IV poll

[melanie]

Thanks for answering,Im so interested in this!

 

Melanie

[MomWithOCDSon]

Sorry Melanie. We can't vote because we haven't done IVIG at this point. I'm REALLY looking forward to seeing the responses, though! Thanks for posting the poll!

[Fixit]

me too, as it think we are heading that way very soon....sadly.....

[Suzan]

I can't vote since our first IVIG was less than 1 gm. I guess you are probably mostly interested in those who get higher doses right?

 

Susan

[melanie]

I can't vote since our first IVIG was less than 1 gm. I guess you are probably mostly interested in those who get higher doses right?

 

Susan

 

I should have written other but what dosage did you get lower than 1g?

[Suzan]

I can't vote since our first IVIG was less than 1 gm. I guess you are probably mostly interested in those who get higher doses right?

 

Susan

 

I should have written other but what dosage did you get lower than 1g?

 

We got .4 gm and next we go to something like .75 I think. This is not the protocol from the pandas specialists though..... We are not cured after our .4 gm dose but she is on a reduced abx dose now and holding her own, not perfect but I'd say 50% improved.

 

Susan

[trggirl]

Yikes, the numbers aren't looking too good so far!

[Johnsmom]

Okay so now lets see the Dr K protocol people. Are they even on this forum anymore?

 

If you're not here how do you vote?

[Debbie1]

It's been a long time since I posted an update, but I saw this post and thought it would be an appropriate time. ds8 had IVIG almost 7 weeks ago and is doing great. He had 1.5mg/kg over 2 days. As of now I would say his symptoms are probably 75% better. We are hopeful that we will see continued improvement, but we do have plans to repeat IVIG at the end of June if he is not 100% or close to 100%. Our only regeret is not doing IVIG sooner.

 

dd13 had IVIG just about 4 weeks ago. She has had PANDAS longer (we first saw eye blinking six years ago, about six months later she had a full blown exacerbation). She has definitely improved since before IVIG, probably about 50% at the moment. We are hopeful that she will continue to improve over the next several weeks just as her brother has. We have plans to repeat IVIG in August if she is not close to 100% by then.

[melanie]

Debbie,

 

Who did your IVIG?

[Johnsmom]

Thanks Debbie-

 

I am so glad you posted. Thanks for keeping in contact. Sounds like things are going okay.

 

Ann

 

ps was it drk you saw?

 

It's been a long time since I posted an update, but I saw this post and thought it would be an appropriate time. ds8 had IVIG almost 7 weeks ago and is doing great. He had 1.5mg/kg over 2 days. As of now I would say his symptoms are probably 75% better. We are hopeful that we will see continued improvement, but we do have plans to repeat IVIG at the end of June if he is not 100% or close to 100%. Our only regeret is not doing IVIG sooner.

 

dd13 had IVIG just about 4 weeks ago. She has had PANDAS longer (we first saw eye blinking six years ago, about six months later she had a full blown exacerbation). She has definitely improved since before IVIG, probably about 50% at the moment. We are hopeful that she will continue to improve over the next several weeks just as her brother has. We have plans to repeat IVIG in August if she is not close to 100% by then.

[Debbie1]

We did IVIG with Dr. B. and are so grateful for finding him. My kids have had PANDAS for several years, but were only properly diagnosed about a year and a half ago. My kids improved tremendously on antibiotics (and steroids at one point), although not 100%, but continuously relapsed when around others with strep. Since the diagnosis we have seen several doctors, most of whom told us that my kids were too mild for IVIG or that my insurance will never cover it. Dr. B. was the first doctor to tell us that the duration of time that my kids have suffered with this should be considered, not just the severity of symptoms. He is the only doctor that looked into our insurance coverage, and fortunately, we were covered. Post-IVIG my kids are better than they have been in a long time and best of all, THEY SAY they feel much better. They are not 100% yet and I don't know if they will relapse or what to expect in the future, but for now, we feel blessed to have a doctor that is willing to treat them and see them through this.

