DOES IVIG REALLY EVEN WORK?

[Phasmid]

Ok, I finally got an appt. with Dr. K. Should I spend the money? (Some of you must be laughing at me right now, seeing as how I have complained about not being able to contact him!) Especially if the child isn't severe?

 

The reasons I am doing this (as a follow up after phone consult with another doc) is this:

 

1. Even though he has no tics, and the ocd is mild (in comparison with all of your cases), he still has goofy fears (can't sleep alone, can't always go upstairs alone, depending on the day, although this got better (i think) after doing Biaxin last month.

2. School anxiety, math learning issues, severe short term memory issue, attention issue (when it comes to school work)

3. Want to find out from Dr. K. if doing something more drastic than antibiotics will "prevent" further episodes in the future (one year ago was his last severe bout with raging ocd/tics).

4. Need to find an answer for his addictive behavior, whether this is in fact a form of ocd (addicted to gaming, and will have complete melt if he doesn't get his fix)

 

I think Dr. K. is our last hope, before SSRI, counseling, jumping off bridges...

[EAMom]

This is my opinion on the matter:

 

IVIG greatly helps (it "works"):

-but it MUST be done at a high enough dose (1.5mg/kg or 2mg/kg)

-it is extremely helpful/important to do as much as possible to clear underlying infections (strep, mycoplasma etc) from your child (and household) beforehand...so you are going to get better results with "high-dose antibiotics (Azith. and/or Augmentin or stronger, not just amoxcillin) AND IVIG" vs. just "IVIG alone with low dose prophylactic abs"

-healing takes time, a year or two, I've heard

-you can hope for 1 IVIG to bring on a remission, but may need more

-certain cases (older kids, tics, anorexia) are may be more resisitant to treatment, more likely to need repeat IVIG's

 

I think the view that 1 IVIG will cure everyone forever is overly optimistic. And I would call it "remission", not cure.

 

Who were you doing the Biaxin through? IMO, if you have done several months of high dose antibiotics, and your child is not 100%, it is time to consider IVIG. Our children deserve to be 100% (thanks to SFMom for that viewpoint).

 

I don't remember how old your son is...but I would expect that his issues (anxiety, memory, learning, attention issues) are going to be more problematic as he gets older and school becomes more challenging, even for NT kids.

Edited May 17, 2010 by EAMom

[Johnsmom]

EA Mom-

 

I have been waiting for a post like this. My son has been doing extremely well and has not been on any anti-bioitcs since November. We went and saw DR K. and DS is sheduled for 1st IVIG in mid June.

Last Thursday he recited 3 lines before an audience of 200 people before a spring sing concert. This was a kid who would hide under the lego table in 4K. He is now in 2nd grade and is 8 yrs old.

We did the prednisone burst last month and saw INCREASED socialization ,eye contact and improved speech. His body appeared so calm and he used non-verbal gestures I had never seen before.

He does appear to have a wax and wane pattern but I havent seen really weird behavior since about last fall and then it didnt last very long. We had some small hiccups with anxiety in February.

Does my son really need to be on antibiotics?

 

thanks

Ann

 

 

 

This is my opinion on the matter:

 

IVIG greatly helps (it "works"):

-but it MUST be done at a high enough dose (1.5mg/kg or 2mg/kg)

-it is extremely helpful/important to do as much as possible to clear underlying infections (strep, mycoplasma etc) from your child (and household) beforehand...so you are going to get better results with "high-dose antibiotics (Azith. and/or Augmentin or stronger, not just amoxcillin) AND IVIG" vs. just "IVIG alone with low dose prophylactic abs"

-healing takes time, a year or two, I've heard

-you can hope for 1 IVIG to bring on a remission, but may need more

-certain cases (older kids, tics, anorexia) are may be more resisitant to treatment, more likely to need repeat IVIG's

 

I think the view that 1 IVIG will cure everyone forever is overly optimistic. And I would call it "remission", not cure.

 

Who were you doing the Biaxin through? IMO, if you have done several months of high dose antibiotics, and your child is not 100%, it is time to consider IVIG. Our children deserve to be 100% (thanks to SFMom for that viewpoint).

