IVIG: how thorough of a cure has it been for you?

[dcmom]

on a lighter note- pandas TOTALLY affects dd's taste buds (i won't even delve into appetite and restrictive eating, here):

 

I make homemade pizza. For years it was her favorite dinner, with milk.

 

All of a sudden (at some point during pandas episode) she HATED pizza and milk. Refused to eat it.

 

In the hospital, after the second treatment- she requested milk! (first time in about 9 mos she drank milk)

The week after pex- pizza was her favorite again!

 

Really weird!

 

PS: since the flu- she is better- but won't eat the pizza again

[momto2pandas]

This is so fascinating. We all see our immunologist today, and perhaps I will inquire about steroid bursts - I have had 2 before (very successfully) when suffering infections that got out of control, but the kids have never tried them - we haven't really had justification.

 

What you describe about your dd is exactly what I see in ds3. He can sound out long words, but his ability to read "he" (and not say "heh") has been coming and going for at least a year - despite the fact that he easily learns things harder than that. Numbers, in addition to letters, are frequently written backwards. He can add and subtract with perfect accuracy up to 10, but can't even recognize numbers in the teens. I am no early childhood development person so maybe this is all normal but it seems strange to me.

 

He also gets very frustrated trying to put things to paper. He has written so well at times that we know he is capable but sometimes it seems that he is incapable and he'll get frustrated to tears and will just refuse to try for a long period thereafter (we don't push, but it's very sad to see).

 

Incidentally, we just got test results back for our ds6, who has always tested at the 99+ percentile for everything. I was concerned this fall/winter, as we struggled with all of these infections, that he did not seem to be functioning at his usual level, but his teacher and his tutor (he gets "pull out" gifted treatment at school) denied any problems and kept saying that he was doing great. However, his proxy-IQ tests from December (in the thick of it) came back this time at 93/94 percentile - and they've never before been below 99+ percentile, confirming my impression. It's still a great result but the difference and the trajectory scares me and I'd hate to see his special treatment at school go away.

 

Once again, though - try to argue for steroids, etc. based on the fact that your kids are functioning "only" 2-4 years ahead of grade level. I'm embarassed to even approach it but it makes me sad to see the decline and particularly the frustration that accompanies it.

 

 

Momto2pandas:

 

DD wrote lots of letters, and most numbers backwards, and had huge problems with the teen numbers. This literally changed in a week- post pex. All of a sudden, she could write to 100 perfectly, without help, knew the days of the week in order, and sat and read for over an hour.

 

I really felt, she learned everything, but wasn't able to get it all out, or transfer it to paper, during pandas. Immediately after pex, she tested very advanced in math.

 

We are now having some issues with b and d. She has some trouble with simple sight words- but can sound out really long words. We definately lost a little ground since plasma pheresis- but for the most part she is great.

 

Since your kids are doing well- it is hard to know what you could do. Have you thought of a steroid burst? I plan on trying one for my dd when school (and illness season) is over. I guess you just need to keep a close eye on them

[momto2pandas]

Man, we see this too!

 

"Dear Insurance Company: Please approve many thousands of dollars of tests and meds. When I have a sinus infection, my 3 year old won't eat his sandwich and mixes up b and d. I'm sure you understand."

 

 

 

 

on a lighter note- pandas TOTALLY affects dd's taste buds (i won't even delve into appetite and restrictive eating, here):

 

I make homemade pizza. For years it was her favorite dinner, with milk.

 

All of a sudden (at some point during pandas episode) she HATED pizza and milk. Refused to eat it.

 

In the hospital, after the second treatment- she requested milk! (first time in about 9 mos she drank milk)

The week after pex- pizza was her favorite again!

 

Really weird!

 

PS: since the flu- she is better- but won't eat the pizza again

[momto2pandas]

Exactly what ds6 is like during a "very bad" exacerbation for him (these days).

 

"Dear Insurance Company: My six year old son gets PMS any time he gets green boogers...."

 

 

DC Mom,

 

I responded prior to reading your reply and it is amazing how we have seen similar improvement in certain areas. I would classify our son as easy going too. I often tell people 'PANDAS' is like PMSing 24/7, you are easily frustrated, mood switch, angry, think you are right, will argue any point, etc.

 

mom2pandas-

 

To answer your question about things improving that we didn't attribute to pandas. We had this also. DD had acute, debilitating onset at age 5 1/2. I now think maybe she had it mildly for the year or so before. She was a little bit rigid, inflexible in personality, stubborn, and always had to have things "just right". She is very smart but was always somewhat resistant to schoolwork, reading and writing. She was never as good as her sister in memorizing stuff- abc's, days of the week, song lyrics. This stuff was not part of her sudden onset- but it was gone immediately following plasma pheresis. Those few weeks after, she was actually an easy going kid, read a lot, and instantly memorized things we had been working on (without success) for months.

