Hierge
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Posts posted by Hierge
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Hi Dave--So glad to see your post here--My husband sat across from you at the Italian restaurant that evening.
As you know, we see Dr L. as well -- and she has literally been a life change-agent for our children. Hey there! Your husband has a Zen about him that I really liked. He convinced us that Dr. L is worth the cost and effort to see.
I wanted to mention that we have found the following supplements really helpful (we think...) in addition to antibiotics and 2 steroid bursts in the last two years.
Omega 3's via Flaxseed Oil capsules or fish oil (we aim for 1000mg a day for Omega 3)
You need to know something about Flaxseed Oil. It has virtually zero effect on inflammation in the brain. Flaxseed Oil has long-chain fats that can be converted "theoretically" to EPA and DHA in the body, but in reality it never gets converted. The good news is... IFOS Certified tasteless fish oil is available for a moderate price. Personally, I buy Omapure IFOS Certified Omega 3 fish oil. I order bottles of 120 capsules in lots of 10 for $20 per bottle. The proper dosage for people with neurological problems is 10+ grams (yes grams) per day. At 700mg of EPA/DHA per capsule of Omapure this means 15 capsules per day. That's a lot of oil, but it will have a very strong effect just like a steroid with no side effects other than higher IQ and memory retention. Other side effects are strongly anti-depressant - more powerful than SSRIs. You can cut the capsules and put it in the "big brain shake" with blueberries, protein powder and milk for children. There might be some orange oil in the stool, but mixed with food it should stop. I am putting Blake on 7.5 grams a day (11 capsules drained) to start and then will be moving her up to 15 or higher. Just got her mom to agree to this daily routine. You might want to read Dr. Barry Sears book "The Anti-Inflammation Zone" for more info about real fish oil as opposed to flax. Remember, this is just oil and should not be considered dangerous in virtually any dose unless there is hemophilia or bleeding issues. Ultimately, it's just oil. Play with the dosage.
Vitamin D and C, 1000mg of each a day.
Probiotics -- via one or two "Pearls" sold at whole foods, and a glass or two of kefir (disguised in milkshakes), or Good Belly fruit drink from Whole Foods--Kefir I think really seems to help--
This is as good as done. Thanks so much for this advice. I will get on this immediately.
So glad to hear you are going to see Dr L., all the best--
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Welcome! I'm sorry you've been dealing with this for so long. We've been trying to get our son well for a year, and that has seemed like an eternity. A few thoughts/questions for you:
1. How was Lyme ruled out? By an ER doc with a Western Blot? Many here have discovered that Lyme is an underlying problem for their children, which went undiagnosed for a long time. It can be very tricky to diagnose properly, so you may want to consider revisiting this with a Lyme-literate doctor.
Blake had her spinal fluid drawn and it was sent away to a lab where the results took days to return. She was ruled negative on that test as well. She did have a tick on her a month before the sudden onset of symptoms, but it was a large tick from North Carolina not known to be a species that carries Lyme. We were sure it was Lyme because of that tick, but a week in the hospital convinced us otherwise, especially with the elevated Strep titers.
2. Have you had everyone in your household tested for elevated strep titers? Several families here have discovered that they have a strep carrier in the family after working for a long time to get their children well. You may want to have your family doctor run these before you see Dr. Latimer. If anyone is elevated, this is good info for her to have.
We haven't had anyone besides Blake tested. Her mother has a strep throat on a fairly constant basis though. The ENT doctor Gupta told us that 10% of the population are strep carriers and that it's utterly futile to try and control strep in the environment. He strongly recommends the control of inflammation for PANDAS rather than the strep emphasis. I am not in agreement on his refusal to give prophylactic Augmentin, but perhaps there's something to the idea that antibiotics are effective on PANDAS because they are anti-inflammatory IN ADDITION to being antibiotic toward Strep. The prophylaxis benefit, therefore, being primarily anti-inflammatory rather than antibiotic. I am currently on that bandwagon. It's my belief that we need a treatment regime that "normal" doctors can agree to short of prophylaxis - if possible. Just a reality for those of us who have been through lots of doctors and need something we can get non-PANDAS experts to treat with.
3. Did your daughter get better after the initial IV antibiotics? What antibiotics has she been given? Did you ever try a course of steroids?
