8 week post IVIG update

[SSS]

Just had our 8 week post update with our pandas Dr. (who is also a DAN! Dr.)

We have had 2 lasting effects- the exorcist rages, that were scarier than all get out, where she would lose complete control, and be 'gone', the ones where I did not know whether to call an ambulance or not,

are gone. Gone.

Social anxiety seems much better, and sticking.

Post 2 weeks was INCREDIBLE- the happiest I have ever seen this child.

Since then we have had fits and starts- seeming to pull out, but, now,

not pulling out. Back to the tourette 'swearing' some vocal tics, compulsive hitting, OCD ramped up.

Our Dr. is grand, he offered to go to our HMO insurance, who does not believe in pandas, has been a brick wall, and present our rock solid case for IVIG to continue (as we cannot afford anymore out of pocket.)

I said no, just personally, I do not want to continue 1x a month with pooled blood products.

And, our Azith. seems to be doing nothing- except causing yeast flairs AGAIN (we have a bad gut on top of pandas)

Anyway, he did say he had been able to get some of his pandas patients off IVIG's by boosting TH1-

TH1 and TH2 regulate the immune system- TH1 fights the virus, bacterial, infections.

Isoprinosine or Imunovir -- I searched here, have found no one has talked about this, so thought I'd post about it.

Until we get that, we are back on an anti-fungal for yeast, and instead of Azith. he is giving us a round of

cephalexin to see if we can't eradicate any more possible strep that may be hiding. And then, I think we are off antibiotics, until school starts, not sure. Although I do have my secret stash, like money under the mattress.

 

Feel free to comment, always interested in what you smart people have to say.

Edited June 15, 2011 by S & S

[SSS]

I thought boosting th1 was bad because it's pro-inflammatory. Is your daughter immunodeficient?

 

 

No, she is not immunodeficient. There is another yahoo board I frequent (not the pandas one) where I have heard good reports on this drug (and our Dr. said there is virtually no side effects.)

From what I am reading, it is deemed an anti-viral medication. While I have never had viral titers pulled on dd6, it would not surprise me she has viral issues- she runs low grade fevers often- and once I did an anti-viral natural protocol on her over a year ago, and it pulled a chicken pox rash (although did not itch, but exactly the pox of varciella) all down her body for an entire month. She has been fully vaxxed with the latest and horrible USA excessive schedule, and I personally believe her immune system is jacked up from that. JMO.

I'm going to go for it- I trust my Dr. but I will ask about inflammation, but have never heard it associated with this.

Edited June 15, 2011 by S & S

[SSS]

Haven't read your link yet (I will) but the Dr. we see wrote a book, I just pulled it out, and in his book there is a chapter on TH1 adn TH2. From the cartoon drawing at the beginning:

It describes the TH1, (and I quote), as the bad-a$$ cell that fights bacteria, yeast, fungi, and viruses. I also bring my friends to help.

TH2- I'm designed to make antibodies. That way if a disease comes in, I will have my patriot missile babies attack and destroy.

Vaccines have adjuvants added to them, as a way to further stimulate the immune system, to ensure that there would be antibodies made to the vaccine, and the immune memory would be robust...that is the protection would be for many years.

(2nd cartoon)

TH1 Cell is saying: I'm too weak to fight infections and bacteria now. What happened?

TH2 Cell: Oh my God! I'm making tons of antibodies! Help!

 

Doesn't this make complete sense in the pandas world? TH2 is large and in charge, creating these rouge antibodies, and TH1 therefore becomes weak and can't fight off anything.

 

By the way, not trying to bring the vaccine issue in at all, but is is one way the TH2/TH1 get out of whack in the first place.

 

He also says in the book: Autoimmunity results in tissue destruction and inflammation.

[SSS]

http://www.suite101.com/content/what-are-th1-and-th2-forms-of-immune-response-a118467

 

 

I did read your link, I don't know what to say, it was a little back and forth.

Anyway, I am going to try this, as I trust our Dr. who is VERY well experienced, and certainly knows about our inflammation, and if it's a hit, I will post and let people know.

[Ozimum]

Last weekend I attended a talk given by Dr Ken Bock on autism and the immune system. He said immune balance is key and our kids immune systems are often skewed to Th2 (though it can also skew the other way to Th1.) If activation of Th2 is dominant then our kids need antioxidants, probiotics, a good fish oil, anti-inflammatories...

 

His book "Healing the Childhood Epidemics" on the 4-A disorders is well worth a read. It makes sense to me and the DAN protocol seems to be working for ds. This is the first term in about 5 or 6 years he hasn't lost a week or more off school due to a heavy cold. He's in such a better place than he was this time last year when PANDAS was rampant! Also, a gut healing diet was a fundamental underpinning for this improvement so that his immune system had a chance to function properly. (If we can get through the winter term here without drama I will be shouting it from the tree tops!)

 

Edit to add that Vit D supports the Treg cells for immune balance. Most of us tend to be low on Vit D! And ds was VERY low as we got started on treatment

Edited June 15, 2011 by Ozimum

[trggirl]

Thank you for posting S & S. I will be very interested in hearing how this works out.

[SSS]

Thank you for posting S & S. I will be very interested in hearing how this works out.

 

Thanks! I will let everyone know.

And I just wanted to add: perhaps my 8 week update sounded negative, but it's not. I am very glad we did our 2 IVIG's. She is BETTER. If I had to gauge before and after, I'd say we are about 70% better, and having the scary breakdowns gone is HUGE. And, there is a virus in our house, perhaps this is what's setting off our latest.