 

I don't remember how old your son is...but I would expect that his issues (anxiety, memory, learning, attention issues) are going to be more problematic as he gets older and school becomes more challenging, even for NT kids.

[Phasmid]

Thank you. I needed to hear that.

[Phasmid]

Oh, he's 11. Such a gamble. So scary to think of "upwelling" all the stuff that has been "ok" for the most part. I think he's ok, but he really isn't. I just got back from a baseball game and had to open a beer and shed some tears. He was, of course, the one who was throwing a tantrum because he didn't get to pitch, and he got no hits. Then, to make matters worse, has an attitude with the coaches. Maybe this isn't related to his illness? Maybe bad parenting is all? Fact that he's a spoiled only child? Honestly, we are going to be homeless in order to get him IVIG treatment. We have no savings left, insurance won't cover, I expect, and what is the chance that it'll even help?

 

He was just on biaxin for a month. He wasn't sick, Dr. T. recommended as he had very high IgG to Mycoplasma pneumoniae.

 

I don't know guys... I just don't know what to think, do, or say. I guess I will go through with appointment with Dr. K. (he's gonna kill me when he finds out he's going to ANOTHER doctor. We are going to go in person. I think Dr. K. needs to see what this boy looks like. June 15! Will let y'all know. Thanks for putting up with me here... I pray that all our kids will one day just be well.

[sf_mom]

I agree with everything EAMom said.

 

Our son had a primary TIC presentation, 3 IVIGs, 98% recovered and working very hard on the last 2% for full recovery (17 weeks post his last treatment). I believe our kids got awfully sick and there are ways to get them well that are working. Our son is a different child and I kick myself for the years he went untreated. There is no need for them to suffer... THEY DO DESERVE 100%.

 

This is my opinion on the matter:

 

IVIG greatly helps (it "works"):

-but it MUST be done at a high enough dose (1.5mg/kg or 2mg/kg)

-it is extremely helpful/important to do as much as possible to clear underlying infections (strep, mycoplasma etc) from your child (and household) beforehand...so you are going to get better results with "high-dose antibiotics (Azith. and/or Augmentin or stronger, not just amoxcillin) AND IVIG" vs. just "IVIG alone with low dose prophylactic abs"

-healing takes time, a year or two, I've heard

-you can hope for 1 IVIG to bring on a remission, but may need more

-certain cases (older kids, tics, anorexia) are may be more resisitant to treatment, more likely to need repeat IVIG's

 

I think the view that 1 IVIG will cure everyone forever is overly optimistic. And I would call it "remission", not cure.

 

Who were you doing the Biaxin through? IMO, if you have done several months of high dose antibiotics, and your child is not 100%, it is time to consider IVIG. Our children deserve to be 100% (thanks to SFMom for that viewpoint).

 

I don't remember how old your son is...but I would expect that his issues (anxiety, memory, learning, attention issues) are going to be more problematic as he gets older and school becomes more challenging, even for NT kids.

[sf_mom]

OOPs

Edited May 18, 2010 by SF Mom

[Johnsmom]

We will be there the 15th 16th and 17th of June. Tell your dh that dr k is worth every penny. Think about the 30 years of experience this guy has and the number of children he has seen.

I have the same fears as you do. My sons episodes have been a LOT worse and I just don't even want to go through that again but i am hopeful it will be worth it.

You can't give up. You will always wonder if you don't.

You are NOT a bad parent. Our son is an only child too and I have often thought that we spoiled him as well so you are not alone there.

I am sooooo glad we went to dr k.

Ann

 

Oh, he's 11. Such a gamble. So scary to think of "upwelling" all the stuff that has been "ok" for the most part. I think he's ok, but he really isn't. I just got back from a baseball game and had to open a beer and shed some tears. He was, of course, the one who was throwing a tantrum because he didn't get to pitch, and he got no hits. Then, to make matters worse, has an attitude with the coaches. Maybe this isn't related to his illness? Maybe bad parenting is all? Fact that he's a spoiled only child? Honestly, we are going to be homeless in order to get him IVIG treatment. We have no savings left, insurance won't cover, I expect, and what is the chance that it'll even help?

