ShannonOtown Posted February 18, 2010 Report Posted February 18, 2010 I had mentioned in recent topics that my son (12 years) is doing really well post cefdinir and augmentin. His only remaining symptom is his eye tics, which seem to increase when all his other symptoms waned. His IGEs where flagged high on his blood work, but his other IG subclasses came back strong and we've never considered IVIG. Our neurologist and immunologist believed his high IGE/allergies where the obvious trigger for his tics and our immunologist suggested allergy shots. We just started his allergy shots this past Friday. (I know everyones opinion on this... but I made a hard decision) In the mean time, I ordered an IGE food panel test because I was curious if food sensitivities where bothering his system. The allergist we are seeing said don't waste your money... but it was a mothers intuition. I just received the results yesterday. I'm relieved there are just a few to work with eliminating. Strong Reaction: *Red Dye #3 Moderate Reaction: *Tuna *Grapefruit *Sodium Propionate (Preservative) *Chlordane (Pesticide found under houses to treat termites, found in almost every farm/field around the world and possibly in tap water- banned 1986 for neurological problems, possible immune-def problems and the list goes on and on. Can be ingested, inhaled or absorbed through skin) Here's the twist. My son started a new throat/breathing tic Monday night and his night time frequent urination kicked in again. I immediately thought of the allergy shot on Friday. BUT looking back to that day, he drank 2 glasses of grapefruit juice and ate tuna fish on crackers for dinner. AND on top of that, his 2 Omega Chewies I was giving him every day contains TUNA! I always suspected he was sensitive to Red Dye. My intuition was right. So the question is, How does allergens and sensitivities play a role in Pandas? Is it just another problem with the immune system getting out of wack and the IGEs upsetting the balance? Could our kids be sensitive to viruses, bacteria, and allergens? Now about the Chlordane. I'm doing an air quality test to see if any traces are in our home. And calling the water dept for a report on the water quality in our city. And I guess we're going organic, since we can't be sure if it's looming on our produce. The pesticide was used heavily on orange groves. We live in Orlando and every home is built in old orange groves! This is scary stuff when you start reading the effects and how prevalent it is in our environment. No wonder our children are showing increases in neurological problems! I'll reply back with the results on the air quality test.... there's always something to dig deeper into.
Suzan Posted February 18, 2010 Report Posted February 18, 2010 Here's the twist. My son started a new throat/breathing tic Monday night and his night time frequent urination kicked in again. I immediately thought of the allergy shot on Friday. BUT looking back to that day, he drank 2 glasses of grapefruit juice and ate tuna fish on crackers for dinner. AND on top of that, his 2 Omega Chewies I was giving him every day contains TUNA! I always suspected he was sensitive to Red Dye. My intuition was right. So the question is, How does allergens and sensitivities play a role in Pandas? Is it just another problem with the immune system getting out of wack and the IGEs upsetting the balance? Could our kids be sensitive to viruses, bacteria, and allergens? Now about the Chlordane. I'm doing an air quality test to see if any traces are in our home. And calling the water dept for a report on the water quality in our city. And I guess we're going organic, since we can't be sure if it's looming on our produce. The pesticide was used heavily on orange groves. We live in Orlando and every home is built in old orange groves! This is scary stuff when you start reading the effects and how prevalent it is in our environment. No wonder our children are showing increases in neurological problems! I'll reply back with the results on the air quality test.... there's always something to dig deeper into. Oh, I want to get this done too but I have no money and I think our immunologist says don't bother too. I'll ask her next time we go. I want to do it for all family members actually, but I am confused, if you don't eat the foods often, it won't show a reaction will it? That is crazy about the tuna and grapefruit juice and tics. Wouldn't that be awesome if restricting that will help? So now you can keep those away and see if the allergy shots increase the tic or not. Good luck with the allergy shots. We are hanging in there with them. But dd is sick this week and can't get over her cold. I keep wondering if we are taxing her system too much with the shots. Susan
