2nd week IVIG update & thoughts about mercury

[pmoreno]

Hello all, and hope you see this, Linda, since you were asking me about Gaby's progress

 

Last Saturday was 2nd week after IVIG. Overall things are still good - very consistent, pleasant mood, still concentrating well in school. However, still not sleeping well at night (wakes at 2 or 3 for about an hour) one bad episode on Sunday after a birthday party which was rather stressful & eating cake (which gave her an awful stomach ache - she doesn't tolerate sweets real well). Thereafter, she closed her eyes a few times and said she was having some ugly thoughts. This was worrisome, of course, since she has been pretty much symptom free except for the continuing insomnia - however, if you look at the whole picture, it is not that big of a deal. I have talked to Diana (whose son had IVIG the week before Gaby) and she reminded me that although most kids are 80% better initially, they usually aren't 100% until about 6 weeks later and even then might experience some kind of blip here and there for the first year. All the mothers she's talked to that have been through this for a couple of years have not had relapses after that first year.

 

I noticed a few posts on this forum about mercury and other heavy metal body burden. Interestingly, the last few days I have been giving more thought to why Gaby is prone to PANDAS in the first place whereas the rest of our large family isn't. Her immune system is certainly compromised and something has caused that. Last year when her symptoms first appeared (before I knew it was PANDAS) I wondered about mercury exposure from vaccines so I had a urine porphyrin test done and sent to a lab in France (one of the only places that will do this - although there may be one or 2 in this country) She tested abnormally high for Mercury. Just to reassure myself that this was not a farce, I had several other of my children tested - her twin tested high, but not as high as hers (both girls have a speech & language delay, but Gaby's is more problematic than her twin's (Stefi)), my 15 year old tested moderate, my oldest daughter (29) tested minimal, my step daughter who was not vaccinated in this country, tested completely negative. I'm not surprised that the older kids tested less than the younger ones because over the years, the number of required vaccines has risen tremendously and with each vaccination it brings more mercury in the system (because it is cumulative). Even if it isn't from the vaccines, the bottom line is that she has a high level, period. Some kids are less able to rid their bodies of heavy metals than others. They might have low glutathione levels, for example. And it isn't as easy as just taking some glutathione to change that - it doesn't work like that. You have to do things to allow your body to produce more glutathione on its own - there are supplements for that.

 

In any case, when you have a high heavy metal body burden, it affects the way the immune system functions. Could be why Gaby is prone to PANDAS. Right now, I'm hoping that with the IVIG and Abx, she will get over that. At the same time, I would like to help get rid of some of the mercury if I could, since it doesn't go away by itself and might cause more problems with - who knows what - later. I have been doing a lot of reading about natural chelators like a combination of cilantro and dried chlorella. The cilantro is very potent in moving mercury and it crosses the blood brain barrier, but it doesn't always flush it out - sometimes it gets redistributed in other tissues. The chlorella apparently bonds with it and allows it to come out in the stool and urine. For adults they recommend using a teaspoon of each once or twice a day with a lot of fluid and continue about 3 weeks. With small children, manufacturers recommend using 1/3 the adult dose. Therefore 1/3 teaspoon each and maybe only once a day for 2 weeks. Even with the traditional chelators that the DAN doctors use (IV and suppositories), you don't want to move too much mercury at once because its hard on the kidneys, trying to flush all that metal out at one time. I will be talking to the doctor in Florida that originally diagnosed Gaby with PANDAS this coming Thursday. They specialize in autism and all immunological issues. I want to get his thoughts on this idea about the natural chelation. I have seen some sites on autism and mercury chelation and there were a few adults who tried this and had bad side effects (but they used a whole bunch of cilantro at once - instead of a teaspoon) - Even though its natural, you can't overdo things like that - people always think that if a little of something is good, then a lot has to be better - not so with this stuff. As a matter of fact, the slower you go, the safer it is and it should bring about some favorable results from everything I've read about it.

 

chelation seems to help some autistic kids (if the autism is directly as a result of heavy metals) I think part of the problem with treating autism is that there are other causes too, and its hard to identify sometimes what the cause is. What's interesting is that there are a lot of common denominators here - autism, PANDAS, immune system dysfunction, high mercury levels, vaccines. I think that even if they find that the high mercury doesn't come from the vaccines, there is still something about the vaccines that cause children to have problems with their immune system - and when you think about, you don't have to be a brain surgeon to realize that when you are putting tons of viruses into your child - it would be impossible not to strongly affect their immune system - many times in a negative way.

