Jump to content
ACN Latitudes Forums

"Epiphany Moment" 12 weeks Post IVIG anyone?


Recommended Posts

DS 8 is almost 8 weeks post IVIG. Dr K. talks about an epiphany moment of total conversion to normal state around 12 weeks post IVIG if all goes well in the interim. He said (and as we all know by now) the bone marrow post IVIG shuts down production of antibodies since there are so many donor antibodies around. Once those start falling off at 12 weeks or so, the bone marrow restarts and will reboot itself to not produce any undesirable antibodies anymore and the child returns to normal.

What really happens? Can anyone tell me what to look for? How does this conversion of the bone marrow happen? Gradual? sudden? overnight? How do I know its happened? Blood test?

My DS hasn't been "normal" normal since 22 months of age so I don't really know what'll appear or rather who'll appear! I guess if I get a typical 8 year old I will be in seventh heaven and ready to die at that instant! DS has always been kind of 18 months delayed overall and had been slowly catching up as he turned 7 but still delayed in many aspects. I understand its not a magical conversion but Dr. K made it sound so full of hope I almost hugged him at that moment and he looked appalled at the suggestion " No no, I couldn't, Im very respectful like that" LOL. :) He was soooooooo sweet and just totally awesome with DS. DH and I were grinning for a while after that. Brought a smile to our grim faces during DS IVIG. I'll just give him a big old hug the next time I see him before he can react! :lol:

Anyone experienced this "aha" moment? Should I even expect it? Fool's paradise perhaps.....

Thanks so much

Jodie

Link to post
Share on other sites
DS 8 is almost 8 weeks post IVIG. Dr K. talks about an epiphany moment of total conversion to normal state around 12 weeks post IVIG if all goes well in the interim. He said (and as we all know by now) the bone marrow post IVIG shuts down production of antibodies since there are so many donor antibodies around. Once those start falling off at 12 weeks or so, the bone marrow restarts and will reboot itself to not produce any undesirable antibodies anymore and the child returns to normal.

What really happens? Can anyone tell me what to look for? How does this conversion of the bone marrow happen? Gradual? sudden? overnight? How do I know its happened? Blood test?

My DS hasn't been "normal" normal since 22 months of age so I don't really know what'll appear or rather who'll appear! I guess if I get a typical 8 year old I will be in seventh heaven and ready to die at that instant! DS has always been kind of 18 months delayed overall and had been slowly catching up as he turned 7 but still delayed in many aspects. I understand its not a magical conversion but Dr. K made it sound so full of hope I almost hugged him at that moment and he looked appalled at the suggestion " No no, I couldn't, Im very respectful like that" LOL. :) He was soooooooo sweet and just totally awesome with DS. DH and I were grinning for a while after that. Brought a smile to our grim faces during DS IVIG. I'll just give him a big old hug the next time I see him before he can react! :lol:

Anyone experienced this "aha" moment? Should I even expect it? Fool's paradise perhaps.....

Thanks so much

Jodie

 

 

I have nothing helpful to add... but wanted to thank you for posting it... I needed to read this today! We are 8 weeks + 4 days post my younger son's IVIG, and things have been up and down... but reading this was uplifting and hopeful! Thanks!!

 

- Karen

 

 

We have the same questions about our DS11--something changed around 22 mo for us, too! We are about 12 weeks post IVIG #2. We are doing the best we have in a long time. I'm not holding out for the epiphany moment. I'll take gradual, steady improvement. (If we get an epiphany moment, I won't turn it down, though!! :lol:

 

Re the hugging Dr. K, he is really "weird" this way. I'm not a "huggy" person (I'm weird, too!), so I don't speak from experience with him, just from what I have heard. From what I understand, he doesn't like to be touched. Maybe a high 5 would work!

 

-Dawn

Link to post
Share on other sites

I'd like to refer to the symptoms as FADING over time. The 'A HA' moment for me is when I gain confidence that the treatment was working.... it was nothing that happened suddenly, he just looked different, more mature, healthier, like a normal kid.

Link to post
Share on other sites

I believe it happened like this for peglem. She said at 1:00 pm one day her daughter began to normalize...maybe she will chime in with more details.

