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missionmom

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  1. This is a great article on nutrients for healing the brain. Be sure to click on page 2 and look at the list at the end. http://www.lef.org/magazine/mag2009/mar2009_Mark-Hyman-Healing-Broken-Brain-Syndrome_01.htm
  2. Been awhile since I've posted......we are at the university level with studies and progressing on a treatment. DS22 now had first grand mal seizure at 21 (can't remember the new name for them). Also had strong evidence of the "time out" style seizures at 12, as noticed by his teacher. All tests at 12 and 21 came back FINE! Last seizure was chalked up to a medication lowering his seizure threshhold. As it was explained to me, some people may be more prone to seizures (our kids!) but don't necessarily progress to having them until the addition of some lowering factor the seizure takes place. Sorry for saying this in a confusing way. They did not put him on meds, but took that particular med off his prescribed list.
  3. The only med that worked for me was immitrex if migraine had actually gotten a foothold. I had about 2 and 1/2 years of regular migraines that would actually come during the night and wake me from sleep. Took the immitrex and could usually go to work maybe 3 or 4 hours later, although I always felt "out of my body" and somewhat hungover. The effects would last more than 24 hours. Here is the good news. I began a regular regimen of Magnesium supplementation, balanced my hormones and watch anything with MSG. I no longer get migraines! Good luck - migraines are horrid.
  4. Was going to post this as a response to "Urgent Care Again", but seemed better to start a new thread, slightly different scenario. We are still new to the site, and I am here due to symptoms with my adult son (22) with PANDA like symptoms. I reversed my stance on the use of abx (won't go into the whole history again, its elsewhere). Since we've been on this path - only about 2 to 3 months of western doc intervention - my DS is about to start his 3rd course of zith, and is sicker than ever. Each infection seems to hit him harder and he is currently physically and mentally depleted. He (according to him - very busy guy in college and working who doesn't live with me) is still using alternatives to boost his immune system as we have for many years, but I am not sure how much. I feel like I am missing an important clue here, but can't quite grasp it. His escalation appt to a Stanford University neuro psych doc is April 25th. Are the 5 day courses of zith just too short? If his college health center strep test shows neg, although his ASO was very high recently, any suggestions on which test(s) to ask for that may identify which bug is plaguing him?
  5. Good luck on the IVig! Please give us an update when you know. For immune boosting....... As someone alluded to in a different forum, I agree immunity begins in the gut so we start there with great probiotics and enzymes with meals. I have low IGa, so the gut is my weakest point. I have had to cut out processed grains, many milk products and limit whole grains as they will cause me to be symptomatic in the absence of obvious illness. Working on ph level is great too. For ph and digestion (great for gerd even though it may seem counter intuitive to add what seems to be acid) beginning the day with warm water and 1/2 squeezed lemon in it is easy and works great. We use Kyolic Immunity Formula when challenged with any illness or when close proximity to illness (lots of great goodies in that), Olive Leaf Extract, Elderberry Extract for cold/flu season (this is so yummy I think any child would take it), Coconut oil 2 - 4 tbsp per day at first sign of any throat tingle. DS2 with cold sores also uses L-lysine. Am also considering pursuing a homeopathic route, after DS1 finishes the university neuro docs and most likely IVig. Would like to try this, but doesn't sounds like a difficult way to have maintenance! "What can we do to mitigate this immune system deficiency?" I asked the immunologist regarding our 3 diagnoses. "Nothing", he replied (other than IVig). NOT TRUE! So disheartening to have our mainstrean docs go to school for so long and study so little of nutrtition, supplements, food as medicine, etc. Sigh.
  6. Answer YES. Since we've begun investigating PANDAS for DS1 (old guy, now 22, we were not as on top of it as all of you for many reasons), found DS1, myself, and DS2 all have CVID. Know without even testing that DS3 has it also. Description fits like a glove. I have shared this info with my extended family, and it is helping them understand some odd ailments, or chronic malingering ailments as well. Good luck and don't believe that you cannot boost your immune system. There are many things my immediate family does that has kept us much healthier than my sibling's families.
