new member

[Guest guest]

Regina, welcome to the board. You've come to the right place to find

answers. First, and foremost, you mentioned that your mom had bad

reactions to the anti-psychotic drugs -- I hope that means she's off

of them now. When you said that after taking the drugs she could

hardly walk or speak - it brought memories back about my mother. She

was in a hospital for 3 weeks and one of the medications she received

there was Risperdal. In just 4 weeks on Risperdal she went from

shuffling with a cane to being wheelchair bound. We were told it

would be temporary - that was in October 2005 - and mom is still in a

wheelchair. I wish we didn't listen to the " experts " who said it was

temporary and removed her from those drugs sooner! Had I listened to

my gut, I would have taken her off those meds when she had the first

signs of becoming wheelchair bound (3 weeks on Risperdal). In

reality - had I listened to my gut, mom never would have stayed in

that hospital in the first place. UGH! I hate looking back to that

time... Neverending guilt (FALSE GUILT, FALSE GUILT VICTORIA)

(sorry... back to you...)

I would guess that your mother is one of the 50% of those with LBD

who are highly sensitive to drugs. With that said; the best advice

for any medication is to go low, go slow. And the best approach is

one at a time... so you know if that particulary med will be a

good/bad med for your mom.

If you can talk your mom out of the scary hallucinations that's the

best approach. Just validating what she sees is good for her. In my

mother's case she sees my deceased father, children ( " two beautiful

redhaired boys " , and animals (a cat mostly). When she mentions any of

these hallucinations I look toward where she sees the hallucination

and ask what does it look like. She explains. I validate. Then I

quietly change the subject. One time when I visited she said, " Guess

who I saw? " And I asked who. " Bill! " (my dad) and I said, " Really?

That must have been nice to see him! " And she said, " You bet! " Then

we started talking about something else. These hallucinations are as

real to them as looking at you or I. So we need to validate them.

Then discreetly change the subject.

Regina, continue to use this board with all your questions or

concerns. We're here for each other during this difficult LBD roller

coaster ride.

; loving daughter of Maureen of Boston, MA; finally diagnosed

with LBD on 2/06 after also being diagnosed with everything from AD

to Vascular Dementia caused by mini strokes to Binswengers...; was

victim to rapid decline from Risperidone (or combination of

Risperidone with other drugs OR possibly received another " bad drug "

when she was observed/tested in a hospital in 10/05); in a NH since

11/05. Update: on antidepressant Celexa, 20mg (still teary, but not

as weepy) and as of 4/21 on Exelon.

Visit the LBDCaregivers board on the web:

http://groups.yahoo.com/group/LBDcaregivers/

(See files, databases, photos of members, and search previous posts)

>

> Hi Everyone,

>

> I am new to this group and this is my first message. My mother

(83)

> was diagnosed this week with LBD. She began experiencing

> hallucinations several months ago. The Geriatric Psychiatrist

> prescribed Risperdal, Abilify and Seroquel. She had bad reactions

> to each of them. She could hardly walk or speak, she drooled and

> was confused. The Neurologist has taken numerous blood tests, an

> MRI, EEG and PET Scan. The results of the PET Scan, her

> hallucinations and the bad reactions to the anti-psychotic drugs

all

> point to LBD.

>

> Other then the hallucinations she is pretty with it. Nothing like

> what I experienced with my Dad who was diagnosed with Alzheimer's

> and Frontal-Temporal Dementia. Mom sees dogs, cats, children,

> babies, bodies, men and women. She is more and more uncomfortable

> in her own apartment. She has a 24 hour home aide and just started

> taking 1.5 mg of Exelon a day. I don't expect the Exelon to have

> any effect on the hallucinations until she is taking a larger

dose.

> What, if anything, can I do or say to calm her when she thinks

there

> is a man sitting in her chair? I've tried " I don't see anyone "

> and " there's nobody there " . Of course, to her his is very real.

> She is now talking to the " man " and is afraid that he will take

> something from the apartment.

>

> Has anyone had a similar experience or suggestions?

