Re: Just when you think you've tried everything ....

[Guest guest]

Doris, that's wonderful! I'm so glad to hear it! Keep up the good

work and stay positive!

Cheryl

On Jul 14, 2007, at 8:47 PM, Doris and Steve wrote:

> hey folks -

> Doris here from land. I felt it was time to post a brief update on

> .

> is almost 12 (whew!) and he's been a patient of Dr G's for

> almost

> 8 yrs.

> was dx'd 'on the spectrum' when he was 3. regressed

> between

> 18-24 mths

> after meeting all milestones. He appeared to be a very healthy child

> with no colds or ear infections.

> There is a paternal family history of autoimmune related disorders.

> The

> maternal family

> includes depression, cancer and the RH- blood type.

>

> When Dr G first saw , 's lymph count was almost 3x the norm.

> His food allergy panel

> was everywhere and he had antibodies to myelin. CMV, EB and HHV6

> titers

> were high

> and NK cells were off.

>

> Over the last 8 yrs, 's had 3 SPECT scans. He's been on a variety

> of meds

> (valtrex & famvir, lamisol-nizoral-diflucan, tenex, wellbutrin,

> effexor,

> zoloft-celexa-paxil)

> Some have worked, some have not. As you can tell from my past

> postings,

> there were times

> we almost gave up (esp during Dr G's irritable times)

> We did ABA for 3.5 yrs then placed in the public school

> system in

> our local

> 'inclusion' program. ABA was successful, the school system was not.

> We finely hired a lawyer and he's now in a non-public placement

> feeling confident

> and successful.

>

> Many parents start a protocol expecting quick results or perhaps

> results

> in 1-3 yrs.

> But sometimes, you have to get those bumps and bruises in order to get

> results.

> is heading into puberty. He's already 5' tall!

> Research has shown that hormones can have a positive effect on the

> immune system.

> I asked Dr G about this and he said " Funny you should bring that

> up ... "

> We just increased the celexa from an alternating dose 1x day to the

> same

> dose 1x day

> with good results! This is something we've NEVER had success with over

> the last 8 yrs.

> Blood tests which were once horrible are stable. There continues to be

> indications

> of an impaired immune system but they are subtle.

>

> planned our trip to Pittsburgh last month with my husband.

> loves exits, interstates and roads. He's discovered a website

> where someone

> has taken pictures of roads and exits. He knew where we were before

> we did.

> He has also indicated that he wants a party this year for his

> birthday -

> and he wants

> the boys from his class to attend. New things that we're gloriously

> getting used to

> and encouraging.

>

> We grow restless at times with Dr G, the movement, lack of local

> clinics

> and the medical community overall. But things are starting to come

> together ...

>

> doris

> land

>

>

>

[Guest guest]

Okay, Doris, this is really weird... After replying to your post I

went tooling around the web and you aren't going to believe what I

found...

http://www.aaccasa.org/news/january_2002/page3.html

I saw the name on the page and thought, " no, I doubt it " and then I

read it. Yup. It was!

cheryl

On Jul 14, 2007, at 8:47 PM, Doris and Steve wrote:

> hey folks -

> Doris here from land. I felt it was time to post a brief update on

> .

> is almost 12 (whew!) and he's been a patient of Dr G's for

> almost

> 8 yrs.

> was dx'd 'on the spectrum' when he was 3. regressed

> between

> 18-24 mths

> after meeting all milestones. He appeared to be a very healthy child

> with no colds or ear infections.

> There is a paternal family history of autoimmune related disorders.

> The

> maternal family

> includes depression, cancer and the RH- blood type.

>

> When Dr G first saw , 's lymph count was almost 3x the norm.

> His food allergy panel

> was everywhere and he had antibodies to myelin. CMV, EB and HHV6

> titers

> were high

> and NK cells were off.

