA)
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Joined: July 3rd, 2010, 9:13 pm

July 8th, 2015, 4:14 am #8

The thing to bear in mind about Singulair is that for some people, it makes a dramatic difference, and for others, it does absolutely.nothing. I have asthma and allergies, and my doctors tried me on it twice, and it made no difference whatsoever. I have heard the horror stories, too, and if you've had him on Singulair for more than a week with no improvement, I would call the doctor's office to let them know that. I'm also wondering whether your child should have a rescue inhaler (or maybe they prescribed one, too?).

The allergy specialist should get you straightened out. In the meantime, I would avoid anything you know is an allergen for DS. Are they performing allergy tests at the specialist? If not, you might think about putting him on OTC children's Allegra or Zyrtec (make sure he gets a good night sleep with the latter) till a day or two before the appointment. You have to stop antihistamines a few days before allergy tests, though, so be sure you know protocol from the allergist. Good luck!

Maggie (in VA)
Thanks, Maggie. I am not sure if they are testing or not as this will be our first visit. It is hard to see if there is an improvement since we don't know what his triggers are. The weather has been wacky and the nasal stuff is pretty new. I am praying it is not our new, beloved dog. Except when sick, his main symptoms are a stuffy nose sneezing for about an hour after he wakes and itchy nose and some coughing during three day. He has always coughed which we thought was due to reflux. I feel bad, as he used to cough a lot...I had no idea it could be rad/asthma. I thought asthma was only shortness of breath.
Last edited by gr8tful1 on July 8th, 2015, 4:33 am, edited 1 time in total.
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Joined: July 3rd, 2010, 9:13 pm

July 8th, 2015, 4:17 am #9

My DS sounds similar to yours. Winter coughs/colds are the worst! We use a rescue inhaler (an albuterol derivative) and QVAR when things are bad and will leave him on the QVAR for a few weeks after a cough subsides. In desperation last winter, we tried Singulair, although I was VERY hesitant about doing so after reading all the horror stories. My ped said it's a miracle drug for about 20% of the kids that use it and for the majority of the rest it does nothing. I think the behavioral problems develop in a minority of kids, but I still hated taking the chance. He was on it for about a month with no real issues and no huge improvement either. Suddenly, though, he started having terrible nightmares and really severe sleep issues. After a couple weeks of this we took him off Singulair and things got better. I can't be sure it was the Singulair, but it was certainly suspicious. We now use Zyrtec when we think his allergies are bad, since that's what works for my allergy-induced asthma. It seems to work ok for DS, too, although it's not perfect.

Good luck!
Leigh
I asked three doc and pharmacist if it could cause nightmares (he has had 2 since starting it 2 weeks ago after a year or more of none). They said no, but, very suspicious. Best to your LO. Not easy!
Last edited by gr8tful1 on July 8th, 2015, 4:33 am, edited 1 time in total.
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Joined: July 3rd, 2010, 9:13 pm

July 8th, 2015, 4:18 am #10

My kids came at 25 weeks and were constantly sick when they started being exposed to people and struggled with illness-induced asthma for their first several years. I did a few things that may or may not have helped eliminate it:

1) Always lived at least a mile from the freeway.

2) Did not use weed killers in the yard.

3) Did not use air fresheners in the house.

4) Did not let them be exposed to even 3rd hand smoke.

5) Gave fish oil, vitamin D and probiotics

6) Gave lots of fruits and veggies (sigh, I wish they still ate so well)

It may be pure luck but they do not have asthma at all now. I have albuterol ampules for emergencies but they are off the steroid inhaler and the singulair (which I have no idea if it helped because the sickness was constant and maybe singulair kept it from being even worse, but maybe it did not).

I wish I could know if their current health is luck of the draw or if the above really helped. But they haven't even seen the pulmonologist in 2 yrs. This from a boy who needed oxygen his first 4 months!

Hopefully things improve soon. Watching your child struggle to breathe sucks.
So glad they are better! We do those same things. Hoping he outgrows it!
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