peglem Posted August 14, 2011 Report Share Posted August 14, 2011 (edited) I don't think my daughter has had histamine levels checked, but I started reading stuff yesterday about histamine deficiency and, well...I think it may be a player for some of our kids- both deficiency and excessive histamine, as it has a regulatory role in the CNS and in immune function (and digestion and motor function as well). Here are some links to stuff I found interesting: http://www.jimmunol.org/content/176/1/17.full http://en.wikipedia.org/wiki/Histamine_H3_receptor http://www.vivo.colostate.edu/hbooks/pathphys/endocrine/otherendo/histamine.html http://www.diagnose-me.com/cond/C376825.html http://www.ehow.com/facts_6466027_histamine-diseases.html http://biologyofkundalini.com/article.php?story=Histamine One of the things that got me started looking at this is that my daughter is IgE deficient (and thus may have problems accessing histamine stored in mast cells) and seems to be having a negative reaction to zantac and prilosec, both of which are H2 blockers. She also has a rage reaction to benedril (diphenhydramine). Zantac and prilosec both cause her to have problems sleeping. Edited August 14, 2011 by peglem Link to comment Share on other sites More sharing options...
michiganpandas Posted August 14, 2011 Report Share Posted August 14, 2011 not sure how it plays a role....but, i did just find out my daughter is low for IgM Link to comment Share on other sites More sharing options...
JAG10 Posted August 14, 2011 Report Share Posted August 14, 2011 Peg, What test is run to determine histamine function/dysfunction??? Lots of folks here have commented on histamine issues both hyper and hypo histaminic responses. I remember EAmom referring to histamine cascading and we have that too, me and my girls. We have the hyper histaminic response to insect bites, which I've referred to ad nauseum. Nancy mentioned Dr T looking into histamine and I'd love to hear an update on what he has discovered. Link to comment Share on other sites More sharing options...
peglem Posted August 14, 2011 Author Report Share Posted August 14, 2011 Peg, What test is run to determine histamine function/dysfunction??? Lots of folks here have commented on histamine issues both hyper and hypo histaminic responses. I remember EAmom referring to histamine cascading and we have that too, me and my girls. We have the hyper histaminic response to insect bites, which I've referred to ad nauseum. Nancy mentioned Dr T looking into histamine and I'd love to hear an update on what he has discovered. I don't know what tests. I'll ask the pediatrician about it when we see him on the 22nd. It sounds like there are tests for serum histamine levels. But, it also looks like high brain histamine reduces peripheral histamine levels (neg. feedback loop?). I don't know- just started looking into this yesterday, after a couple of really bad days of raging and FU'd sleep when I gave Allie some zantac prescribed by her physician. Link to comment Share on other sites More sharing options...
dut Posted August 14, 2011 Report Share Posted August 14, 2011 Hi - We had something happen that got me wondering about histamine too Dd8 hasn't been symptom free for about 15 months except for 2 glorious, totally symptom free weeks that we couldn't seem to correlate to anything . The only possible initiating event that I could think of was an acute allergic food reaction followed by an adult dose of benedryl. The last time she had an acute food allergic reaction it caused a flare but wondered if either this time the benedryl kicked off the improvement or if the immune provocation caused by the allergic reaction somehow kicked her system into touch and maybe fought off some low level simmering infection.. who knows.. Anyways, it was enough for our PANDAS savvy ped to suggest a 2 week trial on benedryl. We haven't started yet as ds3 has strep and much increased aggression.. joy.. and we're all on abx and I don't want to rock my dd's boat with strep in the house.. but will post when we try the trial of benedryl with any results we see..... We also had our longest period of symptom-free despite quite a few illnesses in dd about 2 years ago after she had serum sickness and had to be on piggy-backed double-dosing of both benedryl and zyrtec for 3 weeks 'cos of the serum sickness. We had 7 really good months. Not one PANDAS symptom despite colds, fevers and stomach issues and my dd can react to all sorts of infection not just strep.. so maybe that was the anti-histamine too..... Link to comment Share on other sites More sharing options...
peglem Posted August 14, 2011 Author Report Share Posted August 14, 2011 Here is a really great article on histamine in the CNS, which is where the H3 receptors are primarily found. http://molinterv.aspetjournals.org/content/6/2/77.full Link to comment Share on other sites More sharing options...
