Post IVIg

[tapiash]

Wendy

 

I do see a PANDAS/DAN doctor but he has been so busy. I emailed him again about he antibiotic and hopefully he will respond soon. I thought the antibiotic was for inflammation. There is so much info on this forum I start getting confused. I have some liquid silver. It is suppose to help with infection and immune system. It is created by Lindsey Duncan. I wonder if this is kind of like the natural antibiotic you were referring to. I will read up on the natural antibiotic.

 

I thought herxing was associated with Lyme and turning back pages was PANDAS?

[sf_mom]

I believe one in the same thing... 'turning of the pages' is a term Dr. K coined 'I think'. Have you tested your child for Lyme/co-infections via Igenex? Does you child have high immune complexes, if so you could get get a false negative for Lyme.

 

Anyway, I highly recommend you stay on some sort of antibiotic for at least one year post IVIG to protect him and potentially fight an underlying intercellular bacteria.... but I'm just a mother with a sick child and not a Dr.

 

-Wendy

 

 

Wendy

 

I do see a PANDAS/DAN doctor but he has been so busy. I emailed him again about he antibiotic and hopefully he will respond soon. I thought the antibiotic was for inflammation. There is so much info on this forum I start getting confused. I have some liquid silver. It is suppose to help with infection and immune system. It is created by Lindsey Duncan. I wonder if this is kind of like the natural antibiotic you were referring to. I will read up on the natural antibiotic.

 

I thought herxing was associated with Lyme and turning back pages was PANDAS?

[tapiash]

so how/where do you draw the line between herxing reaction and a true disintegration? how do you know when to step in with another intervention?

[

 

 

I have come to the conclusion,no one really knows.

[justinekno]

Oh no! I have finally decided that we are going to test my ds for Lyme tomorrow using IGenex and now I read this about high immune complex giving a false negative on Lyme. My son has high immune complexes. Agghhh! Why would that cause a false negative?

 

Does you child have high immune complexes, if so you could get get a false negative for Lyme.

 

Edited July 25, 2010 by justinekno

[sf_mom]

I am not exactly sure why it occurs..... 'I think the immune complexes can potentially suppress the immune response'. BUT, that doesn't mean the results won't come back positive for Lyme or co-infections just remember they can potentially impact the results.

 

For Example:

 

1. Child thought to have PANDAS and is reactive to strep comes back negative to Lyme but shows positive for the co-infection of Babesia but has high immune complexes. This child most likely also has Lyme.

 

2. Child thought to have PANDAS and is reactive to strep strain that elevates to RF status, immune complexes are normal, CD57 low, came back negative to Lyme but shows positive for Bartonella and Ehrlichia. The child is thought to also have Lyme by Dr.

 

3. Child thought to have PANDAS and is reactive to strep, has high immune complexes, treated with several hdIVIGs, came back positive for Lyme but thought to have Bartonella as well due to recent rash. Child continues to improve and is getting closer and closer to 100%.

 

4. Child thought to have PANDAS and is reactive to strep, treated with hdIVIG and did fairly well for a year post treatment, relapsed and found to have C Dif and Giardia. 2 more hdIVIGs no antibiotics due to C. Dif.... child is currently struggling. They tested for Lyme and came back positive on 5 or 6 bands and now testing for co-infections and pursuing LLD.

 

5. Child thought to have PANDAS and is reative to strep, treated with monthly low dose IVIG/antibiotic of azithromycin.... child regresses. hdIVIG administered back in Feb, tested positive for Lyme and Bartonella and is continuing to improve on right antibiotics.

 

6. Child thought to have PANDAS, low level symptoms, never sudden on-set, CaM Kinase of 179, strep pneumo titers deficiencies, never treated with hdIVIG and has been on the appropriate antibiotics since last spring and is nearly 100%

 

7. Child thought to have PANDAS, OCD so bad he has been institutionalized on and off for the last three years, high ASO, high Anti-DNase-B and reactive to strep.......... put on a month of tapered steroids and ended up in an institution for 3 weeks in June, administered hdIVIG shortly after treatment the child is found to be positive for Lyme. Currently herxing terribly but hopeful everything will improve as the die-off settles.

 

8. Child thought to have PANDAS, child sick for most of her early childhood, several hdIVIG then found to have Lyme and is finally responding to proper antibiotics......... Mother recently discovered she is positive as well.

