Seeing Dr J today

[melanie]

We have an appointment today and Im sure she will just do blood work ,Im going to try to speak to her about the IV (1g) dont think she will change anything but we will see.Still keeping my appointment with Dr B next week.

 

Melanie

[trggirl]

Good luck on your appointment with Dr. B! I think it is a good thing to bring different experts into this since so many of the answers are unknown.

[melanie]

Saw dr J this am .I think Im posiyive shes the right dr for danny.I think seeing dr B may be a mistake for us.Dr J is convienced that inflamation is causing most of the issues , maybe pandas like but more inflamation.Actually just publishes a paper www.expert-reviews.com about inflamation and behavioral changes.

 

What do you think?

 

She also wants him back on minocycline and singular for inflamation

 

No upage for the IV and thinks probably 2 years of therapy ugghhh

 

 

Melanie

[Fixit]

Saw dr J this am .I think Im posiyive shes the right dr for danny.I think seeing dr B may be a mistake for us.Dr J is convienced that inflamation is causing most of the issues , maybe pandas like but more inflamation.Actually just publishes a paper www.expert-reviews.com about inflamation and behavioral changes.

 

What do you think?

 

She also wants him back on minocycline and singular for inflamation

 

No upage for the IV and thinks probably 2 years of therapy ugghhh

 

 

Melanie

 

Well...as long as you are seeing continued improvement...she is willing..., wants to help(heart in it)(which helps us parents more than the kids)...insurance is doing what ever she says....I think it's a no brainer to stay with her.....

I do think second third fourth opinions are always good and would keep the appoint with docb...he might have a different light/angle your doc might even consider...

I wish i had kept my appoint with doc L last nov....now i 'm trying to get in for August

And her protocal might be one that will go in the books with Dock and doc L...if it's working, there maybe be different variations...just like all of our kids are different variations

[peglem]

Saw dr J this am .I think Im posiyive shes the right dr for danny.I think seeing dr B may be a mistake for us.Dr J is convienced that inflamation is causing most of the issues , maybe pandas like but more inflamation.Actually just publishes a paper www.expert-reviews.com about inflamation and behavioral changes.

 

What do you think?

 

She also wants him back on minocycline and singular for inflamation

 

No upage for the IV and thinks probably 2 years of therapy ugghhh

 

 

Melanie

Melanie, has Dr. J seen the studies that lower doses of IVIG are pro-inflammatory? Higher doses are anti-inflammatory. Lemmee see if I can find that for you.

[EAMom]

Keep the appointment with Dr. B.

 

If inflammation is the problem like Dr. J. says, then high dose IVIG is very anti-inflammatory and would be appropriate for Danny.

[melanie]

Hes getting the 1 g per kilo ,Hes 129lbs (lost a few lbs) gets 60 g every 21 days .She said its a higher dosage than most theraputic dosages and really feels that higher dosages are not a good Idea,Even if I go to Dr B what is he going to do? She is totally always there for us,I have her cell phone number for goodness sake.She 1 of the top immunologists and shes in NJ.My insurance company covers everything 100% with her.Shes through a huge hospital UMDNJ.Im not even sure that 1..5 is that much better.Everyone seems to be doing more infussions than the 1 .I also think are kids are sooo different.Mine is 16 so hes older and he also has ASD .Some of the kids dont.

 

What do you think about the inflamation idea?

 

Peg if you have that article Id live to see it

 

Thanks for being here ,everyone\

 

Melanie

[peglem]

Okay, here:

 

http://www.ncbi.nlm.nih.gov/pubmed/19883419

Clin Exp Immunol. 2009 Dec;158 Suppl 1:2-13.

Intravenous immunoglobulins--understanding properties and mechanisms.

 

Durandy A, Kaveri SV, Kuijpers TW, Basta M, Miescher S, Ravetch JV, Rieben R.

 

INSERM U768, Université Paris-Descartes, Hospital Necker, Paris, France.

Abstract

 

High-dose intravenous immunoglobulin (IVIg) preparations are used currently for the treatment of autoimmune or inflammatory diseases. Despite numerous studies demonstrating efficacy, the precise mode of action of IVIg remains unclear. Paradoxically, IgG can exert both pro- and anti-inflammatory activities, depending on its concentration. The proinflammatory activity of low-dose IVIg requires complement activation or binding of the Fc fragment of IgG to IgG-specific receptors (FcgammaR) on innate immune effector cells. In contrast, when administered in high concentrations, IVIg has anti-inflammatory properties. How this anti-inflammatory effect is mediated has not yet been elucidated fully, and several mutually non-exclusive mechanisms have been proposed. This paper represents the proceedings of a session entitled 'IVIg--Understanding properties and mechanisms' at the 6th International Immunoglobulin Symposium that was held in Interlaken on 26-28 March 2009. The presentations addressed how IgG may affect the cellular compartment, evidence for IVIg-mediated scavenging of complement fragments, the role of the dimeric fraction of IVIg, the anti-inflammatory properties of the minor fraction of sialylated IgG molecules, and the genetic organization and variation in FcgammaRs. These findings demonstrate the considerable progress that has been made in understanding the mechanisms of action of IVIgs, and may influence future perspectives in the field of Ig therapy.