ShannonOtown Posted February 18, 2010 Author Report Posted February 18, 2010 HI Susan, I don't know how you get sensitivities to an allergen. My son never eats grapefruit or juice and just happened to have it that day because Grandma had it in the refrigerator. And lets hope his sensitivity to Chlordan is not from exposure. The whole point is to avoid those items showing sensitivity. Here's what the literature that came with the results say: Avoidance of reactors can reduce the load on the immune system. The goal of avoidance of reactive substance is to allow immune mechanisms to reset. This can restore tolerance, enhance repair and reduce the autoimmune and immune dysregulation load on the body's defense systems. IF this is true, then doing allergy shots is not allowing the "immune mechanisms to reset". I would think quite the opposite....but I'll stick to our plan. We had our 2nd shot yesterday and my son showed no reactions or symptoms. We'll stick with one shot per week, instead of the recommended 2 per week. Here's more information printed in the literature and results: Reactive items are an adverse load on your body's immune defenses. This means a reduced ability to respond to new or chronic infections. Reactive items also decrease immune activities needed to repair your body. This can provoke inflammation and self-attack ("autoimmunity"). Avoiding reactive items can break the cycle of impaired defense and repair, allowing your body to start the recovery and repair process. So if your body is defending allergens all time (ie. High IGE results), it's immune system is week and can't fight infections. Makes sense to me.
faith Posted February 18, 2010 Report Posted February 18, 2010 Shannon, Do you mean IGE or is this IGG, I think IGE are true allergies and the IGG would be sensitivities or intolerance, not traditional real allergic reaction? I don't have any advice on the allergy treatment or shots, but I think you are right on about considering allergies or sensitivities as an adjunctive way to manage immune overlaod. that is the exact premise of maintain a healthy immune system, and the body's reactions to foods or allergens can definitely weaken the immune system. How it all plays into PANDAS exactly, I don't know, but the 'symptoms' can get better simply because the immune system is not being further taxed or weakened by anything that puts stress on it such as allergens, etc. So I guess I'm saying that I'm glad you have made this connection, because sometimes I feel that the focus on PANDAS is sometimes fought with tunnel vision, and antiboitics are not the only thing that can help the body heal, there are other things that cause stress on the system and figuring out these triggers can help manage symptoms too. Faith
ShannonOtown Posted February 18, 2010 Author Report Posted February 18, 2010 Shannon, Do you mean IGE or is this IGG, I think IGE are true allergies and the IGG would be sensitivities or intolerance, not traditional real allergic reaction? I don't have any advice on the allergy treatment or shots, but I think you are right on about considering allergies or sensitivities as an adjunctive way to manage immune overlaod. that is the exact premise of maintain a healthy immune system, and the body's reactions to foods or allergens can definitely weaken the immune system. How it all plays into PANDAS exactly, I don't know, but the 'symptoms' can get better simply because the immune system is not being further taxed or weakened by anything that puts stress on it such as allergens, etc. So I guess I'm saying that I'm glad you have made this connection, because sometimes I feel that the focus on PANDAS is sometimes fought with tunnel vision, and antiboitics are not the only thing that can help the body heal, there are other things that cause stress on the system and figuring out these triggers can help manage symptoms too. Faith Faith,,, Well, when I ordered the test I research several labs and I thought I was ordering an IGE, but I think you are correct and it's IGG sesitivity test. Both are available for testing. My paperwork doesn't clarify exactly. That confuses me more since I'm trying to lower my sons IGE score? Would food 'sensitivities' increase IGE blood test results? Or is his IGE related only to his seasonal allergies that he's showing an allergic reaction to on his scratch skin test? I guess either way avoiding anything his sensitive to would help. I wish I had a doctor in the house...
