Re: HHV6 and Now 3rd one diagnosed

[Guest guest]

Thanks for your response. I've been really going crazy this week

trying to wrap my mind around these things he says and does. He's so

different from our other two. How can the virus affect in such

profoundly different ways? I suppose it depends on what area of the

brain it affects. We've seen so much progress with Noah and ; I

hope we experience the same with Elijah. I got 's STAR testing

report (took it in May, about three months into the protocol) and the

difference between 2nd and 3rd grade was amazing. He did so well. He

struggled a little when school started this year, but now that he's in

the groove, he's got straight A's.

Unfortunately with Noah, we're seeing a reaction (a specialist called

it " curricular stress. " ) with the start of 2nd grade. He gets very

overwhelmed because a lot of the stuff presented in class is

confusing, such as place value. He actually reverted back to his

" comfort " activity, which is to cut out and draw tons of Blue's Clues.

That's always our key that something is stressing him out. We decided

to put him in SDC for math and language arts, and after a week, the

Blue's Clues stuff stopped. I'm hoping that means we made the right

decision. Luckily the SDC class is small and most of the kids have

their own one on one aides. The teacher is able to give individualized

instruction to each student as well as group. In addition, they have a

speech therapist come in once per week to work on group socialization,

and the teacher holds regular sensory integration activities.

Thanks for your posts. I feel better and I can't wait to start Elijah

on the protocol. We all need some peace and sanity back in our lives.

All the best,

Robyn

[Guest guest]

It's great to hear from you because you've lived with this your entire life and

now you're going through it with your kids. I have a hard time understanding

's, my Aspie, struggles, but I completely understand my five year old's

tantrums and feelings of despair. I had that a lot as a child. Noah has very

limited verbal skills and was being overwhelmed by the expectations in 2nd

grade. We still have him attending the class in the afternoon, when it's more

relaxed and the academics are less demanding. It seems to be working.

Thanks again for your insight. I really get a lot out of all your posts.

> From: <thecolemans4@...>

> Subject: Re: Re: HHV6 and Now 3rd one diagnosed

>

> Date: Saturday, September 20, 2008, 10:40 AM

> 2nd grade is hell.  It was for my oldest last year, and now

> it is for my youngest this year. 

> Why does this affect each child so differently?  Maybe

> age of onset, combination of factors, etc?  I've

> experienced (on milder scales) just about every range of

> symptoms at different times growing up, starting adhd age 5,

> then PANDAS age 8 & 9, then after severe mono age 10-12,

> developing very aspie traits thru age 16 - no social

> interaction, no eye contact, major problems w/comminication

> (rarely spoke), major sensory issues, toe walking, then age

> 18-20 severe fatigue, then 20s thru 25 constant pain

> (fibromyalgia), then slowly a decline of all the symptoms

> until age 27, and for a few years there - symptom free, pain

> free, energetic, and very confused about it lol. I stopped

> toe-walking around age 27-28, then finally at age 30

> (while pregnant w/my first one-a big anti-inflammatory

> immune modulation going on w/pregnancy), I walked completely

> normally for the first time. No songs stuck in my head

> anymore, a quiet brain for the first time (I didn't

> know that was normal).  Then in 2003, chronic strep hit

> again, and it all started all over again.  Part of me

> wishes I hadn't experienced normal, because now, with

> the new perspective and experiencing this cycle all over

> again, I'm a lot more self-concious, a lot more

> hypersomatic, and way more frustrated with the whole

> thing.  It triggers memories I had long forgotten, and

> I'm more acutely aware of my symptoms (hence the

> hypersomatism).  But then a few weeks on doxycycline starts

> clearing me up and I forget again how bad it was just a

> couple of weeks ago.  

> I look forward to the day when I feel like I've been

> stable and that I can count on my brain, and maybe be able

> to socialize again (I want to avoid people right now because

> I'm just constantly embarrassed).  I look forward to

> feeling good, having the energy to go hiking and play

> outside like I've always loved.  But as far as living

> in the moment (and trying to be comfortable in it), I know

> that all things are temporary and there's not a quick

> fix, and that despite how bad my symptoms were as a kid

> & teen, I had lots of fun and interests and it's all

> worthwhile where ever we're at.  I spend so much time

> wishing I was different than I am that I forget to enjoy

> what I have.  I waste time observing the ways my kids

> 'aren't' normal sometimes that I forget to enjoy

> how delightful they are (and if yours are 2-3 and you're

> going thru the torture of the tantrums and can't

> perceive ever enjoying this, I did too) and just meet them

> where they're at.

> My now 3rd grader is doing awesome this year, but in 2nd

> grade, I was perceiving his educational future as very bleak

> indeed.  Now that my 7yr old is in 2nd, and it's like a

> repeat (if not perhaps worse & he's the one

> who's supposed to be mostly 'typical') of last

> year ... and a couple of other 2nd graders are going thru

> the same thing ... I think it's the grade, the age, the

> new expectations.  I could strangle his teacher for

> writing down every single tiny detail of every little thing

> he does wrong ... she's going to kill his spirit is she

> doesn't watch it.  But then I thought so last year w/my

> other one too.

> HTH-

>

>

>

>

> Re: HHV6 and Now 3rd one diagnosed

>

>

> Thanks for your response. I've been really going crazy

> this week

> trying to wrap my mind around these things he says and

> does. He's so

> different from our other two. How can the virus affect in

> such

> profoundly different ways? I suppose it depends on what

> area of the

> brain it affects. We've seen so much progress with Noah

> and ; I

> hope we experience the same with Elijah. I got 's

> STAR testing

> report (took it in May, about three months into the

> protocol) and the

> difference between 2nd and 3rd grade was amazing. He did so

> well. He

> struggled a little when school started this year, but now

> that he's in

> the groove, he's got straight A's.

>

> Unfortunately with Noah, we're seeing a reaction (a

> specialist called

> it " curricular stress. " ) with the start of 2nd

> grade. He gets very

> overwhelmed because a lot of the stuff presented in class

> is

> confusing, such as place value. He actually reverted back

> to his

> " comfort " activity, which is to cut out and draw

> tons of Blue's Clues.

> That's always our key that something is stressing him

> out. We decided

> to put him in SDC for math and language arts, and after a

> week, the

> Blue's Clues stuff stopped. I'm hoping that means

> we made the right

> decision. Luckily the SDC class is small and most of the

> kids have

> their own one on one aides. The teacher is able to give

> individualized

> instruction to each student as well as group. In addition,

> they have a

> speech therapist come in once per week to work on group

> socialization,

> and the teacher holds regular sensory integration

> activities.

>

> Thanks for your posts. I feel better and I can't wait

> to start Elijah

> on the protocol. We all need some peace and sanity back in

> our lives.

>

> All the best,

>

> Robyn

>

>

>

>

>

>

>