beeskneesmommy Posted August 14, 2011 Report Share Posted August 14, 2011 My son has awful allergies (to what)? His blood and scratch allergy tests contradict each other and he didn't react at all for the histamine control on the scratch test. This left the allergist scratching his head! He has awful reactions to typical insect bites - major unusual swelling and knots (always has) and he cannot take ANTHING for it. All OTC allergy meds including Benedryl push him to a PANDAS flare-up. I would love to have my questions answered. We are seeing Dr. B but got so busy with other stuff on our first meeting that we barely touched on this. I have a phone consult with him on the 22nd and I will try to address this if there is enough time and it fits the already intense agenda. -Kath Link to comment Share on other sites More sharing options...
JAG10 Posted August 14, 2011 Report Share Posted August 14, 2011 Kathy- please let us know what he says. I'm going to have dh ask him similar histamine related questions when they go 8/31. Those articles are very interesting, but I found myself going yeah, yeah, Yes! Now what? The last one posted by Peg on the H3 and CNS is from 2006....where have they taken this since? Link to comment Share on other sites More sharing options...
peglem Posted August 14, 2011 Author Report Share Posted August 14, 2011 Kathy- please let us know what he says. I'm going to have dh ask him similar histamine related questions when they go 8/31. Those articles are very interesting, but I found myself going yeah, yeah, Yes! Now what? The last one posted by Peg on the H3 and CNS is from 2006....where have they taken this since? drug development: http://www.drugdiscoverytoday.com/view/9091/evotec-wins-h3-receptor-antagonist-programme-grant/ Link to comment Share on other sites More sharing options...
Topaz1968 Posted August 14, 2011 Report Share Posted August 14, 2011 I am wondering if what my DS went through last summer has anything to do with this. He just all of a sudden started getting hives out of the blue. Then, every time he would exercise, his eyes would swell and his hives would come on full force. The school nurse almost gave him an epi pen once time. He was on Benadryl every day and went through all the scratch tests with Dr. B as well, but he said it was not related to the Pandas. Then, we discovered Zyrtek and it was a miracle - he takes one every day, and hardly ever gets hives at all. He can run and he is fine. I am not sure if any of this is related and I am not sure if his sudden onset of Pandas symptoms is also related - it happened around the same time. Anyway, we are going to see Dr. B next month and hopefully we can get more answers. Link to comment Share on other sites More sharing options...
EAMom Posted March 13, 2012 Report Share Posted March 13, 2012 (edited) I know this is an old thread. Does anyone have any new info on the low brain histamine thing? My dd still takes a chlorphenaramine every day...or she gets itchy when she walks/runs . I have the same problem. It's a vibrational urticaria (excercise with out vibration like biking or using the elliptical are fine). Can she have low brain histamine and still have high histamine elsewhere? Edited March 13, 2012 by EAMom Link to comment Share on other sites More sharing options...
dut Posted March 13, 2012 Report Share Posted March 13, 2012 EAmom - rather than being high (or low) histamine you both may have, instead, abberant mast cells that degranulate at the wrong time..... Link to comment Share on other sites More sharing options...
peglem Posted March 13, 2012 Author Report Share Posted March 13, 2012 I know nothing about it all- just Allie's problem may be more that she is IgE deficient, so does not release enough histamine from mast cells. It just seems like nobody knows anything about this. Link to comment Share on other sites More sharing options...
EAMom Posted March 13, 2012 Report Share Posted March 13, 2012 EAmom - rather than being high (or low) histamine you both may have, instead, abberant mast cells that degranulate at the wrong time..... maybe you are right. I found this on "Dermographism" http://en.wikipedia.org/wiki/Dermographism I added the bold. The symptoms are thought to be caused by mast cells in the surface of the skin releasing histamines without the presence of antigens, due to the presence of a weak membrane surrounding the mast cells. The histamines released cause the skin to swell in the affected areas. Both my dd's and I have dermographism, but only 1 dd has the problem with walking/running. Link to comment Share on other sites More sharing options...
butterflymom Posted March 14, 2012 Report Share Posted March 14, 2012 (edited) = Edited October 5, 2015 by tampicc Link to comment Share on other sites More sharing options...
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