Megs_Mom Posted August 24, 2009 Report Posted August 24, 2009 Hi - Meg's Endoscope test came back & she does not show any signs of damaged villi - so not Celiac. She does however, have numerous Peptic Ulcers. So she actually has a stomach ache & reflux - it's not just OCD/anxiety. They gave her Previcid. Any thoughts on this one? I would swear that she does not have a stomach ache unless she is in a PANDAS episode. Do they go together? Susan (Meg's mom)
Megs_Mom Posted August 24, 2009 Author Report Posted August 24, 2009 I googled this too - and found this article http://pediatrics.jwatch.org/cgi/content/citation/2004/712/9, but have to pay $99 to get it . Anyone have this or access? Thanks - Susan (Meg's Mom)
kim Posted August 24, 2009 Report Posted August 24, 2009 Susan, I think there is a connection, but it seems sort of like the chicken and egg thing (which came first). I'm leary of long term use of prevacid. Occasional use might be ok. I'm wondering if H. pylori was discussed at all? Cheri (Chemar) has good info on gut supplements. Maybe she'll be along with some info. Here are a few threads you might want to read through. A few people have mentioned movement disorders related to use of prevacid in the past, but could have been problems relating to the underlying condition too. http://www.latitudes.org/forums/index.php?...amp;hl=prevacid http://www.latitudes.org/forums/index.php?...amp;hl=prevacid http://www.diagnose-me.com/treat/T157242.html Mastic Gum http://www.naturalnews.com/DrugWatch_Prevacid.html Prevacid side effects, nutrient depletions, herbal interactions and health notes:
Megs_Mom Posted August 24, 2009 Author Report Posted August 24, 2009 Thank you! I'll read through all this tonight. I tried to search on the site, but could not find these connections. I really showed up quite unprepared for this appt (not my usual style) as Peptic Ulcers had not been mentioned. I was totally prepared for Celaic - but there you go - best laid plans and all that. He did not mention H pylori, but after I got home, I read about it. I guess I'll have to go back & ask. He did not prescribe antibiotics, which seems odd when I read about it on line, just the prevacid. She is already on mild antibiotics for PANDAS. He gave it to us for 2 months. I am leary of all meds, but have started this one, as we really need to get rid of the stomach pain, so that we can get rid of the rest of the OCD (hard to do therapy about throwing up, when your stomach hurts every time you do the exposure!) I'll hope for Cheri to pop on-line too! Thanks again - Susan (Meg's mom) Susan, I think there is a connection, but it seems sort of like the chicken and egg thing (which came first). I'm leary of long term use of prevacid. Occasional use might be ok. I'm wondering if H. pylori was discussed at all? Cheri (Chemar) has good info on gut supplements. Maybe she'll be along with some info. Here are a few threads you might want to read through. A few people have mentioned movement disorders related to use of prevacid in the past, but could have been problems relating to the underlying condition too. http://www.latitudes.org/forums/index.php?...amp;hl=prevacid http://www.latitudes.org/forums/index.php?...amp;hl=prevacid http://www.diagnose-me.com/treat/T157242.html Mastic Gum http://www.naturalnews.com/DrugWatch_Prevacid.html Prevacid side effects, nutrient depletions, herbal interactions and health notes:
kim Posted August 24, 2009 Report Posted August 24, 2009 Susan, You're welcome! Pop over to the TS forum and use the seach feature. If you type in Prevacid, some of Cheri's info is there on supplements.
