Update on

September 13, 2005

Re: update on

Hi Gail:

is doing much better. A couple med adjustments for now. I am getting back on my meds (slipped a little there).

Tried to log on to the BBS and had to get a new password - still can't get on to the damn thing!!

Tomorrow we should be out on the water if it doesn't get to hot.

Gail

How is doing? I hope all is well or at least better. Everyone please check in every once in a while. Love TURKcharade799@... wrote:

September 13, 2005

Glad to hear that Gail. Give my regards to him. TURKcharade799@... wrote:

Re: update on

Hi Gail:

is doing much better. A couple med adjustments for now. I am getting back on my meds (slipped a little there).

Tried to log on to the BBS and had to get a new password - still can't get on to the damn thing!!

Tomorrow we should be out on the water if it doesn't get to hot.

Gail

How is doing? I hope all is well or at least better. Everyone please check in every once in a while. Love TURKcharade799@... wrote:

September 13, 2005

Gail glad to hear you guys are doing okay. I bet each day that is able to be out on the boat makes going thru all of this a little less painful.

Hugz to you both,

is doing much better. A couple med adjustments for now. I am getting back on my meds (slipped a little there).

Tried to log on to the BBS and had to get a new password - still can't get on to the damn thing!!

Tomorrow we should be out on the water if it doesn't get to hot.

Gail

M in CA

September 14, 2005

Well plans change. We will not be on the water tomorrow. We will be at the hospital, but for a good reason. We will be meeting our new granddaughter. Never get tired of doing this, even though the count is somewhere around 20. Mykenzie Lynn came to us at 2:57 PM. She has brown red (yep red again) hair. Weighed in at 10 lbs 5 oz (ya she should start school next week, smile) and 23.25 inches. Big girl. Lungs you can hear accross town!

Gail Re: update on

Hi Gail:

is doing much better. A couple med adjustments for now. I am getting back on my meds (slipped a little there).

Tried to log on to the BBS and had to get a new password - still can't get on to the damn thing!!

Tomorrow we should be out on the water if it doesn't get to hot.

Gail

How is doing? I hope all is well or at least better. Everyone please check in every once in a while. Love TURKcharade799@... wrote:

September 14, 2005

Congratulations Grandma. I am very happy for you. May she have a HEALTHY, happy and wealthy life. Love TURK. charade799@... wrote:

Well plans change. We will not be on the water tomorrow. We will be at the hospital, but for a good reason. We will be meeting our new granddaughter. Never get tired of doing this, even though the count is somewhere around 20. Mykenzie Lynn came to us at 2:57 PM. She has brown red (yep red again) hair. Weighed in at 10 lbs 5 oz (ya she should start school next week, smile) and 23.25 inches. Big girl. Lungs you can hear accross town!

Gail Re: update on

Hi Gail:

is doing much better. A couple med adjustments for now. I am getting back on my meds (slipped a little there).

Tried to log on to the BBS and had to get a new password - still can't get on to the damn thing!!

Tomorrow we should be out on the water if it doesn't get to hot.

Gail

How is doing? I hope all is well or at least better. Everyone please check in every once in a while. Love TURKcharade799@... wrote:

September 14, 2005

Congrats!!!!!

Bridget

> Well plans change. We will not be on the water tomorrow. We will be

at the hospital, but for a good reason. We will be meeting our new

granddaughter. Never get tired of doing this, even though the count is

somewhere around 20. Mykenzie Lynn came to us at 2:57 PM. She has

brown red (yep red again) hair. Weighed in at 10 lbs 5 oz (ya she

should start school next week, smile) and 23.25 inches. Big girl.

Lungs you can hear accross town!

Gail

September 15, 2005

Gail,

Did I see that you are having trouble logging in to the BBS? I can

help. Sent you an email, but haven't heard back.

If I can assist, please email me at:

mike ( " @ " ) solinas ( " dot " ) com replace obvious symbols.

Mike

>

September 16, 2005

Congrats Gail and !!! I can't wait for my kids to give me grandchildren......

