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Ok so Im real confused again.

Saw Dr B and decided to do the 1.5 g dosage wit him.Dont know when that will happen because he has to do the insurance stuff.

 

Yesterday dan had a bad day at scholl Hit and kicked a teacher because he didnt get to do what he wanted(hes 16) not 4!!!

He hasnt behaved this way in sooo long.Needless to say Im depressed this is a new school and not how I wanted this to start.

 

He just handed me a note addressed to the eacher apologizing for his behavior and why he feels he lost it.Very sloppy,havent seen the sloppyness in a while either. HIs ticcing seems worse than its been in a while.

 

I am anxious angry and sad !! I dont know if I should do the 1g scheduled for friday with Dr J or what.I dont know when Dr B will be able to schedule the IVIG 1.5g or if its even possible ?

 

I dont like that I have no control over any of this.I want to go to my room and go to bed.

 

I took some of his research away as a punishment and now hes sweet as pie.So I know he can be .

 

Im scared to change mds what if dr B cant deliver.He says he can make him 95%?Is that really true.He says hes seen the same stuff with other kids.

 

I need support

Melanie

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Melanie,

 

I'm so sorry you are going through this right now. I just wanted to give my input here.

 

I know you feel good about Dr. B and that he agreed to do the high dose IVIG, and I think this is a good direction to try.

 

But the reality right now is that Danny's due for his next infusion, and his behaviors are getting worse. Personally, I think you should just stay the course with Dr. J FOR NOW....while simultaneously working with Dr. B.

 

Dr. B can always reschedule an IVIG for a later date if it is too soon after one of his low dose infusions. Simply put, continue to use Dr. J's treatment protocol, and let Dr. B decide how best to fit the high dose IVIG in...

 

I'm also sure that a call to Dr. B asking what to do next could give you some real insight...I've heard he is very responsive.

 

I hope I haven't caused you more stress!!

 

~Karen

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You are doing great!!!

It is so hard...we are the ones kind of even guiding the doc's who know the most...

And i doubt wht i'm doing all the time ....as you understand

and i doubt what i am seeing..is he really getting better...is this a fluke....but this changed...so it it just this....

 

I just go up/out of bed an hour ago...i don't need to be in bed that long...i just don't want to be out here!!!!

 

Just thinking out loud....since doc b doesn't know time and date, or approval of his protocal.....if you are seeing whateve small betterment with your current Doc

i would probably keep on that till further notice...and maybe not mentiion to her your possible change...if you have already done so...there should still not be a problem, as if she thinks she is right, maybe it's then next infusion she gives that will be the break through....and i can't beleive she would want your boy, or you sto suffer in the mean time as a punishment to her hurt ego...(i not saying that's the case)

 

We are here for you!!!!

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Why cant anything be easy.Then again I only like the good stuff.I started to draft a letter to Dr J I want to add inks about antinflamatory implications with IVIG.Hogher dose is better kindof thing.Although I think she would already know this.

 

If any one can foward info please Im begging

 

Melanie

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Why does he feel he lost it?

 

I know you weren't there, but was this an all out rage, or more like a tantrum? Make sure Danny has a plan and some strategies in place for what to do when he starts to lose it. We (and schools) are great about telling our kids what they cannot do, but we need to make sure they develop the skills to handle their emotions and self regulate.

 

I agree you should stay the course w/ Dr. J, until the other is in place.

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I know Peg I dont want to wait though ,If the 1g is truly making him worse right now I want to do the 1.5 to see if its better.

Do you still have the papers on higher dose having antinflamatory helping stuff(lost for words and spelling today sorry)

I want to send it to her Dr J

 

melanie

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I have called to leave messages for Br. B on two occasions and he was available to talk to me via phone immediately. I know he has morning office hours on Sat-I think at the Darien office, have you tried calling him? If not, try on Monday, he's at the Stamford office (I know b/c we meet with him for a follow-up visit that day).

Good Luck, I hope you can find some answers.

 

Amy

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why is he unavailable ,does he call back?Did u do IV with him?

Melanie

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Here's the abstract:

 

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

 

and the text, bolding mine:

 

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.

 

But, what Danny is getting, 1g/kg, is really a medium dose, so I don't know how that would play into this. We know that that the 1.5g/kg dose is anti-inflammatory. Can you get Dr.J to call Dr.B?

