IVIG for dd9

[sf_mom]

Dahhhhhhhhhhh! I did not make the relationship correlation until now. Do you plan to do a 6 month post IVIG blood draw too?

 

-Wendy

[EAMom]

Dahhhhhhhhhhh! I did not make the relationship correlation until now. Do you plan to do a 6 month post IVIG blood draw too?

 

-Wendy

 

Maybe 6 mo. or 1 year...we might also might do another draw if symptoms start to worsen again.

[sf_mom]

By the way.... you realize our children got sick around the same time. It was Thanksgiving weekend 2007 that our kids got sick and your daughter was January 2008. We were living in the the city at the time so not too far away. I think Diana's son also got sick around that time too. Do you remember anything about pink eye in conjunction with high fever. For us, the pink eye set in prior to the fever.

[faith]

lol, thanks for clearing that up EAmom. So Busters child and your child are one and the same?

 

Faith

[EAMom]

By the way.... you realize our children got sick around the same time. It was Thanksgiving weekend 2007 that our kids got sick and your daughter was January 2008. We were living in the the city at the time so not too far away. I think Diana's son also got sick around that time too. Do you remember anything about pink eye in conjunction with high fever. For us, the pink eye set in prior to the fever.

 

Peggysue's dd also got sick fall 07. She lives in Sunnyvale and her dd goes to a school which is walking distance from my house. I think there was a strain of strep that season going around the bay area.

[EAMom]

yup

[smartyjones]

She kept saying "listen, listen" but couldn't express what was driving her extreme behavior

 

glad to hear your daughter is doing well!

 

Is there a name for that? My son does something very similar but he yells and whines "I'm trying to tell you something" while he may be sitting in my lap with my full attention trying to help him sort it out.

[Buster]

She kept saying "listen, listen" but couldn't express what was driving her extreme behavior

 

glad to hear your daughter is doing well!

 

Is there a name for that? My son does something very similar but he yells and whines "I'm trying to tell you something" while he may be sitting in my lap with my full attention trying to help him sort it out.

 

frustration

[Buster]

We're now at 13 weeks post-IVIG

 

Hi Folks,

 

We're now 12 weeks post-IVIG. Overall we're good. We do have some slight defiance and bossiness coming back it. It's sort of there and then gone. Hoping it is nothing...

 

 

-----------

 

Week 1: significant escalation of symptoms, movement disorders, tremor, contamination fears, vocal tic, very irritable

Week 2: continued escalation of symptoms. Very intense but short lived. Interestingly like watching last 6 months on fast reverse. Angry, lashing out, eating issues, handwriting issues.

Week 3: school starts. She's interested in school and handwriting has improved. Margins are much better. School teacher indicates dd9 is somewhat defiant in class.

Week 4: lots of itchiness. slight food restriction. dramatic fall off of symptoms. concerns about wearing glasses in public, measurement compulsions disappear

Week 5: calm, quiet -- some social anxiety when at a large family party

Week 6: more calm -- no rages for a week

Week 7: calm -- willingly does homework -- is remembering math facts, spelling is eratic, getting along well with sister

Week 8: calm, happy -- able to brush teeth alone -- first time in 2 years.

Week 9: calm, happy -- enjoys school, likes trumpet, some handwriting issues still, very slight verbal tic

Week 10: playing with sister -- laughing, willingly does homework, handwriting improves

Week 11: overall happy. Some intermittent handwritting changes

Week 12: some slight hand tremor hoping it is nothing. Some slight defiance. Overall good though

Week 13: more defiance and some bossiness. Not sure what's happening

 

On the CaM Kinase, we ran a mini-longitudinal study here. Our dd9 was at:

183% not in exacerbation (April),

253% during exacerbation (June),

and at 170.5% on post prednisone burst (Aug).

and 119% at 6 weeks postIVIG (Sept)

 

For those tracking anti-Lysogangliosides, anti-Tubulin, anti-D1, anti-D2....

 

At 6 weeks postIVIG (Sept):

Cam Kinase II was down to 119%

Anti-lysogangliosides at 1280 -- still really high

Anti-Tubulin at 8000 -- elevated

Anti-D1 at 16000 -- really high

Anti-D2 at 16000

 

So while Cam Kinase II was down, no change on other measures....

 

Not at all sure what this means. It may mean that antibody 24.3.1 was removed, but the other anti-lysogangliosides are still in the blood. Also might mean that what we are seeing post-IVIG is the BBB was closed.

 

 

Buster

[Betty04]

We're now at 13 weeks post-IVIG

 

Hi Folks,

 

We're now 12 weeks post-IVIG. Overall we're good. We do have some slight defiance and bossiness coming back it. It's sort of there and then gone. Hoping it is nothing...

 

 

-----------

 

Week 1: significant escalation of symptoms, movement disorders, tremor, contamination fears, vocal tic, very irritable

Week 2: continued escalation of symptoms. Very intense but short lived. Interestingly like watching last 6 months on fast reverse. Angry, lashing out, eating issues, handwriting issues.

Week 3: school starts. She's interested in school and handwriting has improved. Margins are much better. School teacher indicates dd9 is somewhat defiant in class.