kim Posted August 25, 2009 Report Posted August 25, 2009 I would swear that she does not have a stomach ache unless she is in a PANDAS episode. Do they go together? Susan, Maybe you're right about that. If we can apply anything in this study, that's looking at stomach epithelium cells from a rabbit, it seems that elevated CamKll could result in elevated stomach acid production. http://www.pubmedcentral.nih.gov/articlere...d=1573865#bib47 Our results suggest that PKC-α and CaMKII are closely functionally linked in a cholinergically induced signalling pathway in rabbit parietal cells. We assume that in cholinergically stimulated parietal cells PKC-α transinhibits CaMKII activity, resulting in an attenuation of acid secretion. So they think PKC-α "transinhibits" CaMKII and attenuates acid secretion. An excerpt from the wiki page on protein kinase C (PKC) says it has multiple functions and http://en.wikipedia.org/wiki/Protein_kinase_C "Recurring themes are that PKC is involved in receptor desensitization, in modulating membrane structure events, in regulating transcription, in mediating immune responses, in regulating cell growth, and in learning and memory. These functions are achieved by PKC mediated phosphorylation of other proteins. However, the substrate proteins present for phosphorylation vary, since protein expression is different between different kinds of cells. Thus, effects of PKC are cell-type specific" wondering what other parts of the body are affected by elevated CaMKII? It appears it can be involved in heart rhythm abnormalities too. Where might PKC fit in? Do you ever feel like your living in a jigsaw puzzle and everytime a picture starts to emerge, someone messes up all of the pieces http://en.wikipedia.org/wiki/Parietal_cell Parietal cells, or oxyntic cells, are the stomach epithelium cells that secrete gastric acid and intrinsic factor. Parietal cells produce gastric acid (hydrochloric acid) in response to histamine (via H2 receptors), acetylcholine (M3 receptors) and gastrin (CCK2 receptors). The histamine receptors act by increasing intracellular cAMP, whereas the muscarinic and gastrin receptors increase intracellular Ca2+ levels. Both cAMP and Ca2+ act via protein kinases to increase the transport of acid into the stomach. http://www.pubmedcentral.nih.gov/articlere...i?artid=1573865 CaMKII appears to have an obligatory role in acid secretion because inhibition of CaMKII activity blocks gastric acid secretion (Tsunoda et al., 1992; Fährmann et al., 2002a). We recently showed that CaMKII is activated and translocated to the secretory apical membrane during carbachol-induced acid release (Fährmann et al., 2002a).
Megs_Mom Posted August 25, 2009 Author Report Posted August 25, 2009 Wow, ok I totally did not expect a response on that hypothetical question, other than maybe "yes, my daughter's stomach hurts too". I am completely fascinated! We hope to get Cunningham results back this week (which is giving me a stomach ache!), so this will now be doubly interesting. I speak with so many suspected PANDAS moms on the OCParenting website, and we all feel like we have the same symptoms "Severe out of the blue OCD that focuses on throwing up, seperation anxiety & urinary need" - since we found the ulcers, I am really wondering if when PANDAS causes the OCD, at the same time these kids really are feeling like throwing up all the time, and that's why they start to attach a fear to all kinds of events? An illogical illness that attaches to a new feeling in their body. Kind of like having a panic attack, and then fearing where ever you were when it started. Now they fear all kinds of foods/places/events during which they feel nausea, stomach pain, or reflux? I have always wondered why our kids were all hearing our kids say nearly the exact same thing. For so long, we were telling her that the stomach pain was due to anxiety - now she is so relieved to know that we recognize her stomach pain as real and often fleeting - and that she can calmly acknowledge it without freaking out about it. Thanks, I love this site - especially the science based evidence that everyone is putting together. I am grateful - and I feel like I need to go back to school to be sure I am understanding half of this correctly. What I think my take away is here, is that when a PANDAS episode starts, then I need to immediately dial up stomach remedies at the same time. I'll put that on my plan! Susan (Meg's mom) I would swear that she does not have a stomach ache unless she is in a PANDAS episode. Do they go together?Susan, Maybe you're right about that. If we can apply anything in this study, that's looking at stomach epithelium cells from a rabbit, it seems that elevated CamKll could result in elevated stomach acid production. http://www.pubmedcentral.nih.gov/articlere...d=1573865#bib47 Our results suggest that PKC-α and CaMKII are closely functionally linked in a cholinergically induced signalling pathway in rabbit parietal cells. We assume that in cholinergically stimulated parietal cells PKC-α transinhibits CaMKII activity, resulting in an attenuation of acid secretion. So they think PKC-α "transinhibits" CaMKII and attenuates acid secretion. An excerpt from the wiki page on protein kinase C (PKC) says it has multiple functions and http://en.wikipedia.org/wiki/Protein_kinase_C "Recurring themes are that PKC is involved in receptor desensitization, in modulating membrane structure events, in regulating transcription, in mediating immune responses, in regulating cell growth, and in learning and memory. These functions are achieved by PKC mediated phosphorylation of other proteins. However, the substrate proteins present for phosphorylation vary, since protein expression is different between different kinds of cells. Thus, effects of PKC are cell-type specific" wondering what other parts of the body are affected by elevated CaMKII? It appears it can be involved in heart rhythm abnormalities too. Where might PKC fit in? Do you ever feel like your living in a jigsaw puzzle and everytime a picture starts to emerge, someone messes up all of the pieces http://en.wikipedia.org/wiki/Parietal_cell Parietal cells, or oxyntic cells, are the stomach epithelium cells that secrete gastric acid and intrinsic factor. Parietal cells produce gastric acid (hydrochloric acid) in response to histamine (via H2 receptors), acetylcholine (M3 receptors) and gastrin (CCK2 receptors). The histamine receptors act by increasing intracellular cAMP, whereas the muscarinic and gastrin receptors increase intracellular Ca2+ levels. Both cAMP and Ca2+ act via protein kinases to increase the transport of acid into the stomach. http://www.pubmedcentral.nih.gov/articlere...i?artid=1573865 CaMKII appears to have an obligatory role in acid secretion because inhibition of CaMKII activity blocks gastric acid secretion (Tsunoda et al., 1992; Fährmann et al., 2002a). We recently showed that CaMKII is activated and translocated to the secretory apical membrane during carbachol-induced acid release (Fährmann et al., 2002a).