 

I will write more after I talk to this DAN doctor on Thursday. Also, Gaby's low tolerance to sweets has always made me wonder about leaky gut syndrome which is very common in autism and other kids with immune issues (since most of our immune system is housed in the gut). I will ask him to let us do a test for this (I think it involves giving two types of sugar in one day, then collecting - not sure if its urine or stool - after that to see the amount that is expelled). Pat

[bmom]

Thanks for updating Pat as I am trying to see how these IVIG kids do. We have three more weeks until my son goes in. I am hoping "Worried Dad" posts as well soon. Something I have been thinking about, with the IVIG, do you think it would fix leaky gut and toxin overload? I am not sure of it helping the digestive system, but I was thinking perhaps get rid of the Mercury? What do you think? Let me know if you ask your doctor as I am thinking a lot about the mercury lately too. Also, just wondering if Gaby is still tic free and been since the 2nd day?

[pmoreno]

Thanks for updating Pat as I am trying to see how these IVIG kids do. We have three more weeks until my son goes in. I am hoping "Worried Dad" posts as well soon. Something I have been thinking about, with the IVIG, do you think it would fix leaky gut and toxin overload? I am not sure of it helping the digestive system, but I was thinking perhaps get rid of the Mercury? What do you think? Let me know if you ask your doctor as I am thinking a lot about the mercury lately too. Also, just wondering if Gaby is still tic free and been since the 2nd day?

 

 

Hi, I don't think the IVIG will take care of the mercury - its not a chelator. I'm still convinced that I may have to do something with the cilantro/chlorella combo (I've actually started yesterday). If the doctor tells me on Thursday that I shouldn't do it, then I will stop, but otherwise, I feel that I have to be proactive about this. I've heard that the earlier that you get it out - the more you can reverse - because as kids get older, the damage is harder to repair. I am also adding some foods that are thought to be especially supportive. I don't believe in using a lot of pills or supplements because that can be overwhelming for a child, but some that Dr. K recommends for immune support are vitamin E (I use 200 mg daily on her), vitamin C, and folic acid and most definitely good quality fish oil. (I've heard flax seed oil is good too, but the fish oil is superior) I have found that selenium is very helpful and is found in huge quantities in Brazil nuts (as well as magnesium). I cut them up small and sprinkle in her oatmeal every morning. All antioxidants are extremely helpful so I give her the most potent ones (Pom wonderful which is the best pomengranate juice), organic carrot juice, and raw vegetables like broccoli or spinach ( bought at whole foods - organic without pesticides). She is currently getting vitamin B12 injections per the doctor in Florida because it actually does something to stimulate glutathione production in the body (important for mercury removal). they're very tiny needles, but you can get it as patches too (doesn't get absorbed well by mouth). Another food product that is very safe and supposedly aids in helping the body rid itself of mercury is apple pectin. I may look into that later after I finish with the cilantro/chlorella, but I just don't want to get too many things into the mix.

 

about the tics - no, she really hasn't had any since that first day, although in my post today, I did mention that she squinted or closed her eyes on Sunday in reaction to some "ugly" thoughts. Pat

[michele]

Pat,

Please keep us posted. I really think you are onto something here. It seems all of our kids with PANDAS/immune related issues have these heavy metals and gut/yeast issues. I really appreciated all you posted here that you are doing now to help your daughter. You seem to have a good grasp on things and a plan in sight. I lost my way on the DAN! approach. Maybe I should have stuck with it but it is so expensive and why can't it be covered by insurance? However I think most of what you are posting is what our DAN! was trying to do. He wanted to use chelation to rid of the heavy metals. We did do a yeast remover and enzymes and amino acids that were created for him. It is hard when mainstream Dr's look at this approach and disapprove. I wish they were more in tune with each other. How does Dr. K feel about the DAN! approaches you are doing? So the IVIG will not repair the heavy metal issues or the gut? Will it improve the immune issues? I am so happy the tics are about gone for Gabby now. What about emotional and ADD behaviors, and compulsions? Thanks for your update.