 

 

There are more stories. I'm sorry if I'm slightly off with the stories due to generalizations and a need to be brief. AND, now many of you who read my posts will know why I've been posting relentlessly about Lyme/co-infections.

 

So, what the Dr. is doing for child number 2 listed is to treat for the co-infections for 8 weeks, retest for Lyme in hopes they have drawn it out by the antibiotics used.... I will let you know the results when they are available. Anyway, don't let the high immune complexes stop you from testing for Lyme/co-infections just know it is common with Lyme and it might alter some of the results. You are absolutely doing to right thing by ruling it out first.

 

-Wendy

Edited July 25, 2010 by SF Mom

[sf_mom]

Laura,

 

Its a combo of stuff..... but I'm happy to leave it in the 'mother's instinct' category for now. I will add that herxing is not only associated with Lyme but is a common phenomenon with several bacteria's. So, why wouldn't it be associated with Strep especially if its known to be intercellular, difficult to eradicate, compromise ones ability to fight additional bacterias and can end up as abscess in the soft tissue? My son's ASO was only 244 at peak sudden on-set and Anti-DNase-B was negative. After a year of treatment and currently no OCD, no TICS... his ASO is 95 and Anti-DNase-B is 60, negative mycoplasma......... Lyme is indeterminate and we are consulting with Dr. Steve Harris in early August. So, was it strep and some co-infection... I don't know at this point but we did have a very noticeable improvement cycle of 3 to 4 weeks. He would definitely get worse and then have a baseline adjustment over that period of time. He was definitely responsive to strep exposures (no doubt in my mind)!! He still has a 48 to 72 hour calm and then a flair of symptoms when antibiotics are changed and shed symptoms when we combo'd up antibiotics.... that is also typical of herxing and Lyme.

 

I would recommend watching for a 3 to 4 week improvement cycles in your son. If you haven't tested for Lyme/co-infections yet definitely do it through Igenex. My friend's son is a prime example of someone who had co-infections and his TICS, ASO and Anti-DNase-B resolved after first IVIG treatment and he had 8 of 9 markers for RF in 2007. Rages, panic attacks, OCD did not resolve.... only to find out after two more IVIG treatments that he also had Bartonella and Erhlicia.

 

Perhaps PANDAS is a perfect storm triggered by strep that caves the immune system. I don't know, I just know that based on all the kids now positive for Lyme we have to check in advance of IVIG to ensure proper antibiotic treatment.

 

-Wendy

Edited July 26, 2010 by SF Mom

[justinekno]

We are testing with IGenex after being on antibiotics for over 4 months. Maybe that will help jumpstart the antibodies, if he has Lyme. We are going on the theory that he may have been born with it.

 

I am not exactly sure why it occurs..... 'I think the immune complexes can potentially suppress the immune response'. BUT, that doesn't mean the results won't come back positive for Lyme or co-infections just remember they can potentially impact the results.

 

[sf_mom]

We are checking into that possibility for all three of our children as well....

 

We are testing with IGenex after being on antibiotics for over 4 months. Maybe that will help jumpstart the antibodies, if he has Lyme. We are going on the theory that he may have been born with it.

 

I am not exactly sure why it occurs..... 'I think the immune complexes can potentially suppress the immune response'. BUT, that doesn't mean the results won't come back positive for Lyme or co-infections just remember they can potentially impact the results.

 

[KeithandElizabeth]

I just want to ditto everything SF Mom is saying. Some of these children can have lyme without elevated immune complexes and some have lyme with elevated immune complexes. The tricky aspect is that the elevated immune complexes can create a false negative lyme test because I believe the lyme antibodies are tied up in the complexes and are therefore not showing up in the blood stream.

 

My advice would be to go ahead with the IGENEX test, but also consider making an appointment with a lyme literate doctor because they are booking out months in advance. One of the problems right now is that many doctors are attempting to treat lyme on their own and I believe it is too tricky to treat without the guidance of an experience lyme physician. You can call the 1-800 ILADs number to find the closest lyme literate doctor to you.

 

Again, as SF Mom was mentioning, there are so many families who are showing up positive for lyme. If you are not having great success post IVIG or if you are just beginning your journey, I would DEFINITELY do the lyme testing first.