>

> Mom is also taking Lexapro, Lorazepam, Synthroid and Diovan.

>

> Thank you.

>

[Guest guest]

Welcome Buffy!

We are all here to help. This is a great group of people with a lot of experience in recovery as well as many learning so much from this group. Even those of us who are fully educated, learn something new every day. Bless you and your family for all that you have been through. As we all say, Bio med is not a race, it's a marathon. It's a gradual process and can involve lots of trial and error, but you must try to succeed. Your story of decline in your child's health after each vaccination is shared widely among parents around the globe. I highly suggest you visit www.generationrescue.org, www.tacanow.org, as well as our group Together In Autism @ www.togetherinautism.org. I also suggest you read "Changing The Course of Autism" Foreword by . Again, welcome and please do not hesitate to as us any questions.

Sincerely,

Shauna-Founder

Together In Autism

www.togetherinautism.org

ONE STOP FOR ALL YOUR AUTISM NEEDS. FREE NATIONAL/INTERNATIONALRESOURCE. SPEEDS PROCESS FROM DIAGNOSIS TO BEING INFORMED, STAYINGINFORMED, RAISING AWARENESS, CONNECTING FAMILIES, ALLOWING THEM TOSHARE EXPERIENCES AND HELPING THOSE WITH AUTISM THRIVE. ALL TOPICSARE ON THE TABLE... WE DISCUSS EVERYTHING FROM BIOMEDICAL TREATMENTS,THERAPIES, VACCINES, RECOVERY, HOPE, OUR FRUSTRATIONS, JOYS AND OURPROGRESS AND MUCH MORE... PLEASE FEEL FREE TO VISIT OUR SITE, JOIN OUR MAILING LIST AND YAHOO GROUP.

WE ARE HERE TO HELP YOU ON YOUR JOURNEY.

Here's a link to our Yahoo Group:

http://health.groups.yahoo.com/group/AUTISM-togetherinautismorg/?v=1 & t=search & ch=web & pub=groups & sec=group & slk=1

Play online games for FREE at Games.com! All of your favorites, no registration required and great graphics – check it out!

[Guest guest]

My prayers to Tristan & your family. He has done awesome!. What a fighter!. Please read the treatment bible "Children with Starving Brains", by Jaquelyn McCandless, MD. Also, find a good DAN Doc, & go to the TACA website. Good luck with everything. Shan

Subject: New memberTo: mb12 valtrex Date: Tuesday, October 28, 2008, 6:09 PM

My name is Buffy Krajewski and my 11 yr old son, Tristan, is autistic. Our history and diagnosis is far from usual so please bare with me while I give you a little background.

Tristan was born via emergency c-section, 7 weeks premature, when a routine sonogram showed an large abdominal mass. The mass was so large the doctors couldn’t determine where it was stemming from. It was in contact with everything in his torso and had pushed him heart to the wrong side of his chest. He had his first surgery at 3 days old to remove his primary tumor which ended up originating from his right adrenal gland but by this time he had more “spots” in his right lung as well. It took us a month to get a diagnosis because nobody had seen this before, especially in utero. It turned out he had an extremely rare and extremely aggressive cancer called adrenocortical carcinoma. The cancer had indeed spread to his right lung so he underwent a second surgery o remove 40% of the lung with several tumors. Next we endured a year of chemo and although the chance of recurrence was

about 98%, he never had one. This past February marked 10 years in remission! But it has been a long bumpy road. His chemo caused his thyroid to stop working and until recently we blamed his chemo for his epilepsy as well. Both eventually subsided and went away completely. His chemo also killed his one remaining adrenal gland leaving him with another potentially fatal disease called ’s Disease which requires lifelong steroids and constant close monitoring. Tristan has been developmentally delayed across the board. Speech, vision, fine motor, gross motor, cognitive. He has focus problems and attention problems. Now having said all of that, he was put into early intervention at 6 months old and began all services at that time. I thank God we had a wonderful special ed teacher who agreed with me that there was a spark in Tristan’s eyes at all time. No matter how unresponsive he