swim Posted February 18, 2010 Report Posted February 18, 2010 Shannon, Go with your intuition! After thinking about this PANDAS stuff for almost 7 years and trying different things with our son, I was to the point where it just seemed that food was somehow having an effect on symptoms. Almost a year ago, we did food sensitivity testing on our PANDAS son (11 yr old). The test gave us IgE and IgG results. There were no food items causing IgE reactions, but he did test positive for high IgG reactions to wheat, gluten, dairy,pineapple and garlic. We went on a strick wheat, gluten, dairy, garlic free diet and saw immediate (within 4 or 5 days) improvements in concentration, focus, sleep, patience and eye tics. We were at a point where we were not really seeing any PANDAS symptoms and then he got strep, which brought back the tics. We did have improvement again so a few months ago we started trying wheat, gluten or dairy once a week to see what would happen. Things remained good and we even had some wheat/dairy 2 or 3 days a week. Then, at the beginning of 2010, we saw increased tics again due to a virus. We are again trying to reduce PANDAS symptoms ... My guess is that maybe it has something to do with the blood brain barrier issue. Maybe our kids have these IgG reactions and the IgG antibodies cross the blood brain barrier and cause further inflamation. Does anyone have any thoughts on this? With the IgG reactions it can take anywhere from a few hours to a few days to see the reactions from the allergen, so it can be difficult to pinpoint the agent without the blood tests. I was told most food sensitivities would be seen as IgG reactions and not IgE reactions. Most allergy tests just test IgE, so it is important to get the IgG test. Our test did not test red dye, but my intuition tells me we get big negative reactions from this so we always stay away from red dye. Thanks for your post because it reminded me we need to be get back to our eating plan as we try to get symptoms under control again. I know the tests are controversial to some people, but we really did see changes when we removed the sensitive items from his diet. I hope it helps your son!
dcmom Posted February 18, 2010 Report Posted February 18, 2010 I am very interested in the possibility that underlying food sensitivities play a role here. We are not there to be able to do testing yet- still trying to get the pandas in the family under control. I did read somewhere (someone more scientific on the site might be able to elaborate) with all of the research into MS, that food sensitivities might contribute to autoimmune disorders. The thought is that while the reaction is not acute enough to be a life threatening allergy, that it is still doing bad things in the body. I would imagine this could be an underlying contributor to a leaky gut and/or weakening in the blood brain barrier. I have to go back and see if I can find that info. I wouldn't be surprised AT ALL to find out that my youngest pandas dd has food sensitivities, as she has suffered with constipation forever. The only contra indication for me, is that her sister also has pandas- and she has had (prior to strep) amazing and healthy appetite and digestion. I know they are sisters, but they are night and day in that dept. So confusing....
ShannonOtown Posted February 18, 2010 Author Report Posted February 18, 2010 Thanks all... I'm really focusing on the Chlordane sensitivity result. Was my son exposed to this pesticide and now he is showing a reaction to it. We remodeled a home about 6 years ago and my son shortly after moving back in started having symptoms. I just got off the phone with a doctor that specializes in this toxin and researches symptoms associated with this pesticide. He said most homes in Florida were treated with this pesticide and my new windows might have sealed up our home and built up high levels of fumes. The research on this pesticide is very scary and there is enough evidence that proves it affects the immune system. We just moved this past year, so I'll never know if the air quality was bad. I just ordered a kit to test for Chlordane in our current home. It makes me wonder what is the true 'cause' of pandas? What is weakening our children's system? Vickie wrote a topic a while back that mentioned all the toxins we encounter everyday. The more you start reading about the chemicals in our water and food and air, the more you think of the effects.