 

He was just on biaxin for a month. He wasn't sick, Dr. T. recommended as he had very high IgG to Mycoplasma pneumoniae.

 

I don't know guys... I just don't know what to think, do, or say. I guess I will go through with appointment with Dr. K. (he's

gonna kill me when he finds out he's going to ANOTHER doctor. We are going to go in person. I think Dr. K. needs to see what this boy looks like. June 15! Will let y'all know. Thanks for putting up with me here... I pray that all our kids will one day just be well.

[Phasmid]

Thanks! What was your son exhibiting when you saw doc K?

[Johnsmom]

Actually I was so worried that he wouldn't see anything cuz my son appeared okay but you know how you just get used to their behaviors? Iwas told by another parent on this forum that dr k has some very interesting ways to test our kids and to not intervene. I will be forever grateful to that parent. Whe we got there he got right in my sons face and started asking him if he played with Barbie dolls. I knew he was going to do this so we kept our mouths shut. My son had a look of complete confusion and panic on his face when dr k was asking him things like, "are you a boy or a girl?" he wanted to see what kind of reaction our son had. My son couldn't even answer him. I thought for sure he would start laughing cuz my husband always goofs around with him.

After that we sent ds out of the room and that's when he gave us his opinion. He said our son appeared puppet like as if his body wasn't catching up to his words. He also looked over the notes I had sent to him and told us that our sons diagnosis of pdd-nos was a bunch of garbage.

We did the steroid burst which was incredible, and now we are scheduled for ivig. There is a lot more detail to this. I don't think it's going to be a light switch. I feel very strongly that this will help. I wanted to mention to that my son has had 6 elevated aso titer tests in the past two years. These elevated titers along with wax and wane behaviors and positive response to the burst is what dr k stated would make ds a good candidate.

 

Thanks! What was your son exhibiting when you saw doc K?

[airial95]

Thanks for asking this question - I've been wondering the same thing because it seems like we see alot of posts of parents whose kids get worse, sometimes much worse, after IVIG. My understanding is that it's temporary, but the volume of those posts is somewhat frightening. We've been on abx for about 4 months and our little guy is probably about 80% back - with a few setbacks when he's exposed to strep, but they only last a few days and he's back to where we left off. We're at the point where progress is slowing and we're looking at what to do next. And IVIG is personally something that i'm still a bit scared of.

 

I've told myself that the reason we see more getting worse before better posts with the IVIG vs. the "everything is fantastic" post IVIG threads is likely because most of us spend more time on here when our kids are doing poorly, than when they're doing better. I know I'm guilty of that...

[EAMom]

On getting worse after IVIG...this is TEMPORARY, for us the first week post IVIG was rough, then week by week things steadily improved. We had IVIG in Aug 09 and dd did great (improving weekly) until a FEVER in Feb 2010. We waited for this current exacerbation to pass (measurement rituals, irritability, food questions, food restriction) and did get some improvement with pred and increased antibiotic... but are repeating IVIG in a couple of weeks since we haven't gotten back to our pre Feb fever level yet.

 

On not staying on prophylactic antitiobics...very RISKY IMO. Maybe some kids can get away with this (milder cases)...but be aware that many parents find that subsequent exacerbations are more severe and harder to get under control. So, dh and I feel that preventing future infections is really important. (Of course, we are probably biased/scarred by our own experiences! There is NO WAY we are going to repeat what we went through in Spring 08, and I really feel we would be risking our dd's life, as she had a pretty severe eating disorder, by not keeping her on prophylactic antibiotics.)

 

Also, keep in mind (esp. if you are paying out of pocket for IVIG) that antibiotics might be a cheap form of insurance in terms of preventing the wheels of pandas from starting all over again.

Edited May 18, 2010 by EAMom

[Johnsmom]

so maybe i need to make a call to dr k and pose the question: Does DS need to be on antibioitcs since he hasnt been on any since November???