 

Thanks for updating Pat as I am trying to see how these IVIG kids do. We have three more weeks until my son goes in. I am hoping "Worried Dad" posts as well soon. Something I have been thinking about, with the IVIG, do you think it would fix leaky gut and toxin overload? I am not sure of it helping the digestive system, but I was thinking perhaps get rid of the Mercury? What do you think? Let me know if you ask your doctor as I am thinking a lot about the mercury lately too. Also, just wondering if Gaby is still tic free and been since the 2nd day?

 

 

Hi, I don't think the IVIG will take care of the mercury - its not a chelator. I'm still convinced that I may have to do something with the cilantro/chlorella combo (I've actually started yesterday). If the doctor tells me on Thursday that I shouldn't do it, then I will stop, but otherwise, I feel that I have to be proactive about this. I've heard that the earlier that you get it out - the more you can reverse - because as kids get older, the damage is harder to repair. I am also adding some foods that are thought to be especially supportive. I don't believe in using a lot of pills or supplements because that can be overwhelming for a child, but some that Dr. K recommends for immune support are vitamin E (I use 200 mg daily on her), vitamin C, and folic acid and most definitely good quality fish oil. (I've heard flax seed oil is good too, but the fish oil is superior) I have found that selenium is very helpful and is found in huge quantities in Brazil nuts (as well as magnesium). I cut them up small and sprinkle in her oatmeal every morning. All antioxidants are extremely helpful so I give her the most potent ones (Pom wonderful which is the best pomengranate juice), organic carrot juice, and raw vegetables like broccoli or spinach ( bought at whole foods - organic without pesticides). She is currently getting vitamin B12 injections per the doctor in Florida because it actually does something to stimulate glutathione production in the body (important for mercury removal). they're very tiny needles, but you can get it as patches too (doesn't get absorbed well by mouth). Another food product that is very safe and supposedly aids in helping the body rid itself of mercury is apple pectin. I may look into that later after I finish with the cilantro/chlorella, but I just don't want to get too many things into the mix.

 

about the tics - no, she really hasn't had any since that first day, although in my post today, I did mention that she squinted or closed her eyes on Sunday in reaction to some "ugly" thoughts. Pat

[Worried_Dad]

Hi, y'all:

 

Sorry I haven't posted a specific update about my son's progress (posted a few brief updates spread across other threads). My son had IVIG at the same time as Pat's daughter, but he is older (12), so Dr. K cautioned us that his "full conversion" will probably take longer.

 

That being said... so far, so good! Our son's general mood, behavior, cognition, and OCD / separation anxiety / anorexia symptoms have all improved steadily over the past 2 weeks!!! The other morning I asked him how he felt, and he actually said "great." Haven't heard THAT from him in about 2 years!

 

I guess my wife and I are a bit gun-shy (due to the previous "waning periods" when we thought he had turned the corner on this thing), but we can't help but be cautiously optimistic. He still has a long way to go before he's 100% - not surprising after such a long period of illness - but when I think about where we were a month ago (before Dr. K had us do the prednisone burst and discontinue the nasty psych meds), the progress is AMAZING!

 

Interestingly, we had some insomnia issues with our son just as Pat described for Gaby. When our son 1st became ill in 2007, insomnia was one of his major and most crippling symptoms; he pulled all-nighters a couple of times a week. For the 1st time in months he had a sleepless night last Friday. Dr. K reassured us that (as we suspected) this was the "flipping the pages in reverse" phenomenon he's seen in so many of the PANDAS kids after IVIG. We're resuming melatonin and haven't had another occurrence since Friday.

 

So in a nutshell: our son has made major progress since IVIG 2 weeks ago, but we still have a ways to go before he's "himself" again. We'll keep you posted!

 

 

Thanks for updating Pat as I am trying to see how these IVIG kids do. We have three more weeks until my son goes in. I am hoping "Worried Dad" posts as well soon. Something I have been thinking about, with the IVIG, do you think it would fix leaky gut and toxin overload? I am not sure of it helping the digestive system, but I was thinking perhaps get rid of the Mercury? What do you think? Let me know if you ask your doctor as I am thinking a lot about the mercury lately too. Also, just wondering if Gaby is still tic free and been since the 2nd day?

