ivig effects bad/good and for how long?

[danddd]

I am seriously considering ivig now for my dd. But I am scared to death, like a deer in headlights at having to make the decision.

She has only been diagnosed with pandas, no other learning, neurological problems, etc., (just an anxious kid).

Right now my main concern is her rages, she is strong enough now, while in full rage to bruise me.

Is there anyone in a similar situation:

 

1. child only has pandas as diagnosis

2. is around her age, (9)

3. has not had strep for a year, but is still suffering bad mostly with rages (tics, ocd, and fears still there too).

 

if any of your children are similar, and have done ivig, what were the immidiate and long term effects?

 

I am the only one in the family that is still not sure about trying ivig, I keep thinking what if it reacts wrong in her, and she gets out of whack, and gets worse?

Am I crazy? I am so scared to give her "someone else's" immunoglobulin.

I would be going against the advice of her 2 local specialists who look at ivig as "risk" and "did not see lasting effects" when they used to do it.

I also dont want her doc's to insist I hospitalize her, (which they did before and I didnt appreciate it)

 

thanks for any insight, i am sure you know how i am feeling...........

[nevergiveup]

I am so sorry your dd is not doing well. My dd gets monthly ivig and although there are risks to ivig in regards to blood product, they have been minimized in the last several years. I believe I read somewhere that over 35,000 children receive monthly ivig in the US. There has been no transfer of disease from ivig in the last 10 years. Now, I cannot remember where I read this, but I do know that the ivig is safer now than ever.

My concern for you is Why do your 2 specialists say ivig won't last? I do know it helps and helps a lot in some cases. What are they proposing that will last? Do they have a better track record than ivig? PEX seems to help immediately and you can eliminate some of your worries about ivig? Why would the docs need to hospitalize your dd? For the kids they have treated with ivig that didn't have lasting effects what did these docs do then to help eleviate there disease? Were they successful? I am concerned as to the quality of information you are receiving from your docs?

[LNN]

It took me a very long time to come to terms with my own fears vs. deciding what treatments to give my son. I over-analyze what soap to buy. You can imagine the conversations I had in my head about IVIG.

 

I would never tell you to just ignore your concerns. But it's a scale, with risks of doing IVIG on one side and the risks of doing something else - or doing nothing - on the other side. After a T&A, a year of antibiotics, pex and 3 week bursts of prednisone to stop two episodes, the scales tipped for us. IVIG was the only thing left to try. I could not in clear conscience nurture my own fear of small risk if it meant letting my son struggle through another winter with this disease.

 

Maybe spend a few hours alone on a walk or in a peaceful place and try to sort it all out. I hope you can come to a decision that brings you peace of mind.

[danddd]

Thanks guys,

Unfortunately, they (her docs) dont have a plan except to keep trying different psych meds. Hospitalization, meaning the child assessment unit (proper term I guess for child psych ward) is what they have asked me to do before. They say that because the strep was initially treated, (and has been gone for a lond time) that you are supposed to treat the symptoms. (i.e. psych meds for odc, anxiety etc.).

I had a consult w/ dr.k, and he pertty much reccomended ivig, she just needs to gets some bloodwork done first.

it is hard, do I listen to the docs that have followed her this whole time and know her, or one that I have known for an hour? (i have to say dr. k makes sense to me, and at least with him I have option no one else will offer us).

oh, and her titers have been low for a long time now too, could that make ivig less promising?

 

those of you who chose ivig..........did you do it because he/she was unable to function, or just to get back to "normal"?

Edited June 20, 2010 by danddd

[peglem]

How do you know the strep has been gone for a long time?

The docs that have followed her and know her- is their treatment helping her? It sounds like they are following the outdated advice from NIMH. Dr.K has treated many more cases of PANDAS than probably anyone in the world, so, although he may not know your child- he knows the enemy she is fighting very well!

[LNN]

Have you had a Cam K test from Dr Cunningham? If you're sure your daughter has Pandas, then only treating with psych meds does not make sense to me. In fact, they could be pat of the problem.