 

Most of those gains have stayed, except for the easygoing part. Since her relapse, she just hasn't gotten that flexibility back. I imagine it is a bit of "just right" ocd. It isn't a huge issue, though.

[momto2pandas]

Vision? Can you expand on that? It's funny I was just wondering about that. Right when he was diagnosed with PANDAS (bad, classic episode), ds6 (then 4) was vision tested as part of his exam and was found to need glasses, and of course we went to the trouble of getting them. But later on, once the PANDAS was under control, he was screened at school and found to be 20/20 without glasses. Similarly, I was just noticing this week that my ds3's ability to read small print seems to get worse when he is exposed to infections. I had just made note of it and dismissed it.

 

My own vision got REALLY bad REALLY fast during my terrible teen-age episode. I got from 20/40 to 20/650 (eventually got LASIK). I always attributed it to malnutrion (anorexia) but maybe it was an inflammatory process?

 

 

 

Its hard to explain... we feel he was sick much longer then we knew. We have seen huge improvement in restlessness, attention, ability to listen, reasoning, mood switching, temper, clarity, memory, vision, happiness, ability to laugh, kindness, etc. I don't know but its all the low level stuff that might be attributed to ADD, AD/HD type stuff.

 

He said to me the other day and more than once..... 'he has happiness in his heart'. He is a happy kid.

 

 

 

 

Can you expand upon the ways that he is better that you never knew were related to PANDAS? I have seen a bunch of people talk about that and always wonder to what exactly they are referring. I wonder if there are traits in myself and my kids that are related to PANDAS but that I don't recognize as such... I'm guessing there is a lot of that in my 3 year old that for now is "toddler stuff" but that I will come to recognize is more than that.

 

I wish it was 5 years from now and could say absolutely TIC free/no relapses. So far 110% in some areas and 95 to 98% (some transient TICS) in others. Until he is TIC free for years and there are no relapses or flares from exposures it is going to be difficult to say how effective IVIG was or anything else we are doing currently. He is much, much better in other areas that we didn't realize were related to PANDAS.

 

We are also consulting with a nutritionist that someone from this forum referred us to. In addition to IVIG we are doing high dose probiotics (helps to repair gut and manage ingested bacteria), Bentonite Clay (eliminate toxins), high dose B-12 (nerve damage) and fish oil.

 

I thought I'd include this article recently received about probiotics and its benefits.... its very interesting with regards to auto-immune and anti-inflammation disorders.

 

http://markbrudnak.com/Articles/probiotics...immune_anti.htm

 

-Wendy

[nevergiveup]

I want to post my dd's own comments since she is old enough to understand her illness and because ivig changed her life. Although she currently has tics still, they are rather mild unless she has stress on her immune system(exposed to viruses or infection)

My dd had her first pandas attack at 7 years old, she later had another at 9 and then recently had an overwhelming attack at 12. I thought she had remission in between because her coordination and movement disorders disappeared but she tells a different story now that she can talk about it.

She says that I will never understand her suffering the last five years, how the intrusive thoughts consumed her brain constantly for years. She has told me some, how every night she thought she may harm herself that's why she wanted me in her room, I thought it was pandas "separation anxiety" but it was a fear she could't even speak of. Years of this, the thoughts would come and go, harming herself, inappropraite touching thoughts, harming others. She was so little and just hid everything. She still won't tell me everything, says its way too hard but someday she wants to write a book about it to share with other kids living in constant fear of their thoughts. To everyone on the outside she looked like a normal kid maybe a little anxious but that's all. Well here is the point to my long post. She tells all her docs since she received ivig in May , ocd went away about end of June. She doesn't have it anymore, she says for the first time in years she is at peace. For me the only thing I see different is since ivig she has stopped distracting herself constantly. I thought she may of had adhd but she had good grades, but she needed constant distractions for years, to the point of exhausting herself. Let's go here, let's do this, let's play a game, let's sing, let's dance. That's completely gone, we watch tv together, we relax together, we actually now have silent momements. I think the distractions must have been to distract herself because she was having another thought of harming herself. But notable and remarkable, after years of ocd we are now going 9 months no ocd. Now she is on monthly infusions, and she swears that the ivigs have eliminated her intrusive thoughts. So for all the parents with kids under eleven, I wanted you to hear her story. My dd is extremely articulate and a pleasure to be around always was even during the bad times. She hid this, which was probably best because since she couldn't control her thoughts talking about them would not have helped.