was I ALWAYS knew he was absorbing everything and just couldn’t spit it back out. Because of this we did intensive therapy with him with his therapist as well as on our own. Looking back now we were doing ABA therapy before there was ABA therapy. The meltdowns he had always had became worse and worse and by kindergarten there were big problems. I KNEW he was autistic and nobody would listen or agree with me. Because of his medical issues everything got blamed on his chemo and everything else that was going on. I persisted and fought our school psychologist and eventually got an eval w/ a doctor. They told us he was PDD-NOS and started him on Prozac w/ no plan of action. He had an allergic reaction to the Prozac so they switched him to Paxil but I said no. We lived in NY at the time and were in the process of moving to PA so we decided to wait until we got here. I had him seen by a doctor here who

said he was ADD and put him on Adderall. It helped with attention and focus for a little while but he was eventually switched to Straterra which he is still on now. I had him evaluated again by a psychologist and my instinct was right at 9 yrs old he was FINALLY diagnosed on the spectrum. He is higher functioning and I credit that to the therapy we were doing years ago without knowing it.

So that brings me to where we are now. I have fought and fought for this child, gone against doctors, been laughed at, and told I’m just a mom not a doctor, and now I am ready for this fight! I have tried things like fish oil before and it helped a lot but then he was put on meds for the add so we discontinued the fish oil. I know it helped. And as I started to get this nagging feeling again that we should be looking at alternatives to meds McCarthy started talking about her son. I’ve read both books now and am floored. We have always attributed everything to Tristan’s cancer and I am sure it didn’t help but I am not convinced that his vaccines are to blame. Tristan was in NICU for 2 months and before he was released he was developing. Before they would release him, he HAD to get his vaccines so he did. A week later he began having seizures. Just small petit

mal seizures at first. He did continue to develop. He made eye contact, he babbled and cooed, and he started holding his head up. Then he got more vaccines and started having grand mal seizures. And he lost everything. It was like he went into a coma for months. He was never the same again. There is such a definitive timeline when we look at videos and pictures. So now I am on a new path as far as diet, supplements, Detox, and vitamins goes but I feel very overwhelmed by all the info and don’t know where or how to start. I am hoping that is where you come in! Thank you in advance for any and all help you can provide!!!!!

Buffy Krajewski

[Guest guest]

Let me start by asking this: I understand that DAN doctors are specialized

in recovering kids on the spectrum but do we HAVE to use a DAN doctor. As I am

sure so many in our situation know, money is a problem. We are stretched

so thin to begin with that I am trying to figure out how to get around insurance

ect. We have a WONDERFUL family doctor. We have only started seeing

her in recent years but she is phenomenal. She has helped us with so many

other issues and taken charge of many other situations medically when we were

getting nowhere with other specialist in regards to Tristan’s other

medical issues. I was planning on making an appointment with her to

discuss some of the information I have been reading to try and get her help as

well. I am assuming that the DAN doctor’s aren’t covered by

insurance but wondered what Dr. Henning (the family doctor) could do from her

end if I asked her to get on board. I trust her explicitly. I am

wondering if she was the one ordering any kind of blood work or testing if it

would be covered by insurance. My mind is just spinning. Cancer, I

know the ins and outs of but with this I feel like I am taking in so much

information it is so overwhelming. I am assuming that the first thing to

do would be some kind of testing to see if Tristan has high levels of metals,

food sensitivities, and things of this nature but is there somewhere I can get

a list of what he should be tested for or what we should be checking as a

starting point? Thanks to everyone for your warm welcome. And

thanks in advance for putting up with all the questions I KNOW I will be

asking. LOL!

Buffy Krajewski

Arbonne International

Executive District Manager

Independent Consultant #16447105

www.nevergiveup.myarbonne.com

From:

mb12 valtrex [mailto:mb12 valtrex ] On Behalf

Of shannon wood

Sent: Tuesday, October 28, 2008 2:37 PM

To: mb12 valtrex

Subject: [sPAM]Re: New member

My prayers to Tristan & your family. He has done awesome!.

