IVIG post chelation

[romom]

Hello all. I am a newbie here ..have been following this site for the last month or so..and can’t tell you how thankful I am to the Almighty for bringing me here and to all of you for excellent support and the wealth of information you provide.

 

Actually I have a long story about my ds7 whose dx is PPD/A SD but I think for now I will just list out the recent events.

Just returned from NC (Aug 20) after a 5 week of IV chelation, allergy shots and HBOT (approx 35 dives). My NT dd3 fell very sick the last week of our trip and was on antibiotic to cure a throat infection. They did throat culture but I am pretty sure they did not do it right and as expected the test came negative. Then in a couple of days my son became sick (cold, sore throat, mild fever) and doc prescribed antibiotic and did not perform throat culture in spite of our repeated requests. Said amoxicillin will kill the bacteria even if it is strep. Then on our way back to Chicago we started noticing vocal tics. My husband reminded me that in the past we always felt his tics went away for a bit when he was on antibiotics and we were wondering why this time it was different. Son was already on restricted diet, so then we wondered if amoxicillin caused tics and then goggle brought us here. Prior to this, we had absolutely no knowledge about PANDAs and why the past antibiotics (amox and azythromycin) had helped with tics. After reading several posts in the Forum, we felt maybe this is where we belong and immediately scheduled appt with Dr. K who was kind enough to meet with us the same day even though he was leaving for Europe the following day. He spent so much time with both my kids although ds7 was the one with issues. Anyways, per his diagnosis, he believes ds7 satisfies the criteria for pandas about 80%. The preliminary tests for ASO titers etc. came back negative but he said that could happen and not worry. We do not want to do the steroid burst and thought of proceeding with IVIG. Dr. K has advised we stop chelation before doing IVIG as he does not want to mix 2 treatments

 

We had a few questions and looking for some guidance

 

1) Anyone done chelation first and then IVIG? If so, what was your experience with the treatment? Medium , good or bad?

 

2) We notice a lot more motor tics when he watches TV or when he is very anxious. Or like today on their way to NC for another round of IV chelation, my husband called from the aiport to say he is ticcing like never before. Would he still be a good candidate for Pandas or it is more Tourettes..Any thoughts?

 

3) Have you seen any improvement in behavior and over all peer to peer interaction post IVIG or is it mostly the tics going away? Ds7 has several behavioral issues and off late he is kicking us and it hurts. Just can’t wait to start IVIG but at the same time, I am telling myself to shut up and not get so excited as this has happened in the past and then a lot of disappointment follows. Somehow just want his tics to go away as it bother me too much to see him tic so hard that some days he cant even drink water without spilling all over him. Or days when suddenly I saw him with the shoulder tic and then a hop or skip or something like that. Never seen the hop before. And other days when he bends at an angle …My heart just bleeds.

 

Anyways, please let me know your thoughts and if there is something I should or should not be doing b4 or after IVIG or anything that you can share.

 

Sorry for the long post. And thanks so much for your help

Regards

Deepa

[EAMom]

Hi,

 

I don't know anything about chelation and IVIG, sorry.

 

Have you seen post of FAQ's? http://www.latitudes.org/forums/index.php?showtopic=6266 Titers, IVIG, antibiotics, and more are covered.

 

Don't worry about the low titers...it doesn't mean much. LOTS of PANDAS kids have low titers (mine did).

 

Do you have a doc that is willing to rx a month of full-strength antibiotics (preferably something stronger than amoxcillin)? Azith. and Augmentin are popular antibiotics on this forum. If your child responds favorably, that would be another piece of the puzzle (although be warned that tics are a "tough" symptom to get rid of, so just b/c tics don't go away with a course of antibiotics, doesn't mean it's not PANDAS.)

 

Here is an article on amoxcillin failure in strep throat. http://www.entrepreneur.com/tradejournals/article/169459644.html

 

The Cunningham test (see the FAQ link...it is mentioned) might also give you some info. as to whether your son is more likely tourettes or pandas.