M in CA

February 6, 2006

Hi Mandi Sorry haven't been chattty of late. broke his arm on Boxing day and needs very close supervision and takes longer to relax/destress after school so hands up I have had to resort to the box in the corner for a bit and now neeed to break this routine, will wait until cast comes off hopefully this week. On the medical front we started Dr Heards programme in December - gradually introducing various supplements etc one new one every 3 weeks as in the past I was over eager and 's bowels could not cope. Bowels are a lot better now and poos are actually in potty and not on the walls. Potty is plonked in front of telly for the performance which can be off putting to visitors but we feel progress needs celebrating!! FYI There are no surprises in Dr Heards recommendations but we are gradually introduing the following: Nystatin Biokult SuperNuThera (so far) next Nordic Naturals Epsom Salts MSM L-carnitine When I am ready I have the MB12 injections for 5 weeks - probably after half term to use before use by date. We will be discussing chelation in the future and possible antibiotics for clostridia if probiotics ineffective. is GFCF and yeast free. It is definitely a marathon and not a race. I have submitted new DLA for higher rate and hopefully mobility as well and have been encouraged to apply for direct payments with Social Services for respite which i might try to use for some part time ABA, is at Special School where 70% of kids on the spectrum. I am also active in local start up support group. As for he is very variable brilliant one

day and very difficult the next (really dendant on state of bowels that day) so it is difficult to truely assess the impact of supplements but we just feel we have to have faith and keep trying to level the playing field because the child we have is not the child that was meant to be. I was in denial about the MMR for a long time but we found some old video footage of at 12 months and at 16 months and it is clear that he changed, it was like a slap in the face and I think I am going thro' the anger phase with sways of dispondancy. Sorry this particular update is not uplifting, I'm sure you have all been here before........ But I do value this group and hope to be able to post more once further down the biomed line. Regards

February 6, 2006

Hi

Poor ! hope his arm gets better soon.

I finally plucked up the courage to look at Tom's old videos a few

months ago and I'm glad I did. Nobody else really knew him at that

age (pre 3) and it's good to see him reading and chatting and remind

ourselves that that little man is probably still in there.

Tom's also going through a very up and down phase. In fact, it's

lucky he's gorgeous because we have gone off him big time - biting,

breaking things (two bowls and a window this week), trashing rooms,

whining etc. He's a bit sniffly which doesn't help him. It's not

always a steady line of improvement, I'd say he's lost some skills

again but we're still plodding on. His guts are now lovely - but

he's back to non verbal again. Talk about swings and roundabouts.

Steph x

>

> Hi Mandi

>

> Sorry haven't been chattty of late. broke his arm on Boxing

day and needs very close supervision and takes longer to

relax/destress after school so hands up I have had to resort to the

box in the corner for a bit and now neeed to break this routine,

will wait until cast comes off hopefully this week.

>

> On the medical front we started Dr Heards programme in December -

gradually introducing various supplements etc one new one every 3

weeks as in the past I was over eager and 's bowels could not

cope. Bowels are a lot better now and poos are actually in potty and

not on the walls. Potty is plonked in front of telly for the

performance which can be off putting to visitors but we feel

progress needs celebrating!!

>

> FYI

>

> There are no surprises in Dr Heards recommendations but we are

gradually introduing the following:

>

> Nystatin

> Biokult

> SuperNuThera

> (so far)

> next

> Nordic Naturals

> Epsom Salts

> MSM

> L-carnitine

>

> When I am ready I have the MB12 injections for 5 weeks -

probably after half term to use before use by date.

>

> We will be discussing chelation in the future and possible

antibiotics for clostridia if probiotics ineffective. is GFCF

and yeast free. It is definitely a marathon and not a race.

>

> I have submitted new DLA for higher rate and hopefully mobility

as well and have been encouraged to apply for direct payments with

Social Services for respite which i might try to use for some part

time ABA, is at Special School where 70% of kids on the

spectrum. I am also active in local start up support group.

>

> As for he is very variable brilliant one day and very

difficult the next (really dendant on state of bowels that day) so

it is difficult to truely assess the impact of supplements but we

just feel we have to have faith and keep trying to level the playing

field because the child we have is not the child that was meant to

be. I was in denial about the MMR for a long time but we found some

old video footage of at 12 months and at 16 months and it is

clear that he changed, it was like a slap in the face and I think I

am going thro' the anger phase with sways of dispondancy.