What a fighter!. Please read the treatment bible " Children with Starving

Brains " , by Jaquelyn McCandless, MD. Also, find a good DAN Doc, & go

to the TACA website. Good luck with everything. Shan

From: Buffy Krajewski

Subject: New member

To: mb12 valtrex

Date: Tuesday, October 28, 2008, 6:09 PM

My

name is Buffy Krajewski and my 11 yr old son, Tristan, is autistic. Our

history and diagnosis is far from usual so please bare with me while I give

you a little background.

Tristan was born via emergency c-section, 7 weeks

premature, when a routine sonogram showed an large abdominal mass. The

mass was so large the doctors couldn’t determine where it was stemming

from. It was in contact with everything in his torso and had pushed him

heart to the wrong side of his chest. He had his first surgery at 3

days old to remove his primary tumor which ended up originating from his

right adrenal gland but by this time he had more “spots” in his

right lung as well. It took us a month to get a diagnosis because

nobody had seen this before, especially in utero. It turned out he had

an extremely rare and extremely aggressive cancer called adrenocortical

carcinoma. The cancer had indeed spread to his right lung so he

underwent a second surgery o remove 40% of the lung with several

tumors. Next we endured a year of chemo and although the chance of recurrence

was about 98%, he never had one. This past February marked 10 years in

remission! But it has been a long bumpy road. His chemo caused

his thyroid to stop working and until recently we blamed his chemo for his

epilepsy as well. Both eventually subsided and went away

completely. His chemo also killed his one remaining adrenal gland

leaving him with another potentially fatal disease called ’s

Disease which requires lifelong steroids and constant close monitoring.

Tristan has been developmentally delayed across the board. Speech,

vision, fine motor, gross motor, cognitive. He has focus problems and

attention problems. Now having said all of that, he was put into early

intervention at 6 months old and began all services at that time. I thank

God we had a wonderful special ed teacher who agreed with me that there was a

spark in Tristan’s eyes at all time. No matter how unresponsive

he was I ALWAYS knew he was absorbing everything and just couldn’t spit

it back out. Because of this we did intensive therapy with him with his

therapist as well as on our own. Looking back now we were doing ABA

therapy before there was ABA therapy. The meltdowns he had always had

became worse and worse and by kindergarten there were big problems. I

KNEW he was autistic and nobody would listen or agree with me. Because

of his medical issues everything got blamed on his chemo and everything else

that was going on. I persisted and fought our school psychologist and

eventually got an eval w/ a doctor. They told us he was PDD-NOS and started

him on Prozac w/ no plan of action. He had an allergic reaction to the

Prozac so they switched him to Paxil but I said no. We lived in NY at

the time and were in the process of moving to PA so we decided to wait until

we got here. I had him seen by a doctor here who said he was ADD and

put him on Adderall. It helped with attention and focus for a little

while but he was eventually switched to Straterra which he is still on

now. I had him evaluated again by a psychologist and my instinct was

right at 9 yrs old he was FINALLY diagnosed on the spectrum. He is

higher functioning and I credit that to the therapy we were doing years ago

without knowing it.

So that brings me to where we are now. I have

fought and fought for this child, gone against doctors, been laughed at, and

told I’m just a mom not a doctor, and now I am ready for this

fight! I have tried things like fish oil before and it helped a lot but

then he was put on meds for the add so we discontinued the fish oil. I

know it helped. And as I started to get this nagging feeling again that

we should be looking at alternatives to meds McCarthy started talking

about her son. I’ve read both books now and am floored. We

have always attributed everything to Tristan’s cancer and I am sure it

didn’t help but I am not convinced that his vaccines are to

blame. Tristan was in NICU for 2 months and before he was released he

was developing. Before they would release him, he HAD to get his

vaccines so he did. A week later he began having seizures. Just

small petit mal seizures at first. He did continue to develop. He

made eye contact, he babbled and cooed, and he started holding his head

up. Then he got more vaccines and started having grand mal seizures.