[lyme_mom]

Hello all. I am a newbie here ..have been following this site for the last month or so..and can’t tell you how thankful I am to the Almighty for bringing me here and to all of you for excellent support and the wealth of information you provide.

 

Actually I have a long story about my ds7 whose dx is PPD/A SD but I think for now I will just list out the recent events.

Just returned from NC (Aug 20) after a 5 week of IV chelation, allergy shots and HBOT (approx 35 dives). My NT dd3 fell very sick the last week of our trip and was on antibiotic to cure a throat infection. They did throat culture but I am pretty sure they did not do it right and as expected the test came negative. Then in a couple of days my son became sick (cold, sore throat, mild fever) and doc prescribed antibiotic and did not perform throat culture in spite of our repeated requests. Said amoxicillin will kill the bacteria even if it is strep. Then on our way back to Chicago we started noticing vocal tics. My husband reminded me that in the past we always felt his tics went away for a bit when he was on antibiotics and we were wondering why this time it was different. Son was already on restricted diet, so then we wondered if amoxicillin caused tics and then goggle brought us here. Prior to this, we had absolutely no knowledge about PANDAs and why the past antibiotics (amox and azythromycin) had helped with tics. After reading several posts in the Forum, we felt maybe this is where we belong and immediately scheduled appt with Dr. K who was kind enough to meet with us the same day even though he was leaving for Europe the following day. He spent so much time with both my kids although ds7 was the one with issues. Anyways, per his diagnosis, he believes ds7 satisfies the criteria for pandas about 80%. The preliminary tests for ASO titers etc. came back negative but he said that could happen and not worry. We do not want to do the steroid burst and thought of proceeding with IVIG. Dr. K has advised we stop chelation before doing IVIG as he does not want to mix 2 treatments

 

We had a few questions and looking for some guidance

 

1) Anyone done chelation first and then IVIG? If so, what was your experience with the treatment? Medium , good or bad?

 

2) We notice a lot more motor tics when he watches TV or when he is very anxious. Or like today on their way to NC for another round of IV chelation, my husband called from the aiport to say he is ticcing like never before. Would he still be a good candidate for Pandas or it is more Tourettes..Any thoughts?

 

3) Have you seen any improvement in behavior and over all peer to peer interaction post IVIG or is it mostly the tics going away? Ds7 has several behavioral issues and off late he is kicking us and it hurts. Just can’t wait to start IVIG but at the same time, I am telling myself to shut up and not get so excited as this has happened in the past and then a lot of disappointment follows. Somehow just want his tics to go away as it bother me too much to see him tic so hard that some days he cant even drink water without spilling all over him. Or days when suddenly I saw him with the shoulder tic and then a hop or skip or something like that. Never seen the hop before. And other days when he bends at an angle …My heart just bleeds.

 

Anyways, please let me know your thoughts and if there is something I should or should not be doing b4 or after IVIG or anything that you can share.

 

Sorry for the long post. And thanks so much for your help

Regards

Deepa

If you have not had your son evaluated for lyme and other tickborne illnesses such as Bartonella yet I would definitely do that before proceeding with IVIG. The HBOT therapy can cause a die off reaction or herx b/c the lyme spirochetes hate oxygen. We plan to try HBOT b/c it can kill lyme but we have not done it yet. The number of dives your son did would certainly be enough to cause a herx. I don't know if the chelation can also cause a herx but if it is detoxing mercury it might b/c lyme hides behind mercury in the body which makes it hard for antibiotics to reach it. Lyme is apparently most common in boys 8 to 15 years old and in persons over 30. I guess because boys are often in tick environments. An Ilads doctor (contact ilads.org) is the best kind of doctor to assess for tickborne illnesses. The tests do not always show a lyme infection. There are many reasons for this such as some persons do not make antibodies to lyme and also the spirochete is constantly morphing and there are many strains of lyme, many more than they test for. If this is lyme the right combo of antibiotics prescribed by a knowledgeable lyme doctor can get rid of these symptoms. Amoxicillin is a treatment for lyme so the ticcing might have been a herx reaction. A lyme doctor would put a patient on more than one antibiotic for lyme. So in summary the HBOT and the antibiotics could definitely caused a die off. Just something to consider b/c lyme is pretty common in general and there have been quite a few families on this forum who have learned that lyme/bartonella/babesia are at the root of their child's health problems. Other infections like strep are also often involved but the tick borne illnesses are quite insidious if not properly treated.