colleenrn Posted August 25, 2009 Report Posted August 25, 2009 Hi Susan, Did they detect H. pylori bacteria? If so, the treatment is antibiotics along with acid reducers. Here is what the Mayo clinic says for treatment: Because many ulcers stem from H. pylori bacteria, doctors use a two-pronged approach to peptic ulcer treatment: ■Kill the bacteria. ■Reduce the level of acid in your digestive system to relieve pain and encourage healing. Accomplishing these two goals requires the use of at least two, and sometimes three or four, of the following medications: ■Antibiotic medications. Doctors use combinations of antibiotics to treat H. pylori because one antibiotic alone isn't always sufficient to kill the organism. For the treatment to work, follow your doctor's instructions precisely. Antibiotics prescribed for treatment of H. pylori include amoxicillin (Amoxil), clarithromycin (Biaxin) and metronidazole (Flagyl). Combination drugs that include two antibiotics together with an acid suppressor or cytoprotective agent (Helidac, Prevpac) have been designed specifically for the treatment of H. pylori infection. You'll likely need to take antibiotics for two weeks, depending on their type and number. Other medications prescribed along with antibiotics generally are taken for a longer period. ■Acid blockers. ■Antacids. ■Cytoprotective agents. In some cases, your doctor may prescribe these medications that help protect the tissues that line your stomach and small intestine. They include the prescription medications sucralfate (Carafate) and misoprostol (Cytotec). Another nonprescription cytoprotective agent is bismuth subsalicylate (Pepto-Bismol). If H. pylori isn't identified in your system, then it's likely that your ulcer is due to NSAIDs — which you should stop using, if possible — or acid reflux, which can cause esophageal ulcers. In both cases, your doctor will try to reduce acid levels — through use of acid blockers, antacids or proton pump inhibitors — and may also have you use cytoprotective drugs. Colleen
Megs_Mom Posted August 25, 2009 Author Report Posted August 25, 2009 I feel very confused on this point, as he did not discuss H pylori with me (and I had not read about this yet). She does not take any nsaids, so it can't be that. He did not give me antibiotic, and Meg is only on mild Zith at this point. I am going to call and ask tomorrow. Hard to get him on the phone, but I will give it my all! Actually quite annoying that he did not mention - he had to know I would google! Hi Susan,Did they detect H. pylori bacteria? If so, the treatment is antibiotics along with acid reducers. Here is what the Mayo clinic says for treatment: Because many ulcers stem from H. pylori bacteria, doctors use a two-pronged approach to peptic ulcer treatment: ■Kill the bacteria. ■Reduce the level of acid in your digestive system to relieve pain and encourage healing. Accomplishing these two goals requires the use of at least two, and sometimes three or four, of the following medications: ■Antibiotic medications. Doctors use combinations of antibiotics to treat H. pylori because one antibiotic alone isn't always sufficient to kill the organism. For the treatment to work, follow your doctor's instructions precisely. Antibiotics prescribed for treatment of H. pylori include amoxicillin (Amoxil), clarithromycin (Biaxin) and metronidazole (Flagyl). Combination drugs that include two antibiotics together with an acid suppressor or cytoprotective agent (Helidac, Prevpac) have been designed specifically for the treatment of H. pylori infection. You'll likely need to take antibiotics for two weeks, depending on their type and number. Other medications prescribed along with antibiotics generally are taken for a longer period. ■Acid blockers. ■Antacids. ■Cytoprotective agents. In some cases, your doctor may prescribe these medications that help protect the tissues that line your stomach and small intestine. They include the prescription medications sucralfate (Carafate) and misoprostol (Cytotec). Another nonprescription cytoprotective agent is bismuth subsalicylate (Pepto-Bismol). If H. pylori isn't identified in your system, then it's likely that your ulcer is due to NSAIDs — which you should stop using, if possible — or acid reflux, which can cause esophageal ulcers. In both cases, your doctor will try to reduce acid levels — through use of acid blockers, antacids or proton pump inhibitors — and may also have you use cytoprotective drugs. Colleen
colleenrn Posted August 25, 2009 Report Posted August 25, 2009 Yep. Read all about it before you call him. It is the main cause of peptic ulcers, so he cannot dispute that since she is not on NSAIDS. Hopefully he was NOT thinking that antibiotics were not needed b/c she is on a low dose of Zith, b/c Zith would not be enough to erradicate it. Good luck! Colleen
kim Posted September 1, 2009 Report Posted September 1, 2009 Suan, I'm wondering if you ever got a response from your Dr. regarding H. pylori?