[bmom]

Yeah, yeah, yeah! I am soooo happy to hear that and I am keeping you guys in my thoughts. I have a question for you worried dad- ok 2 questions. First, I was reading some of your posts, and my son has extreme light sensitivity since this exasperation (7 months). The tv, computer, and sometimes sunlight send his tics into major mode. Has the IVIG helped your sons sensory issues-light mainly? Question 2- I am frantically worrying about my daughter lately too. Do any of your other 2 boys show any PANDAS problems. Thank you. My son is also considered in the older range for IVIG (although he will only be turning 10 in a few weeks. ) so I am somewhat watching your son more closely to see the progress.

[Worried_Dad]

Hi, bmom:

 

The weird thing for us is that our son's initial symptoms (when he was diagnosed with Sydenham's) were very different from this latest round. A year ago, he had major "sensory defensiveness" issues - sensitivity to light, smells, tastes, touch - but these gradually diminished during the year he was on prophylactic antibiotics. Light sensitivity has been the most persistent. He also had major movement disorder issues, seizure-like episodes and a wild assortment of tics, difficulty walking, muscle weakness, etc.

 

The symptom explosion in August was totally different. Massive OCD, anorexia, separation anxiety, depression, suicidal talk... hardly any tics (only when extremely tired or agitated, and we suspect much of that was due to the ativan our psychiatrist prescribed). His original sensitivity to smell, taste, and touch didn't reappear, and the light sensitivity didn't seem to worsen.

 

Still, it's definitely true that he seems far calmer now, with no "nervous twitching" or tics. Also, he's now willing to go outside in bright sunlight to take walks, etc., which he resisted in the past. So thinking about it, I'd say that he seems to have improved in both areas since the IVIG.

 

As far as our other 2 boys go... neither have displayed anything obviously in the PANDAS spectrum that we've observed. Have to admit, though, we're kinda paranoid now. When my middle son (8) pitches a fit or overreacts to something, I catch myself wondering "does he have it, too, only milder"? I think the other boys are pretty normal - with the occasional emotional meltdown or tantrum that all kids have - but can't keep myself from worrying sometimes.

 

Hope that helps. Best of luck to you and your son!!!

 

 

Yeah, yeah, yeah! I am soooo happy to hear that and I am keeping you guys in my thoughts. I have a question for you worried dad- ok 2 questions. First, I was reading some of your posts, and my son has extreme light sensitivity since this exasperation (7 months). The tv, computer, and sometimes sunlight send his tics into major mode. Has the IVIG helped your sons sensory issues-light mainly? Question 2- I am frantically worrying about my daughter lately too. Do any of your other 2 boys show any PANDAS problems. Thank you. My son is also considered in the older range for IVIG (although he will only be turning 10 in a few weeks. ) so I am somewhat watching your son more closely to see the progress.

[pmoreno]

Pat,

Please keep us posted. I really think you are onto something here. It seems all of our kids with PANDAS/immune related issues have these heavy metals and gut/yeast issues. I really appreciated all you posted here that you are doing now to help your daughter. You seem to have a good grasp on things and a plan in sight. I lost my way on the DAN! approach. Maybe I should have stuck with it but it is so expensive and why can't it be covered by insurance? However I think most of what you are posting is what our DAN! was trying to do. He wanted to use chelation to rid of the heavy metals. We did do a yeast remover and enzymes and amino acids that were created for him. It is hard when mainstream Dr's look at this approach and disapprove. I wish they were more in tune with each other. How does Dr. K feel about the DAN! approaches you are doing? So the IVIG will not repair the heavy metal issues or the gut? Will it improve the immune issues? I am so happy the tics are about gone for Gabby now. What about emotional and ADD behaviors, and compulsions? Thanks for your update.

 

Thanks for updating Pat as I am trying to see how these IVIG kids do. We have three more weeks until my son goes in. I am hoping "Worried Dad" posts as well soon. Something I have been thinking about, with the IVIG, do you think it would fix leaky gut and toxin overload? I am not sure of it helping the digestive system, but I was thinking perhaps get rid of the Mercury? What do you think? Let me know if you ask your doctor as I am thinking a lot about the mercury lately too. Also, just wondering if Gaby is still tic free and been since the 2nd day?