[momto2pandas]

This is such great information - thanks. I can relate, from my own childhood. By the time I was 8 I was praying nightly that my life would end and my suffering with it, but I'm virtually certain that I hid it very well (for the most part - couldn't hide the weird zombie stuff that happened when I actually got sick) until the anorexia came and blew my cover. I think that these kids are bright and perceptive enough to know that, among other things, we want them to be happy and well and stake a lot of emotional energy on the hope that they will be. And perhaps they don't want to disappoint (Alice Miller: The Drama of the Gifted Child.) So far my ds's are little and pretty open about their emotions but those days may well be numbered and that's rather scary.

 

 

 

I want to post my dd's own comments since she is old enough to understand her illness and because ivig changed her life. Although she currently has tics still, they are rather mild unless she has stress on her immune system(exposed to viruses or infection)

My dd had her first pandas attack at 7 years old, she later had another at 9 and then recently had an overwhelming attack at 12. I thought she had remission in between because her coordination and movement disorders disappeared but she tells a different story now that she can talk about it.

She says that I will never understand her suffering the last five years, how the intrusive thoughts consumed her brain constantly for years. She has told me some, how every night she thought she may harm herself that's why she wanted me in her room, I thought it was pandas "separation anxiety" but it was a fear she could't even speak of. Years of this, the thoughts would come and go, harming herself, inappropraite touching thoughts, harming others. She was so little and just hid everything. She still won't tell me everything, says its way too hard but someday she wants to write a book about it to share with other kids living in constant fear of their thoughts. To everyone on the outside she looked like a normal kid maybe a little anxious but that's all. Well here is the point to my long post. She tells all her docs since she received ivig in May , ocd went away about end of June. She doesn't have it anymore, she says for the first time in years she is at peace. For me the only thing I see different is since ivig she has stopped distracting herself constantly. I thought she may of had adhd but she had good grades, but she needed constant distractions for years, to the point of exhausting herself. Let's go here, let's do this, let's play a game, let's sing, let's dance. That's completely gone, we watch tv together, we relax together, we actually now have silent momements. I think the distractions must have been to distract herself because she was having another thought of harming herself. But notable and remarkable, after years of ocd we are now going 9 months no ocd. Now she is on monthly infusions, and she swears that the ivigs have eliminated her intrusive thoughts. So for all the parents with kids under eleven, I wanted you to hear her story. My dd is extremely articulate and a pleasure to be around always was even during the bad times. She hid this, which was probably best because since she couldn't control her thoughts talking about them would not have helped.

[Worried_Dad]

Feel like I've repeated our story ad nauseum and regulars on here are probably sick of hearing it! But here's the IVIG part again in a nutshell.

 

Summer 2008 - our son's PANDAS symptoms explode (Exorcist Syndrome) and we're afraid we'll have to hospitalize him. We do IVIG with Dr. K (1.5. mg/kg over 2 days) in October 2008 after partial "treatment dose" of zithromax (10 days @ 1000 mg daily, per advice on this forum) followed by 10-day treatment dose of augmentin (1000 mg daily, switch per Dr. K). See 70% improvement over next 2 months and think the nightmare's over. Wrong! Other boys bring infections home, our PANDAS son has several milder flares, then major (worst ever) exacerbation again in March 2009, OCD completely crippling. Throughout the time when "flares" were occurring post-IVIG round 1, we were on augmentin (500 mg daily - standard Dr. K maint dose) for prophylaxis.

 

Summer 2009 - can't find anyone local to work with Dr. K and order in-network IVIG, so we go back to Chicago for rounds 2 and 3 with Dr. K (1.5 mg/kg over 2 days, 28 days apart). This time, only minor improvement (20-25%) in the 4 months following round 2, 3 months following round 3. We're desperate. Beg Dr. K to try the "Saving Sammy" dose of XR for our son and it works miracles: he starts shedding OCD behaviors at a steady rate and after 4 months on this dose is up to 85%, best he's been in 3 years.

 

So I voted "improved but relapsed." I can't honestly say how much help the 2 rounds of IVIG last summer were, and whether they "set the stage" for the rapid progress on augmentin XR (2000 mg daily). Here's a parent's (non-scientific) gut instinct: our son was still harboring strep somewhere inside him and/or caught it again after IVIG round 1. IVIG is definitely helpful but extremely expensive. If we could do it over again, we'd make sure our son was on the high-dose augmentin XR first, then do IVIG to get maximum benefit.

[kim]

mom2twopandas,

 

I always attributed it to malnutrion (anorexia) but maybe it was an inflammatory process?

 

 

We have had the blurry vision here, so I'm betting inflammation. I had it quite bad with autoimmune rash (skin infection). I truly believe fish oil and multi b with 100 mgs of thiamine were helpful (also took/take turmeric & used lots of pom juice/tart cherry syrup for a while). Some form of Uveitis seemed like a good bet. The post below talks about Benfotiamine for uveitis, but maybe thiamine works ok in some cases too. There are a few more reports of blurry vision on the thread

 

Vision problems (thread)

 

http://www.latitudes.org/forums/index.php?...vision+problems

 

excerpt

http://www.betterhealthresearch.com/news/v...dness-19159004/

 

 

QUOTE

A form of vitamin B1 could become a new and effective treatment for one of the world’s leading causes of blindness, according to Texas scientists.