momto2pandas Posted February 19, 2010 Report Posted February 19, 2010 We have noticed reactions to allergens as well, in one of my ds but not the other (he's only 3, so it may still be coming...). Re. mechanism, I am not an allergist, but my understanding is that allergens (and I would guess intolerances) increase the production of inflammatory cytokines. These (1) have their own effects on mood (2) increase permeability of the blood brain barrier, allowing the "bad stuff" to get into the brain, and (3) can amplify the production of auto-antigens resulting from molecular mimicry (e.g. strep-activitated autoimmunity). Thus, there are at least 3 ways that allergens might be expected to increase symptoms in PANDAS. I had mentioned in recent topics that my son (12 years) is doing really well post cefdinir and augmentin. His only remaining symptom is his eye tics, which seem to increase when all his other symptoms waned. His IGEs where flagged high on his blood work, but his other IG subclasses came back strong and we've never considered IVIG. Our neurologist and immunologist believed his high IGE/allergies where the obvious trigger for his tics and our immunologist suggested allergy shots. We just started his allergy shots this past Friday. (I know everyones opinion on this... but I made a hard decision) In the mean time, I ordered an IGE food panel test because I was curious if food sensitivities where bothering his system. The allergist we are seeing said don't waste your money... but it was a mothers intuition. I just received the results yesterday. I'm relieved there are just a few to work with eliminating. Strong Reaction: *Red Dye #3 Moderate Reaction: *Tuna *Grapefruit *Sodium Propionate (Preservative) *Chlordane (Pesticide found under houses to treat termites, found in almost every farm/field around the world and possibly in tap water- banned 1986 for neurological problems, possible immune-def problems and the list goes on and on. Can be ingested, inhaled or absorbed through skin) Here's the twist. My son started a new throat/breathing tic Monday night and his night time frequent urination kicked in again. I immediately thought of the allergy shot on Friday. BUT looking back to that day, he drank 2 glasses of grapefruit juice and ate tuna fish on crackers for dinner. AND on top of that, his 2 Omega Chewies I was giving him every day contains TUNA! I always suspected he was sensitive to Red Dye. My intuition was right. So the question is, How does allergens and sensitivities play a role in Pandas? Is it just another problem with the immune system getting out of wack and the IGEs upsetting the balance? Could our kids be sensitive to viruses, bacteria, and allergens? Now about the Chlordane. I'm doing an air quality test to see if any traces are in our home. And calling the water dept for a report on the water quality in our city. And I guess we're going organic, since we can't be sure if it's looming on our produce. The pesticide was used heavily on orange groves. We live in Orlando and every home is built in old orange groves! This is scary stuff when you start reading the effects and how prevalent it is in our environment. No wonder our children are showing increases in neurological problems! I'll reply back with the results on the air quality test.... there's always something to dig deeper into.
thereishope Posted February 19, 2010 Report Posted February 19, 2010 Allergies are a PANDAS trigger for my son. However, I have not had allergy testing done on him so I don't know exactly what he is allergic to. So far I have noticed cause and effect. Spring seasonal allergies and dust mites.The ped said we'll do actual testing if we notice more problems rising or they become worse. They do sell vegan Omega 3's. They do not derive from fish. I've seen them online. Also, some pesticides that are now illegal in the US are still part of our soil. So, even though they may have been banned for years, remnants of them are still there. You can do a quick search online to find the "dirty dozen" and see what is a must for organic. Things like apples, pears, berries, potatoes should always be organic. I've tried my best to overhaul my kids' diets. Granted, I can't buy everything organic (too pricey for everything) and they still get some things with food dye, but the amount that is put into their bodies is much lower now. We have also dramatically cut down high fructose corn syrup. That's in almost EVERYTHING. Also, nobody should ingest Splenda or aspartame. Some good documentaries/movies to see are "King Corn" and "Food Inc".
ShannonOtown Posted February 19, 2010 Author Report Posted February 19, 2010 Thanks for the good information. I'm looking into the vegan omegas. I've now entered the world of organic and reading every ingredient label... it's amazing what they put red dye into! My mother (we call her grandma tree- hugger) always says, "Man is slowing killing himself". I now understanding what she means.
thereishope Posted February 19, 2010 Report Posted February 19, 2010 I htink I'm starting to get a little obsessed with the whole chemical thing in food. If I slip and accidentally forget to read a label, birng home then realize food dye or hfcs is in it, I'd rather throw it out then give it to the kids. Or I give it to my husband:) I bought a loaf of Healthy Life bread w/o reading the label. I ALWAYS read bread labels. Of course the one time I don't, there HFCS in it! I try to buy Aunt Millie's or Arnold's. One of my other surprises was food dye in dry pancake mix! Why?
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