 

 

 

Yes, DAN doctors are expensive, but for the most part they have some good advice to offer - At the same time, they probably get used to prescribing for a large population of kids with similar symptoms and sometimes I think they get a little carried away with all the yeast removers, enzymes, etc. So you have to think for yourself - what seems to be the biggest problem for your child. In our case, I think its the mercury that has altered her immune system. It's true that most mainstream docs don't approve because a lot of this is experimental - there's not enough evidence, not everything works for every child, not enough scientific proof, some of it can be harmful, especially if done in a hurry. Dr. K has worked with autism for quite some time and is supportive of parents using alternative methods as long as they are safe. He is fairly conservative on most issues, including chelation. I don't believe he fully supports it. (But again, I think its because some of it can be harmful if done too fast or with some really potent chemicals) You asked about Gaby's current emotional behaviors - generally very even, pleasant, smiling, relaxed, calm. Sometimes in late afternoon, evening, as she gets tired, she might say a few things that would show her worrying about something, but not overly so like before.

 

 

 

 

 

 

Hi, I don't think the IVIG will take care of the mercury - its not a chelator. I'm still convinced that I may have to do something with the cilantro/chlorella combo (I've actually started yesterday). If the doctor tells me on Thursday that I shouldn't do it, then I will stop, but otherwise, I feel that I have to be proactive about this. I've heard that the earlier that you get it out - the more you can reverse - because as kids get older, the damage is harder to repair. I am also adding some foods that are thought to be especially supportive. I don't believe in using a lot of pills or supplements because that can be overwhelming for a child, but some that Dr. K recommends for immune support are vitamin E (I use 200 mg daily on her), vitamin C, and folic acid and most definitely good quality fish oil. (I've heard flax seed oil is good too, but the fish oil is superior) I have found that selenium is very helpful and is found in huge quantities in Brazil nuts (as well as magnesium). I cut them up small and sprinkle in her oatmeal every morning. All antioxidants are extremely helpful so I give her the most potent ones (Pom wonderful which is the best pomengranate juice), organic carrot juice, and raw vegetables like broccoli or spinach ( bought at whole foods - organic without pesticides). She is currently getting vitamin B12 injections per the doctor in Florida because it actually does something to stimulate glutathione production in the body (important for mercury removal). they're very tiny needles, but you can get it as patches too (doesn't get absorbed well by mouth). Another food product that is very safe and supposedly aids in helping the body rid itself of mercury is apple pectin. I may look into that later after I finish with the cilantro/chlorella, but I just don't want to get too many things into the mix.

 

about the tics - no, she really hasn't had any since that first day, although in my post today, I did mention that she squinted or closed her eyes on Sunday in reaction to some "ugly" thoughts. Pat

[bmom]

I guess my thinking on IVIG and Mercury was if your immune system is stronger, would it possibly start getting rid of some of that stuff?

[amy s]

I am so happy to hear about the progress of Gaby and worried dad's son!! This is good news! Keep the updates coming!!!

[pmoreno]

I guess my thinking on IVIG and Mercury was if your immune system is stronger, would it possibly start getting rid of some of that stuff?

 

A person with a normal immune system is better equipped to rid themselves of metal, but that's probably small to medium amounts. When you're talking about the large amount that some of these kids have (Gaby, in particular), even a healthy immune system couldn't accomplish that quickly enough. That's why people who have had extreme exposure to metals or other toxins (who do have a normal immune system) will generally have to have chelation. The longer the metal stays in the system, the more irreversible damage it does - that's why when they chelate kids who are a little bit older (over 10), they pull the metal off, and there is some progress made, but not a complete turn-around even if they get all the metal out (because of the irreversible damage to the developing cells over time). I have a friend (co-worker) at the hospital whose son is now 12. He was first chelated at 11 and over a period of a year, they pulled off a lot of metal. He made amazing strides (He has autism - not pandas), was able to verbalize multiple sentences for the first time and actually do math and understand it, started expressing emotion. As well as he is doing now (and most of the metal is gone), he still is not a completely typical functioning child because at some point some of the brain cells were damaged and they don't anticipate that they will all be repaired.

[ratlenhum]

We're actively chelating while we continue IVIG. IVIG will help the immune system but if kids have viruses hiding in their system, which is possible, then IVIG may not help. Viruses hold on to metals too. I know a father who recovered his son from autism with Valtrex. Valtrex took care of the kid's underlying viral issue and then he finally started dumping metals on his own, without chelation.

 

 

As for us, we chelate.

