Pandasphilly

After reading the book "could it be B12" and discovering the connection of B12 deficiency with urinary frequency we tried Methyl B12 injections. My sons urinary leaking stopped within 36 hours (after suffering for 2 years with no solution). I believe the MB12 restarts the detox cycle for some. There is also a post out there on ammonia levels being off balance and I believe this is true. I suggest reading the book mentioned above if you ever have time. Editing to add that we also added folate with the B12 as there is typically a deficiency of folate present when there is a B12 deficiency. B12 works best in the presence of folate. So the B12 & folate are what cured this for us. Here is a link previously posted by lfran explaining it (I wish I searched this post a lot sooner!) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3302062/

Dr M. in lansdale pa accepts insurance. Most of us travel if your child is severe and needs plasmapheresis etc. You can pm

CHOP doesn't believe in pandas even WITH clear strep onset. Or at least they dont treat it if they do. Ours was ordered by dr. Latimer and done at Georgetown as that was my sons treating physician at the time. Typically with nmda there is seizure and memory loss During the illness but perhaps not in every case

We just paid $750 for what I believe is the igenex complete coinfection panel ordered by Dr. Kenneth Bock on our first visit. I can pull the paperwork if you'd like me to get the test number. I am still awaiting results but we felt it would be helpful to either rule in or rule out.

I agree with PowPow. We went right to spinal but it was negative.

Great article! Sums up treatment. Thanks for sharing

Thanks everyone for your replies. I'm happy to share feedback after our appointment

Thanks so much LLM

Is anyone seeing Dr. Kenneth Bock? If so are you happy with the experience? I scheduled An appointment for next week as I am looking for a one stop shop if that's possible... and he seems to treat Pandas, Lyme, MTHFR, detox, immune system, parasites, yeast, B12, supplements, liver & kidney protection etc. We seem to have it all however my son is SO much better after I added MB12 & leucovorin injections. He's improved so much I am in fear of changing anything, however the start of school takes him down every September so I am trying to prepare.

Thinking of you, your son and family. Did you receive results of Bartonella test?

thanks for your reply!No steroids throughout treatment. In fact the only pretreatment was hydration, Tylenol, Benedryl plus the ivig. Also this is not the happy hyper

Hi B, Tried to PM you and it says you cannot receive messages. Just an FYI, wasn't sure if you are aware.

Nancy, thanks for your reply. I'm wondering.... Do you consider 1g/k over 1 day to be low dose? That's where I'm confused. I guess I'm thinking its a half dose which is probably the same as low dose. Reaching our neurologist for clarification is near impossible. I know our autoimmune doctors believe low dose to be .4grams/kilo.

My ds11 just received IVIG last week and is suffering from severe hyperactivity. Excessive talking, constant noise, loudness, dancing, spinning, emotional, bouncing off walls especially late at night. Is Hyperactivity after IVIG common? Does anyone know of a reason for it? Does IVig exacerbate Yeast? after googling it I read a "statement" from an autism mom that it does. Has anyone heard this? She goes on to state that IVig detoxes the body of heavy metals and that IVIG will not work as well if you are not Gluten Free. Hmmm... things I never knew.

Our Pandas Neurologist is recommending the following IVIG protocol for my son. Please weigh in if you have ever heard of or experienced this IVIG protocol, or please just share your opinion in general. Month 1: IVIG 2gram/kilo over 2 days (we just received this) Months 2 through 6: IVIG 1gram/kilo over 1 day I am fearful he should be receiving 2g/k over 2 days. It seems like months 2-6 are only half a dose, albeit more frequently. Any thoughts????

Wow thanks MMC and momwocdsons, My son is so severe that the thought of grand kids (or him having to deal with this again, particularly if he has a chance at recovery) makes me cringe at present. I know it's aweful but our life at present seems a mute point. We just try to get through every day but there's little enjoyment or harmony, stressed marriage, suffering siblings. Some days it seems what's the point of it all. Maybe in a few years I might feel different. My daughter at 12 said she may not have kids if this is a possibility. I'd rather see her actually living a fulfilling life without kids than doing what were doing. Perhaps if treatment becomes more easily available or the disease gets recognized it won't be so bad for them. Again my son is a severe case. But there's always hope

MMC I've always wondered if this could be genetic. Have you heard of other pandas/pans adults whos children have also aquired it? I haven't seen much on this topic and am interested.

