Help with singulair

[kimballot]

My ds14 is now 3 weeks post IVIG #2 (12 weeks post IVIG #1).

 

He had severe onset depression at the end of February. We recently saw an LLMD, who recommended we stop singular (which was started at the end of January for allergies), as singulair has been linked to depression and suicidality in a few cases. If there is a rare side effect to a medication, my son will likely experience that side effect, so I stopped the singulair 5 days ago.

 

Two days after stopping the singulair he was showing a return of interest in outdoor activities, and three days after stopping singulair he had a pleasant day and was affectionate with his family for the first time in months.

 

Four days after stopping singulair (yesterday) he said "Mom, please don't ever put me back on singulair again - I feel so much better off of it and I want to do more things now and I think I did better on my test in school today".

 

I was thrilled and hopeful (always a mistake).

 

Today he told me that his OCD is "back" - though he can't describe exactly how (or he won't tell me how - he generally keeps his OCD thoughts private). He also told me he has been having restless leg syndrome at night.

 

Today he asked (begged/ insisted) to have singulair again (ugh!). I looked up singulair withdrawal and saw that some people do experience withdrawal, so I gave him one tablet, thinking I will try to do every-other day for about a week, then taper down to every third day, etc.

 

I am wondering if anyone has had neurpsych symptoms with singulair and if anyone has gone off "cold turkey" or if you had to be weaned off.

 

Thanks!

[tpotter]

Very interesting about the Singulair. My DS18 and I both take it, also. I do know that it could cause something like restless leg syndrome (not necessarily RLS, but something like it.) I wouldn't be surprised if it could cause more in some kids. Good luck with him. Hopefully things get way better.

[butterflymom]

=

Edited October 5, 2015 by tampicc

[Fixit]

Ds started sng at 10mg in the fall about a week prior to starting allergy shots...kinda wanted to clear his system before addiing more pollens. Then as winter arrived and pollen dropped below 10, i dropped his dose to 5mg tablets. We stayed at that dose till Feb, when pollen started to rise quickly. So i raised the dose back to 10mg. They do make different dosages and 5mg is chewable. I would think that you could even split that to 2.5mg.

[thenmama]

xx

Edited March 26, 2013 by thenmama

[philamom]

When my dd 9 old was younger, before we knew about PANDAS, she was placed on singulair, zyrtec, exc, for chronic sinus infections. She had no signs of allergies in between infections, but figured it played a role in the chronic infections. She reacted with neuro-psych symtoms every time. The doctors kept telling me it wasn't a normal side effect from the medicine (??!). When I stopped the meds the reaction would go away in 2-5 days. Of course, this was all before PANDAS/Lyme reared it's ugly head.

 

Sorry Kim...hope you see better days soon!

[Ellen]

Sorry to hear about the recent difficulties you are having with your son. My PANDAS son has also been in a major exacerbation since the end of February, which is a story for a separate post when life begins to settle down. My younger son, who has only mild PANDAS tendencies but serious problems with allergies, especially right now with the high pollen counts, has been on singulair in the past without any behavioral issues. However, even though he has recently develop asthma and has to use an inhaler now, I have decided against putting him back on singulair. Our integrative DAN doctor, who treats my older son's PANDAS and my younger son's allergies, has had a few patients who have developed psychotic behavior while on singulair. She said there are others who do okay on it. Last summer she prescribed the granule form of singulair for my younger son, which she likes better than the tablet because there is no aspertame in it. However, I have been afraid to use even this form of it because of all that I have heard about singulair and the effects it can have on behavior.

Both of my kids are currently on zyrtec, Nasonex and supplements for the allergies. For my younger son, it is still not enough, but I am doing all I can to find safer and effective alternatives to singulair. I don't think the benefits are worth the risks.

 

Ellen

 

My ds14 is now 3 weeks post IVIG #2 (12 weeks post IVIG #1).

 

He had severe onset depression at the end of February. We recently saw an LLMD, who recommended we stop singular (which was started at the end of January for allergies), as singulair has been linked to depression and suicidality in a few cases. If there is a rare side effect to a medication, my son will likely experience that side effect, so I stopped the singulair 5 days ago.

 

Two days after stopping the singulair he was showing a return of interest in outdoor activities, and three days after stopping singulair he had a pleasant day and was affectionate with his family for the first time in months.

 

Four days after stopping singulair (yesterday) he said "Mom, please don't ever put me back on singulair again - I feel so much better off of it and I want to do more things now and I think I did better on my test in school today".

 

I was thrilled and hopeful (always a mistake).

 

Today he told me that his OCD is "back" - though he can't describe exactly how (or he won't tell me how - he generally keeps his OCD thoughts private). He also told me he has been having restless leg syndrome at night.

 

Today he asked (begged/ insisted) to have singulair again (ugh!). I looked up singulair withdrawal and saw that some people do experience withdrawal, so I gave him one tablet, thinking I will try to do every-other day for about a week, then taper down to every third day, etc.

 

I am wondering if anyone has had neurpsych symptoms with singulair and if anyone has gone off "cold turkey" or if you had to be weaned off.

 

Thanks!

[thereishope]

Singulair is one the allergy med I have heard warnings about on this forum. Even if the singulair was having negative reactions to him, it still was probably helping his allergies and in turn (because his allergies were calming down)helping some of his PANDAS symptoms. Allergies themself can worsen PANDAS symptoms. What allergy meds did you switch too? For us, Claritin worked at first but on day 10 got hyper and increase in OCD. For my child, Benadryl or D-Hist jr worked. Each child acts different to allergy meds, but it is important to find one that works in all ways since we need to keep allergies under control.