>

> Sorry this particular update is not uplifting, I'm sure you have

all been here before........

>

> But I do value this group and hope to be able to post more once

further down the biomed line.

>

> Regards

>

February 7, 2006

,

I sympathize with you. I've been spending most of my not-at-work time

sleeping... maybe I need to up my dosage of Paxil.

I'm new here, but it's my understanding there's no obligation to

post. I think everyone here understands that taking care of yourself

takes priority.

Hope you find something to help with the pain!

-Carl

>

> Sorry I haven't been online in the pat few days, I hope everyone

is doing

> better than I am- emotionally AND physically. I have been having

problems with

> my back, last Tuesday I was in bed almost all day sleeping, the

pain was so

> bad. Wednesday I went to the doctor, and the nurse practitioner I

saw said

> that becuz of the way I was moving I prob'ly did something to the

back muscles.

> It's better one minute; I'm in excruciating pain the next. So

please forgive

> me if you don't hear from me for a few days. I am also going thru

emotional

> hell right now, and in some ways I have shut down. I am also

needing to catch

> up on homework, and I am needing to get my room cleaned.

>

> hhhuuugggsss love n support

>

February 7, 2006

hope your back feels better soon. i too am going through a bit of my own emotional hell so if you need to talk just email me. evelynbabygirlbear@... wrote: Sorry I haven't been online in the pat few days, I hope everyone is doing better than I am- emotionally AND physically. I have been having problems with my back, last Tuesday I was in bed almost all day sleeping, the pain was so bad. Wednesday I went to the doctor, and the nurse practitioner I saw said that becuz of the way I was moving I prob'ly did something to the back muscles. It's better one minute; I'm in excruciating pain the next. So please forgive me if you don't hear from me for

a few days. I am also going thru emotional hell right now, and in some ways I have shut down. I am also needing to catch up on homework, and I am needing to get my room cleaned. hhhuuugggsss love n support

Relax. virus scanning helps detect nasty viruses!

February 10, 2006

Hi Tina

Just to add to the stories of illness - is off school ill with a temperature (102), sickness, joint pain, headache etc. Half the kids at school are currently down with the bug so its to be expected I guess.

>>>>Same at Sams school

Apart from this curent illness, is continuing to make slow but steady progress.

We started a form of brushing in September which aims to eliminate primative reflexes by stimulating the central nervous system. has a strongly retained aysmmetric tonic neck reflex which affects eye tracking, handwriting, crossing the midline etc. He had real problems with handwriting, and couldn't form the letters - he would go round and round the circle of an 'a' for example whilst trying to suss out how to put the line in! He can now form all letters with easy and is doing nice joined up writing! His reading is also coming on, as has his concentration - from about 5 mins last year up to about 30 mins!!!! Apparently another retained reflex is the 'stimulus reflex' which makes babies turn towards any movement or noise - clearly if this is retained it has aserious impact on attention in the classroom. Another interesting thing has been a test which looks at the pupils of the eyes. We go in a dark room and the consultant shines a light on a wall close to and then moves it closer towards him. looks at me not the light. When we first had the assessment, 's pupils were very opened as you would expect in the dark, but even when he looked at the light (see stimulus reflex comment above!) his pupils stayed wide open and didn't contract as you would expect. Apparently this means he can be on an adreneline rush for alot of the time - which again affects concentration. After the 5 months of brushing to date, can now look at me and doesn't turn towards the light, and now his pupils contract properly, then open up again, then contract - as the Consultant noted, they are very active!

>>This is wonderful - I finally got round to making an appointment with this guy today - we go on 29th March - I told him I wanted an please LOL

As well as the brushing, we have started piracetam which is a 'cognitive enhancer' based on GABA. Our Doctor said it had helped another child with fine motor issues. has been really switched on since we started but its impossible to say whether the improvement come from the piracetam, the brushing, the continued chelation or the MB12.

>>>There have been various discussion on this on a few lists, either seems to help alot or not at all. Interesting. I am gonna get some for me and try it. I did try Vinpocetine years ago before trying it on Sam and got a nasty headache so I never did it. They have got to be around here somewhere....................out of date probably as usual.