And he lost everything. It was like he went into a coma for

months. He was never the same again. There is such a definitive

timeline when we look at videos and pictures. So now I am on a new path

as far as diet, supplements, Detox, and vitamins goes but I feel very

overwhelmed by all the info and don’t know where or how to start.

I am hoping that is where you come in! Thank you in advance for any and

all help you can provide!!!!!

Buffy Krajewski

[Guest guest]

Buffy -

I, too, started my journey with my son at 6 months old due to a

regression after his UPJ obstruction surgery. We've been doing therapy

for 5.5 years plus countless doctors visits to rule everything out (at

least that is what happened). Looking back at all that I know now,

they were looking for the reasons for his delay including

metabolic/mitochondrial issues. He shows signs of Mito issues and has

responded well to treating that most recently. He is also a

non-vaccinated child as well.

If you have an opened minded doctor have her read through Dr.

McCandless' book, Dr. Jepsons book, the unofficial DAN! protocol book -

and there are countless others.

Diet is the first step - that's the easiest one to do and to start

tracking the changes in your childs behavior/sleep. I was just at the

DAN! conference and that was the resounding message that everyone said

- diet is key. Start with GF/CF and then move on from there as there

are many other types of diets. Once you start seeing changes with the

diet changes, it makes you move on. And, the suggestion is to at least

keep on it for 6 months or longer before you say it does not work.

Casein exits the system in 4-6 days but gluten can stay in the system

for a few months. And, once you get the hang of it - it just becomes a

part of your lifestyle.

As far as any testing that you could do - most testing needs to be

ordered by a doctor.

Laureen

Quoting Buffy Krajewski :

> Let me start by asking this: I understand that DAN doctors are specialized

> in recovering kids on the spectrum but do we HAVE to use a DAN doctor. As I

> am sure so many in our situation know, money is a problem. We are stretched

> so thin to begin with that I am trying to figure out how to get around

> insurance ect. We have a WONDERFUL family doctor. We have only started

> seeing her in recent years but she is phenomenal. She has helped us with so

> many other issues and taken charge of many other situations medically when

> we were getting nowhere with other specialist in regards to Tristan's other

> medical issues. I was planning on making an appointment with her to discuss

> some of the information I have been reading to try and get her help as well.

> I am assuming that the DAN doctor's aren't covered by insurance but wondered

> what Dr. Henning (the family doctor) could do from her end if I asked her to

> get on board. I trust her explicitly. I am wondering if she was the one

> ordering any kind of blood work or testing if it would be covered by

> insurance. My mind is just spinning. Cancer, I know the ins and outs of

> but with this I feel like I am taking in so much information it is so

> overwhelming. I am assuming that the first thing to do would be some kind

> of testing to see if Tristan has high levels of metals, food sensitivities,

> and things of this nature but is there somewhere I can get a list of what he

> should be tested for or what we should be checking as a starting point?

> Thanks to everyone for your warm welcome. And thanks in advance for putting

> up with all the questions I KNOW I will be asking. LOL!

>

>

>

> Buffy Krajewski

>

> Arbonne International

>

> Executive District Manager

> Independent Consultant #16447105

>

> www.nevergiveup.myarbonne.com

>

>

>

>

>

>

>

> From: mb12 valtrex [mailto:mb12 valtrex ] On

> Behalf Of shannon wood

> Sent: Tuesday, October 28, 2008 2:37 PM

> To: mb12 valtrex

> Subject: [sPAM]Re: New member

>

>

>

>

> My prayers to Tristan & your family. He has done awesome!. What a fighter!.

> Please read the treatment bible " Children with Starving Brains " , by Jaquelyn

> McCandless, MD. Also, find a good DAN Doc, & go to the TACA website. Good

> luck with everything. Shan

>

>

>

>

> Subject: New member

> To: mb12 valtrex

> Date: Tuesday, October 28, 2008, 6:09 PM

>

> My name is Buffy Krajewski and my 11 yr old son, Tristan, is autistic. Our

> history and diagnosis is far from usual so please bare with me while I give

> you a little background.