DD10 is only 6 1/2 weeks post, but I would concur with SF Mom from what I've seen thus far; less and less and less....

keeping fingers crossed....

Link to post
Share on other sites

I'm giving the link to that thread, since it contains info from other parents about their experiences w/ sudden onset improvement. Since that post- Allie has been up and down, mostly up and mostly improving. She has not had a really bad day since.

http://www.latitudes.org/forums/index.php?...ic=8460&hl=

 

I believe it happened like this for peglem. She said at 1:00 pm one day her daughter began to normalize...maybe she will chime in with more details.
DD10 is only 6 1/2 weeks post, but I would concur with SF Mom from what I've seen thus far; less and less and less....

keeping fingers crossed....

Edited by peglem
Link to post
Share on other sites

The middle of the Chinese restaurant was us. But my son wasn't on any meds or IVIG at all, but his high level tics just stopped and stayed stopped for weeks. It was mid-meal. It was really really odd.

 

didn't someone go to dinner, chinese i thnk...and right in the middle of a meltdown or something...it just stopped and stayed that way
Link to post
Share on other sites
The middle of the Chinese restaurant was us. But my son wasn't on any meds or IVIG at all, but his high level tics just stopped and stayed stopped for weeks. It was mid-meal. It was really really odd.

 

didn't someone go to dinner, chinese i thnk...and right in the middle of a meltdown or something...it just stopped and stayed that way

Thanks guys. These stories are all so uplifting. I hope I get to experience some of the good stuff too. So far lots of ups and downs, herxing, flipping and switching antibiotics. Am afraid of doing a steroid burst because I hear once the effects wear off, the flare ups come hard and fast. I have seen a few good days and then have also seen new tics emerge on Biaxin. Keeping my fingers crossed.- Jodie

Link to post
Share on other sites
The middle of the Chinese restaurant was us. But my son wasn't on any meds or IVIG at all, but his high level tics just stopped and stayed stopped for weeks. It was mid-meal. It was really really odd.

 

didn't someone go to dinner, chinese i thnk...and right in the middle of a meltdown or something...it just stopped and stayed that way

Thanks guys. These stories are all so uplifting. I hope I get to experience some of the good stuff too. So far lots of ups and downs, herxing, flipping and switching antibiotics. Am afraid of doing a steroid burst because I hear once the effects wear off, the flare ups come hard and fast. I have seen a few good days and then have also seen new tics emerge on Biaxin. Keeping my fingers crossed.- Jodie

 

 

Hi Jodie, I just sent you a pm--

Just for the record, with my daughter the ** steroid burst essentially boosted her back to 95-98% and then full strength antibiotics continued for months...and never a back-lash, I believe BECAUSE the antibiotics kept her steady, and continue to do so--just wanted to be sure you know that there are alot of us who have had good success with steroid bursts (when continuing on full antibiotics.)

 

** note: that was her 2nd steroid burst--when we did the first one (9 months earlier with the really bad episode) we did not continue her on full strength antibiotics that first time, and she DID have reactions (PANDAS OCD/mild tics) 3 episodes that fall/winter when she got colds. OCD symptoms diminished each time with 10 day treatments of abx.

 

We found antibiotics to be a key treatment--thankfully.

Edited by T.Mom
Link to post
Share on other sites

We had a sudden cessation of symptoms with my younger son. (No IVIG, only antibiotics) He was is in the BAD episode...I remember the day before he woke up with a new vocal....a low babbling talking voice with a hissing at the end........along with severe OCD....we made an appointment to see our Pastor (what ??? Really? We did think that!!).....the morning of the appointment, he was really bad. Babbling, hissing, grunting, standing in the corner, no eye contact, wouldn't go near or touch us........my husband took him to my mother-in-laws on the way to Church. While standing in the kitchen...he groaned loudly, stooped down, pulled his shirt over his knees, moaned some more, stood up and was "normal." He walked over to my husband, PUT HIS ARM AROUND HIM....and said.."Hi Dad." My husband broke down in tears as they hugged. Well, he took him to Church anyway....was totally normal while out Pastor spoke with him! :) Figures! :) It was not for them to see..I guess.

So, I do know what he (Dr. K) means.

 

Oh, by the way...after that point..the vocals, horrible episode never returned....from that moment, he just got better and better.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...