 

PMID: 19883419 [PubMed - indexed for MEDLINE]

 

Bolding mine. Sorry, could only get the abstract, but clearly states that low dose is proinflammatory, high dose is anti inflammatory.

 

There are more articles posted on this thread:

http://www.latitudes.org/forums/index.php?...matory&st=0

Edited July 2, 2010 by peglem

[sptcmom]

Melanie

I agree with the high dose. BUT I do also agree that treatment for children on the spectrum plus Pandas might be different. I forget- do you see a DAN doctor? You saw Sultan- is he a DAN doctor? Dr Dornfeld is in Middletown and has lots of experience with Pandas and ASD BUT not in favor of IVIG. Will explain brain processes though. I have 50% children in my practice with ASD and about 5% also have Pandas. They see one of the local DAN doctors for detox and ABX but no one has had IVIG yet since most are 3 to 4 years old and are responding well to abx.

Dr Bock in Rhinebeck NY is the untimate package- is Pandas, Lyme and DAN literate. Superb reviews. But quite a hike. I am looking for a naturopath close by and found one in Toms River- works wonders with one of my patients with glioblastoma of the brain.. Will take DS to her soon.

The DAN doctors advise to be very aware of biofilm in the gut of children on the spectrum. They put them on high dose digestive enzymes, Bentonite/charcoal detox along with the high dose ABX if pandas issue comes into play. The enzy help poke holes and breakdown biofilm to access the intracellular bacteria. Biofilm doesn't shed bacteria like tonsils do so its harder to get rid of them.

Secondly Dr K has spoken about the articles Peglem is mentioning. The research shows evidence that 1.47 gms/kg is the most antiinflam dosage for Pandas type illness. Again not factoring in the brain processes of ASD. Dr K rounds it off to 1.5 for his patients.

High dose like 2 to 4 gms/kg are used for serious inflammation like with bacterial meningitis, polyneuritis like in Guillian Barre syndrome ( a patient of mine) which causes paralysis of leg muscles spreading upwards and high dose IVIG will stop the neural inflammation and reverse paralysis. My patient was 2.5 yrs old when he got sudden onset of GB synd and is now 7 and symptom free NO relapses since 5 yrs of age and 4 ivigs at Columbia Presbyterian overall. Patients/adults in a coma may need doses as high as 8 to 10 gms/kg I was discussing with Dr K while we were there.

The 1gm/kg dose Dr K says just stirs up the antibodies and the antigen antibody complexes with no real long term benefit. The higher dose has actual immunemodifying capacity and takes longer to work so you do it and stay put for 3 months. Thats why most children who get the low dose seem to need a lot of repeats. I also heard the explanation fron Dr K about 2 gms/kg being too high of a dose for Pandas kids and seems to bypass the Pandas issues but can't remember the exact explanation.

I would get a second opinion from Dr B if I were you, see a DAN doctor if you believe in holistic approach to AASD and related issues. Insurance will cover your if Dr B uses the same codes. Insurance is not covering the doctor they don't care who the doctor is as long as MD . What insurances look at is the diagnosis and procedure codes being used. Keep them the same as Dr J if you ever decide to try Dr B's treatment and as long as two doctors are not using those at the same time you'll be covered. Office visists are usually covered no problem esp if its a PPO.

I have access to medical articles via the AMA. OVID etc databases should you ever need the full print of any article of avail on these. Pubmed will have have higher level evidence articles if you look in the left menu and click on Clinical queries and search thru there. - Jodie

[Fixit]

this is very informative...

the biofilm...would that be like a mucus....or is that something wrapped around each invidual cell??

do you use digestive enzymes....i have, once in a while...try to sprinlke on food.....no where near high dose...

how long would you have to use such a product

The 2 mg on ivig is intersesting...as i heard of someone who did 2 and is not having any success...like you said..it may have just skipped over like a skipping stone..to hard and fast...as opposed to sinking in.......

