3bmom

I would love the articles on taurine being the info junkie I have become. I also will look into the cream. In the Mercola article on glutamine and glutamate it mentioned Quinolinic acid as a powerful excitotoxin which accumulates when there is viral encephalitis. That is what my DS Dr said he had his last flare since he was so severe, and out of three infections, strep, myco, and HHV-6, the herpes was sky high. The article also talks about hypoglycemia which effects him too. More so lately since he is started running track. Didn't someone here have issues when their son did wrestling? Catch 22 I guess is glutamine is good for healing the stomach.

I have been there. You are right no rationale at all. Just before we admitted our son to the hospital he had snuck out of the house at night and went 2 miles to get a milkshake, the morphine connection with the immune system. When he was at the hospital they let him eat unlimited ice cream and no blood work. The night we came home he had his only seizure. I think they are self medicating with dairy but it exacerbates everything. He stopped dairy because our new Dr back then yelled really loud at him and scared him. I also saw improvement with antibiotic and antiviral. Should you try a different antibiotic or a combo. I know some of our kids don't do well with SSRI's but your situation is serious enough to consider. Our Dr. doesn't use them till you are stable but then it helps with Seratonin for the frontal lobes and restful sleep. In all our talk on excess glutamate one of the links discusses dairy along with the importance of Zinc. I am thinking of that and heeding everyone's advice on low and slow.

Have you tried an anti-viral? Valcyclovir and no dairy is what saved us. He wasn't afraid of choking, but his OCD had him lose 30lbs in 2 months at age 11. I assume she won't try soup broth,fruit smoothies or chocolate almond milk. I think Boost has both Dairy and HFCS which is laden with systemic pesticides that are neurotoxins and endocrine disrupters along with Round-Up and it may be creating a vicious cycle. They do have an organic version I found when my Father-in-Law was on Boost. He started getting OCD but also had a viral infection and other issues. Looked just like Alzheimer. Just my thoughts. Will keep you in my prayers since I know how scary and alone you can feel.

If you are seeing a neurologist sf_mom has tests to check Glutamate. Check under that post.

This is a post that Rachel had under Glutamate/GABA. It held a lot of answers for me. It is interesting that it is for Restless Legs. http://www.rlcure.com/glutamate2.html Have you tried diet? Organic, Gluten and Casein free? In London they label GMO food. Do you stay away from this food. They are saturated with Round-UP pesticide. There are wonderful articles on the home page of this forum. I know these pesticides are being implicated in Autism, MS, and Alzheimer. Probably more since they deplete essential minerals in our bodies and destroy gut bacteria leading to Leaky Gut. Have you tried Cognitive Behavior Therapy? CBT can help break patterns when a Tic may be a compulsion. I met a guy who had severe Tics, vocal too. He traveled around to high schools teaching acceptance and was on the TV show "The Doctors". You can Google him. I met him later at my support group and I was amazed because he didn't tic at all. He was working on Thought patterns. You are older and this may be easier for you to address. I also would check infections too and I believe you can get better. Wether old or young it is a process of removing layers of inflammation from a variety of sources, based on your own tapestry so your body can heal itself. Keep us posted and good luck.

I should add we are on a SSRI. Our Dr. uses diet, antibiotics, anti-virals first for a couple months, when more stable adds SSRI. He shows keeping seratonin levels high increases needed sleep, but most important increased blood flow as shown by neuro-spect scans to help heal areas of the frontal lobe causing neuro issues.

Good article! I still like the idea of fecal transplants. My friends daughter was on prozac and has C-Diff since high school. Had lunch with her the other day and she has no anxiety, depression or IBS and medication free. She follows mostly Paleo diet but will use Organic Gluten free bread for a sandwich.

Thanks for the article! We have hypoglycemia issues and wonder if this is our connection. Rowingmom talked about reactive hypoglycemia too so I have some reading to do. Of interest to me also is the Quinolinic acid with relation toviral encephalitis. That is what happened with our last flare. Liver and brain issues is interesting too since pesticides highly effect the liver. Gatorade has flame retardant as an ingredient that is also mentioned on the Forum article about chemicals and neuro issues in children. I cringe at the amount my kids have consumed after sports games. They are suppose to phase it out but may be in other colored drinks. Food dyes are also excitotoxins in the brain. We now drink coconut water.

