Re: 1st DAN! Doctor appt. today - My experience

[Guest guest]

Comments within:

> hey, had my first DAN! appt. today...my son is 3.3 years, diagnosed

> with autism, non-verbal.

>

> Basically, the doctor did not give me any more details than one can

> find here on in the internet. He just said, well, usually we start

> restricting milk products first and to whean him off gluten and

> casein and start him on MB12 injections.

>

Which is true. I wouldn't want to see a doctor just start

prescribing stuff without knowing the labs.

> He has a great success rate

> with only that in his office. Then, if that did not help within about

> 4 weeks, we will try other remedies (eg. antifungals,

> antiretrovirals, etc...).

>

Yes, he will add antivirals, antifungals, etc. based on lab work. I

would also suggest you pull titers. You can get these through your

local lab and should be covered by insurance. You want to pull

HHV1-6 and any vaccine titers you want pulled. I would also pull ASO

and Dnase titers to check for PANDAS. Also should be covered by

insurance.

> In the meantime this is the blood work he

> ordered for my son :

>

> Comprehensive urine and blood metabolic screen

> CBCDP

> Chem 20

> lipid profile

> pyruvic acid

> IgG specific for milk,wheat,soy,corn,peanut, sacchromyces,whole egg

> Lead

>

I would suggest getting a larger food allergy panel. One that test 90

+ foods. These aren't usually paid for by insurance. Doctors Data,

Alletess, Meridian Valley, Great Plains, etc. all have allergy panels.

>

> Stool culture specific for yeast

>

> --> which will all be covered by insurance.

>

> Self pay tests :

>

> 1.Metametrix Organix Dysbiosis - Urine ($350.00) which will go to

> Metametrix in Georgia

>

>

> 2. A Urine collection that will be sent to " Laboratoire de Biologie

> Medicale " in Paris, France which will check for :

> Porphyrins+Pterins+80HdG/80HG+F2-alpha-Isoprostane (dont know how

> much ?)

>

The porphyrins test is for metal toxicity. If you have the money,

send it out. I think it comes out to about $165 just for the

porphyrins and the rest is additional. I would think with all the

additional pieces, it will probably cost around $450.

>

>

> He gave him one MB12 injection in the office and gave me a list of

> supplements he should take, eg. Vitamin B6,magnesium/calcium, liver

> cod oil,Zinc

>

Make sure you get *cod* liver oil.

>

>

> What suprised him is that my son does not have ANY bowel symptoms at

> all, neither diahhrea or constipation, however, he said what if he

> has both of them, then you will see neither one

>

Not uncommon. My son has no gut issues but *lots* of viral issues.

>

>

> Either way, I am anxious to see his blood results coming back,

> eventhough I am debating if I should send the optional self-pay ones,

> as they are very expensive. Anyone done those ? Are they really

> neccessary ?

>

Send what you can when you can. Don't make yourself go broke. Just

keep the tests and as you can afford them, send them out.

Cheryl

[Guest guest]

HI, I feel that all the tests are important..they all have little

clues hidden in them as to what supplements your son needs and what

else is going on..at first I felt like you..so much money! but they

have all revealed something that will help treat my son!

>

> hey, had my first DAN! appt. today...my son is 3.3 years, diagnosed

> with autism, non-verbal.

>

> Basically, the doctor did not give me any more details than one can

> find here on in the internet. He just said, well, usually we start

> restricting milk products first and to whean him off gluten and

> casein and start him on MB12 injections. He has a great success

rate

> with only that in his office. Then, if that did not help within

about

> 4 weeks, we will try other remedies (eg. antifungals,

> antiretrovirals, etc...). In the meantime this is the blood work he

> ordered for my son :

>

> Comprehensive urine and blood metabolic screen

> CBCDP

> Chem 20

> lipid profile

> pyruvic acid

> IgG specific for milk,wheat,soy,corn,peanut, sacchromyces,whole egg

> Lead

> Stool culture specific for yeast

>

> --> which will all be covered by insurance.

>

> Self pay tests :

>

> 1.Metametrix Organix Dysbiosis - Urine ($350.00) which will go to

> Metametrix in Georgia

> 2. A Urine collection that will be sent to " Laboratoire de Biologie

> Medicale " in Paris, France which will check for :

> Porphyrins+Pterins+80HdG/80HG+F2-alpha-Isoprostane (dont know how

> much ?)