>

> Tristan was born via emergency c-section, 7 weeks premature, when a routine

> sonogram showed an large abdominal mass. The mass was so large the doctors

> couldn't determine where it was stemming from. It was in contact with

> everything in his torso and had pushed him heart to the wrong side of his

> chest. He had his first surgery at 3 days old to remove his primary tumor

> which ended up originating from his right adrenal gland but by this time he

> had more " spots " in his right lung as well. It took us a month to get a

> diagnosis because nobody had seen this before, especially in utero. It

> turned out he had an extremely rare and extremely aggressive cancer called

> adrenocortical carcinoma. The cancer had indeed spread to his right lung

> so he underwent a second surgery o remove 40% of the lung with several

> tumors. Next we endured a year of chemo and although the chance of

> recurrence was about 98%, he never had one. This past February marked 10

> years in remission! But it has been a long bumpy road. His chemo caused

> his thyroid to stop working and until recently we blamed his chemo for his

> epilepsy as well. Both eventually subsided and went away completely. His

> chemo also killed his one remaining adrenal gland leaving him with another

> potentially fatal disease called 's Disease which requires lifelong

> steroids and constant close monitoring. Tristan has been developmentally

> delayed across the board. Speech, vision, fine motor, gross motor,

> cognitive. He has focus problems and attention problems. Now having said

> all of that, he was put into early intervention at 6 months old and began

> all services at that time. I thank God we had a wonderful special ed

> teacher who agreed with me that there was a spark in Tristan's eyes at all

> time. No matter how unresponsive he was I ALWAYS knew he was absorbing

> everything and just couldn't spit it back out. Because of this we did

> intensive therapy with him with his therapist as well as on our own.

> Looking back now we were doing ABA therapy before there was ABA therapy.

> The meltdowns he had always had became worse and worse and by kindergarten

> there were big problems. I KNEW he was autistic and nobody would listen or

> agree with me. Because of his medical issues everything got blamed on his

> chemo and everything else that was going on. I persisted and fought our

> school psychologist and eventually got an eval w/ a doctor. They told us he

> was PDD-NOS and started him on Prozac w/ no plan of action. He had an

> allergic reaction to the Prozac so they switched him to Paxil but I said no.

> We lived in NY at the time and were in the process of moving to PA so we

> decided to wait until we got here. I had him seen by a doctor here who said

> he was ADD and put him on Adderall. It helped with attention and focus for

> a little while but he was eventually switched to Straterra which he is still

> on now. I had him evaluated again by a psychologist and my instinct was

> right at 9 yrs old he was FINALLY diagnosed on the spectrum. He is higher

> functioning and I credit that to the therapy we were doing years ago without

> knowing it.

>

> So that brings me to where we are now. I have fought and fought for this

> child, gone against doctors, been laughed at, and told I'm just a mom not a

> doctor, and now I am ready for this fight! I have tried things like fish

> oil before and it helped a lot but then he was put on meds for the add so we

> discontinued the fish oil. I know it helped. And as I started to get this

> nagging feeling again that we should be looking at alternatives to meds

> McCarthy started talking about her son. I've read both books now and

> am floored. We have always attributed everything to Tristan's cancer and I

> am sure it didn't help but I am not convinced that his vaccines are to

> blame. Tristan was in NICU for 2 months and before he was released he was

> developing. Before they would release him, he HAD to get his vaccines so he

> did. A week later he began having seizures. Just small petit mal seizures

> at first. He did continue to develop. He made eye contact, he babbled and

> cooed, and he started holding his head up. Then he got more vaccines and

> started having grand mal seizures. And he lost everything. It was like he

> went into a coma for months. He was never the same again. There is such a

> definitive timeline when we look at videos and pictures. So now I am on a

> new path as far as diet, supplements, Detox, and vitamins goes but I feel

> very overwhelmed by all the info and don't know where or how to start. I am

> hoping that is where you come in! Thank you in advance for any and all help

> you can provide!!!!!