  7. These are DS #1 results. DS #2's are even lower. I tested very high IGM and low IGA. DS #3 not yet tested. IGG 1 396 382-929 mg/dL IGG 2 153 241-700 mg/dL L IGG 3 32 22-178 mg/dL IGG 4 3.9 4-86 mg/dL L IGG, Serum 636 694-1618 mg/dL L IGM Result Date: 2/1/2012 Select Component Your Value Standard Range Flag Fasting Status IgM 31 48-312 mg/dL L
  8. You guys are 5 steps ahead of me! Pandas suspect (still not official dx) DS with immuno def's complement test just arrived last night. Performed by RDL Reference Lab (I understand there are different "normals" for diff. labs). Anti - Nuclear AB Positive ANA Titer 1:80 ANA Pattern Speckled All those are considered abnormal results and indicate a possible autoimmune disorder (SLE mostly) C3 Complement 104 (normal listed as 79 - 152) OK C4 Complement 13 (normal listed as 16 - 47) LOW All other tests showed OK. Handwritten note says "no conclusive evidence of autoimmune condition". I joined some of you in the rabbit hole last night attempting to research what these results mean and how they might influence the vaccination issue. I am simply baffled at this point. Feel like retreating back into my " alternative medicine" only, but I really want to be well-informed and consider all avenues. I don't want to make a decision from "baffled".
  9. My 3 DS exactly as well! Very interesting.
  10. Darn, found this thread without enough time to finish before getting ready for work! Always more info on the horizon. Thanks for keeping it coming, although I am again in a tailspin of indecision
  11. Thank you so much for your replies. Sometimes I can't see the forest through the trees and you are helpful.
  12. Where do you purchase this? On-line? Through a naturopath? Also, I'm a little reluctant on the mushroom component because of mold allergies. Do you contend with anything like that, or have any feedback about using a product with that component when mold allergies are present? Thanks! I purchase this at my local family owned nutrition store that I have used for many years. There is a very learned herbalist/nutritionist there who helps me (he has done much research into transdermal magnesium as an autism treatment). I also have my "bible" for nutritional healing called the "Prescription for Nutritional Healing, 5th ed". Very heavy book. Two DS have been tested for mold allergies and are good. We use other mushroom products, like Cordyceps, for vitality, sports endurance, etc with no negative side effects. Also, adhering to a homeopathic point of view - ingesting a potential allergen that you react to as an inhalent may actually reduce reaction. In your case, I would talk to an herbalist, naturopath, or even accupuncturist familiar with the Chinese Meds. On another note for the BBB - this is a very interesting article about glutamatic acid, glutamine, and GABA's effect on the brain and well-being. Brings it all together nicely I think. http://www.naturalstresscare.org/GABA.aspx
  13. Love this kind of info. My family uses Kyolic Immune Formula 103, with aged garlic extract, VC, astragulus and mushrooms. I am a pub ed teacher, with immuno deficiencies, and stay healthy (from the flu, etc) when all around me are falling.
  14. HI all - Looking for input. I am still just a couple of months new to this forum, but much has happened. Oldest DS in process of officially being dx'ed w/ PANDAS (has had for many years). He has been escalated to a well-known university med center neuro psych dept. They have already reviewed his case and want to take it on. We may still need to veer to a PANDAS doc but are following this route (with insurance) for the time being.. In the course of testing he was found to have CVID - common variable immuno deficiency - his is low IGM, IGg2 and IGg4. Since then, DS 19 and myself have been tested and both found to have CVID. DS19 presents exactly the same deficiencies as his brother but even lower values. He does not have symptoms of PANDAS, but does have other health challenges. I have low IGA and low IGg1. I have another DS17 who does have symptoms of PANDAS, but much more under control than oldest son. He has not yet been tested, but will soon and may follow what we decide to do. He is also leaving for college in the Fall and has been asked to receive the Menningitis vaccine. The immunologist also determined that all of us have very low or undetectable levels of iGg antibodies for STREP PNEUMONIAE. He wants to vaccinate all of us with the PNEUMOVAX, and 4-6 weeks after we receive this vaccine, recheck our titers to see if our bodies responded appropriately by making antibodies against STREP PNEUMONIAE. Probably a standard response, but I have developed a mistrust of vaccines and although the boys received all childhood vaccines of the times up to 12, I have opted out since. Q - does this seem like a good thing to do, particularly with the oldest? I also should mention that we do have a family member who developed Guillan-Barre after receiving a swine flu vaccine in the 80's - so I have seen first-hand the damage that can result from a vaccination reaction. Vaccinate for the tracking info, or not? I am torn. If we don't, any input on how to gather the same info from another direction?