[NancyD]

We have done both chelation and IVIg however the chelation was years before IVIg, so I cannot say whether it had any impact on the effects of IVIg as I have nothing to compare. But I can tell you that IVIg had huge impact on my DD's behavior, much more so than chelation ever did. Prior to her first high-dose IVIg infusion she had very severe rages and tics, among other PANDAS symptoms. At week 10 post IVIg her tics and rages were 70% gone and within two years her tics were 100% gone and have not come back since. While the daily violent rages are gone she does have an occasional outburst and she can be pretty moody, but she is also 14 and very hormonal. IVIg has also impacted her sleep and performance at school in a very positive way. She is now sleeping through the night in her own bed for the first time in 10 years and instead of getting Cs and Ds she is getting mostly As. And, for the first time in her life, she has REAL friends and she has much greater awareness of herself and her surroundings.

 

This is not to say that life is perfect. Far from it. DD is 14 now and the early teen years have been brutal for us. She had a severe PANDAS exacerbation in the spring and wound up in the hospital for two weeks. We since changed her abx to a much stronger dose, put her back on diflucan for four months, and tried 30-day tapered prednisone, which helped to push her back into remission. We also gave her very high doses of vitamin D for a few months as she had catastrophically low levels. For now she is doing pretty well, although stress can set her off. She needs an IVIg infusion every six months to stay in remission and she will likely stay on her abx for many years to come. Her anxiety and OCD have not been helped at all by IVIg, so we are testing for possible co-infection.

 

I can understand why Dr. K would not want you to do chelation and IVIg at the same time. We have never tried HBOT so I cannot speak to that.

[EAMom]

Nancy D...did you initially do IVIG more often? I see you mention every 6mo. currently. Is this 2mg/kg (or 1.5mg/kg)?

[romom]

Thank you all very much for the excellent suggestions and helpful tips.

EAMom, will talk to the doc about doing antibiotics for a month or so and see what he says. Sound like a good place to start

lyme_mom - I will try to find out more about lyme etc for my son. thank you again..

 

NancyD - Thanks for sharing your experience. That was very interesting and encouraging.

 

So do you think our kids will always have to depend on IVIg and/or abx lifelong? I thought the way I understood from the doc. was sometimes 1 IVIg is all you need to cure the symptoms and the immune system reboots itself. And again since I am still trying to absorb all this, maybe I am totally off in my understanding..so apologize for being so confused and dense..But looking at the parents experience in this forum, it seems like the problem is never really completely resolved? The child is always on some abx and periodic IVIG?

 

What if I am unable to keep up with periodic Ivig for my ds (assuming he is only showing 50-60% improvement) due to financial constraints or whatever reason - will the the child gradually go downhill again or will the 50-60% improvement stay permanently?

 

Again, I understand that we may not have all the answers, but just looking for your thoughts. Thanks again all.

[NancyD]

EAMom, yes, initially we did monthly IVIg infusions. We started at 1.5g/kg and then went to a lower dose every 28 days for 1 1/2 years. It took DD exactly 10 weeks to show steady significant improvement. Although I have no proof, I think the initial HD infusion is what helped, not the lower dose monthly infusions. In fact, I think the lower dose monthly infusions continuously stirred up the antibodies, because consistently during the third week after each infusion DD regressed a little. The second HD infusion (also 1.5g/kg) was in mid March and we did not do any monthly lower dose infusions after that. Again, healing took exactly 10 weeks and DD went back into remission. We did not see the periodic regression that we saw during the first year and a half.