What do you think EA Mom??

 

 

On getting worse after IVIG...this is TEMPORARY, for us the first week post IVIG was rough, then week by week things steadily improved. We had IVIG in Aug 09 and dd did great (improving weekly) until a FEVER in Feb 2010. We waited for this current exacerbation to pass (measurement rituals, irritability, food questions, food restriction) and did get some improvement with pred and increased antibiotic... but are repeating IVIG in a couple of weeks since we haven't gotten back to our pre Feb fever level yet.

 

On not staying on prophylactic antitiobics...very RISKY IMO. Maybe some kids can get away with this (milder cases)...but be aware that many parents find that subsequent exacerbations are more severe and harder to get under control. So, dh and I feel that preventing future infections is really important. (Of course, we are probably biased/scarred by our own experiences! There is NO WAY we are going to repeat what we went through in Spring 08, and I really feel we would be risking our dd's life, as she had a pretty severe eating disorder, by not keeping her on prophylactic antibiotics.)

 

Also, keep in mind (esp. if you are paying out of pocket for IVIG) that antibiotics might be a cheap form of insurance in terms of preventing the wheels of pandas from starting all over again.

[Fixit]

On getting worse after IVIG...this is TEMPORARY, for us the first week post IVIG was rough, then week by week things steadily improved. We had IVIG in Aug 09 and dd did great (improving weekly) until a FEVER in Feb 2010. We waited for this current exacerbation to pass (measurement rituals, irritability, food questions, food restriction) and did get some improvement with pred and increased antibiotic... but are repeating IVIG in a couple of weeks since we haven't gotten back to our pre Feb fever level yet.

 

On not staying on prophylactic antitiobics...very RISKY IMO. Maybe some kids can get away with this (milder cases)...but be aware that many parents find that subsequent exacerbations are more severe and harder to get under control. So, dh and I feel that preventing future infections is really important. (Of course, we are probably biased/scarred by our own experiences! There is NO WAY we are going to repeat what we went through in Spring 08, and I really feel we would be risking our dd's life, as she had a pretty severe eating disorder, by not keeping her on prophylactic antibiotics.)

 

Also, keep in mind (esp. if you are paying out of pocket for IVIG) that antibiotics might be a cheap form of insurance in terms of preventing the wheels of pandas from starting all over again.

 

yes...i wish i knew that or thought of that or had a doc who didn' think i was crazy...

just eye blink ages3-5......5 almost 6 with bad strep we couln't rid it turned to a neck roll...age9....all ###### has broken loose...and we are still trying to find our path to recovery.....(have not yet done ivig...doing more tests and treating underliyng conditions and hopefully always moving forward)

we would have 3-5 months between episodes with complete remission...........(only reason i got abx last severla times is ds present with illness even though qucik tests came back neg....doc only gave abx based on strep history and presentation of illness.....again maybe it was another bacteria or myco p the last couple of times)...

who would have given me long term abx???????

[7upMom]

In ref to your heading question Does IVIG really even work?

 

We are 4 1/2 wks post IVIG- I was skeptical preIVIG but hopeful but yes def questioning will this really work for our son ( his age 9 , how long he had suffered, how nonfunctioning he was - it all worried me) and I can report that we are 100% thankful and have NO regrets of going thru with IVIG and the money we shelled out on it - would do it again in a heartbeat if time reversed. We are Not 100% recovered yet, not even close, placing a number on it is hard maybe 40% but seeing him be able to cope, not rage- he was nonfunctioning and I thought there was no way school was even going to happen until after summer- but he is going 2 hrs a day now ( : that is HUGE!! He still dislikes math , lol, but can do a page of math problems - you couldn't even mention the word math before without a meltdown! He is on no SSRI's anymore , he is not in any therapy anymore, and the biggest improvement I have had family tell me he just seems more peaceful and yes he does - even if he tics still, he is just more at peace. We will continue to fight for 100% recovery for him but so far we and everyone close to my son has been made a believer and absolutely amazed by what Dr K has given us back.