We are just over a year into chelation using td_DMPS and are still following the Dr Buttar protocol, but we intend to add biochelate EDTA once things have settled down just to see if lead is still an issue. All the liver, kidney, blood works, minerals etc have remained within safety limits which is reassuring. We test every 10 weeks.

>>>This is good news, we are due testing soon

We have started MB12 every 2 days, we were previously every 3 days and also switched from TMG to DMG after hearing Dr Neubrander at Edinburgh. Language continues to improve and for example now he is ill, he can tell me exactly what is hurting and how he feels about it.

>>>which reminds yet again, I have DMG on my list of things to try third time lucky??

On Friday we were playing a card game called Stealing Bundles and he was winning as usual, I started pretend crying when he stole my bundle yet again and he said - 'Don't worry Mummy you can win next time, then when I smiled at him he exclaimed 'You were just acting weren't you, you're not really sad!' ONE OF THOSE WOW MOMENTS!!!!

>>>At least TRIPLE WOW I think

We have also started on LDN since Xmas. got a cold once we got to full dose but has been fine since then, til the flu bug struck yesterday!

Anyway, to summarise a long and waffely update - things going really well, more progress academically last term than in the whole of the previous year, great awareness, concentration, conversation, flexibility. Still a way to go but we are quietly optimistic

>>>Me too (wink)

Mandi x

February 13, 2006

Hi

Sorry haven't been chattty of late. broke his arm on Boxing day and needs very close supervision and takes longer to relax/destress after school so hands up I have had to resort to the box in the corner for a bit and now neeed to break this routine, will wait until cast comes off hopefully this week.

>>>OH such a stressful time - I've been there, Sam broke his leg in 2003, went 3 days before treatmetn as the A & E guy refused to listen to me. Luckily he only had the full leg on for 4 weeks and half leg for an extra one, he was running with the full leg plaster on though after 10 days - arghhhhhhhh

On the medical front we started Dr Heards programme in December - gradually introducing various supplements etc one new one every 3 weeks as in the past I was over eager and 's bowels could not cope. Bowels are a lot better now and poos are actually in potty and not on the walls. Potty is plonked in front of telly for the performance which can be off putting to visitors but we feel progress needs celebrating!!

>>>Absolutely, Sam moved straight from eating it, smearing it and posting in video player to the toilet but man, we celebrated good and proper!!!

FYI

There are no surprises in Dr Heards recommendations but we are gradually introduing the following:

Nystatin

Biokult

SuperNuThera

(so far)

Epsom Salts

MSM

L-carnitine

When I am ready I have the MB12 injections for 5 weeks - probably after half term to use before use by date.

We will be discussing chelation in the future and possible antibiotics for clostridia if probiotics ineffective. is GFCF and yeast free. It is definitely a marathon and not a race.

>>>Yep, but once that becomes obvious, because we all start hoping we hit the magic bullett or that there even is one, then you knuckle downm appreciate the little things and keep on keeping on

I have submitted new DLA for higher rate and hopefully mobility as well

>>>keep after them and make sure that when you get it you let the tax credits people know if you are able to claim because they go up in line with the DLA. Every little helps

and have been encouraged to apply for direct payments with Social Services for respite which i might try to use for some part time ABA,

>>>Don't tell them thats what you are doing - just call them carers. My direct payments money pays for SALT

is at Special School where 70% of kids on the spectrum. I am also active in local start up support group.

>>>Great work - can we send some Flyers for Treating Autism when we have them printed? At the moment I am printing them and it takes ages cox my dying printer can't cope with more than one sheet of card at a time

As for he is very variable brilliant one day and very difficult the next (really dendant on state of bowels that day) so it is difficult to truely assess the impact of supplements but we just feel we have to have faith and keep trying to level the playing field because the child we have is not the child that was meant to be. I was in denial about the MMR for a long time but we found some old video footage of at 12 months and at 16 months and it is clear that he changed, it was like a slap in the face and I think I am going thro' the anger phase with sways of dispondancy.

>>>Oh my, I rember doing that like it was yesterday, seeing my 12 month old looking, smiling, saying his words, blowing raspberries and wondering where the hell he went when I wasn't looking................I think about 18 months after Dx

Sorry this particular update is not uplifting, I'm sure you have all been here before........