Megs_Mom Posted September 2, 2009 Author Report Posted September 2, 2009 No actually, we did not. He was on vacation, then out of the office..., then I got distracted for a few days by a visit to an Immunologist that went very well. Anyway, I called again today asking about this, as I also need these records for the Immunologist. Amazing the level of follow-up that is needed for things that should be so simple. I'll post an update as soon as I hear from him. Her stomach is 100% better, and has really helped her overall to feel more relaxed. When we forgot her med on Monday, it was clear that her stomach really hurt - and that she now knew what that feeling was - she was the one that realized the connection between not taking the Prevacid & her stomach. It was so amazing to watch her not panic about it! Suan, I'm wondering if you ever got a response from your Dr. regarding H. pylori?
Suzan Posted September 2, 2009 Report Posted September 2, 2009 Susan, I was thinking of you and Meg and the ulcers last night as dd's stomach was hurting (as usual) and her throat "felt hot inside" and I started wondering about heart burn which made me wonder about stomach acid.... LOL, knowing NOTHING about any of this, I thought I'd post.... I've just skimmed through all these great posts above and not absorbed much yet. But I'm wondering if dd is experiencing something similar. Susan
momofgirls Posted September 2, 2009 Report Posted September 2, 2009 Hi I am new to the forum. I don't believe my daughter has PANDAS but she has been ticcing for a year. She tested for multiple food allergies, was low on many nutrients like iron, amino acids and BVitamins. Digestive stool test through metametrix showed poor protein digestion and an H pylori infection. No yeast like a lot of the kids seem to have. Do any of you know if pylori is associated with tics? Our DAN dr did herbal remedies for the pylori then we saw a GI dr to recheck stool and for possible antibiotics. He ran a quest stool test for pylori and it was negative. She also has occassional tummy and throat pain. So I don't know if the herbs erradicated the pylori or if the quest test is not as sensitive as the metametrix test. Even after finishing the herbs there is no improvement in tics. DAN dr is to address toxins next as my daughter tested high for various organic solvents like styrene, xylene, and benzene. I don't know if I should let the pylori go or pursue endoscopy. The GI dr didn't seem to take it too seriously and didn't respect the metametrix test. Kim Susan, I was thinking of you and Meg and the ulcers last night as dd's stomach was hurting (as usual) and her throat "felt hot inside" and I started wondering about heart burn which made me wonder about stomach acid.... LOL, knowing NOTHING about any of this, I thought I'd post.... I've just skimmed through all these great posts above and not absorbed much yet. But I'm wondering if dd is experiencing something similar. Susan
Megs_Mom Posted September 2, 2009 Author Report Posted September 2, 2009 Hey - I am going to email you tonight about Immunologist that is working with us in Charlotte - Dr. O'Conner. So far, am loving her, she listened, asked smart questions, and actually wants to review all of our records! Anyway, we used Dr. Branner with Presby Pediatric Gastro - he was PANDAS knowledgeable, and overall very helpful. I've had trouble getting him for last few weeks, but then I've not been as nutty persistent as usual. I always chalked all the stomach and mouth taste complaints up to anxiety - but now I realize it was the opposite - the stomach upset was helping motivate the anxiety. I don't know if she is up to an Endoscope, but it was not nearly as bad as I feared - and told us a ton. I am amazed at how much less Megan cries or complains now. I dont' want her on Prevacid for long term, but as we are figuring out things, this has been a big help. I think something like 70% of the immune system starts or is contained in the digestive tract - so any help there we can get! Susan, I was thinking of you and Meg and the ulcers last night as dd's stomach was hurting (as usual) and her throat "felt hot inside" and I started wondering about heart burn which made me wonder about stomach acid.... LOL, knowing NOTHING about any of this, I thought I'd post.... I've just skimmed through all these great posts above and not absorbed much yet. But I'm wondering if dd is experiencing something similar. Susan
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now