 

Melanie

I agree with the high dose. BUT I do also agree that treatment for children on the spectrum plus Pandas might be different. I forget- do you see a DAN doctor? You saw Sultan- is he a DAN doctor? Dr Dornfeld is in Middletown and has lots of experience with Pandas and ASD BUT not in favor of IVIG. Will explain brain processes though. I have 50% children in my practice with ASD and about 5% also have Pandas. They see one of the local DAN doctors for detox and ABX but no one has had IVIG yet since most are 3 to 4 years old and are responding well to abx.

Dr Bock in Rhinebeck NY is the untimate package- is Pandas, Lyme and DAN literate. Superb reviews. But quite a hike. I am looking for a naturopath close by and found one in Toms River- works wonders with one of my patients with glioblastoma of the brain.. Will take DS to her soon.

The DAN doctors advise to be very aware of biofilm in the gut of children on the spectrum. They put them on high dose digestive enzymes, Bentonite/charcoal detox along with the high dose ABX if pandas issue comes into play. The enzy help poke holes and breakdown biofilm to access the intracellular bacteria. Biofilm doesn't shed bacteria like tonsils do so its harder to get rid of them.

Secondly Dr K has spoken about the articles Peglem is mentioning. The research shows evidence that 1.47 gms/kg is the most antiinflam dosage for Pandas type illness. Again not factoring in the brain processes of ASD. Dr K rounds it off to 1.5 for his patients.

High dose like 2 to 4 gms/kg are used for serious inflammation like with bacterial meningitis, polyneuritis like in Guillian Barre syndrome ( a patient of mine) which causes paralysis of leg muscles spreading upwards and high dose IVIG will stop the neural inflammation and reverse paralysis. My patient was 2.5 yrs old when he got sudden onset of GB synd and is now 7 and symptom free NO relapses since 5 yrs of age and 4 ivigs at Columbia Presbyterian overall. Patients/adults in a coma may need doses as high as 8 to 10 gms/kg I was discussing with Dr K while we were there.

The 1gm/kg dose Dr K says just stirs up the antibodies and the antigen antibody complexes with no real long term benefit. The higher dose has actual immunemodifying capacity and takes longer to work so you do it and stay put for 3 months. Thats why most children who get the low dose seem to need a lot of repeats. I also heard the explanation fron Dr K about 2 gms/kg being too high of a dose for Pandas kids and seems to bypass the Pandas issues but can't remember the exact explanation.

I would get a second opinion from Dr B if I were you, see a DAN doctor if you believe in holistic approach to AASD and related issues. Insurance will cover your if Dr B uses the same codes. Insurance is not covering the doctor they don't care who the doctor is as long as MD . What insurances look at is the diagnosis and procedure codes being used. Keep them the same as Dr J if you ever decide to try Dr B's treatment and as long as two doctors are not using those at the same time you'll be covered. Office visists are usually covered no problem esp if its a PPO.

I have access to medical articles via the AMA. OVID etc databases should you ever need the full print of any article of avail on these. Pubmed will have have higher level evidence articles if you look in the left menu and click on Clinical queries and search thru there. - Jodie

[melanie]

Hi

 

Ive done all the DAN dr stuff for years,Dr dorinfield did every test used him for a long time great dr.but he thinks hes a PANDAS guy I explained everything to him.I think we were one of his 1st pandas kids.Im not even sure we are completely pandas anymore.

 

Melanie

[sptcmom]

this is very informative...

the biofilm...would that be like a mucus....or is that something wrapped around each invidual cell??

do you use digestive enzymes....i have, once in a while...try to sprinlke on food.....no where near high dose...

how long would you have to use such a product

The 2 mg on ivig is intersesting...as i heard of someone who did 2 and is not having any success...like you said..it may have just skipped over like a skipping stone..to hard and fast...as opposed to sinking in.......

 

Hi

Here is some very basic stuff on Biofilm- parent friendly. I can send you biomedical journal stuff, Phasmid sent me an interesting link as well. Just google Biofilm (one word) in the intestines of humans and you'll get info

http://www.newautismcure.com/category/autism-symptoms/.

Again- its not just for children with Autism but for all children with any chronic infections. Lyme literate doctors often recommend an anti biofilm protocol if the treatment plateaus or stops being very effective. Us Pandas mom esp ones with co infection issues shoudl look into Biofilm as well. Pretty disgusting stuff. I do digestive enzymes, the above website has access to biofilm protocols as well. I am not doing high dose enzymes just regular. There are a lot of choices. I am also doing Bentonite so the combo is what I'm doing for now.