 

Cilantro as a chelator doesn't thrill me. It does have a high affinity for metals but one has to wonder how many other metals it pulled in from the soil and you are now putting into the body.

 

 

You also have to make sure you have a good protocol in place to reduce the frequency of redistribution of the metals

[pmoreno]

We're actively chelating while we continue IVIG. IVIG will help the immune system but if kids have viruses hiding in their system, which is possible, then IVIG may not help. Viruses hold on to metals too. I know a father who recovered his son from autism with Valtrex. Valtrex took care of the kid's underlying viral issue and then he finally started dumping metals on his own, without chelation.

 

 

As for us, we chelate.

 

Cilantro as a chelator doesn't thrill me. It does have a high affinity for metals but one has to wonder how many other metals it pulled in from the soil and you are now putting into the body.

 

 

You also have to make sure you have a good protocol in place to reduce the frequency of redistribution of the metals

 

 

Thanks for the info. By the way, what exactly is Valtrex? I am going to post a new thread on chelation right now - so you may want to read it to see what I have found out today. You're so right about viruses hiding in metal. How did this father know that the boy was dumping metals on his own? You say you are continuing with IVIG - how many times have you done it? I was under the impression that you only had to do it one time, then go on prophylactic antibiotics. Our daughter had 1 1/2 gm per kg of body weight (she weighs 60 lbs, so she had 40 gms total over 2 days). How much has your child had and how often? I understood that if you give this dose that she received, its pretty successful and you don't have to repeat again. It's so expensive, I can't imagine doing this repetitively. Which doctor are you working with and what area do you live in? We have worked with Dr. K in Chicago since we live in Michigan. About the Cilantro - I would buy it at a health food store - I assumed since it was organic, it would not have metals in it - maybe I'm wrong. But anyway, read what I'm about to post and then tell me what you think.

[pmoreno]

We're actively chelating while we continue IVIG. IVIG will help the immune system but if kids have viruses hiding in their system, which is possible, then IVIG may not help. Viruses hold on to metals too. I know a father who recovered his son from autism with Valtrex. Valtrex took care of the kid's underlying viral issue and then he finally started dumping metals on his own, without chelation.

 

 

As for us, we chelate.

 

Cilantro as a chelator doesn't thrill me. It does have a high affinity for metals but one has to wonder how many other metals it pulled in from the soil and you are now putting into the body.

 

 

You also have to make sure you have a good protocol in place to reduce the frequency of redistribution of the metals

 

 

I just googled valtrex and apparently it is an antiviral used for herpes. The only concern I might have is that the ad warns that it is for adults with healthy immune systems. I'd have to look into that further. One thing that is interesting to me, though, is that when Gaby first became ill last November, it started out as a week-long fever, headaches, sore throat, stomach pains (negative for strep at that time) but she broke out into horrible herpes simplex lesions all over her mouth, lips, tongue, even a few down her chin - had never even had one cold sore before that. Then she started having one cold sore almost every month or every two or three months after that. Her most recent one was about 2 months ago, I believe.

[lss]

Pat,

 

Jenny McCarthy's book has a story of a child who had herpes virus 6. Maybe this is what these kids have?

Linda

 

 

We're actively chelating while we continue IVIG. IVIG will help the immune system but if kids have viruses hiding in their system, which is possible, then IVIG may not help. Viruses hold on to metals too. I know a father who recovered his son from autism with Valtrex. Valtrex took care of the kid's underlying viral issue and then he finally started dumping metals on his own, without chelation.

 

 

As for us, we chelate.

 

Cilantro as a chelator doesn't thrill me. It does have a high affinity for metals but one has to wonder how many other metals it pulled in from the soil and you are now putting into the body.

 

 

You also have to make sure you have a good protocol in place to reduce the frequency of redistribution of the metals

 

 

I just googled valtrex and apparently it is an antiviral used for herpes. The only concern I might have is that the ad warns that it is for adults with healthy immune systems. I'd have to look into that further. One thing that is interesting to me, though, is that when Gaby first became ill last November, it started out as a week-long fever, headaches, sore throat, stomach pains (negative for strep at that time) but she broke out into horrible herpes simplex lesions all over her mouth, lips, tongue, even a few down her chin - had never even had one cold sore before that. Then she started having one cold sore almost every month or every two or three months after that. Her most recent one was about 2 months ago, I believe.