 

Can I say for sure that DD needs an infusion every 6 months? No, perhaps I am a bit paranoid heading into the winter with so much illness heading our way. DD regressed a bit this month, but it could be due to stress from starting high school. Plus, the last remaining issue -- severe anxiety and OCD (scrupulocity), which started about three years ago when DD was working and riding at a horse barn on a daily basis -- has not been helped at all by IVIg. This is why we are investigating possible co-infection. I'm hoping we won't have to continue with future infusions, but I want to be prepared. If insurance approves another we will go for it. I am tempted to try 2g/kg next round. I have to say, ever since switching DD to 1000 mg Augmentin XR she has not had one single skin infection since April. Prior to that she had one after another. So I think the change in abx made a big difference.

 

Romom, from what I understand DD will have to be on abx until her twenties...or until PANDAS is a distant memory. I do not think she will have to have IVIg that long (at least I hope not). But my DD's treatment may not be the norm for all kids. My DD had her first overnight onset of PANDAS at age 2 and it went untreated for many years. Everyone assumed it was the ASD or bipolar/ADHD. The PANDAS became more and more severe as the years passed and very chronic. The longer you wait to treat the harder it can be to mitigate or eliminate the symptoms. I am hoping no permanent damage was done.

 

Nancy

[Fixit]

We have done both chelation and IVIg however the chelation was years before IVIg, so I cannot say whether it had any impact on the effects of IVIg as I have nothing to compare. But I can tell you that IVIg had huge impact on my DD's behavior, much more so than chelation ever did. Prior to her first high-dose IVIg infusion she had very severe rages and tics, among other PANDAS symptoms. At week 10 post IVIg her tics and rages were 70% gone and within two years her tics were 100% gone and have not come back since. While the daily violent rages are gone she does have an occasional outburst and she can be pretty moody, but she is also 14 and very hormonal. IVIg has also impacted her sleep and performance at school in a very positive way. She is now sleeping through the night in her own bed for the first time in 10 years and instead of getting Cs and Ds she is getting mostly As. And, for the first time in her life, she has REAL friends and she has much greater awareness of herself and her surroundings.

 

This is not to say that life is perfect. Far from it. DD is 14 now and the early teen years have been brutal for us. She had a severe PANDAS exacerbation in the spring and wound up in the hospital for two weeks. We since changed her abx to a much stronger dose, put her back on diflucan for four months, and tried 30-day tapered prednisone, which helped to push her back into remission. We also gave her very high doses of vitamin D for a few months as she had catastrophically low levels. For now she is doing pretty well, although stress can set her off. She needs an IVIg infusion every six months to stay in remission and she will likely stay on her abx for many years to come. Her anxiety and OCD have not been helped at all by IVIg, so we are testing for possible co-infection.

 

I can understand why Dr. K would not want you to do chelation and IVIg at the same time. We have never tried HBOT so I cannot speak to that.

 

nancy ..can you expand on the highlighted part....

was that 2 years after the 1st ivig.....

it slowly faded over 2 years???

 

did you have another or the monthly ivigs at that point...

 

not that i want anyone's healing to take 2 years...but it certainly puts a different perspective on expectatoins!!!

 

THanks NANcy D!!!!!!!!!

 

PS..i don't remember if you mentined who your doc is for semi annual ivig...

and are you gettting covered by ins>>>>

 

also..another thought...if you dd can susstain...will you push out ivigs..7 months then 8months etc...

thanks again

Edited September 24, 2010 by Fixit

[NancyD]

Hi Fixit,

 

Twice now I have written a long reply to you and I lost my internet connection (aagrh!). This time I’ll type it in Word and cut and paste.

 

We did not see any change for the first ten weeks following DD’s first HD infusion in August 2008. Her tics (both motor and vocal) were very bad and she was raging almost daily. In addition, her grades were bad, she rarely attended class, she was sleeping in my bed every night, and she had no REAL friends. At exactly 10 weeks the violent rages disappeared and the tics were about 70% gone. In the next few months she began sleeping in her own bed through the night for the first time in 10 years and we were able to take her off Risperdal also for the first time in 10 years. She started going to class, was completing homework, and was making lots of friends. She still had some mood dysregulation, anxiety, and OCD. I would say it took about a year and a half for the remaining few motor tics, which she did only when she was stressed, to disappear completely.

