IVIG for dd9

[fuelforall]

Hi, Buster,

Yeah, didn't get any relief onthe 16th day either .

Just started some homeopathic liquid, four drops a day, that is anti-stress, anti-anxiety and actually did see some lessening of pressure. Just started giving him Reiki for anti-inflammation, now I see I have to throw in Vitamin C as well.

Phew, I should get some of those drops for myself dealing with this kid! He can't even say "Im' sorry" any more without it being angry and resentful because, as we know, he is never wrong.

 

We have had all kinds of infections in the house but no one has tested positive for strep. Lots of bronchitis, coughs, ear infections, you name it. My other son and wife have been on antibiotics, Omnicef and Zith respectively.

I am waiting for Cam Kinase results which will be in on Wednesday. Then I will bring up the antibiotic situation. My doctor is amenable to trying things so....

My son weighs 55 lbs and got the standard dosage. 17 units of Gamunex one day, 17 the next.

I am so tired, so stressed, I don't know how everyone does it. Life is ######.

I'm thinking of checking my son's adenoids and tonsils. Don't know what else to do.

 

Michael

 

 

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?

[Buster]

Hi Michael,

 

Just want to check:

 

You're on Omnicef (a Cephalosporin) which is generally effective on gram positive bacteria. As far as I can tell, it is not studied for long term us and has LOTs of warnings especially for any child with stomach or intenstinal disorders. Are you taking the treatment dosage of 7mg/kg. So 183 mg 2x/day (i.e., 366mg/day). Have you been on it for a while?

 

Also it sounds like you are 16 days post IVIG at .65 gm/kg. I'm amazed that they aren't offering prophylaxis post-IVIG having gone forward with IVIG. Is he also on risperdal and clonopin? Some on this forum (noticably WorriedDad) has noticed that Clonopin had an opposite effect for PANDAS kids -- has it had a positive effect in your son's case?

 

Given the dangers associated with Omnicef, I wonder if your ped would support you on a different narrower band antibiotic. Omnicef's a big hammer. In our case (pre-IVIG) we weren't effective with cephalasporins but were effective on azith.

 

Wishing you the very best and sad to hear you've not had a turn.

 

Regards,

 

Buster

 

 

Hi, Buster,

Yeah, didn't get any relief onthe 16th day either .

Just started some homeopathic liquid, four drops a day, that is anti-stress, anti-anxiety and actually did see some lessening of pressure. Just started giving him Reiki for anti-inflammation, now I see I have to throw in Vitamin C as well.

Phew, I should get some of those drops for myself dealing with this kid! He can't even say "Im' sorry" any more without it being angry and resentful because, as we know, he is never wrong.

 

We have had all kinds of infections in the house but no one has tested positive for strep. Lots of bronchitis, coughs, ear infections, you name it. My other son and wife have been on antibiotics, Omnicef and Zith respectively.

I am waiting for Cam Kinase results which will be in on Wednesday. Then I will bring up the antibiotic situation. My doctor is amenable to trying things so....

My son weighs 55 lbs and got the standard dosage. 17 units of Gamunex one day, 17 the next.

I am so tired, so stressed, I don't know how everyone does it. Life is ######.

I'm thinking of checking my son's adenoids and tonsils. Don't know what else to do.

 

Michael

 

 

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?

[fuelforall]

Hi, gotta go.

No, my ds9 is on Zith twice a week.

Omnicef is what my other son is on for ear infection.

Ds9 is on Abilify and Strattera. Doesn't seem to have effects at this point.

 

 

 

Hi Michael,

 

Just want to check:

 

You're on Omnicef (a Cephalosporin) which is generally effective on gram positive bacteria. As far as I can tell, it is not studied for long term us and has LOTs of warnings especially for any child with stomach or intenstinal disorders. Are you taking the treatment dosage of 7mg/kg. So 183 mg 2x/day (i.e., 366mg/day). Have you been on it for a while?

 

Also it sounds like you are 16 days post IVIG at .65 gm/kg. I'm amazed that they aren't offering prophylaxis post-IVIG having gone forward with IVIG. Is he also on risperdal and clonopin? Some on this forum (noticably WorriedDad) has noticed that Clonopin had an opposite effect for PANDAS kids -- has it had a positive effect in your son's case?

 

Given the dangers associated with Omnicef, I wonder if your ped would support you on a different narrower band antibiotic. Omnicef's a big hammer. In our case (pre-IVIG) we weren't effective with cephalasporins but were effective on azith.

 

Wishing you the very best and sad to hear you've not had a turn.

 

Regards,

 

Buster

 

 

Hi, Buster,

Yeah, didn't get any relief onthe 16th day either .

Just started some homeopathic liquid, four drops a day, that is anti-stress, anti-anxiety and actually did see some lessening of pressure. Just started giving him Reiki for anti-inflammation, now I see I have to throw in Vitamin C as well.

Phew, I should get some of those drops for myself dealing with this kid! He can't even say "Im' sorry" any more without it being angry and resentful because, as we know, he is never wrong.

 

We have had all kinds of infections in the house but no one has tested positive for strep. Lots of bronchitis, coughs, ear infections, you name it. My other son and wife have been on antibiotics, Omnicef and Zith respectively.

I am waiting for Cam Kinase results which will be in on Wednesday. Then I will bring up the antibiotic situation. My doctor is amenable to trying things so....

My son weighs 55 lbs and got the standard dosage. 17 units of Gamunex one day, 17 the next.

I am so tired, so stressed, I don't know how everyone does it. Life is ######.

I'm thinking of checking my son's adenoids and tonsils. Don't know what else to do.

 

Michael

 

 

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?

[fuelforall]

And on the 18th day.... behavioral symptoms were much calmer.

DS9 was a normal human being for the most part.

This was Monday the 2nd. His eyes did not narrow into a glare that would melt glaciers. He did not yell. He was still giddy at times but...

One step forward.

 

Of course, this morning was a half step back but he was extremely bored and not doing what he normally does( which is go to school) so he acts out more. I still did not see the narrowed eyes this am. Drove us crazy but it was a little different.

 

Giving him Reichi supplements with juice and calming drops in the a.m. They are anti-anxiety, anti-stress drops for kids- everyone at the health food store takes the adult version and say it helps big time.

 

Cam Kinase results tomorrow. Then we can talk antibiotics hike maybe