Sorry Guys

[Pandas_chicago]

pandaschicago- Can you give me an idea of the success of your son's ivig? Did he have ocd or tics? How long did it take for healing? Did ALL of his symptoms resolve, or was he left with any residual issues?

 

 

My son has had a 100% recovery - his case was EXTREMEME and I thought I would not survive it - he had OCD/Tic and onset of Tourettes - he had seperation anxiety, low temperment (anything made him made) - super hyper and sensory...this happened over night ...he had never been sick came home with a few - woke up 1:00 a.m.

 

Now - when he had the IVIG - the OCD/Tics and onset of tourettes went away first ...I would say totally gone within one month. sensory went next - about 6 months...he didn't want to wear buttons...etc......hyper activity slowed down around the same time and say normal around 1 year...seperation anxiety and low temperment were the longist residual issues these took about 2 years...he was in 1st grade and when this happened he was out of school for 90 days... when he went back to school we would drive him to school, pick him up at lunch (1 hour) , bring him back and pick him up - he could deal with 2 hour increments. 2nd grade we would drive him to school, pick him up at lunch and bring him back for recess (1/2) , pick him up at the end of school - the last month of second grade - I would sit in the lunch room with him at his table 2 days a week ...All the kids love him so they didn't care - 3rd grade he was back to school fulltime....

 

He is now in 5th grade - back to normal .....sleepovers - all sports - etc.

[dcmom]

That is awsome, and much appreciated!

[T_Mom]

--

[Alex]

No worries. I'm sure you are a hero to the Johnson family and many of us on here. Keep up the good work. I'd love to know if you and Dr. K have compared notes and see if each of you could gain from the others knowledge and experience.

 

Alex

 

Thanks. No, Dr. K and I have not compared notes. I think we are both very busy and the best way to do this may be face-to-face when I come to Chicago in May. This is a complex disease which (like autism) seems to affect no two children in exactly the same way - so the idea of a rigid protocol is probably not in the cards. I hope that, with the think tank experience we can pool everyones experience and come up with some sort of "best practices" statement.

 

Dr. T

 

Dr. T.

 

Why wait until May? We know Dr. K is fairly quick to recommend IVIG. You prefer to try other avenues before proceeding down that path. You and he are probably the leading voices on PANDAS treatment. You care deeply about the patients which is so admirable. With that in mind, it doesn't make sense to delay a meeting of the minds when the two of you are giving confliciting advice. At a minimum you could get a head start on what will be discussed at the think tank.

 

Actually Dr. K is not "fairly quick" to recommend IVIG - my son was treated by doctor K over 5 years ago...the process being antibiotics - , steriod treatment, weekly blood draws doing DNASE testing - after 6 months of his DNASE not going below 950- Dr. K then opted for IVIG - now...being that he has treated hundreds of PANDAS children all over the world - and that he has a huge success rate in treating this kids - I think he has fine tuned his process..meaning that ..my son received IVIG a total of 6 months after onset - if a child comes into his office who has been suffering with pandas for lets say a year or two - ....from onset ...and Dr. K treats him with Steriods...(due to no active strep) - antibiotics won't work - and symptoms still remain ...next logical step is IVIG - which would be 12-24 months from onset...The timeframe of treatment is determined from onset of the disease.

 

IVIG - is VERY safe and is used for MANY MANY other illness -

 

PANDAS_Chicago,

 

I think in certain cases Dr. K is fairly quick to recommend IVIG. Given what he knows today after 5 more years of treating PANDAS from when you first saw him, I wouldn't be suprised that instead of 6 months of blood draws and antibiotics and steroid treatment that he would do the phone consult with you and recommend IVIG. That doesn't mean that that is a bad thing, because it is based on years more of experience treating similar cases. When we first consulted with Dr. K last spring, we gave my son's health history which included an explosion of PANDAS symptoms the month prior following an untreated strep infection followed by several weeks of antibioitcs which helped but did not eliminate symptoms. We also realized during the phone consult that my son had a prior milder PANDAS episode several years earlier from which he never completely recovered. Based on the emailed medical history and the phone consultation, Dr. K recommened IVIG. No further antibiotic tests, no steroid burst. Why did he go right to IVIG? Probably becasue five years prior in similar cases he was trying months of antibiotics and other things to see if he could take care of the PANDAS that way. At some point with certain types of cases he decided that there is no reason to pursue that course becasue he found it doesn't work.

 

My wife and I of course got on this forum and listened to the various opinions of the other parents and pretty much talked ourselves out of IVIG. Pretty soon we're trying various supplements, throwing out our portable phones, seeing an acupuncturist, having my son wear a tinfoil hat in the shape of a pyramid to concentrate the universe's energy and so on. Then ten months later where were we? Back to Dr. K and following his advice.