MASS. AGENCY WORKS TO RETURN TEEN TO CONNECTICUT The Massachusetts child-protection agency announced Friday that it is actively pursuing plans to return an ailing teenager at the center of a yearlong custody battle to her home state of Connecticut, in an apparent move to extricate itself from a drama in which the parents allege they have been unfairly stripped of their rights to make medical choices for their daughter. The Department of Children and Families said it is also endorsing a plan to have Justina Pelletiers medical care transferred back to Tufts Medical Center, which has long been a demand of her parents. Their attempt to move their daughters care a year ago from Boston Childrens Hospital to Tufts, where she had been treated previously, is what set in motion the events that led them to lose custody of the teenager. http://www.bostonglobe.com/metro/2014/02/28/state-agency-says-actively-working-return-justina-pelletier-connecticut/pfqMBiVwmoylAYsWYVI2YL/story.html

Great advice Airial95. I found I have one non-PANDAS son with high strep titers who has Dyslexia and Irlen. He had dysgraphia but that resolved while on actutane for severe acne. Always wondered why.. something with the gut bacteria? I have another non-PANDAS son who now has chronic fatigue beginning at 18 ands he had extremely high titers for HHV-6. My PANDAS son had high titers for both which are resolving with everyone getting treated.

Cara please read posts and especially Rachels post with an article about excessive Glutamate and links with seizures,under Glutamate and Gaba supplements. Very informative!

You guys are so amazing? Rachel your article today connected multiple dots for me! I am so excited! First the article from Sheila on the Home page about food allergy and Schizophrenia! That plus other posts this week in regards to glutamate explains the profound difference in behavior for my DS when we eliminated Dairy. The article on schizophrenia talks about wheat in the 50's. Wheat we grow now changed in the 60's to a shorter stalk that is more inflammatory. Now we spray it with pesticides so it dries faster. This pesticide chelates Magnesium and zinc the important vitamins to balance the glutamate. We also changed how we feed cows. They changed from an Omega 3 source to an Omega 6 source. As mentioned in the article Omega 3's are important for the foundation of neurotransmitters. I just learned this week that farm raised fish are fed corn changing their Omega 3 and 6 ratio. That corn is most likely a GMO corn further creating inflammation and chelation of vital nutrients. IDK maybe thats why some fish oil exacerbates our kids. Clean of mercury but not other things. In 1996 GMO soy and corn are introduced and now Round-Up with Glyphosate is sprayed both on the weeds and on the plant we eat. If you have watched "Genetic Roulette" all modern day health issues spike with this new increase in pesticide especially Autism. It makes sense to me because I always asked myself what happened between my older kids and my youngest born in 1998. I wondered before we got PANDAS since every boy in my carpool was a little quirky or impulsive more than being boys and boys I understand. This Spring the FDA approved HUGE amounts of Glyphosate to be sprayed because we created Superweeds. I went to a talk last week and I believe we are at a 300% increase. There has been no additional safety testing. The mom who spoke has a child who came down with Autism symptoms but is older. She tested his glyphosate levels in the urine and they were extremely high especially for a child. Another observation I used to joke about is what is in Panda Express Orange Chicken. Every time I took a carload of football players, (non-issues) to eat they unanimously asked for Orange Chicken. Can't believe it, the article answered that nagging question. I am not a BBB, Blood Brain Barrier expert but I have been lucky enough to listen to Dr. Dritan Angilleau (sp) and if all this excitement and imbalance of Glutamate and GABA is going on in the Brain I wonder if that is why our Brain Barrier Junctions can no longer hold back infections as he showed with the mice. That would make it doubly hard to help and diagnose our kids because with high inflammation we can have both Autoimmune Issues and infectious encephalitis, not to mention malnutrition, food sensitivities and a toxic body. A lot of rambling but for me and my journey I am excited to have a lot of questions answered. As a side note on the mention of Kava Kava could be harmful if you have a Fatty Liver, Round Up Glyphosate is being linked with an increase of Fatty Liver Disease in non-alcoholics. You or your kids may have an issue since this isn't usually tested until very sick. Be careful.

Thank you to whomever bumped this info up. All these threads give you lots to think about. We could have a seminar based just on glutamate! We are on prophylactic antibiotics and I always wondered after strep and myco are eliminated or reduced is the antibiotic doing something good we don't know about. I thought maybe holding an abundance of bad bacteria at bay but maybe it is glutamate or both.

Urination is my number one clue too along with loss of amazing math skills. I thought I read in Dr Amy Lasko's book that high glutamate levels may cause this. There are 2 great threads going about glutamate and may be dependent on how your child methylates. I know of a few moms who have done penile scopes to no avail. I have read about a mycoplasma urea? a long time ago but didn't find much info. It is a clue that showed up with all 3 of my DS flares but I have not heard of any answers except, "It just comes with the disorder".

Thanks for all the info. I am guessing excess glutamate outside the cell may be from glutamate additives in processed food that causes cravings and dysregulation. I will keep reading. You guys are amazing.