 

Researchers from the University of Texas Medical Branch at Galveston have presented promising results achieved with benfotiamene, a fat-soluble form of vitamin B1 which is absorbed rapidly by the body and lacks negative side effects.

 

In their study, they injected laboratory rats with toxins that produce a reaction mimicking uveitis and noticed that when the rats were fed benfotiamene they failed to develop any signs of the inflammatory disorder.

 

 

http://autoimmunedisease.suite101.com/article.cfm/uveitis

 

about uveitis

 

As an autoimmune disorder, uveitis may occur alone or it may accompany other systemic autoimmune diseases such as rheumatoid arthritis, Bechet syndrome, sarcoidosis, Kawasaki disease, Reiter disease, psoriasis, ulcerative colitis, multiple sclerosis, systemic lupus erythematosus, or ankylosing spondylitis. Uveitis may also occur in AIDS, cytomegalovirus infection, syphilis, tuberculosis, Lyme disease, and in fungal infections.

 

 

http://www.iherb.com/Source-Naturals-Benfo...blets/7342?at=0

 

Benfotiamine is a more bioavailable derivative of thiamin (Vitamin B-1). Unlike normal thiamine, benfotiamine is fat-soluble and more physiologically active. It supports normal glucose utilization by stimulating transketolase, the enzyme essential for maintaining normal glucose metabolic pathways. Normal glucose levels are also vital for the promotion of endothelial cell health in the kidneys and retinas.

[Iowadawn]

OK. Will play devil's advocate with this poll. The biggest issue I see is in the sampling. This isn't a realistic sample since you are not looking at all the kids that have had IVIG, let alone a random sample, I would venture to say the majority of the people who have had successful IVIGs have moved on with life & are not even members of this present community. The people still seeking to get their kids well will far out number the cured on a forum like this. Everyone, even though so many of us have been hanging on to our britches for far too long, Dr. K has an IVIG report coming out this Spring that is based on his experience in the last decade. Everyone can throw tomatoes at me now!! They will look pretty against all our white snow. Fire away. Dawn

[peglem]

OK. Will play devil's advocate with this poll. The biggest issue I see is in the sampling. This isn't a realistic sample since you are not looking at all the kids that have had IVIG, let alone a random sample, I would venture to say the majority of the people who have had successful IVIGs have moved on with life & are not even members of this present community. The people still seeking to get their kids well will far out number the cured on a forum like this. Everyone, even though so many of us have been hanging on to our britches for far too long, Dr. K has an IVIG report coming out this Spring that is based on his experience in the last decade. Everyone can throw tomatoes at me now!! They will look pretty against all our white snow. Fire away. Dawn

 

Shoot! I'm all out of tomatoes. But anyway, I think you have a valid point! But does that give more weight to the zeros in the last 2 categories: "no improvement" and "made worse" ?

 

I hope Dr. K's report is something we can all access for free and take to our doctors...please let us know when it comes out!

[momto2pandas]

Agreed! This is not mean to be "scientific" information, but I still think it's useful to collect everyone's experiences, especially their descriptions of what "improved" looks like.

 

 

OK. Will play devil's advocate with this poll. The biggest issue I see is in the sampling. This isn't a realistic sample since you are not looking at all the kids that have had IVIG, let alone a random sample, I would venture to say the majority of the people who have had successful IVIGs have moved on with life & are not even members of this present community. The people still seeking to get their kids well will far out number the cured on a forum like this. Everyone, even though so many of us have been hanging on to our britches for far too long, Dr. K has an IVIG report coming out this Spring that is based on his experience in the last decade. Everyone can throw tomatoes at me now!! They will look pretty against all our white snow. Fire away. Dawn

[richae]

please everbody see my entry to the forum under ocd .my son 27 just got ivig because of Autoimmune Encephalitis.On 5th treatment of IVIG out of 15 and severe OCD GONE.New person !!!!!

[sf_mom]

You made my day. I've heard similar stories..... most recently a man well over 60. CONGRATULATIONS to your son and family!!!!

[faith]

please everbody see my entry to the forum under ocd .my son 27 just got ivig because of Autoimmune Encephalitis.On 5th treatment of IVIG out of 15 and severe OCD GONE.New person !!!!!

 

richae,

just curious, why did you hve 15 IVIg treatments if he was good on the fifth. Is that the only symptom your son has had? how long now did he have ocd or other symptoms? And how long would you say his OCD is gone? I did read your other post, I see he has had some other autoimmune problems and health issues. but just wondering how long you see this improvement...

 

thanks so much

Faith