 

My point is that at this point, if a PANDAS parent consults with Dr. K and he says IVIG then it is because he has treated hundreds of similar cases, many of which in the beginning I am sure he tried anything and everthing before resorting to IVIG. At some point, in the cases that met the criteria, it no longer made rational sense to pursue those avenues because they proved ineffective. With SF Mom's younger children, their cases are probably different then those for which he now fairly quickly recommends IVIG, and also they are younger. Since in Dr. K's experience he has found that IVIG doesn't seem to work as well as a child approaches puberty, in the older kids he probably feels it is important to proceed with IVIG to maximize the benefit.

 

Bottom line, if Dr. K recommends IVIG, he is doing so based on his vast experience. Ask tough questions, seek other opinions, try other approaches, but give the man's perspective its due respect.

 

In regard to Dr. T and Dr. K differing, they are both brilliant, dedicated, and caring physicians that want nothing more then to help our kids. If they have knowledge that the other doesn't, like Dr. T having good IVIG success with older kids or good succes with other antibiotics then it doesn't make sense for them to delay sharing that knowledge with eachother.

 

Alex

[P_Mom]

Pandas Chicago......

 

Hi......but, your son is still on antibiotics....so, I know you prefer to call it remission because you once told me "I believe when a child has PANDAS...he will always have PANDAS"

[matis_mom]

I think in certain cases Dr. K is fairly quick to recommend IVIG. Given what he knows today after 5 more years of treating PANDAS from when you first saw him, I wouldn't be suprised that instead of 6 months of blood draws and antibiotics and steroid treatment that he would do the phone consult with you and recommend IVIG. That doesn't mean that that is a bad thing, because it is based on years more of experience treating similar cases. When we first consulted with Dr. K last spring, we gave my son's health history which included an explosion of PANDAS symptoms the month prior following an untreated strep infection followed by several weeks of antibioitcs which helped but did not eliminate symptoms. We also realized during the phone consult that my son had a prior milder PANDAS episode several years earlier from which he never completely recovered. Based on the emailed medical history and the phone consultation, Dr. K recommened IVIG. No further antibiotic tests, no steroid burst. Why did he go right to IVIG? Probably becasue five years prior in similar cases he was trying months of antibiotics and other things to see if he could take care of the PANDAS that way. At some point with certain types of cases he decided that there is no reason to pursue that course becasue he found it doesn't work.

 

My wife and I of course got on this forum and listened to the various opinions of the other parents and pretty much talked ourselves out of IVIG. Pretty soon we're trying various supplements, throwing out our portable phones, seeing an acupuncturist, having my son wear a tinfoil hat in the shape of a pyramid to concentrate the universe's energy and so on. Then ten months later where were we? Back to Dr. K and following his advice.

 

My point is that at this point, if a PANDAS parent consults with Dr. K and he says IVIG then it is because he has treated hundreds of similar cases, many of which in the beginning I am sure he tried anything and everthing before resorting to IVIG. At some point, in the cases that met the criteria, it no longer made rational sense to pursue those avenues because they proved ineffective. With SF Mom's younger children, their cases are probably different then those for which he now fairly quickly recommends IVIG, and also they are younger. Since in Dr. K's experience he has found that IVIG doesn't seem to work as well as a child approaches puberty, in the older kids he probably feels it is important to proceed with IVIG to maximize the benefit.

 

Bottom line, if Dr. K recommends IVIG, he is doing so based on his vast experience. Ask tough questions, seek other opinions, try other approaches, but give the man's perspective its due respect.

 

In regard to Dr. T and Dr. K differing, they are both brilliant, dedicated, and caring physicians that want nothing more then to help our kids. If they have knowledge that the other doesn't, like Dr. T having good IVIG success with older kids or good succes with other antibiotics then it doesn't make sense for them to delay sharing that knowledge with eachother.

 

Alex

Thanks for that posting, I sort of need to hear that... and had a good laugh with the tinfoil pyramid

We were working with a doctor who diagnosed PANDAS at the first visit and, although the diagnosis was right, the treatment was not effective. We spent months on different antibiotics and tons of supplements, saw improvement on overall health, but no relief on the neurological arena... Then we saw Dr. L and after a month of Augmentin and steroids, we had our child back! Unfortunately it didn't "stick" all the way (got re-exposed twice!), but we are going back for our follow up and will consider IVIG in a heartbeat!

We'll still keep up the supplements, probiotics, etc, but if I had to choose between one and the other (and it may come to that point if insurance doesn't cover IVIG!), I'll choose what has been proven to work.

I know some prefer the gentler, more natural approach, but every day that pases is a day of their childhood that we can't get back, and they do SUFFER it.