>

> He gave him one MB12 injection in the office and gave me a list of

> supplements he should take, eg. Vitamin B6,magnesium/calcium, liver

> cod oil,Zinc

>

> What suprised him is that my son does not have ANY bowel symptoms

at

> all, neither diahhrea or constipation, however, he said what if he

> has both of them, then you will see neither one

>

> Either way, I am anxious to see his blood results coming back,

> eventhough I am debating if I should send the optional self-pay

ones,

> as they are very expensive. Anyone done those ? Are they really

> neccessary ?

>

> Tomorrow we are going to see a neurologist and try to get him a MRI

> (as recommended by Dr. Miranda from the Bright Minds

> Institute) and an EEG (as Stan made really curious about brain

> synchronicity, etc...). Will see what they will say.

>

> After all, I am glad I joined this group and found Stan as

guidance.

> I wish one day I can come back here and say that my son lost his

> diagnosis, but one step at a time I guess. Thank you everyone who

> shares their experiences here.

>

> Thanks,

> Chris

>

[Guest guest]

Well, keep in mind that you have many things to consider than just the labs.  Let's say a titers test came back saying your son has HH6 titers.  Well, he will start you on antivirals and when you take antivirals, you *must* be on antifungals because antivirals cause yeast.  So it isn't solely dependent upon the labs but also the supps and meds.As for your titers question, many of the autism symptoms *are* symptoms of being viral (or bacterial or yeasty, etc - or even a combination).  Being in top shape doesn't say much, unfortunately.  My son's immune system is incredibly weak so it was obvious through labs and the fact that my son has been sick since birth.  On the flip side, there are kids that get sick *very* rarely - also not a good sign.  Remember, kids get sick a few times a year.  Too much or too little can be a sign of trouble.  If titers come back negative, it really depends on the doc.  Some might to a trial of antivirals anyway as many kids have viral problems that aren't showing up on the tests.  I know of many kids with normal titers that have benefitted greatly from antivirals.CherylHey thanks for your reply.Ok, so let's say his labs will come back normal. Not suggesting he has fungal overgrowth for example. Would he still try adding antifungals ? And if the titers come back normal, would he add anti-virals ? I mean it is very hard to believe that he has viral problems, as besides autism symptoms he looks like he is in top shape. Nothing to suggest he could have a viral burden in his body. How did your child present with all the viral issues you mentioned ? Thanks a lot,chris> > > hey, had my first DAN! appt. today...my son is 3.3 years, diagnosed> > with autism, non-verbal.> >> > Basically, the doctor did not give me any more details than one can> > find here on in the internet. He just said, well, usually we start> > restricting milk products first and to whean him off gluten and> > casein and start him on MB12 injections.> >> > Which is true. I wouldn't want to see a doctor just start > prescribing stuff without knowing the labs.> > > He has a great success rate> > with only that in his office. Then, if that did not help within about> > 4 weeks, we will try other remedies (eg. antifungals,> > antiretrovirals, etc...).> >> > Yes, he will add antivirals, antifungals, etc. based on lab work. I > would also suggest you pull titers. You can get these through your > local lab and should be covered by insurance. You want to pull > HHV1-6 and any vaccine titers you want pulled. I would also pull ASO > and Dnase titers to check for PANDAS. Also should be covered by > insurance.> > > In the meantime this is the blood work he> > ordered for my son :> >> > Comprehensive urine and blood metabolic screen> > CBCDP> > Chem 20> > lipid profile> > pyruvic acid> > IgG specific for milk,wheat,soy,corn,peanut, sacchromyces,whole egg> > Lead> >> > I would suggest getting a larger food allergy panel. One that test 90 > + foods. These aren't usually paid for by insurance. Doctors Data, > Alletess, Meridian Valley, Great Plains, etc. all have allergy panels.> > >> > Stool culture specific for yeast> >> > --> which will all be covered by insurance.> >> > Self pay tests :> >> > 1.Metametrix Organix Dysbiosis - Urine ($350.00) which will go to> > Metametrix in Georgia> >> >> > 2. A Urine collection that will be sent to "Laboratoire de Biologie> > Medicale" in Paris, France which will check for :> > Porphyrins+Pterins+80HdG/80HG+F2-alpha-Isoprostane (dont know how> > much ?)> >> > The porphyrins test is for metal toxicity. If you have the money, > send it out. I think it comes out to about $165 just for the > porphyrins and the rest is additional. I would think with all the > additional pieces, it will probably cost around $450.> > >> >> > He gave him one MB12 injection in the office and gave me a list of> > supplements he should take, eg. Vitamin B6,magnesium/calcium, liver> > cod oil,Zinc> >> > Make sure you get *cod* liver oil.> > >> >> > What suprised him is that my son does not have ANY bowel symptoms at> > all, neither diahhrea or constipation, however, he said what if he> > has both of them, then you will see neither one > >> > Not uncommon. My son has no gut issues but *lots* of viral issues.> > >> >> > Either way, I am anxious to see his blood results coming back,> > eventhough I am debating if I should send the optional self-pay ones,> > as they are very expensive. Anyone done those ? Are they really> > neccessary ?> >> > Send what you can when you can. Don't make yourself go broke. Just > keep the tests and as you can afford them, send them out.> > Cheryl>