Blake cleared up after several weeks. I think it was Zithromax she had in the IV. That would have killed Lyme as well from what I know. They decided to zap her for good measure. She has a baseline of PANDAS symptoms that are a combination of learned PANDAS behaviors and real PANDAS behaviors when strep starts kicking in on her. She goes through antibiotic rounds once or twice a year. That's the best we could get until now.
I wish you all the best. From what I hear, Dr. Latimer is wonderful. And you've found a great community here for support, information and ideas.
Jennifer
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Welcome. I am happy you have an appt with Dr Latimer. A lot of the symptoms your daughter had/has other kids do too including staring at the sun, crawling around like an animal,having animalistic ways of eating, overall eating issues that result in weight loss, etc. You're not alone and PANDAS isn't as rare as some doctors make it out to be. Until the appt in Sept, I would also consider giving her Vitamin D (perhaps why she stares at the sun), Omega 3's, and probiotics. Some kids also have an easing of symptoms with Ibuprofen.
Here are some useful links you can read. Perhaps they may answer some questions or lead you to new ones.
PANDAS Fact Sheet
http://www.latitudes.org/forums/index.php?showtopic=6265
PANDAS FAQ
http://www.latitudes.org/forums/index.php?showtopic=6266
If your daughter is interested in connecting with other kids and teens, I suggest this website www.pandas-syndrome.webs.com It was started by a 13 yr old boy with PANDAS
I'm happy you found this forum!
Thanks Vickie! I am starting her on high dose Omega 3's this weekend for anti-inflammation. I will try the Vitamin D as well. We give Ibuprophen when she gets bad. Can you give me some brands for probiotics and vitamin D?
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Hello,
My name is Dave. My 12 year old daughter Blake was diagnosed by a pediatric neurologist four years ago with PANDAS. She couldn't sit up in a chair without falling, stared at the sun with eyes open, crawled around the floor like an animal, started to undress in public, crawled across table in restaurant to eat like a dog off of someone else's plate, drew bad pictures with crayons in her fist, asked for doughnuts every five minutes for three days... many other sudden onset symptoms.
The first ER in Calvert County Maryland made us wait five hours until we left. Prince William hospital in Virginia said there was nothing wrong. Finally, we took her to Fairfax Hospital in Virginia, one of the top hospitals in the country. This had to be more than a week after the sudden onset symptoms.
At the time, we had her in the ER for suspected Lyme disease. Negative on that. She had encephalopathy according to the pediatric neurologist. He had a student with him as he examined Blake. After about ten minutes of just staring at her and rubbing his chin, he got a quizzical smile on his face...
"Did you say that your daughter asked for doughnuts every five minutes for a couple days?" He looked at the student and back at Blake.
"She has PANDAS." The student's looked back and slowly nodded in agreement.
"This is a rare disorder, I've never seen a case in a child this old (8yrs)"
"I'm going to make you a bet. I'm going to run a blood test for strep and it will come back positive. These kids don't get strep throats, they get it as a blood infection that affects their brain and causes sudden onset OCD."
"I can treat this with very small doses of steroids."
Well... naturally the strep test came back positive with titers at 400. She was in the hospital for a week and had every test known to mankind done on her. She was treated with IV antibiotics and never got the steroids. Our insurance didn't include Dr. Young in network.
It's been four years now and the best we have gotten for Blake is on positive Strep tests she gets the normal course of antibiotics. She is 12 years old and weighs barely 70lbs, I can close my index finger and thumb around her biceps. She has good days and bad days. Irrational fears. Hypersensitivities. Cries often without any reason. Hordes food in hiding places around her room. Won't flush toilets or brush her teeth voluntarily. She has new OCD symptoms on a daily basis. Her only treatment is 27mg of Concerta daily.
After the OCD conference in Crystal City and the dinner with Beth Maloney, I found out about Dr. Latimer in our area. I have an appointment for September 28th.
My hopes are high for Blake.
Nice to see you folks have a group and are getting really smart about this disorder. I hope I can contribute to the body of knowledge here.
Dave Hiergesell
As you know, we see Dr L. as well -- and she has literally been a life change-agent for our children.
Daughter Blake 12yr Old (PANDAS diagnosis 8yrs / Fairfax Hospital VA)
in PANS / PANDAS (Lyme included)
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