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singulair for serotonin low new PANDAS kid? ?


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Hi,

I have a question for all of you. Recent new onset of PANDAS led us to labwork. In the labs, we found high eosinophils, high IgE and high histamine. (goes back to the other discussion of methylation/histamine levels/unable to clear viruses but I digress). So in consult with DAN yesterday, he suggested Singulair.

We have pretty much shunned medications as my son is very sensitive. Zyrtec made him irritable. He can't even take quercitin without become irritable. But I was willing to consider the Singulair. I researched briefly on line and found all these negative reports from parents. Then I found this:

 

Singulair impacts serotonin chemistry, so if a child has low serotonin to begin with, then it will affect sleep and mood. Singulair works on mast cells which have both histamine and serotonin; as a mast cell inhibitor, Singulair depletes serotonin, so it would make a child very irritable, have difficulty sleeping, and be very negative. That's why so many people have problems with it.

 

My kid takes 5htp for great benefit ....I recently bumped him up to 100 mg a day split when the PANDAS crisis surfaced. He is also on St. John's wort. The last thing I want to do is give him something else that will further deplete serotonin.....he already doesn't have enough.

 

I am writing to ask: Have any of you PANDAS families found an allergy fighter that worked in your child who is also most likely serotonin depleted. It could be mast cell inhibitor, leukotriene receptor antagonist, or histamine blocker. Need to bring down histamines as they do seem to also be causal in high anxiety/even OCD. I know the real answer is methylation. I am still trying to figure out how to make that happen as he is so very sensitive to even supplements.

 

Kim

Edited by Kimflow
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At the moment we are using Nasonex (nasal spray that it a steroid) and Patanol (anti-histamine eyedrops) to treat the symptoms of the allergies, but not the allergies themselves. It's proven effective so far this year in reducing DS's allergy misery, but we'll see what happens as grass pollen starts to ramp up. Nasonex was prescribed by Dr. B, Patanol by our pediatrician.

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Hi - just a thought but if ur worrried about using singulair you could discuss using cromolyn which is a mast cell stabiliser with ur DAN dr.... it has been overtaken by drugs like singulair, in part, cos of dosing and compliance (cromolyn has to be taken 4 times a day) but it has a excellent safety record and possibly not some of the sensitivity issues for PANDAS kids such as singulair.....

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on that note, let me ask if anyone has ever used Ketotifen. I have asked for it several times but DAN just ignores me.

 

Ketotifen is a second-generation H1-antihistamine and mast cell stabilizer.

 

I do not know if it can affect serotonin. I will have to research. Anyhow, several Moms have reported that this does wonders. I do think it is hard to get or is off label use which might be why my DAN keeps ignoring my request to try it. Surely though, it might work better than Singulair that has so much bad press with kids with autism and we know that it is a serotonin depletor.

 

There is a DAN who has a blog and in his blog, he reports that mothers are using Ketotifen eye drops only using them intranasally. I am still not totally comfortable with trying this yet. Oral ketotifen is a challenge to get but it does exist OTC as eye drops under different brand names.

 

Hmmmm. will watch for more replies as I feel like if I addressed the high histamine, it would further help my son. In addition to whatever we get going for PANDAS.

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Hi,

Regarding the cromyln.....he did mention that as well but decided on the singulair. He said that the cromyln is an OTC nose spray. Is that how you are familiar with its use?

 

Nasal Spray will be a challenge for us as I remember the early days of trying to do Oxytocin Spray which did nothing by the way. he was very little though.

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yes, that is the problem we have here.....methionine, quercitin, TMG.....all too much for his system. Often immediate irritability. I have always supposed that it had to do wtih turning one part of the detox wheel faster than the other part of the detox wheel. phase I and phase II detox.

 

I liked your strategy of doing half dose per weight.......I did consider that I could just give a lesser amount of singulair. I asked for the sachet and I will put in capsules. He said the sachet is all drug, no additives and that is what we go for here. Of course, I have to check to see if that is true with the pharmacist. Maybe I would be able to keep the serotonin from bottoming out. I do keep coming back to the ketotifen though. hmmm......

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Singulair was one of the first meds that I noticed really impacted my son. Way back in the day when he was 4-6 dealing with really bad sinus/ear infections, etc. (prior to adenoids being removed) we were prescribed singulair (both of us, I have similar issues) and it threw him into an irritable tirade of temper tantrums. Looking back...I wish I knew how signficant all of these things were. I felt it made me pretty crazy. Irritable and anxious - just not myself and stopped taking it myself before I made it through one bottle.

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fighting Mom.....yes, this is why my husband is against any antihistamines for my son because he too feels horrible on antihistamines and they are sort of walking immune dysfunction twins.

 

Tampiic.....thanks for those links. Off to check them out.

 

Kim

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Hi again - no we have used the oral solution for cromolyn. It is odorless, colorless and tasteless so easy to get into kids but has to be 4 x a day. It has to be rxd and is super expensive (luckily our ins paid) it was 800 US dollars for 1 month's worth for a 40lb child.

 

Perhaps another try at nsal spray if ur child will tolerate it being older.....

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Our DAN prescribes singulair granules packets. Singulair granules has no fillers, but if you take the chewables they have aspartame. I used the packets on my kids and I didn't see any side effects one way or the other but stopped using them anyway because of what I read on this forum.

 

The local ped allergist recommends allegra, I tried it out and saw no negatives. I also use Benadryl sometimes for allergic reactions, no choice, I do not see that Benadryl causes any pandas symptoms. As a matter of fact it seems to bring a little relief to anxiety.

 

I did see crazy hyperactivity with claritin and agitation with zyrtec, but it could have been pandas symptoms that were not under control at the time, it was quite some time ago.

 

Histamine issues are confusing to me. Allergy season is rough. I also use quercetin on my kids, I thought it was supposed to take down inflammation systemically and is a pre-cursor to glutiathione.

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If you want to go after histamine but your DS responds poorly to quercitin (works on the mast cells) or OTC allergy meds like Zyrtec, have you thought about going after histamine reduction in the gut? We've had a lot of success with Pepcid, an H2 blocker.

 

My DS also takes Zyrtec and Flonase to no ill results. He is, however, still taking a low-dose SSRI, so perhaps that's helping pick up the slack? :blink:

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