 

We had one great year with slight regression in the third week following every monthly infusion. In the summer of 2009 her anxiety and OCD got worse and she was more dysregulated. We played around with the monthly infusion dosage (.5 g/kg to .75 g/kg to 1 g/kg) and we even tried changing the infusion to 21 days instead of 28 days. But she seemed to get worse. The tics never came back though.

 

Beginning in Nov 2009 DD seemed to get progressively worse -- although she was asymptomatic and never got sick, her behavior got worse any time she was exposed to a viral or bacterial infection. In January 2010 she started getting one skin infection after another. I convinced her doctor (Dr. Fuhlbrigge at the time) to try a HD infusion (1.5 g/kg) and then I wanted to stop the infusions for a few months to see what the difference would be. The healing after the second HD infusion was so much more difficult than the first one and she was in really bad shape. Still no tics but she was violent towards me. She came down with pityriasis rosea in April 2010 and we went to see Dr. L for the first time that same month. She switched DD from Pen VK to Augmentin XR and prescribed 50,000 IU weekly of vitamin D as her D levels were catastrophically low. In May 2010 she was hospitalized for two weeks with another severe exacerbation and she was given month-long tapered prednisone. That took about two weeks to kick in and then she went back into remission. Coincidently (or not) she went back into remission exactly 10 weeks from the date of her infusion in mid March. She has not had any infusions since. She was supposed to go for plasmapheresis over the summer but at the last minute while at GU DD threw a nutsy and they refused to proceed. At that point Dr. L suggested another round of IVIg. We are working on getting approval for that now from our insurance company.

 

Up until Feb 2010 IVIg was covered 100% by HPHC and then they decided to change their policy. I have been appealing ever since. If they don’t change their mind or if Dr. B (who we will see in mid Oct to determine if DD has a co-infection such as Lyme, Babesia, or Bartonella) can’t find a way to get around their policy, I will either appeal to the state or search for an attorney who will file an injunction to force them to cover it. I would love to see if DD can go a year without an infusion but I hate to test it this winter after the awful winter we just had. Maybe next year I will test it. Currently I am working with a local immunologist (Dr. TePas) who is trying to get us a home infusion. She has been extremely supportive and wonderful to work with! Unfortunately, she is only working part-time and is not taking on any more PANDAS patients.

 

If we find out from Dr. B that DD’s remaining issues (anxiety/OCD) are tied to a co-infection and not PANDAS, then we might re-think future IVIg infusions. I look forward to the day I am no longer searching for answers to my DD’s medical conditions!

 

I hope this helps.

Nancy

 

We have done both chelation and IVIg however the chelation was years before IVIg, so I cannot say whether it had any impact on the effects of IVIg as I have nothing to compare. But I can tell you that IVIg had huge impact on my DD's behavior, much more so than chelation ever did. Prior to her first high-dose IVIg infusion she had very severe rages and tics, among other PANDAS symptoms. At week 10 post IVIg her tics and rages were 70% gone and within two years her tics were 100% gone and have not come back since. While the daily violent rages are gone she does have an occasional outburst and she can be pretty moody, but she is also 14 and very hormonal. IVIg has also impacted her sleep and performance at school in a very positive way. She is now sleeping through the night in her own bed for the first time in 10 years and instead of getting Cs and Ds she is getting mostly As. And, for the first time in her life, she has REAL friends and she has much greater awareness of herself and her surroundings.

 

This is not to say that life is perfect. Far from it. DD is 14 now and the early teen years have been brutal for us. She had a severe PANDAS exacerbation in the spring and wound up in the hospital for two weeks. We since changed her abx to a much stronger dose, put her back on diflucan for four months, and tried 30-day tapered prednisone, which helped to push her back into remission. We also gave her very high doses of vitamin D for a few months as she had catastrophically low levels. For now she is doing pretty well, although stress can set her off. She needs an IVIg infusion every six months to stay in remission and she will likely stay on her abx for many years to come. Her anxiety and OCD have not been helped at all by IVIg, so we are testing for possible co-infection.