[sf_mom]

I am so happy to read your update and I look forward to hearing of continued recovery!!

 

We did IVIG with Dr. B. and are so grateful for finding him. My kids have had PANDAS for several years, but were only properly diagnosed about a year and a half ago. My kids improved tremendously on antibiotics (and steroids at one point), although not 100%, but continuously relapsed when around others with strep. Since the diagnosis we have seen several doctors, most of whom told us that my kids were too mild for IVIG or that my insurance will never cover it. Dr. B. was the first doctor to tell us that the duration of time that my kids have suffered with this should be considered, not just the severity of symptoms. He is the only doctor that looked into our insurance coverage, and fortunately, we were covered. Post-IVIG my kids are better than they have been in a long time and best of all, THEY SAY they feel much better. They are not 100% yet and I don't know if they will relapse or what to expect in the future, but for now, we feel blessed to have a doctor that is willing to treat them and see them through this.

[peglem]

I didn't do the survey because nothing fit. But my 15 yo daughter who we think has had this since infancy, had 2 very low dose (standard for immune deficiency) <.5mg/kg. One in March and one in April. She was a bit worse after the 1st one, then much, much worse after the second one. We did a 7 day steroid burst shortly after and things improved slightly. In May we had 1.5mg/kg, again with a slight improvement, but I was still kind of freaking out because prior to the 1st IVIG we had 3 months of wonderful (relatively speaking). So, we repeated the abx regimen that brought us our 1st real remission in many years- rifampin/augmentin. This we had used last December, and until we saw the results, we didn't know how good my daughter could be....we saw some early childhood development beginning, that had been disrupted when it should have happened. A few days after finishing that combo, about 3 & 1/2 weeks after the HD IVIG, she suddenly snapped back to terrific- so I don't know if it was the IVIG or the abx that did the trick.

But tomorrow and Friday(okay, really today) we're doing another 1.5mg/kg. I'm going to hold on this time, if I see exacerbation, and just wait it out- unless it goes longer than about 4 weeks.

 

I have to tell you, seeing your 15 year old finally sharing a smile with you and relating to you, seeking you out for comfort when its never happened before....learning to say mom, wanting to be cuddled...

Well, I don't care if its just managing the disorder instead of a cure- its much more than I had before, when everything was completely unmanageable and there was no hope.

[Kay]

Good thoughts Peg going out to you and your daughter for this next round of IVIG, hoping you get the results you need. That smile says it all doesn't it!

 

 

I didn't do the survey because nothing fit. But my 15 yo daughter who we think has had this since infancy, had 2 very low dose (standard for immune deficiency) <.5mg/kg. One in March and one in April. She was a bit worse after the 1st one, then much, much worse after the second one. We did a 7 day steroid burst shortly after and things improved slightly. In May we had 1.5mg/kg, again with a slight improvement, but I was still kind of freaking out because prior to the 1st IVIG we had 3 months of wonderful (relatively speaking). So, we repeated the abx regimen that brought us our 1st real remission in many years- rifampin/augmentin. This we had used last December, and until we saw the results, we didn't know how good my daughter could be....we saw some early childhood development beginning, that had been disrupted when it should have happened. A few days after finishing that combo, about 3 & 1/2 weeks after the HD IVIG, she suddenly snapped back to terrific- so I don't know if it was the IVIG or the abx that did the trick.

But tomorrow and Friday(okay, really today) we're doing another 1.5mg/kg. I'm going to hold on this time, if I see exacerbation, and just wait it out- unless it goes longer than about 4 weeks.

 

I have to tell you, seeing your 15 year old finally sharing a smile with you and relating to you, seeking you out for comfort when its never happened before....learning to say mom, wanting to be cuddled...

Well, I don't care if its just managing the disorder instead of a cure- its much more than I had before, when everything was completely unmanageable and there was no hope.