IVIG questions

[earnestfamily7]

We are in the process of seeking preapproval for IVIG for DD7 and DS10 .... My mom, who has been through the think and thin... the good the bad and the very ugly phases of PANDAS with us was very excited that we are moving in the IVIG direction.... However when I told her and my DH that many of the PANDAS kids that get IVIG need more than 1 and often see 'turning back the pages" or the bad symptoms coming back before improving, they both asked why? and how long?

 

I didnt have a good answer on the why and I told them the how long varies.... Can anyone explain to me why this happens.... and are there times when it does not? We did a phone consult with Dr K 3 years ago and are doing another May 11th so I will be sure to ask him as well. But, it would be nice to hear about the experience from those who have delt with it 1st hand.

 

Thanks!

Steph

[Stephanie2]

Congrats on your decision to have IVIG, I know it's a tough decision! Things had to get REALLY bad with my 5 yo for us to come to this! Now things are getting REALLY bad for my 2 year old, and I'm asking myself, "really? IVIG for a 26 month old?????!!!" Not there yet, but maybe soon!

 

Anyway, we are currently 4 weeks post-IVIG, first treatment, 1 mg/kg. I have never had anyone really explain what turning back of pages means, but I do think my son experienced it. I saw things that I had not seen in awhile. In general, his symptoms seemed to intensify. Also, his separation anxiety became about the worst I have seen (literally following me around the house and usually hanging on me while I walk, crying when I left the house, crying and clinging for dear life at school at drop-off). Oh, and a tic appeared that I had not seen in a year - a persistent cough/sniff, like 6 times a minute all day long! He can't even get a sentence out without having to stop for his tic 1-5 times per sentence sometimes!!

 

And here is where we are at now...a couple days ago I witnessed a total cessation of most pandas symptoms out of the blue. I still havent' figured out if it is b/c the IVIG suddenly kicked in, or b/c I had just increased his dose of spironolactone, which is a med our doctor gave us which decreases inflammation and modulates the immune system. Wish I could give you a more definitive answer to our results. Too soon to tell maybe...

 

Stephanie

We are in the process of seeking preapproval for IVIG for DD7 and DS10 .... My mom, who has been through the think and thin... the good the bad and the very ugly phases of PANDAS with us was very excited that we are moving in the IVIG direction.... However when I told her and my DH that many of the PANDAS kids that get IVIG need more than 1 and often see 'turning back the pages" or the bad symptoms coming back before improving, they both asked why? and how long?

 

I didnt have a good answer on the why and I told them the how long varies.... Can anyone explain to me why this happens.... and are there times when it does not? We did a phone consult with Dr K 3 years ago and are doing another May 11th so I will be sure to ask him as well. But, it would be nice to hear about the experience from those who have delt with it 1st hand.

 

Thanks!

Steph

[sf_mom]

'Flipping of the pages' in our situation was either a new exposure to strep from school and/or due to Herxheimer Reaction... As our son has gotten better the 'flipping of pages' has diminish in length, frequency and intensity. If he is reactive to something now he might get TALKATIVE (AD/HD stuff) or have a brief flair of coughing. Hope that helps.

 

What Is The Herxheimer Reaction?

 

The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms. The important thing to note is that worsening symptoms do not indicate failure of the treatment in question; in fact, usually just the opposite.

 

A Rose By Any Other Name

 

Technically known as the Jarisch-Herxheimer Reaction, this syndrome goes by many names, including JHR, the Herxheimer Effect, the Herxheimer Response, a Herx Reaction, Herx or Herks. The most common terminology used is the Herxheimer Reaction. It is also often referred to as a healing crisis, a detox reaction, or die-off syndrome.

 

History

 

The phenomenon was first described by Adolf Jarisch (1860-1902) working in Vienna, Austria, and a few years later by Karl Herxheimer (1861-1942), working in Frankfort, Germany. Both doctors were dermatologists mainly treating syphilitic lesions of the skin. They noticed that in response to treatment, many patients developed not only fever, perspiration, night sweats, nausea and vomiting, but their skin lesions became larger and more inflamed before settling down and healing. Interestingly, they found that those who had the most extreme reactions healed the best and fastest. The patient might be ill for 2-3 days, but then their lesions resolved.

 

A Medical Example

 

The Herxheimer reaction is caused by the release of toxic chemicals (endotoxins) released from the cell walls of dying bacteria due to effective treatment. The Herxheimer Reaction is well recognized in medical circles and is certainly not confined to the world of natural medicine or supplements.

 

For example, a recent study report (Feb ’04) on the treatment of Sarcoidosis found that, “. . . without exception, the improving patients are reporting periodic aggravation of their symptoms as an apparent direct response to the antibiotics. In other words, these patients say that their treatment makes them feel much worse before they experience symptom-relief.” The abstract of the study goes on to say, “This phenomenon is known as the Jarisch-Herxheimer Reaction (JHR) and is often referred to informally as Herx. JHR is believed to be caused when injured or dead bacteria release their endotoxins into blood and tissues faster than the body can comfortably handle it. . . . This provokes a sudden and exaggerated inflammatory response . . . . In Sarcoidosis patients, the Herxheimer reaction seems to be a valuable indication that an antibiotic is reaching its target.” In the conclusion, the author states: “In my work with Sarcoidosis patients, it is my experience that recovering MP patients understand and welcome the Herxheimer reactions even when they must endure temporary increased suffering. They accept it as the price that they must pay in order to get well and the