  15. What a beautiful post. Congratulations and a very happy birthday to your DS!
  16. I have 2 questions for those on this forum: 1 -Were your children on a lot of abx early in life (pre-PANDAS presentation)? 2 - Has anyone used IV glutathione, or any form of glutathione for that matter, in treatment?
  17. Here's from the helpful doc list (I added some edits and comments): Dr. Brock Bernsten 3838 California St. San Francisco, CA Phone: (415) 666-1860 Our Pediatrician, was willing to listen and support whatever recommendations immunologist made including open IVIG order if required. Willing to do additional research but not very familiar with PANDAS Frederick A. Lloyd, M.D. Palo Alto Center 795 El Camino Real Palo Alto, California 94301 Phone: (650) 853-2992 Has several PANDAs patients, knows Margo Thienemann, listens well, responsive, will provide antibiotics in conjunction with other Dr. recommendation, open to IVIG prescription if recommended by another Dr. Sean McGhee Pediatric Immun. & Infectious Disease 300 Pasteur Dr CCSR 2115B Stanford, CA 94305-5164 (650) 498-4189 Margo Thienemann MD 900 Welch Road Suite 207 Palo Alto CA 94304 Phone mail: 650 324 3241 Dr. Thienemann (child psychiatrist) is one of the docs who was involved on the PANS paper. She has many PANDAS patients. She's our main "pandas doc". We've had IVIG through Dr. McGhee. If you are already diagnosed through Dr. Theinmann that is helpful. I would also recommend contacting SFMom...she may have additional recommendations. I know she sees a Lyme doc who does a really good job of looking for infectious triggers. Also, AmyJoy is North of SF, she's in the medical field....I believe she works at a place where they can do IVIGs. Also, contact Diana Pohlman at PANDASnetwork.org --she is Bay Area and may have additional recommendations. Many thanks. Have already been turned away by some of these as DS is not a child, but we'll keep plugging away.
  18. Well, met a brick wall yesterday. Literally, a human brick wall. I went to DS21's neurology appt yesterday (keep in mind he had a full blown grand mal ....old language....seizure last summer that was chalked up to an aberrant medication reaction), armed with tests so far and our concerns. After asking why all his symptomology hadn't been shared before, DS son he and we didn't realize there was any connection between these odd symptoms - and no one ever asked! He proceeded to tell us that PANDAS/PANS etc was "theoretical" and generally not accepted. He also explained that DS tics (head jerking, nose wrinkling, mouth stretching, etc) weren't that bad as he's seen people who have to kiss the floor with every step they take. All he could offer was meds for the tics. I was so frustrated. First, I handed him a copy of Swedo's PANS/PANDAS description (thank you to poster) and he made a copy (okay, give him that). I informed him that the med said it may cause seizures in people with a low thresh-hold for seizures (who knew). Also, for all the symptoms you read here, that DS has and has had coming and going for 15 years, you offer him a med aimed at one of them? !!! He said he really couldn't help any more than that. He was dismissive, condescending, and actually checking his watch after 20 of the 60 minutes we were supposed to have. Is anyone else out there tired of a doctor thinking they know your child better than you after 15 to 20 minutes with a rubber hammer? Thanks for letting me vent. Rheumatologist today, any advice, input would be welcomed. I know most of you have already been here.
  19. http://www.coconutketones.com/whatifcure.pdf Talks about the effect on alzheimers and other diseases that damage basal ganglia, very interesting!
  20. Read the links, very interesting indeed. Just curious ..... how many of us family members of PANDA like children have extended family member with brain tumors? I have 2, one currently with stage IV glioblastoma.
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