But I do value this group and hope to be able to post more once further down the biomed line.

>>Please do, but you can post before that if you just want to whinge, witter and wail - thats what we are here for

Mandi x

March 4, 2006

You too are working through the process of elimination to find the problems

is having. I really do feel for you. We are doing much of the same.

Although has been diagnosed with JRA she has had a seizure disorder for

over six years and now new problems that we can not seem to diagnose. The

waiting for the unknown is the hardest thing to do besides watching your child

in

pain. At least with she is old enough to tell us where she hurts and

describe her pains. I will keep you all in my prayers.

Veri & Jaye 12 poly

March 4, 2006

The Pediatric Rheumy doctor felt that was in too much pain to have JRA and

had a Pediatric Hematology/Oncology look at him. She too felt that he was too

sick acting to have arthritis so once again another blood test and an ultrasound

was done on him to check for tumors/masses and see if he's showing any signs of

leukemia. His liver and spleen or pancreas were enlarged and he's more anemic

than he was a week ago. The good news is that the test didn't show any signs of

leukemia as of yet but is going to have the bone marrow test on Monday morning

at 9:00. I really don't know at this point what to think but my heart " hurt " .

Never in my wildest dream would I have thought he might have " cancer " . I guess

right now we just have to pray for . Did any of your kids acted sickly but

still had JRA? Well just want to let you know what happened...will give you the

updates on Monday.

veristroud@... wrote: We had our appointment with the endocrinologist

today. He does not think

's problems are thyroid related but did take more blood to be sure he can

completely rule that out. After seeing 's foot purple for nearly a full

day I again called her neurologist to see if there was any chance her seizure

med's could be causing some of her problems. She has been on them for so

long and I just wonder. When he called me back last night he has decided to

wean her off of both of her seizure med's. She has not had a seizure for several

years and he was planning to start weaning her off them in April at our next

appt. any way. So he decided to start now. He does not think these med's are

the cause of her problems but does think it is possible that they could

contribute to the JRA problems. So we begin a fairly rapid decrease in her

meds.

She has been on Depakote for six years and we will take her off in 10 days.

I trust her neurologist completely but it is a bit scary taking her off it

that quickly. As long as she tolerates that well we will then begin to wean

her off of her Keppra. The Ped. office called back today and we do not know

when she will get into the oncologist yet but should know something by Monday.

With all the troubles we have been having they seem to think we should be

able to get in real soon. has had two good days compared to the last

few

weeks. She is still very stiff and sore but her smile is back and she has a

bit more energy then she has for a while. Every little bit is encouraging. I

do ask for prayers for her as she goes off the seizure med's and as we go to

see the oncologist.

Veri & Jaye 12 poly

March 4, 2006

I am praying that it is not leukemia! Unfortunately there have been many cases

where patients were first diagnosed with JRA and it ends up being leukemia and

vice versa, as strange as it sounds I am praying that it is JRA. Leukemia (acute

lymphoblastic leukemia) however has a 95% cure rate, my prayers are that what

has is not leukemia. Systemic kids can be very sick during a flare in major

amounts of pain, with blood work that looks similar to leukemic kids, so there

is hope that it is JRA. Although the biggest hope of all is that its some fluke

and your little boy will have no chronic disease.

Christene Breda <cjb_0117@...> wrote: The Pediatric Rheumy doctor felt

that was in too much pain to have JRA and had a P ediatric

Hematology/Oncology look at him. She too felt that he was too sick acting to

have arthritis so once again another blood test and an ultrasound was done on

him to check for tumors/masses and see if he's showing any signs of leukemia.

His liver and spleen or pancreas were enlarged and he's more anemic than he was

a week ago. The good news is that the test didn't show any signs of leukemia as

of yet but is going to have the bone marrow test on Monday morning at 9:00. I

really don't know at this point what to think but my heart " hurt " . Never in my

wildest dream would I have thought he might have " cancer " . I guess right now we

just have to pray for . Did any of your kids acted sickly but still had

JRA? Well just want to let you know what happened...will give you the updates

on Monday.