A stool test will sometimes demonstrate bacteria esp the gram negative and anaerobic germs and yeast that hide in this stuff.

Edited July 2, 2010 by sptcmom

[EAMom]

The 1gm/kg dose Dr K says just stirs up the antibodies and the antigen antibody complexes with no real long term benefit. The higher dose has actual immunemodifying capacity and takes longer to work so you do it and stay put for 3 months. Thats why most children who get the low dose seem to need a lot of repeats. I also heard the explanation fron Dr K about 2 gms/kg being too high of a dose for Pandas kids and seems to bypass the Pandas issues but can't remember the exact explanation.

 

Very informative post Jodie!

 

I'd be interested in finding out more about why Dr. K. feels 2gm/kg is too high a dose for PANDAS kids.

 

When we were originally deciding on a dose I sent Dr. K. an e-mail (we were having IVIG done locally, but our immunologist hadn't treated a PANDAS kids b-4). Our dd at the time was going to be 9 years old and had a history of PANDAS anorexia. I had heard that PANDAS anorexia cases can be "tougher" and more likely to need a repeat IVIG so I was curious to see what Dr. K. thought about dosing. I also knew that Swedo had used 2gm/kg. His reply was that he would rec. the higher 2gm/kg dose due to dd's age (a little older) and the Anorexia. He said the only downside would be higher cost (for of the Gamunex) and more potential for side effects (meaning headache, nausea post IVIG).

 

So far, dd has had 2 IVIG's at this dose. The first (Aug. 2009) was what I would consider a sucess until a relapse 6mo. later (after a 1 day FEVER). We couldn't get her back to baseline despite doubling the azith (to 500mg/day) and doing a 5 day course of pred (50mg/day...2mg/kg). Our 2nd IVIG, I would say, so far has been sucessful, but I think it is too early to say (we're only 1mo. out).

 

I should add that our dd might have been a more severe case, so I'm not surprised 1 IVIG didn't do it. When she wasn't in an exacerbation her CaM kinase ll was in the high pandas range. When she was in an exacerbation (a few mo. after strep exposure and just after H1N1) her CaM kinase ll was in the high SC range, the highest Dr. C. had ever seen (253 or something like that).

[sptcmom]

The 1gm/kg dose Dr K says just stirs up the antibodies and the antigen antibody complexes with no real long term benefit. The higher dose has actual immunemodifying capacity and takes longer to work so you do it and stay put for 3 months. Thats why most children who get the low dose seem to need a lot of repeats. I also heard the explanation fron Dr K about 2 gms/kg being too high of a dose for Pandas kids and seems to bypass the Pandas issues but can't remember the exact explanation.

 

Very informative post Jodie!

 

I'd be interested in finding out more about why Dr. K. feels 2gm/kg is too high a dose for PANDAS kids.

 

When we were originally deciding on a dose I sent Dr. K. an e-mail (we were having IVIG done locally, but our immunologist hadn't treated a PANDAS kids b-4). Our dd at the time was going to be 9 years old and had a history of PANDAS anorexia. I had heard that PANDAS anorexia cases can be "tougher" and more likely to need a repeat IVIG so I was curious to see what Dr. K. thought about dosing. I also knew that Swedo had used 2gm/kg. His reply was that he would rec. the higher 2gm/kg dose due to dd's age (a little older) and the Anorexia. He said the only downside would be higher cost (for of the Gamunex) and more potential for side effects (meaning headache, nausea post IVIG).

 

So far, dd has had 2 IVIG's at this dose. The first (Aug. 2009) was what I would consider a sucess until a relapse 6mo. later (after a 1 day FEVER). We couldn't get her back to baseline despite doubling the azith (to 500mg/day) and doing a 5 day course of pred (50mg/day...2mg/kg). Our 2nd IVIG, I would say, so far has been sucessful, but I think it is too early to say (we're only 1mo. out).

 

I should add that our dd might have been a more severe case, so I'm not surprised 1 IVIG didn't do it. When she wasn't in an exacerbation her CaM kinase ll was in the high pandas range. When she was in an exacerbation (a few mo. after strep exposure and just after H1N1) her CaM kinase ll was in the high SC range, the highest Dr. C. had ever seen (253 or something like that).

To be honest, as I mentioned earlier, I clearly remember the explanation for 1 gm being not very effective and that Dr K had arrived at 1.47mg/kg as the optimum dose whcih he rounds off to 1.5gms/kg. I really really cannot recall his points on 2gms/kg dose. We spoke all this just when he had started the IVIG on Ds and my heart was in my throat. I wish I had taped him. His knowledge base is so immense.