 

My ds14 is now 3 weeks post IVIG #2 (12 weeks post IVIG #1).

 

He had severe onset depression at the end of February. We recently saw an LLMD, who recommended we stop singular (which was started at the end of January for allergies), as singulair has been linked to depression and suicidality in a few cases. If there is a rare side effect to a medication, my son will likely experience that side effect, so I stopped the singulair 5 days ago.

 

Two days after stopping the singulair he was showing a return of interest in outdoor activities, and three days after stopping singulair he had a pleasant day and was affectionate with his family for the first time in months.

 

Four days after stopping singulair (yesterday) he said "Mom, please don't ever put me back on singulair again - I feel so much better off of it and I want to do more things now and I think I did better on my test in school today".

 

I was thrilled and hopeful (always a mistake).

 

Today he told me that his OCD is "back" - though he can't describe exactly how (or he won't tell me how - he generally keeps his OCD thoughts private). He also told me he has been having restless leg syndrome at night.

 

Today he asked (begged/ insisted) to have singulair again (ugh!). I looked up singulair withdrawal and saw that some people do experience withdrawal, so I gave him one tablet, thinking I will try to do every-other day for about a week, then taper down to every third day, etc.

 

I am wondering if anyone has had neurpsych symptoms with singulair and if anyone has gone off "cold turkey" or if you had to be weaned off.

 

Thanks!

Edited May 11, 2011 by Vickie

[bws]

My son was on it and I never saw neurpsych symptoms although my doctor did warn me about them.

[kimballot]

Thanks so much for all the replies. We had a bad day yesterday - the worst one in a while and I am wondering if it is related to me giving singulair the day before or if it is related to NOT giving singulair for 5 days - which may have resulted in a return of sinus inflammation and PANDAS OCD. He also started having some small facial tics yesterday and I've not seen those since the first IVIG in February. Hard to know for sure.

 

We were able to get an appointment with a local psychiatrist today as he had a cancellation. I will see what he thinks about this.

 

 

When I stopped the singulair I did change him back to zyrtec and I've been giving 470mg quercetin and 1000mg vitamin C. Does anyone know if that is a good dose of quercetin and vitamin C for an adult-sized teen? So far, I've seen some increase in nosebleeds and a little bit of sneezing since stopping the singuair, but no other outward sinus symptoms. I wish there was a machine to check sinuses that had no radiation - I would purchase one and keep it in my home to check for inflammation on a daily basis!!

 

I also want to tell you - you guys are the BEST!! (have I said that before??). It still amazes me that I can post my problems and get lots of responses that actually make SENSE. Thank you for sharing your experiences.

 

Thenmama - I had not seen the site that you posted prior to yesterday. Wow! The side effects alone for singulair look like PANDAS!

[thereishope]

I don't know the dosages of quercetin. What I can provide you is a link to the ingredients on Natural D-Hist. Go to the supplement fact box.

http://www.orthomolecularproducts.com/ProductDetails.aspx?id=e3dd50ed-7f02-4d19-9e2a-907d09d57923

 

Here are the directions so you can multiply and figure out the what the entire daily dose comes out to be...

Suggested Use: As a dietary supplement: Initial dose of 2 capsules 3 times daily for 7-10 days. Acute symptoms take 2-3 capsules as needed. For maintenance, take 1 or more capsules per day or as recommended by your health care professional.

Edited May 12, 2011 by Vickie

[philamom]

I don't know the dosages of quercetin. What I can provide you is a link to the ingredients on Natural D-Hist. Go to the supplement fact box.

http://www.orthomolecularproducts.com/ProductDetails.aspx?id=e3dd50ed-7f02-4d19-9e2a-907d09d57923

 

Here are the directions so you can multiply and figure out the what the entire daily dose comes out to be...

Suggested Use: As a dietary supplement: Initial dose of 2 capsules 3 times daily for 7-10 days. Acute symptoms take 2-3 capsules as needed. For maintenance, take 1 or more capsules per day or as recommended by your health care professional.

Vickie- do you give your son the D-Hist Jr. daily? thx

[thereishope]

yes. At the signs of seasonal allergies, I give him once in the morning, once at night. The ingredients are at different levels in the jr one.On the Jr bottle, it says to give 1-2 chewables twice a day or as directed by your doctor.I can get away with only one in the morning, one at night.

 

http://www.orthomolecularproducts.com/ProductDetails.aspx?id=7fe03e2f-d0c6-4cb5-aa5e-a5e8a2f8a0c5

Edited May 12, 2011 by Vickie

[philamom]

yes. At the signs of seasonal allergies, I give him once in the morning, once at night. The ingredients are at different levels in the jr one.On the Jr bottle, it says to give 1-2 chewables twice a day or as directed by your doctor.I can get away with only one in the morning, one at night.

 

http://www.orthomolecularproducts.com/ProductDetails.aspx?id=7fe03e2f-d0c6-4cb5-aa5e-a5e8a2f8a0c5

How about for a 10 yr old? Jr. or adult capsules?

[thereishope]

The biggest thing my 10 year old will swallow is a Pearl probiotic so he takes the chewables too. His allergies aren't bad this year and he gets away with one tablet in the morning only, none at night.Last year they were worse and I gave one in the morning, one at night, but he probably needed 2 in the morning. Allergies are usually worse in the morning. I,admit, they're more expensive than Claritin and I try to give the minimum to make them go farther. My 10 year old is tall and skinny. He probably only weighs 80 something pounds. I was able to find them at an independent pharnacy by me that is a compounding pharmacy too so it's worth calling around to try to save on shipping and maybe even get a discount.