>

> Over the last 8 yrs, 's had 3 SPECT scans. He's been on a variety

> of meds

> (valtrex & famvir, lamisol-nizoral-diflucan, tenex, wellbutrin,

> effexor,

> zoloft-celexa-paxil)

> Some have worked, some have not. As you can tell from my past

> postings,

> there were times

> we almost gave up (esp during Dr G's irritable times)

> We did ABA for 3.5 yrs then placed in the public school

> system in

> our local

> 'inclusion' program. ABA was successful, the school system was not.

> We finely hired a lawyer and he's now in a non-public placement

> feeling confident

> and successful.

>

> Many parents start a protocol expecting quick results or perhaps

> results

> in 1-3 yrs.

> But sometimes, you have to get those bumps and bruises in order to get

> results.

> is heading into puberty. He's already 5' tall!

> Research has shown that hormones can have a positive effect on the

> immune system.

> I asked Dr G about this and he said " Funny you should bring that

> up ... "

> We just increased the celexa from an alternating dose 1x day to the

> same

> dose 1x day

> with good results! This is something we've NEVER had success with over

> the last 8 yrs.

> Blood tests which were once horrible are stable. There continues to be

> indications

> of an impaired immune system but they are subtle.

>

> planned our trip to Pittsburgh last month with my husband.

> loves exits, interstates and roads. He's discovered a website

> where someone

> has taken pictures of roads and exits. He knew where we were before

> we did.

> He has also indicated that he wants a party this year for his

> birthday -

> and he wants

> the boys from his class to attend. New things that we're gloriously

> getting used to

> and encouraging.

>

> We grow restless at times with Dr G, the movement, lack of local

> clinics

> and the medical community overall. But things are starting to come

> together ...

>

> doris

> land

>

>

>

[Guest guest]

Doris, thanks for sharing your son's success story. I realize that its the

little miracles that will lead to recovery. One hopes that our children would

normalize tomorrow but I need to be patient.

thanks again Kavita

Re: Just when you think you've tried everything ....

Okay, Doris, this is really weird... After replying to your post I

went tooling around the web and you aren't going to believe what I

found...

http://www.aaccasa. org/news/ january_2002/ page3.html

I saw the name on the page and thought, " no, I doubt it " and then I

read it. Yup. It was!

cheryl

On Jul 14, 2007, at 8:47 PM, Doris and Steve wrote:

> hey folks -

> Doris here from land. I felt it was time to post a brief update on

> .

> is almost 12 (whew!) and he's been a patient of Dr G's for

> almost

> 8 yrs.

> was dx'd 'on the spectrum' when he was 3. regressed

> between

> 18-24 mths

> after meeting all milestones. He appeared to be a very healthy child

> with no colds or ear infections.

> There is a paternal family history of autoimmune related disorders.

> The

> maternal family

> includes depression, cancer and the RH- blood type.

>

> When Dr G first saw , 's lymph count was almost 3x the norm.

> His food allergy panel

> was everywhere and he had antibodies to myelin. CMV, EB and HHV6

> titers

> were high

> and NK cells were off.

>

> Over the last 8 yrs, 's had 3 SPECT scans. He's been on a variety

> of meds

> (valtrex & famvir, lamisol-nizoral- diflucan, tenex, wellbutrin,

> effexor,

> zoloft-celexa- paxil)

> Some have worked, some have not. As you can tell from my past

> postings,

> there were times

> we almost gave up (esp during Dr G's irritable times)

> We did ABA for 3.5 yrs then placed in the public school

> system in

> our local

> 'inclusion' program. ABA was successful, the school system was not.

> We finely hired a lawyer and he's now in a non-public placement

> feeling confident

> and successful.

>

> Many parents start a protocol expecting quick results or perhaps

> results

> in 1-3 yrs.

> But sometimes, you have to get those bumps and bruises in order to get

> results.

> is heading into puberty. He's already 5' tall!

> Research has shown that hormones can have a positive effect on the

> immune system.