Stool test (by doctors data or great plains, etc) and also another test is a urine organic acid test which tests for biproducts of gut bacteria and yeast (also great plains I believe).

Nicklemama, and to add to that frustration I spoke with a member of susanahs treating team at Nyu and they are definitely not on board with pandas. Despite the fact that the symptoms are very similar in children. My friend cannot comprehend why we cannot just as easily receive the same (let alone ANY) treatment (or even respect) from the medical community when our kids are nearly the same exact story. Or why it's hard to secure IVIG when they get inumerable rounds at the neurologists encouragement. Plus 4 rituximab treatments from rheumatology, steroids then more IVIG. She's realizes her child is lucky and will be sharing her story.

The test is now commercially available and can be done by quest and sent to ARUP labs. There is a blood serum test for nmda but negative does not necessarily mean negative which is why we moved on to spinal. CSF is only tested at 2 labs so you have to wait a few weeks. I'll catch you up on my son shortly if I can ever get this child to sleep

QM: There is a post on the forum about this book. Interestingly my friend and I have the almost exact same story on symptomology of our children. We both thought our kids had pandas. The ER diagnosed her child schizophrenic and sent her home. Upon return to ER she demanded NMDA testing and her daughter was positive. She now recieves $1 million worth of treatment under insurance. (not that any of us want this diagnosis). I showed the treatment plan to Dr. L and she said "this is what all our kids need". I found so many similarities to my son's situation that we actually did a spinal tap for testing. I know in the book Susannah's case sounds extreme but my son's seemed even worse or I wouldn't have put him through the spinal. He came up negative.

QM: Interesting because ds11 is COMT negative on both genes. I would've guessed he'd be positive when I read your post. Dedee: If I recall doctors used General anesthesia for my sons tonsillectomy and he did much better on that than others. What I did not know is that the concern with nitrus oxide is that it inactivates vitamin B12 in the body, particularly if there's a malabsorption problem. But if you're not B12 deficient it should be fine. A good book on dental and other surgery, use of nitrous oxide and it's effect on B12 and MTHFR is "Could it be B12". My son also has bad or extreme reactions to a lot of meds. For instance even low dose melatonin makes him rage like the incredible hulk. I'd say it's odd but I too have heightened reations and slow detox so I get it. Smarty: My instinct says his reaction to anesthesia is not infection based. If you read the yasko results below it appears there are many positive polymorphisms that may be contributing. Also He's been under anesthesia at different times of his life and it's always been bad. As for his current condition we just did high dose IVIG on Thurs/Fri so we'll see how he does. We had just started ART phase 1 detox & parasite protocol but the ART doctor suggested putting it on hold during IVIG. Felt there was no reason to add that into the mix during infusion. I was seeing some small improvement. I will start again next week. I need to get to an MTHFR expert next so i can wrap my head around the below polymorphisms. My MTHRF doctor is not good at explaining things. Maybe we should start an MTHFR forum within ACN We did Yasko testing (didnt know of 23 and me at the time) and were positive for the following. MTHFR: compound heterozygos A1298C & C677T Phase 2 Detox: Conjucation of Toxins and Elimination we had many SNPs: Acetylation, Slow metabolizer polymorphism: Positive NAT2 R197Q both Chromosomes (affects Liver/Gut) Glutathion conjugation: GSTP1 I105V one chromosome (affects brain/skin) GSTP1 A114V one chromosome (brain/skin) Oxidative protection: SOD2 A16V one chromosome (affects mitochondria)

I can only speak to the anesthesia experience on my end. My ds11 is compound heterozygous with CBS and he is in terrible shape coming out of anesthesia. Phenobarbital had him screaming, raging, crying, staff had to hold him down for an hour, then myself another hour. So next go round we switched to propofol since it has a seven minute half life. We were assured he'd snap out of it quickly without concern. Well clearly he does not detox because after 2 hours of him screaming, talking with an accent, not recognizing me etc, the head of anesthesiology came to us inquiring if this has happened before. They Thought it very unusual at Georgetown. Third go round of propofol I warned them and no one listened. Since then they've advised us he needs sedatives before he wakes from anesthesia. It was a nightmare for them. It's crazy how long it takes to get out of his system. I hope we never need it again

I too am unable to retrieve or send messages. Database error.