 

Elizabeth

Edited July 26, 2010 by KeithandElizabeth

[KeithandElizabeth]

I just wanted to include the following reasons as to why one may have a false negative lyme test. Please note the second section, number 2, where high immune complexes can create a false negative lyme test.

 

http://www.anapsid.org/lyme/lymeseroneg.html

[momto2pandas]

I think what happens after IVIG is complex. High doses of IVIG are antiinflammatory, so help shut down the permeability of the BBB. At the same time, IVIG is immune supportive (of course), so also helps the body fight infections...hence die-off.

 

We saw immediate improvements after IVIG, but also brief intervals of worsening. Great energy for a while, and then short bursts (like 30 seconds) of terrible behavior. For us, this lasted something like 3 weeks. We also saw bed-wetting during this time, which normally only happens for ds6 during a bad PANDAS episode.

 

We were told that with subsequent IVIGs it would even itself out, and that seems to be true. After their second and third IVIGs, which were the lower dose (0.75 instead of 1.5), the "turning back" was much briefer and more subtle. Ds4 had one really bad day (mood, crying, OCD-fussiness) right after the 2nd dose but ds6 was fine, but then ds6 had a really bad day after the 3rd dose. After each dose, we see bed-wetting for a few days. This is a bizarre symptom to me because we see it after IVIG even when behavior/mood seeems totally normal...but of all of the PANDAS symptoms that might flare, I'll take this one! Throw on a pull-up, problem solved.

 

As for antibiotics, we were told by 3 doctors, one of which is a PANDAS "expert" to go 3 months after starting IVIG and then do a trial without. We are now about 10 days into our trial without. We are seeing very slight deterioration in ds6 over the last day or 2, but it's hard to evaluate because that always happens in the couple of days leading up to the next IVIG (which is this Friday). Same thing happened even on the zith. If he doesn't perk up again immediately following the next IVIG, I think we'll go back on the ab or rotate to Augmentin. The one thing that's making me nervous about this couple of days of deterioration, as opposed to what we saw in previous months, is that I am having an annoying eyelid twitch in my right eye. This happens to me periodically (rarely), but when I was going through years of our medical records a couple of months ago, I noticed that it has only happened to me when someone in the family had strep. That makes me nervous that ds6 still has underlying strep and that it's flaring now that he's off ab.

[tapiash]

I think what happens after IVIG is complex. High doses of IVIG are antiinflammatory, so help shut down the permeability of the BBB. At the same time, IVIG is immune supportive (of course), so also helps the body fight infections...hence die-off.

 

We saw immediate improvements after IVIG, but also brief intervals of worsening. Great energy for a while, and then short bursts (like 30 seconds) of terrible behavior. For us, this lasted something like 3 weeks. We also saw bed-wetting during this time, which normally only happens for ds6 during a bad PANDAS episode.

 

We were told that with subsequent IVIGs it would even itself out, and that seems to be true. After their second and third IVIGs, which were the lower dose (0.75 instead of 1.5), the "turning back" was much briefer and more subtle. Ds4 had one really bad day (mood, crying, OCD-fussiness) right after the 2nd dose but ds6 was fine, but then ds6 had a really bad day after the 3rd dose. After each dose, we see bed-wetting for a few days. This is a bizarre symptom to me because we see it after IVIG even when behavior/mood seeems totally normal...but of all of the PANDAS symptoms that might flare, I'll take this one! Throw on a pull-up, problem solved.

 

As for antibiotics, we were told by 3 doctors, one of which is a PANDAS "expert" to go 3 months after starting IVIG and then do a trial without. We are now about 10 days into our trial without. We are seeing very slight deterioration in ds6 over the last day or 2, but it's hard to evaluate because that always happens in the couple of days leading up to the next IVIG (which is this Friday). Same thing happened even on the zith. If he doesn't perk up again immediately following the next IVIG, I think we'll go back on the ab or rotate to Augmentin. The one thing that's making me nervous about this couple of days of deterioration, as opposed to what we saw in previous months, is that I am having an annoying eyelid twitch in my right eye. This happens to me periodically (rarely), but when I was going through years of our medical records a couple of months ago, I noticed that it has only happened to me when someone in the family had strep. That makes me nervous that ds6 still has underlying strep and that it's flaring now that he's off ab.