Week 4: lots of itchiness. slight food restriction. dramatic fall off of symptoms. concerns about wearing glasses in public, measurement compulsions disappear

Week 5: calm, quiet -- some social anxiety when at a large family party

Week 6: more calm -- no rages for a week

Week 7: calm -- willingly does homework -- is remembering math facts, spelling is eratic, getting along well with sister

Week 8: calm, happy -- able to brush teeth alone -- first time in 2 years.

Week 9: calm, happy -- enjoys school, likes trumpet, some handwriting issues still, very slight verbal tic

Week 10: playing with sister -- laughing, willingly does homework, handwriting improves

Week 11: overall happy. Some intermittent handwritting changes

Week 12: some slight hand tremor hoping it is nothing. Some slight defiance. Overall good though

Week 13: more defiance and some bossiness. Not sure what's happening

 

On the CaM Kinase, we ran a mini-longitudinal study here. Our dd9 was at:

183% not in exacerbation (April),

253% during exacerbation (June),

and at 170.5% on post prednisone burst (Aug).

and 119% at 6 weeks postIVIG (Sept)

 

For those tracking anti-Lysogangliosides, anti-Tubulin, anti-D1, anti-D2....

 

At 6 weeks postIVIG (Sept):

Cam Kinase II was down to 119%

Anti-lysogangliosides at 1280 -- still really high

Anti-Tubulin at 8000 -- elevated

Anti-D1 at 16000 -- really high

Anti-D2 at 16000

 

So while Cam Kinase II was down, no change on other measures....

 

Not at all sure what this means. It may mean that antibody 24.3.1 was removed, but the other anti-lysogangliosides are still in the blood. Also might mean that what we are seeing post-IVIG is the BBB was closed.

 

 

Buster

 

 

Buster-

 

Just curious... have you considered a higher dose of Azithromycin or high dose Augmentin to see if you get further improvements? Hope things continue to improve!

[fuelforall]

Hi, Buster,

 

Just starting week 3 here post IVIG. Symptoms were unmoved for two weeks- mood lability, hyperactive, vocal tics, irritable , yelling, angry, generally a kid no one like to have around the house. Holds it in at school, lets fly afterwards.

 

SO.... now things are worse. Significant escalation yesterday and today. No brain power, all instinct. His way or highway. Smashing things in frustration.

 

Good to see change but not the change hoped for. Maybe pendulum will swing back? Your thoughts?

 

Michael

 

Week 1: significant escalation of symptoms, movement disorders, tremor, contamination fears, vocal tic, very irritable

Week 2: continued escalation of symptoms. Very intense but short lived. Interestingly like watching last 6 months on fast reverse. Angry, lashing out, eating issues, handwriting issues.

Week 3: school starts. She's interested in school and handwriting has improved. Margins are much better. School teacher indicates dd9 is somewhat defiant in class.

[fuelforall]

Oh yeah, I forgot. Sleep issues worsening as well.

[EAMom]

If you are still on on 250mg Azith 2x weekly, I would definitely bump up the antibiotics. How much does your son weigh? Many others on this forum are on full-strength abs (usually augmentin or azith) long term (sometimes it takes a couple of weeks or more to see if the higher dose helps). For example, Worried dad's son (after multiple IVIG's) is finally responding to high doses of Augmentin (very high Saving Sammy dose--2000mg/day). My dd is on 250mg/day of Azith (weighs 53 pounds)....we've noticed a difference when we've tried to drop her to 125mg/day (after 10 mo!). Others are on similar doses of Azith (or more)...Colleern, Diana, SFmom etc. I think SFmom's son is smaller than my dd and he gets 500mg of Azith/day.

I think Augmentin can also work (esp. worthwhile to try if 1 mo. of high dose azith doesn't help) but that also needs to be dosed appropriately (the highest possible dose for your son's weight).

 

Now isn't the time to be conservative with abs.

 

I don't know if some of these kids have intracellular strep hiding out, or other infections...but clearly, the higher doses of abs have been beneficial for many many many of us.

 

It is also important to prevent other infections (that can cause a relapse)...so the abs will help this.

 

I would also culture family members for strep to make sure you don't have a carrier.

[Buster]

Michael,

 

I'm sorry to hear that things are worse now 3 weeks post-IVIG. What's your son's weight and what dosing of IVIG did you use?

 

In an earlier post, you indicated that your son was on very low-dose antibiotics. Are you confident that your son hasn't been exposed to strep and didn't have an active infection pre-IVIG?

 

At a minimum, it's worth getting a throat culture for your son and other members of household. I'd certainly recommend reading the posts by others here regarding higher antibiotic propholaxis (even post-IVIG).

 

Something to remember is that the antibodies in IVIG seem to last only 4-6 weeks. So while IVIG likely closes open blood-brain barrier (due to significant anti-inflammatory effects) and may remove anti-host antibodies... your son would still be vulnerable to another attack post IVIG -- i.e., IVIG just has the potential of reducing the anti-neuronal antibodies, not removing them.

 

If my kid, I'd recommend upping the antibiotics to a therapeutic dose for 30 days.

 

Hoping to hear better news,

 

Buster

 

Just starting week 3 here post IVIG.... now things are worse. Significant escalation yesterday and today. No brain power, all instinct. His way or highway. Smashing things in frustration.

 

Good to see change but not the change hoped for. Maybe pendulum will swing back? Your thoughts?

[EAMom]

Also, are you giving advil? I would add that in for a while. We find it helped our dd sleep as well. Perhaps cutting down on brain inflammation? Many others have found symptom relief with advil.