dut Posted February 13, 2012 Report Posted February 13, 2012 Hi - I was wondering if this issue tends to get seen in a constallation of other issues? Specifically, stomach/GI issues such as pain/cramping and with skins problems like itching, hives and angiodema. Sorry just another rabbit hole for me to get lost down DS gets very itchy for no reason and immuno says it's a mast cell issue similar to but not as bad as mastocytosis. Aberrant mast cell behavioiur can, amongst other things, cause symptoms similar to insterstitial cystitis. We're using cromolyn with some success for ds' itching. Thanks
sosudden Posted February 16, 2012 Report Posted February 16, 2012 In retrospect, yes, my daughter had all of those things. We believe she has had PANDAS for years :( Had that "falling off a cliff" exacerbation in Nov 2011. Looking back thought, she had hives, stomach "pain", heart racing, and urinary frequency. At the height of her peeing all of the time (2 years ago) I even questioned if she could have diabetes and check her blood sugar several times.
kimballot Posted February 16, 2012 Report Posted February 16, 2012 Hi - I was wondering if this issue tends to get seen in a constallation of other issues? Specifically, stomach/GI issues such as pain/cramping and with skins problems like itching, hives and angiodema. Sorry just another rabbit hole for me to get lost down DS gets very itchy for no reason and immuno says it's a mast cell issue similar to but not as bad as mastocytosis. Aberrant mast cell behavioiur can, amongst other things, cause symptoms similar to insterstitial cystitis. We're using cromolyn with some success for ds' itching. Thanks We've seen urinary frequency both with the stomach/GI stuff and without the stomach/GI stuff - so for us it seems to be independent of the GI issues. Also - cromolyn did help my son's GI issues considerably when he was very allergic.
JuliaFaith Posted February 16, 2012 Report Posted February 16, 2012 Hello - its' been a while. My son's dr. kept asking him if he urinated frequently which did not think he did. But she put him on Desmopressin (prescription) and on-line it says it is for urinary frequency. On my list of things to ask her about. Best healing wishes!
dut Posted February 16, 2012 Author Report Posted February 16, 2012 Juliafaith - it has been a while although I do stalk you from time to time on the Lyme forum You seem to be deep in treatment. How are things going?
philamom Posted February 16, 2012 Report Posted February 16, 2012 Hi. How can you tell if Mastocytosis is playing a role in GI symptoms (stomach cramping & pain, nausea, faintness)? Is there a way to test for too many mast cells?
dut Posted February 16, 2012 Author Report Posted February 16, 2012 (edited) Hi - I (think) that mastocytosis is severe and fairly rare. I imagine that if you have it, you now about it. However, there is a lesser disorder called Mast Cell Activation Disorder MCAD that is caused not by too many but rather by badly behaved or misshapen mast cells and that is harder to diagnose and I believe is dxd by clinical picture and response to therapy (nothing new to anyone here eh:)?) I just got thinking 'cos of DS' itching. My brother also has idiopathic angiodema which I suspect is this too. Badly behaved mast cells can be implicated in GI issues, interstitial cystitis, skin isues eg hives/blisters and they also can impact BBB permeability. I just wondered if for my ds and maybe others, there are autoantibodies circulating but for him the trigger that allows them access to the basal ganglia is mast cell degranulation and that this comes along with some physical symptoms associated with the gate-opener, so to speak, rather than the PANDAS itself. It might also acount for why some kids react almost allergically to their triggers. MCAD and mastocytosis reacts that way, with an immediate response. Mastocytosis triggers can be infectious, environmental, stress, foods, food additives, chemicals etc. We are using cromolyn for the itching. It's very difficult to get him to take it 4 times a day like we need to but when we really comply we seem to get a lessening of itching, less stomach issues and maybe better PANDAS symptoms. We haven't complied with the dosing well enough or long enough for me to really tell but it will be interesting to see where it goes... I imagine that a trial of a mast cell stabiliser such as cromolyn sodium would tell you whether this was an issue causing GI troubles. Beware it is uber expensive for the oral preparation - for DS $800 per month :-0 thankfully, our insurance will cover it. There is a nasal/bronchial pump version but that is used for localised asthma symptoms. There is another stabiliser that I have seen mentioned but know nothing about. It's called Ketotifen, I believe. Edited February 16, 2012 by dut
philamom Posted February 16, 2012 Report Posted February 16, 2012 (edited) Interesting dut - thank you. Isn't cromolyn OTC? edit- just googled and saw it's prescription. For some reason, I thought it was over the counter. Edited February 16, 2012 by philamom
dut Posted February 17, 2012 Author Report Posted February 17, 2012 No, you're right... the nasal spray sort is OTC. It's the oral solution that rx.
philamom Posted February 17, 2012 Report Posted February 17, 2012 dut- does your son have purple bags under his eyes? Also, what is a tryphase blood test. thx
dut Posted February 17, 2012 Author Report Posted February 17, 2012 Hi - Our ds will get the allergic looking shiners under his eyes but not bags. As for the test - is it the tryptase test? If so, it's a measure of mast cell activity. Here's an ok explanation... http://labtestsonline.org/understanding/analytes/tryptase/tab/test
philamom Posted February 17, 2012 Report Posted February 17, 2012 Hi - Our ds will get the allergic looking shiners under his eyes but not bags. As for the test - is it the tryptase test? If so, it's a measure of mast cell activity. Here's an ok explanation... http://labtestsonline.org/understanding/analytes/tryptase/tab/test That's it - thanks for the info. And, yes, it was the shiners I was thinking of. thx
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