 

So you are saying PANDAS doctors recommend antibiotics for at least 3 months. I guess I better call my doctor. He does not even know I took my son of. We are scheduled for another IVIG in 2 weeks but after reading your post, I feel a little better about it. Have you tried the clay and epsom salt baths? My son has never had a diagnosed strep infection. The Pandas started Dec 2008. He was really sick but no documented strep. All of his blood work was negative except the Cam K. Pandas is so complicated . If I had a choice, I think I would take bed wetting as opposed to rages and irritability. Thanks for sharing your IVIG experiences.

[momto2pandas]

One update this morning - now that he's awake today, we can definitely see that ds6 is worse, now his 10th day off of antibiotics. He looks sick, he's sniffling, and he claims fatigue and "mad feeling" (looks more like mild depression to me), so I do think he's seeing strep again. We're going back on antibiotics today. So I would call this, for ds6 anyway, a failed trial off of antibiotics. I put a call in to Dr. McGhee to see if we should switch from zith to augmentin. Ds4 still seems to be doing fine for now.

 

We have not tried charcoal or clay, but occasionally do epsom salt baths. After each of the last 2 IVIGs, only one child had one bad day each time (and the other child had smooth sailing), so I didn't think we were herxing much anymore at that point. Now that ds6 is sick again, though, I wonder if he'll have a hard time after Friday's IVIG.

[momto2pandas]

p.s. I know what you mean about the difficulty of knowing if they're being "little turds" or if it's PANDAS. My kids have been well enough for long enough now that when ds6 sassed me once too many times last night, I took away his TV time until Wednesday (after warnings) with little hesitation. Now that he's obviously sick this morning, I feel kind of guilty about that because I doubt that he could have helped it. It's hard to know what to do, though. I think it would be very confusing to the kids if we disciplined them when we thought they were doing fine but not when we thought they weren't, especially because for mild PANDAS, it's so hard to tell the difference and the kids would be smart enough to try to manipulate our persceptions. But of course, we can't go through their childhoods not disciplining at all when the behavior exhibited is mean/harmful to another person (in my opinion). So that leaves us with disciplining even when the cause is PANDAS.

 

I guess our general approach is to discipline enough for turd-like behavior to send a message that acting out toward others is unacceptable (e.g. time out in room, loss of TV time, temporary loss of any toy that's used in a conflict, etc.), but not to discipline TOO harshly (e.g. I haven't yet canceled playdates or significant privileges, etc.). I personally haven't disciplined at all for PANDAS behaviors that don't harm others.

 

I sure hope that this is 100% under control by the time they are teenagers - seems like the discipline part would get much harder then.

[tapiash]

p.s. I know what you mean about the difficulty of knowing if they're being "little turds" or if it's PANDAS. My kids have been well enough for long enough now that when ds6 sassed me once too many times last night, I took away his TV time until Wednesday (after warnings) with little hesitation. Now that he's obviously sick this morning, I feel kind of guilty about that because I doubt that he could have helped it. It's hard to know what to do, though. I think it would be very confusing to the kids if we disciplined them when we thought they were doing fine but not when we thought they weren't, especially because for mild PANDAS, it's so hard to tell the difference and the kids would be smart enough to try to manipulate our persceptions. But of course, we can't go through their childhoods not disciplining at all when the behavior exhibited is mean/harmful to another person (in my opinion). So that leaves us with disciplining even when the cause is PANDAS.

 

I guess our general approach is to discipline enough for turd-like behavior to send a message that acting out toward others is unacceptable (e.g. time out in room, loss of TV time, temporary loss of any toy that's used in a conflict, etc.), but not to discipline TOO harshly (e.g. I haven't yet canceled playdates or significant privileges, etc.). I personally haven't disciplined at all for PANDAS behaviors that don't harm others.

 

I sure hope that this is 100% under control by the time they are teenagers - seems like the discipline part would get much harder then.

 

I agree. Regardless of what is causing the behavior children, PANDAS or not, need to learn there are consequences for their behavior. My son was being naughty one day and I sent him to his room. I told him it was not acceptable to treat others the way he did and he needs to stay in his room for thirty minutes (with nothing) and think of better ways to treat others. I feel if we do not discipline our children they may use their illness as a manipulative. As difficult as it is to see my son upset, I know in the future he will be a better person because of it.