 

Were her titers ever high? I'm not sure they're the measurement to be using for decision making. Like measuring how many tissues you use to decide how bad a cold is. Lots of tissues probably means a bad cold. But not using lots of them doesn't mean there's no cold.

 

My son was functional when we opted for IVIG. But that wasn't good enough. I have seen him at 100% and then had him slip away because someone coughed in his direction. We did it so that he could get to 100% and enjoy being there for more than a few months at a time.

[peglem]

Have you had a Cam K test from Dr Cunningham? If you're sure your daughter has Pandas, then only treating with psych meds does not make sense to me. In fact, they could be part of the problem.

Something I noticed from the Sammy story on Mystery Diagnosis (I've never read the book) is that, though they stated that the psych meds did nothing, he got worse when on them and even worse when they kept raising them. Before we knew my daughter had PANDAS, we tried a LOT of psych meds- they either made things worse or made no difference.

I think if you're dealing w/ residual anxiety or OCD after you have PANDAS in remission, therapy can help to banish those- but if you're still seeing wildly out of control stuff, you're probably not in remission.

 

Were her titers ever high? I'm not sure they're the measurement to be using for decision making. Like measuring how many tissues you use to decide how bad a cold is. Lots of tissues probably means a bad cold. But not using lots of them doesn't mean there's no cold.

Oh, nice analogy!

 

One more point I'd like to make- If your child had cancer, you'd most certainly see an oncologist who has extensive experience in treating cancer. I'm not comparing cancer to PANDAS, just saying you may need somebody who specializes in treatment of PANDAS because its not something that most doctors really know what to do about.

[kimballot]

I am curious if you have done steroid bursts. Perhaps I missed that. Many believe that steroid bursts are a clue as to how the child will respond to IVIG.

[nevergiveup]

Ok so I will assume these are psychiatrists whom your dd is seeing. I find it hard to believe that they ever ordered up ivig for any patient. They say it doesn't work because why, I would insist on documentation on where they have received this info that ivig wears off for all pandas kids. The one published study by Swedo showed improvement at the one year anniversary of ivig.

Medicine works like this, if you see a shrink you will be treated for OCD and rages with SSRI, (that's all they know they are not immunologists), if you see an immunologist you will be tested and treated for immune deficiency and told ivig help tics and ocd and the immune def, if you see a rheumotologist you will get steroids for an unknown autoimmune condition, if you see an ENT you will get a tonsillectomy for recurrent strep and told this also helps ADHD and tics, if you see a neurologist you will either get clonodine or dopamine agonist drugs because that's what they know. Doctors are not much different than plumbers, they have a protocol and a task. My dd has seen all of the doctors above listed and prescribed the above items also. If you are not with a PANDAS expert, then you are getting medical advise about something other than pandas. In complicated new diseases like PANDAS your success is not contigent upon if you see a doctor, ITS contingent upon which doctor you see. (My uncle who is a physician always tells me of this.). Your dd sounds like she needs the cunningham test and then an appointment with Dr Latimer to consider PEX. (This way you do not need to be concerned with ivig) Dr. Latimer will be back seeing patients in August. I am sorry the psychiatrists want to admit her, if this attack is from Pandas then she has brain inflammation and cannot control her own feelings. Any amount of counseling or SSRI will not help eleviate her illness.

[Iowadawn]

I feel your pain. Total empathy. Our 120# 11 yo son is too big for us to handle when he has flipped into raging. Flying hammers & swinging knives, bruises...you name it. Briefly...make sure you don't have other family members contributing to infection in the home. Mycoplasma pneumoniae...make sure that isn't te problem since the raging, aggressive violent behavior can be because of this. We are dealing with both of these situations. We are testing for tick-borne infectons this week, too. He is the best he has been in several months right now. Was just hopspitalized. We switched to Biaxin and had to get him on Geodon. I am inclined to think the Biaxin is a BIG help.

