Hopeful signs- sawtooth progress?

[fuelforall]

Well, I've been expressing a lot of frustration over DS9's lack of progress post IVIG.

I remember I was thinking of designing a t-shirt saying "I paid xxxx bucks for the IVIG and all I got was this dysfunctional kid!"

 

The signs of healing have reappeared. After the healing briefly made an appearance for two days Nov 2 and 3, and disappeared for five-six days after, in classic sawtooth fashion, my son's intense anger fits are waning.

 

While his tics are still an issue, particularly the vocal ones, I totally expected them to be the last thing to go. I will be watching this weekend for continued progress. Anxiety issues, motor tics, hyperactivity, etc.

 

So when Dr. K says don't expect to necessarily see healing before eight (count them EIGHT) weeks after treatment, he means it.

 

I wish I had seen more people blog saying it took that long but it seems like EVERYONE here had faster results... so I was pretty down about it all.

 

My wife still doesn't believe yet. But ds9 is treating his little brother better, not snapping as quickly and seems actually able to listen to reason now.

 

Last night was particularly odd in terms of sleep. (he has not of late been complaining about bad dreams which is also hopeful). He usually drops right off but he found he couldn't sleep. So he looked at a book before putting it down and going to sleep. This was unheard of. For one thing, my son rarely reads of his own choosing. He also did not feel it was required that he sleep with his little brother (because he says he never had bad dreams when he sleeps with him)

 

Hope the healing continues. I'll be ready for a bad day here and there, knowing the good days can and will come back. Thanks for letting me air frustrations, everyone.

Michael

[faith]

MICHAEL yay,

 

wow, I'm sooo glad to hear what you're saying. how many days in a row would you say it looks better? the things you mention aren't just flukes that happen once in a while anyway, right? these things are things you basicaly never have with him?

 

this give the rest of us alot of hope.

 

would you mind filling out a post on the Member Profile thread? scroll down to look for it. it'll help the rest of us keep tabs on your experience and progress and you could edit it whenever you want.

 

I pray the good trend continues.

 

 

Faith

[fuelforall]

MICHAEL yay,

 

wow, I'm sooo glad to hear what you're saying. how many days in a row would you say it looks better?

 

 

TWO OR THREE. BELIEVE ME, THAT'S A LOT!

 

the things you mention aren't just flukes that happen once in a while anyway, right? these things are things you basicaly never have with him?

CORRECT

 

this give the rest of us alot of hope.

IF I'M SAYING IT, BELIEVE ME, IT MEANS SOMETHING BECAUSE I AM VERY SKEPTIC OF PROGRESS!

 

would you mind filling out a post on the Member Profile thread? scroll down to look for it. it'll help the rest of us keep tabs on your experience and progress and you could edit it whenever you want.

PHEW, I'LL TRY BUT I NEED TO GET MY ACT TOGETHER ON IT

 

I pray the good trend continues. ME TOO! I'LL TAKE A COUPLE BAD DAYS IF IT LEADS TO CONTINUED PROGRESS!

 

 

Faith

[fuelforall]

An additional note:

During the time my son was NOT healing post-IVIG, there were numerous infections and viruses floating around my house.

 

My other son and my wife are now getting well.

No, neither of them tested positive for strep. But ear infections, sinus infections, asthmatic bronchitis, ran rampant.

 

May be a connection, I dunno.

[sf_mom]

Michael, This is fantastic news!!!!! AND, I can't wait to hear more of his continued progress. My friends son who will be receiving IVIG in two weeks Mother has been very ILL.... possible N1H1 and secondary infections. Well she started taking Azithromycin and 'BAM' she is getting better. I've always told her... get your son better and you'll get better.

 

We make every attempt to keep everyone in the household well. Everyone in the house has been tested for strep including the dog. We give our 2 1/2 year old twins SyImmune x 2 a day. It's Penicillium notatum 4X. For some reason it works like a charm since starting NOT EVEN A COLD.

[fuelforall]

SyImmune? Is that prescription? Tell me more. How did you get it?

I'm always extremely healthy (knock on wood), my wife has been sick a lot the past two years.

[bubbasmom]

Well, I've been expressing a lot of frustration over DS9's lack of progress post IVIG.

I remember I was thinking of designing a t-shirt saying "I paid xxxx bucks for the IVIG and all I got was this dysfunctional kid!"

 

The signs of healing have reappeared. After the healing briefly made an appearance for two days Nov 2 and 3, and disappeared for five-six days after, in classic sawtooth fashion, my son's intense anger fits are waning.

 

While his tics are still an issue, particularly the vocal ones, I totally expected them to be the last thing to go. I will be watching this weekend for continued progress. Anxiety issues, motor tics, hyperactivity, etc.

 

So when Dr. K says don't expect to necessarily see healing before eight (count them EIGHT) weeks after treatment, he means it.

 

I wish I had seen more people blog saying it took that long but it seems like EVERYONE here had faster results... so I was pretty down about it all.

 

My wife still doesn't believe yet. But ds9 is treating his little brother better, not snapping as quickly and seems actually able to listen to reason now.

 

Last night was particularly odd in terms of sleep. (he has not of late been complaining about bad dreams which is also hopeful). He usually drops right off but he found he couldn't sleep. So he looked at a book before putting it down and going to sleep. This was unheard of. For one thing, my son rarely reads of his own choosing. He also did not feel it was required that he sleep with his little brother (because he says he never had bad dreams when he sleeps with him)

 

Hope the healing continues. I'll be ready for a bad day here and there, knowing the good days can and will come back. Thanks for letting me air frustrations, everyone.

Michael

I think you and I have emailed before. I think our kiddos are similar in symptoms, with the intense fits of anger being the strong symptom along with other things. We too did IVIG. Its been 16 days since IVIG. I really think you could market the 'I paid big bucks for IVIG...' shirts! We have seen improvement starting last Wednesday, more interest in school etc. But just found out yesterday my son was exposed to strep again! The same kid he got it from that triggered all of this. So I took him for a strep culture before we upped his antibiotics and my son has a low grade fever and a sore throat. If we have to start over from day one on this PANDAS I will pull my freaking hair out!!

[sf_mom]

Not cheap, company out of Germany, two tablets per day, at start of cold or flu up to three per day.

 

http://syntrion.eu/usa/products/syimmune-tablets

 

Order through the website. Its a little strange how you order. They bill you for shipping and then send you an invoice via e-mail.

 

www.naturalhealinghouse.com/SyImmune.html

 

SyImmune? Is that prescription? Tell me more. How did you get it?

I'm always extremely healthy (knock on wood), my wife has been sick a lot the past two years.

[fuelforall]

How much do you give to a child? Same dosage?

[sf_mom]

two per day...... haven't need to bump them to 3 yet!!!

 

How much do you give to a child? Same dosage?