 

Also, Taurine has anti-inflammatory properties, without the tummy problems that ibuprofen can cause.

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Melanie, I don't want to confuse you further, but I do believe that the 1g dose makes these kids worse.

Dr. B himself was doing the 1g dose monthly but recently switched to the 1.5g dose bimonthly after conferring with Dr. K, so I have seen both.

 

He is very good at getting insurance to cover if there is any kind of immune deficiency.

Perhaps if you call him again you can get the ivig schedule sooner rather than waiting for the new transfusion center.

 

The woman who does the IVIG there is WONDERFUL.

 

Anyway I would not do the 1g dose.

 

I am just curious, why is he in school in the summer?

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Melanie - I think Amy said that when she called him he was AVAILABLE not UNAVAILABLE... and she was able to talk with him right away. I just spoke to him last night about my son's fever and that 5 minute conversation got me through the evening and my son is so much better today.

 

I do not know how the man does it, but he generally does manage to call back. It may not be today, but I am sure he will connect with you at some point in the next few days to help you make a plan.

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Melanie, I don't want to confuse you further, but I do believe that the 1g dose makes these kids worse.

Dr. B himself was doing the 1g dose monthly but recently switched to the 1.5g dose bimonthly after conferring with Dr. K, so I have seen both.

 

He is very good at getting insurance to cover if there is any kind of immune deficiency.

Perhaps if you call him again you can get the ivig schedule sooner rather than waiting for the new transfusion center.

 

The woman who does the IVIG there is WONDERFUL.

 

Anyway I would not do the 1g dose.

 

I am just curious, why is he in school in the summer?

Melanie

Dr J is a very highly regarded immunologist by her peers. But the few docs we have treating Pandas are all doing different doses of IVIG, .47, 1, 1.5 and even 2 for some reason. Most seem to be understanding that Dr K has something good and are switching to his protocol. From professional experience I do that higher the dose the more antiinflammatory the IVIG is. I may have posted this before but for issues like paralysis due to multi nerve/neuron inflammation in the brain and spinal cord even in toddlers, they use 2gms doasage of IVIG, for severe brain injury/coma they can go up to 9 or 10 gms dosage along with steroids.Has Dr J ever told you why she's been using the low dose for so long? Can you ask her for some research citations for her beliefs. She says she's an evidence based clinician when I spoke with her last month and I was going to ask her for citations at my august appt for Brian. She also told me she owuld be happy to continue Dr K's protocol as and when the need arises since Brian is already a Dr. K patient currently. Docs are happy to cont the Rx for transfer patients usually and I guess she is too. If she starts mentioning 1gm dose etc I will have to draw the line. I am waiting to read Dr K's paper at next week's conference.

A physician's personal experience and personal expert opinion is the LOWEST form of evidence in the medical community. She's a professor I believe and a researcher and she knows this. I teach Evidence Based Practice and know this too. It has to be from a decently conducted study. I say decent and not the highest level of research because Pandas being controversial and relatively newer.

A lot of parents here are reading abstracts and studies on Pubmed and other search engines and not many of the citations/links posted have a good level of evidence. Many are pilot studies, anecdotes, opinions, personal experiences, low level low budget studies and again I'm guessing its because of the newness of Pandas, IVIG for Pandas etc. One or two studies are done by NIH and NIMH are of a slightly higher level of research and even randomized controlled trials (RCTs). RCTs are relatively very high level studies and more faith can be put into their conclusions based upon the number of subjects, the more the better the results the more valid the evidence.

I agree with you actually, trying the 1.5 gms at the earliest possible. I am actually sending two of my patients to Dr J for a Pandas eval and Brian has an appt in August. If I can help in any way let me know. I will keep you informed what she says when I speak to her. I would cont with Dr B. parallel to your association with Dr J. Keeping Danny stable is obviously your first priority and doctors come later. If his current protocol gives him a few weeks of relief and you need the break then you should continue and try to fit in Dr B when feasible. I'm sure he'll work with you- most docs would.- Jodie

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Oh, I totally understand the "not having any control." Completely how I feel now that insurance fell through the day before we were supposed to get IVIG with Dr. K. Hopefully insurance will come through very quickly for you. I bet with the immuno dx it will be much easier than with the encephalapathy that was used for our son. And, didn't you say that Dr. J. is going to help Dr. B. get the insurance? That should certainly help.

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