Fwd: Re: Re: High Dose Vitamin A...

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Sent: Thu Feb 23 10:30:32 EST 2012

To: " mb12valtrex " <mb12valtrex >

Subject: Re: Re: High Dose Vitamin A...

Tammy - all you need is a blood test. Ask your doc to run IgG & IgM titers for strep a, mycoplasma pneumonia, Lyme (western blot), EBV, CMV, & HHV6. Also, antiDnase and ASO. This will tell you what is going on. Also, While original onset of symptoms is usually sudden, they don't all. Ecessarily show up at once. First exacerbations are often more subtle. Also, OCD doesn't always look like the oCD we often think of. Myy son had intrusive thoughts that he did not tell me about for 2 yrs because he was afraid something bad would happen to me if he did. So he did not have apparent OCD. He did have unusual fears that sound very much like you describe. The rages did not start until later. And it started slow and just got worse over a two yr timeframe because we did not know what was causing it. I wish someone would have mentioned PANDAS to me earlier. It would have saved me & my kid a lot of

heartache. Recently my oldest (straight a student, top athlete) started showing some weird things. I asked to have him tested for the above infections, even though in my heart I did not really think it could be that. He is healthy & I really thought it was middle school stress. But sure enough it was an infection - Lyme. Freaked me out. I just encourage you to get the blood test. If it is negative , great. If it is positive but you caught it early, great. I hope it is negative , then at least you can check it off the list. Wishing you the best - RuthSent from my iPhone

, thank you so much. Yes, it has occurred to me and other people have suggested the same. Behaviors will emerge out of the blue the way we see it happen in pandas. But, we really don't see much in the way of your typical red flags: no tics, no OCD, no rage or moodiness. I recently revisited pandasnetwork when another listmate also voiced concerns about my son and possible pandas and I'm just not feeling a connection (I can be dense, though). One thing has occurred to me: we've established that strep is not always the culprit in pandas (or pans). I have considered the idea that if another pathogen is responsible for the flares, then its possible we may see a different set of behaviors. I will address this with his doctor, but I doubt he will agree that my son's behaviors are severe enough to warrant a trial of antibiotics. Some of his good flora was on the low end of reference on his last OATS so I know his doctor

would have to be completely convinced to give it a go. Thank you so much. Please feel free to share any other thoughts. : )

-Tammy

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Sent: Thu Feb 23 08:12:49 EST 2012

To: "mb12valtrex " <mb12valtrex >

Subject: Re: Re: High Dose Vitamin A...

Tammy, Forgive my ignorance for I am new to the group, and only catch posts here and there so I don't know much about anyone or their story. The description below of your son with the Anxiety, fears, Pupils, "potty" talk....Sounds like a lot of Pandas symptoms. Although many of us know Pandas symptoms and ASD symptoms are very similar. Just can't ignore some of those and not bring up pandas. Anyone in the house been sick lately? Or friends or close relatives? To: "mb12valtrex " <mb12valtrex > Sent: Thursday, February 23, 2012 7:22 AM Subject: Re: Re: High Dose Vitamin A...

Hi Rita, We use both zinc and magnesium.He used to have those white spots on his fingernails. Those disappeared after some time on the zinc. He has me a little nervous lately and I'm not quite sure what to think:A couple of weeks ago, we went out and as we were getting out of the car, he was crying and said he felt like his heart wasn't working.I reassured him., showed him how to feel his own pulse, and he was better after a minute or two.Then they other day we were having lunch and he started to cry and said "My head! Am I having having a stroke?"...kind of an odd (and I

have to admit, funny) thing to hear a

nine year old say. I assured him he wasn't having a stroke and again, after a minute, he was fine. He could not describe what his head felt like. He said it was not pain. He knows what "brain freeze" is and is able to tell us about it so it wasn't that.I'm concerned about seizure acitivity. But why? At 9, why would they start now? So I'm keeping a close eye. We've also been having a hard time at night. He's worried about strangers coming into the house, every little noise freaks him out, I'm sleeping in his room with him every night. So it's possible he's just having general anxiety. I have wondered about puberty, myself....The other day, he went in the bathroom to pee and was kind enough to yell out to the entire house "Hey look! I've got hairy balls!! " His 6 year old brother promptly went in to investigate. (Sometimes it's hard being the only female in the house.

lol) Also, his pupils have been in a near-constant state of dilation for the past few weeks. It seems like they never constrict.The only thing we are currently taking is a multivitamin with extra A,C,D, E, his calcium, magnesium and zinc and Adrenergize (we'll begin chelating this weekend). I also gave him alfalfa and some pectin for a couple of days just to make sure he could tolerate them before we start our first round. His grammar is dipping here and there lately, but his cognition is up. His cousin slept over last night and had drawn some chinese symbols on a piece of paper. Tom was able to replicate them exactly. This is HUGE. He's never been able to replicate pictures like that as he has a difficult time understanding the spatial relationships of shapes to one another. So

that was a pretty big deal. I'm seeing cognitive gains in school as well - so I don't know if it's throwing everything else off temporarily? Things are not clear. Everyday, I'm seeing new, good things. Yet, there's always something to remind me that we haven't quite made it to the top of the hill just yet. We'll begin chelation and see where that takes us. I'm so tired of this consuming our days. I think it's time to just enjoy life and eachother for a while. -Tammy To: mb12valtrex Sent: Thursday, February 23, 2012 12:30 AM Subject: Re: High Dose Vitamin A...

Tammy,

Zinc & /or magnesium helped visual tics around our (it's usually zinc around our house).

Does he have any white spots on his finger nails by chance (that can be a sign of low zinc...the other signs were in a recent post I just did....

Sometimes around here he'll be just fine with his zinc dosage (it's one that we supplement in addition to a good multi)...then a growth spurt hits (like right now...being 13 he's puberty & has just grown 4"...can't keep up w/his cloths or his zinc....thank goodness for his Immusist because I was in a world of hurt w/his mineral derrangement paired w/puberty last year. We were not surprised when he broke his arm...w/his mineral derrangement, especially magnesium, calcium & Strontim...yep all the major bone buiding ones were low....it was my #1 concern last year even w/our high dose supplementation his body just was not absorbing it...thank goodness he's doing better this year.

Blessings,

Rita

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> >IÂ had reported that Tom's toe-walking had disappeared on the second day of high dosing.

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> >womp wommmmmmp. It's back. Big time.

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> >-Tammy

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