>

> Buffy Krajewski

>

>

>

>

>

>

>

>

[Guest guest]

Yes, some of the things can be done by your doc.  Some DANs do take insurance, though.  You just have to ask around to find one.  Some labs will be covered but some of the more detailed ones will not.  Great Plains lab takes BCBS if you have that so just about all your tests would be covered there if you do.  If you really want to have your doc help you, definitely have her read Children with Starving Brains and Changing the Course of Autism.  Also Enzymes for Autism and Biomedical Interventions for Autism and PDD.  Because of the chemo, I would *highly* suggest doing plenty of immune work.  Pull all viral titers that you can (which can be done through your doc).  You want HHV1-6 and all vaccine titers.  I would bet money you have an immune kid and could stand to have antivirals.  If you can convince her to go, a DAN conference would do her wonders in helping you.Good luck and you definitely have a great fighter of a son! Cheryl~Check out my blog:  http://www.gryffins-tail.blogspot.com/ Let me start by asking this: I understand that DAN doctors are specialized in recovering kids on the spectrum but do we HAVE to use a DAN doctor. As I am sure so many in our situation know, money is a problem.  We are stretched so thin to begin with that I am trying to figure out how to get around insurance ect.  We have a WONDERFUL family doctor.  We have only started seeing her in recent years but she is phenomenal.  She has helped us with so many other issues and taken charge of many other situations medically when we were getting nowhere with other specialist in regards to Tristan’s other medical issues.  I was planning on making an appointment with her to discuss some of the information I have been reading to try and get her help as well.  I am assuming that the DAN doctor’s aren’t covered by insurance but wondered what Dr. Henning (the family doctor) could do from her end if I asked her to get on board.  I trust her explicitly.  I am wondering if she was the one ordering any kind of blood work or testing if it would be covered by insurance.  My mind is just spinning.  Cancer, I know the ins and outs of but with this I feel like I am taking in so much information it is so overwhelming.  I am assuming that the first thing to do would be some kind of testing to see if Tristan has high levels of metals, food sensitivities, and things of this nature but is there somewhere I can get a list of what he should be tested for or what we should be checking as a starting point?  Thanks to everyone for your warm welcome.  And thanks in advance for putting up with all the questions I KNOW I will be asking.  LOL! Buffy KrajewskiArbonne InternationalExecutive District ManagerIndependent Consultant #16447105www.nevergiveup.myarbonne.com   From: mb12 valtrex [mailto:mb12 valtrex ] On Behalf Of shannon woodSent: Tuesday, October 28, 2008 2:37 PMTo: mb12 valtrex Subject: [sPAM]Re: New member My prayers to Tristan & your family. He has done awesome!. What a fighter!. Please read the treatment bible "Children with Starving Brains", by Jaquelyn McCandless, MD. Also, find a good DAN Doc, & go to the TACA website. Good luck with everything. Shan--- On Tue, 10/28/08, Buffy Krajewski  wrote:Subject: New memberTo: mb12 valtrex Date: Tuesday, October 28, 2008, 6:09 PM My name is Buffy Krajewski and my 11 yr old son, Tristan, is autistic.  Our history and diagnosis is far from usual so please bare with me while I give you a little background. Tristan was born via emergency c-section, 7 weeks premature, when a routine sonogram showed an large abdominal mass.  The mass was so large the doctors couldn’t determine where it was stemming from.  It was in contact with everything in his torso and had pushed him heart to the wrong side of his chest.  He had his first surgery at 3 days old to remove his primary tumor which ended up originating from his right adrenal gland but by this time he had more “spots” in his right lung as well.  It took us a month to get a diagnosis because nobody had seen this before, especially in utero.  It turned out he had an extremely rare and extremely aggressive cancer called adrenocortical carcinoma.   The cancer had indeed spread to his right lung so he underwent a second surgery o remove 40% of the lung with several tumors.  Next we endured a year of chemo and although the chance of recurrence was about 98%, he never had one.  This past February marked 10 years in remission!  But it has been a long bumpy road.  His chemo caused his thyroid to stop working and until recently we blamed his chemo for his epilepsy as well.  Both eventually subsided and went away completely.  His chemo also killed his one remaining adrenal gland leaving him with another potentially fatal disease called ’s Disease which requires lifelong steroids and constant close monitoring.  