> I asked Dr G about this and he said " Funny you should bring that

> up ... "

> We just increased the celexa from an alternating dose 1x day to the

> same

> dose 1x day

> with good results! This is something we've NEVER had success with over

> the last 8 yrs.

> Blood tests which were once horrible are stable. There continues to be

> indications

> of an impaired immune system but they are subtle.

>

> planned our trip to Pittsburgh last month with my husband.

> loves exits, interstates and roads. He's discovered a website

> where someone

> has taken pictures of roads and exits. He knew where we were before

> we did.

> He has also indicated that he wants a party this year for his

> birthday -

> and he wants

> the boys from his class to attend. New things that we're gloriously

> getting used to

> and encouraging.

>

> We grow restless at times with Dr G, the movement, lack of local

> clinics

> and the medical community overall. But things are starting to come

> together ...

>

> doris

> land

>

>

>

[Guest guest]

Hi Doris,

This is the first time I have posted here but I want

to thank you for writing and telling us about . I

have heard that some children do improve when reaching

puberty. I am a little worried though because my son

had an EEG done recently and the results came back

abnormal and he is prone to seizures. I have heard

that children with seizure disorders get worse during

puberty because the hormones increase the chance of

seizures. I hope that is not the case. Again, thank

you for writing.

All the best,

Jill

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[Guest guest]

Doris

Thanks for sharing. It is a long hard road for people with immune

system issues on both sides of the family. Glad to know your

perserverence is paying off!

--- In , Doris and Steve <sjsmith@...>

wrote:

>

> hey folks -

> Doris here from land. I felt it was time to post a brief update

on

> .

> is almost 12 (whew!) and he's been a patient of Dr G's for

almost

> 8 yrs.

> was dx'd 'on the spectrum' when he was 3. regressed

between

> 18-24 mths

> after meeting all milestones. He appeared to be a very healthy

child

> with no colds or ear infections.

> There is a paternal family history of autoimmune related disorders.

The

> maternal family

> includes depression, cancer and the RH- blood type.

>

> When Dr G first saw , 's lymph count was almost 3x the

norm.

> His food allergy panel

> was everywhere and he had antibodies to myelin. CMV, EB and HHV6

titers

> were high

> and NK cells were off.

>

> Over the last 8 yrs, 's had 3 SPECT scans. He's been on a

variety

> of meds

> (valtrex & famvir, lamisol-nizoral-diflucan, tenex, wellbutrin,

effexor,

> zoloft-celexa-paxil)

> Some have worked, some have not. As you can tell from my past

postings,

> there were times

> we almost gave up (esp during Dr G's irritable times)

> We did ABA for 3.5 yrs then placed in the public school

system in

> our local

> 'inclusion' program. ABA was successful, the school system was not.

> We finely hired a lawyer and he's now in a non-public placement

> feeling confident

> and successful.

>

> Many parents start a protocol expecting quick results or perhaps

results

> in 1-3 yrs.

> But sometimes, you have to get those bumps and bruises in order to

get

> results.

> is heading into puberty. He's already 5' tall!

> Research has shown that hormones can have a positive effect on the

> immune system.

> I asked Dr G about this and he said " Funny you should bring that

up ... "

> We just increased the celexa from an alternating dose 1x day to the

same

> dose 1x day

> with good results! This is something we've NEVER had success with

over

> the last 8 yrs.

> Blood tests which were once horrible are stable. There continues

to be

> indications

> of an impaired immune system but they are subtle.

>

> planned our trip to Pittsburgh last month with my husband.

> loves exits, interstates and roads. He's discovered a website

> where someone

> has taken pictures of roads and exits. He knew where we were

before we did.

> He has also indicated that he wants a party this year for his

birthday -

> and he wants

> the boys from his class to attend. New things that we're

gloriously

> getting used to

> and encouraging.

>

> We grow restless at times with Dr G, the movement, lack of

local

> clinics

> and the medical community overall. But things are starting to come

> together ...

>

> doris

> land

>