cara615 Posted February 28, 2014 Report Share Posted February 28, 2014 Could seizures be caused by PANDAS in the absence of other symptoms? Asking about a friend's daughter....... Link to comment Share on other sites More sharing options...
3bmom Posted February 28, 2014 Report Share Posted February 28, 2014 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. Link to comment Share on other sites More sharing options...
cara615 Posted February 28, 2014 Author Report Share Posted February 28, 2014 (edited) Thanks 3bmom! I will pass that info on to my friend. her ds has been suffering from seizures since 9months old. She has been on anti seizure medication for a long time. She is 9 now. the thing that got me thinking PANDAS was that she feels the need for frequent urination. They checked for a UTI but came back negative. The frequent urination happens during the day and at night too..... Edited February 28, 2014 by cara615 Link to comment Share on other sites More sharing options...
LexMom Posted February 28, 2014 Report Share Posted February 28, 2014 My son and daughter's only symptom for strep was frequent urination. I few times, I took them to the doc thinking they had UTIs, but they had strep. Link to comment Share on other sites More sharing options...
3bmom Posted February 28, 2014 Report Share Posted February 28, 2014 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". Link to comment Share on other sites More sharing options...
3bmom Posted March 1, 2014 Report Share Posted March 1, 2014 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! Link to comment Share on other sites More sharing options...
cara615 Posted March 3, 2014 Author Report Share Posted March 3, 2014 I will!! Thanks for all this amazing info! Link to comment Share on other sites More sharing options...
3bmom Posted March 4, 2014 Report Share Posted March 4, 2014 Cara, Rachel posted more info today that is truly amazing. Without taurine which our liver makes and is probably being annihilated due to food changes and pesticides we build up glutamate and worse Quinolic acid contributing to a host of issues including regressive Autism and Seizurses. Link to comment Share on other sites More sharing options...
cara615 Posted March 20, 2014 Author Report Share Posted March 20, 2014 UPDATE: friend's daughter's tests came back with high titres for mono and strep. Could this be causing the seizures? If so what should she do? Abx? Anti virals? She is seeing a neuro right now. Should she get a new Dr.? Link to comment Share on other sites More sharing options...
3bmom Posted March 22, 2014 Report Share Posted March 22, 2014 If Neuro is open he can prescribe antibiotics and antivirals and should. Low and slow. Our Dr says titers over 4 fold should always be addressed. She may want a PANDAS Dr.. I have an Autisim Dr who says it all is low grade encephalitis due to immune dysfunction. We have been on Valcyclovir for 2 years. Our titers dropped from a high of 16X normal to 0 in 6 months for HHV-6. This virus has been linked with seizures . Check the recent posts under Valcyclovir. From another angle our local news covered a story of 2 families moving to Colorado for legal marijuana. Their children went from 100 seizures a day to 2. They use a strain called "Charlottes Web" which is high in canneboid ,( CBD ) and little THC the psychological part. It is in oil form. I know nothing about pot except my college age son has a legal medical card for dyslexia (on his own) and is getting A's and B's in difficult classes like History with lots of reading. He says there is research to its effectiveness but pharmaceuticals are blocking it because they can't make any money and are trying to duplicate it synthetically. I think it would be worth looking into it. Just like supplements you would need to be careful about quality. Keep me posted. rowingmom 1 Link to comment Share on other sites More sharing options...
cara615 Posted March 22, 2014 Author Report Share Posted March 22, 2014 Thanks 3bmom! That is the advice i was going to give her. She is definitely looking into Charlottes web. Infact high CBD hemp oil can be fed ex'd to GA by Bradstreet! So she doesn't even need to go to CO. I told her that she may want to see him. High CBD hemp/marijuana is VERY VERY anti inflammatory as it binds to the CB2 receptors located in our gut. But yeah, i would a least try to treat the infections just to see what happens. It can't hurt to do a round or two of antibiotics or antivirals. Link to comment Share on other sites More sharing options...
dcmom Posted March 22, 2014 Report Share Posted March 22, 2014 Has she looked into anti nmdar encephalitis? Link to comment Share on other sites More sharing options...
3bmom Posted March 24, 2014 Report Share Posted March 24, 2014 Here is a interview with Dr. Sanjay Gupta in regards to the canneboidal oil helpful for seizures. Wonder if it would help our kids? Wonder what changes you would see on a neurospect scan? Some Dr's believe the rage issues are located in the seizure area of our kids brains. I believe some parents have posted beneficial changes on anti- seizure meds. It also would be affordable....imagine that http://youtu.be/CiShwotFJR8 Link to comment Share on other sites More sharing options...
cara615 Posted March 24, 2014 Author Report Share Posted March 24, 2014 She's been on anti- seizure meds (all sorts of them) for years and she still has seizures Link to comment Share on other sites More sharing options...
Hrosenkrantz Posted March 24, 2014 Report Share Posted March 24, 2014 My son was shown to be having irregular activity on a EEG this past December. Since learning of this, I can't tell you how many families I have heard about who have been able to control their kids seizures with traditional anti-seizure medications Link to comment Share on other sites More sharing options...
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