Tristan has been developmentally delayed across the board.  Speech, vision, fine motor, gross motor, cognitive.  He has focus problems and attention problems.  Now having said all of that, he was put into early intervention at 6 months old and began all services at that time.  I thank God we had a wonderful special ed teacher who agreed with me that there was a spark in Tristan’s eyes at all time.  No matter how unresponsive he was I ALWAYS knew he was absorbing everything and just couldn’t spit it back out.  Because of this we did intensive therapy with him with his therapist as well as on our own.  Looking back now we were doing ABA therapy before there was ABA therapy.  The meltdowns he had always had became worse and worse and by kindergarten there were big problems.  I KNEW he was autistic and nobody would listen or agree with me.  Because of his medical issues everything got blamed on his chemo and everything else that was going on.  I persisted and fought our school psychologist and eventually got an eval w/ a doctor. They told us he was PDD-NOS and started him on Prozac w/ no plan of action.  He had an allergic reaction to the Prozac so they switched him to Paxil but I said no.  We lived in NY at the time and were in the process of moving to PA so we decided to wait until we got here.  I had him seen by a doctor here who said he was ADD and put him on Adderall.  It helped with attention and focus for a little while but he was eventually switched to Straterra which he is still on now.  I had him evaluated again by a psychologist and my instinct was right at 9 yrs old he was FINALLY diagnosed on the spectrum.  He is higher functioning and I credit that to the therapy we were doing years ago without knowing it.So that brings me to where we are now.  I have fought and fought for this child, gone against doctors, been laughed at, and told I’m just a mom not a doctor, and now I am ready for this fight!  I have tried things like fish oil before and it helped a lot but then he was put on meds for the add so we discontinued the fish oil.  I know it helped.  And as I started to get this nagging feeling again that we should be looking at alternatives to meds McCarthy started talking about her son.  I’ve read both books now and am floored.  We have always attributed everything to Tristan’s cancer and I am sure it didn’t help but I am not convinced that his vaccines are to blame.  Tristan was in NICU for 2 months and before he was released he was developing.  Before they would release him, he HAD to get his vaccines so he did.  A week later he began having seizures.  Just small petit mal seizures at first.  He did continue to develop.  He made eye contact, he babbled and cooed, and he started holding his head up.  Then he got more vaccines and started having grand mal seizures.  And he lost everything.  It was like he went into a coma for months.  He was never the same again.  There is such a definitive timeline when we look at videos and pictures.  So now I am on a new path as far as diet, supplements, Detox, and vitamins goes but I feel very overwhelmed by all the info and don’t know where or how to start.  I am hoping that is where you come in!  Thank you in advance for any and all help you can provide!!!!!Buffy Krajewski  

[Guest guest]

Hi, I'm new to the board so I want to introduce myself.I have Hashimoto for 17 years, and have been diagnozed with Fibromyalgia and CFS.My current doctor says that all the damage is caused by the thyroid antibodies and the only solution is to have a total thyroidectomy to get rid of the antibodies. I can't decide if this surgery is a cure for real, or if this would be let me more weak. So I'm looking for more answers.Thank you,Carmen

[Guest guest]

Hi Carmen - I haven't heard of a thyroidectomy as being a way to get rid of

anti-thyroid antibodies. I have heard from people on this board and others over

the years about additional problems and complications they have after having

their thyroids removed. My opinion is surgery should only be a very last resort

and only in cases where it's the only alternative. You might want to join

thyroidectomy groups to learn what patients go through or maybe someone who has

had one will chime in here.

>

> Hi, I'm new to the board so I want to introduce myself.

>

> I have Hashimoto for 17 years, and have been diagnozed with Fibromyalgia and

CFS.

>

> My current doctor says that all the damage is caused by the thyroid antibodies

and the only solution is to have a total thyroidectomy to get rid of the

antibodies. I can't decide if this surgery is a cure for real, or if this would

be let me more weak. So I'm looking for more answers.

>

> Thank you,

> Carmen

>