 

Hope this helps. Dawn

[JAG10]

I feel your pain. Total empathy. Our 120# 11 yo son is too big for us to handle when he has flipped into raging. Flying hammers & swinging knives, bruises...you name it. Briefly...make sure you don't have other family members contributing to infection in the home. Mycoplasma pneumoniae...make sure that isn't te problem since the raging, aggressive violent behavior can be because of this. We are dealing with both of these situations. We are testing for tick-borne infectons this week, too. He is the best he has been in several months right now. Was just hopspitalized. We switched to Biaxin and had to get him on Geodon. I am inclined to think the Biaxin is a BIG help.

 

Hope this helps. Dawn

 

Oh Dawn, you made my day! So relieved to hear things are moving in the right direction.

[danddd]

I feel your pain. Total empathy. Our 120# 11 yo son is too big for us to handle when he has flipped into raging. Flying hammers & swinging knives, bruises...you name it. Briefly...make sure you don't have other family members contributing to infection in the home. Mycoplasma pneumoniae...make sure that isn't te problem since the raging, aggressive violent behavior can be because of this. We are dealing with both of these situations. We are testing for tick-borne infectons this week, too. He is the best he has been in several months right now. Was just hopspitalized. We switched to Biaxin and had to get him on Geodon. I am inclined to think the Biaxin is a BIG help.

 

Hope this helps. Dawn

 

Oh Dawn, you made my day! So relieved to hear things are moving in the right direction.

Thanks everyone!!!!

[danddd]

I feel your pain. Total empathy. Our 120# 11 yo son is too big for us to handle when he has flipped into raging. Flying hammers & swinging knives, bruises...you name it. Briefly...make sure you don't have other family members contributing to infection in the home. Mycoplasma pneumoniae...make sure that isn't te problem since the raging, aggressive violent behavior can be because of this. We are dealing with both of these situations. We are testing for tick-borne infectons this week, too. He is the best he has been in several months right now. Was just hopspitalized. We switched to Biaxin and had to get him on Geodon. I am inclined to think the Biaxin is a BIG help.

 

Hope this helps. Dawn

 

Oh Dawn, you made my day! So relieved to hear things are moving in the right direction.

Thanks everyone!!!!

This is the granmother of DD My daughter is so distraught that I am going to move into this situation that I have been watching and crying with for 1 1/2 years.

I get that Dr. Geller yes that Dr Geller that she is seeing is only on the med pyscho route and Dr T is helping her with other problems besides PANDAS, but his input no to IVIG. This grl is in pain emotionally, and I say off the crazy meds and time to try with Dr. K. We will take the chance and if it fails I will take the blame. Thank you so much for helping my daughter in this forum. Dans Mum

[peglem]

I feel your pain. Total empathy. Our 120# 11 yo son is too big for us to handle when he has flipped into raging. Flying hammers & swinging knives, bruises...you name it. Briefly...make sure you don't have other family members contributing to infection in the home. Mycoplasma pneumoniae...make sure that isn't te problem since the raging, aggressive violent behavior can be because of this. We are dealing with both of these situations. We are testing for tick-borne infectons this week, too. He is the best he has been in several months right now. Was just hopspitalized. We switched to Biaxin and had to get him on Geodon. I am inclined to think the Biaxin is a BIG help.

 

Hope this helps. Dawn

 

Oh Dawn, you made my day! So relieved to hear things are moving in the right direction.

Thanks everyone!!!!

This is the granmother of DD My daughter is so distraught that I am going to move into this situation that I have been watching and crying with for 1 1/2 years.

I get that Dr. Geller yes that Dr Geller that she is seeing is only on the med pyscho route and Dr T is helping her with other problems besides PANDAS, but his input no to IVIG. This grl is in pain emotionally, and I say off the crazy meds and time to try with Dr. K. We will take the chance and if it fails I will take the blame. Thank you so much for helping my daughter in this forum. Dans Mum

What a wonderful grandma!!!

[kimballot]

Nevergiveup - you are my hero! Once again you've laid it on the line and spoken the truth. When someone has a hammer, everything looks like a nail, and each doctor has a different set of tools. I am still wondering, though if a steroid burst has been tried. Wouldn't this give some indication if this is an immune / inflammatory problem vs. straight psychiatric condition? It seems that Dr. T would have moved to at least a short steroid burst....