There is a great post back around Feb 10 Tried to transfer but I don't think I was successful. #1 Lowering Glutamate Update: post #1 fcefxer

Anybody know a good investigative reporter? I know Boston Globe covered it but based on our experience and another mom out West there are probably others across the country even if not so extreme. For us same hospital that diagnosed my DS, 5 years later refused blood work and access to other Dr's requests. They previously had video taped him for teaching purposes so they had further documentation. We left with 3 raging infections, life threatening allergies, and parenting lessons! 4 years later doing well after treatment I still can't wrap my brain around it.

Rowingmom, Did you use both the knotweed and Longvida together? I thought we were close to baseline with personality, we do need focus med Intuniv which wasn't a problem till flare at age 11. In November we took prescription 600mg for impacted wisdom teeth and saw the laughing easy going child from 9 years ago. Besides tugging at my heart it made me realize we are not there yet.

I am confused too! Dr. Amy Lasko talks about too much glutamate in the brain causing issues mostly from fast food andjunk food. I confess I have'nt read part 2 yet. Is there a difference with supplements? Does it tie in with our genetics? I know I am getting closer to doing "23 and Me". It just looks like such a big hill.

If you look at PANDAS as an infection causing inflammation in the Brain my mom opinion would be yes. if you look at etiology than there would need to be the presence of some anxiety, OCD, mood issues and/or tics. I look at PANDAS/PANS, Autism and ADHD as a venn diagram where the brain inflammation is at the center and presentation is dependent on age and location. If you look at beginning symptoms of Alzheimer they are eerily close to our PANDAS kids. Hopefully she has seen a neurologist to rule out other causes. Our Dr does Neuro-. spect scans that shows blood displacement in the frontal lobes and follow-up scans that shows healing. I once heard a Dr on PBS say he found anger and rage located, (by Neuro-spect Scan) in the brain where seizures are and that his patients improve on seizure medicine. Every Dr has a different view. It can't hurt your friend to go Gluten, Corn, Soy and Dairy free and Organic as much as possible. I would suggest the book, "Grain Brain". Also the same infection tests our kids do. The Human Herpes Virus 1,2, and 6 are big culprits in seizures, Alzheimer, MS and for my DS too. When we saw a neurologist he just chuckled at me since my DS can hold it together when necessary. Do they do Allergy tests? Immune Tests? If a girl I would also have her ovaries checked. No matter what age. Cysts have been correlated with autoimmune encephalitis. GMO food fed mice have a high amount of ovarian and mammary lesions. This testing is out of France. I have a girlfriend who's daughter had an ovary removed at age 7. Any illness is scary when it comes to your kids. It is great she has you for support. Keep us posted.

OMG Those articles give me chills. Because GMO crops have created super weeds the FDA has allowed more pesticides on our food even approving a HUGE increase this last spring without further testing. The fact they are wine growers and we are experiencing drought with more residues makes sense. I just found out they also spray wheat for faster drying...celiac anyone! On the table for approval is a new pesticide with Agent Orange ingredients. Think Viet Nam. Ag has deemed this essential for super weeds. What is essential for our children! I grew up in Washington state and raspberries and blackberries were like weeds taking over woods and empty lots. Did they ever have bug enemies or is the soil now so depleted they are weak and vulnerable for attack.

Thanks Rowingmom. That makes sense and slow and easy.

Our Dr made us give up Dairy for anger and rage. He does this before giving abx or anti-virals. I wouldn't of believed this would make such a difference if I didn't observe it myself. Also when he was angry and verbally abusive I would leave immediately. Walk around the block, library etc. He was old enough and I needed him to know it wasn't ok. No use in confronting them because they are in an irrational place. I agree about sups and especially die off. Our worst flare was after diflucan. Would milk thistle help support the liver. I agree for checking for mold. We found it behind the wall, new drywall from the 70's absorbs water and feeds mold. Dr's said it couldn't hurt him but 3 months before PANDAS he failed a hearing test because both tubes in his ears had collapsed with no prior problems. We also had worst rain in 50 years. Hang in there. It is really tough right now. My oldest son reminded me when I couldn't go on anymore that it truly is darkest before the dawn.

My son has always reacted to other kids until we went on prophylactic abx and anti-virals. In January I went on anti-virals for shingles and I had the best week, so sweet, but I just realized my husband was gone on business. It's so hard to separate out change from each factor.

If you choose to keep soy and corn in your diet PLEASE make sure it is organic. Over 85% of corn and soy in America is Genetically Altered and has huge amounts of pesticide with it. This pesticide Round-Up, just like the one in your garage for weeds is also sprayed on wheat to make it dry faster. Round-Up has an ingredient called glyphosate which collects the weeds minerals so it dies of malnutrition. It also collects our minerals too wreaking havoc on our gut and immune system. Our Dr has a 6 month wait list and will not continue you as a patient unless diet is followed. I am not saying it is easy, and is a journey, but our allergy numbers dropped from life threatening (which we had no idea, except change in behavior) to near normal.