 

I can understand why Dr. K would not want you to do chelation and IVIg at the same time. We have never tried HBOT so I cannot speak to that.

 

nancy ..can you expand on the highlighted part....

was that 2 years after the 1st ivig.....

it slowly faded over 2 years???

 

did you have another or the monthly ivigs at that point...

 

not that i want anyone's healing to take 2 years...but it certainly puts a different perspective on expectatoins!!!

 

THanks NANcy D!!!!!!!!!

 

PS..i don't remember if you mentined who your doc is for semi annual ivig...

and are you gettting covered by ins>>>>

 

also..another thought...if you dd can susstain...will you push out ivigs..7 months then 8months etc...

thanks again

[EAMom]

 

 

 

Beginning in Nov 2009 DD seemed to get progressively worse -- although she was asymptomatic and never got sick, her behavior got worse any time she was exposed to a viral or bacterial infection. In January 2010 she started getting one skin infection after another. I convinced her doctor (Dr. Fuhlbrigge at the time) to try a HD infusion (1.5 g/kg) and then I wanted to stop the infusions for a few months to see what the difference would be. The healing after the second HD infusion was so much more difficult than the first one and she was in really bad shape. Still no tics but she was violent towards me. She came down with pityriasis rosea in April 2010 and we went to see Dr. L for the first time that same month. She switched DD from Pen VK to Augmentin XR and prescribed 50,000 IU weekly of vitamin D as her D levels were catastrophically low. In May 2010 she was hospitalized for two weeks with another severe exacerbation and she was given month-long tapered prednisone. That took about two weeks to kick in and then she went back into remission. Coincidently (or not) she went back into remission exactly 10 weeks from the date of her infusion in mid March. She has not had any infusions since. She was supposed to go for plasmapheresis over the summer but at the last minute while at GU DD threw a nutsy and they refused to proceed. At that point Dr. L suggested another round of IVIg. We are working on getting approval for that now from our insurance company.

 

 

 

 

Interesting...so with the timing of her improvement after the 2nd IVIG, we'd think it was perhaps the IVIG finally kicking in. But, maybe the prednisone (and switch to Aug. XR / addition of D played a role as well.)

[Fixit]

Thanks for typing the details again

[NancyD]

Yes, it really muddies the water, doesn't it. I do think the prednisone, Augmentin XR, and D played a role.

 

 

 

 

Beginning in Nov 2009 DD seemed to get progressively worse -- although she was asymptomatic and never got sick, her behavior got worse any time she was exposed to a viral or bacterial infection. In January 2010 she started getting one skin infection after another. I convinced her doctor (Dr. Fuhlbrigge at the time) to try a HD infusion (1.5 g/kg) and then I wanted to stop the infusions for a few months to see what the difference would be. The healing after the second HD infusion was so much more difficult than the first one and she was in really bad shape. Still no tics but she was violent towards me. She came down with pityriasis rosea in April 2010 and we went to see Dr. L for the first time that same month. She switched DD from Pen VK to Augmentin XR and prescribed 50,000 IU weekly of vitamin D as her D levels were catastrophically low. In May 2010 she was hospitalized for two weeks with another severe exacerbation and she was given month-long tapered prednisone. That took about two weeks to kick in and then she went back into remission. Coincidently (or not) she went back into remission exactly 10 weeks from the date of her infusion in mid March. She has not had any infusions since. She was supposed to go for plasmapheresis over the summer but at the last minute while at GU DD threw a nutsy and they refused to proceed. At that point Dr. L suggested another round of IVIg. We are working on getting approval for that now from our insurance company.

 

 

 

 

Interesting...so with the timing of her improvement after the 2nd IVIG, we'd think it was perhaps the IVIG finally kicking in. But, maybe the prednisone (and switch to Aug. XR / addition of D played a role as well.)

[NancyD]

Oops sorry for the duplicate. Don't know how to delete.

Edited September 24, 2010 by NancyD