[Guest guest]

Well, keep in mind that you have many things to consider than just the labs.  Let's say a titers test came back saying your son has HH6 titers.  Well, he will start you on antivirals and when you take antivirals, you *must* be on antifungals because antivirals cause yeast.  So it isn't solely dependent upon the labs but also the supps and meds.As for your titers question, many of the autism symptoms *are* symptoms of being viral (or bacterial or yeasty, etc - or even a combination).  Being in top shape doesn't say much, unfortunately.  My son's immune system is incredibly weak so it was obvious through labs and the fact that my son has been sick since birth.  On the flip side, there are kids that get sick *very* rarely - also not a good sign.  Remember, kids get sick a few times a year.  Too much or too little can be a sign of trouble.  If titers come back negative, it really depends on the doc.  Some might to a trial of antivirals anyway as many kids have viral problems that aren't showing up on the tests.  I know of many kids with normal titers that have benefitted greatly from antivirals.CherylHey thanks for your reply.Ok, so let's say his labs will come back normal. Not suggesting he has fungal overgrowth for example. Would he still try adding antifungals ? And if the titers come back normal, would he add anti-virals ? I mean it is very hard to believe that he has viral problems, as besides autism symptoms he looks like he is in top shape. Nothing to suggest he could have a viral burden in his body. How did your child present with all the viral issues you mentioned ? Thanks a lot,chris> > > hey, had my first DAN! appt. today...my son is 3.3 years, diagnosed> > with autism, non-verbal.> >> > Basically, the doctor did not give me any more details than one can> > find here on in the internet. He just said, well, usually we start> > restricting milk products first and to whean him off gluten and> > casein and start him on MB12 injections.> >> > Which is true. I wouldn't want to see a doctor just start > prescribing stuff without knowing the labs.> > > He has a great success rate> > with only that in his office. Then, if that did not help within about> > 4 weeks, we will try other remedies (eg. antifungals,> > antiretrovirals, etc...).> >> > Yes, he will add antivirals, antifungals, etc. based on lab work. I > would also suggest you pull titers. You can get these through your > local lab and should be covered by insurance. You want to pull > HHV1-6 and any vaccine titers you want pulled. I would also pull ASO > and Dnase titers to check for PANDAS. Also should be covered by > insurance.> > > In the meantime this is the blood work he> > ordered for my son :> >> > Comprehensive urine and blood metabolic screen> > CBCDP> > Chem 20> > lipid profile> > pyruvic acid> > IgG specific for milk,wheat,soy,corn,peanut, sacchromyces,whole egg> > Lead> >> > I would suggest getting a larger food allergy panel. One that test 90 > + foods. These aren't usually paid for by insurance. Doctors Data, > Alletess, Meridian Valley, Great Plains, etc. all have allergy panels.> > >> > Stool culture specific for yeast> >> > --> which will all be covered by insurance.> >> > Self pay tests :> >> > 1.Metametrix Organix Dysbiosis - Urine ($350.00) which will go to> > Metametrix in Georgia> >> >> > 2. A Urine collection that will be sent to "Laboratoire de Biologie> > Medicale" in Paris, France which will check for :> > Porphyrins+Pterins+80HdG/80HG+F2-alpha-Isoprostane (dont know how> > much ?)> >> > The porphyrins test is for metal toxicity. If you have the money, > send it out. I think it comes out to about $165 just for the > porphyrins and the rest is additional. I would think with all the > additional pieces, it will probably cost around $450.> > >> >> > He gave him one MB12 injection in the office and gave me a list of> > supplements he should take, eg. Vitamin B6,magnesium/calcium, liver> > cod oil,Zinc> >> > Make sure you get *cod* liver oil.> > >> >> > What suprised him is that my son does not have ANY bowel symptoms at> > all, neither diahhrea or constipation, however, he said what if he> > has both of them, then you will see neither one > >> > Not uncommon. My son has no gut issues but *lots* of viral issues.> > >> >> > Either way, I am anxious to see his blood results coming back,> > eventhough I am debating if I should send the optional self-pay ones,> > as they are very expensive. Anyone done those ? Are they really> > neccessary ?> >> > Send what you can when you can. Don't make yourself go broke. Just > keep the tests and as you can afford them, send them out.> > Cheryl>