Improvement, but not remission

[JAG10]

I think you are on the right track thinking multiple IVIG's are needed. My kids have only had one but the nurse rescheduled us for the 2nd one 8 wks after the 1st one. My mom was with us and asked if there's a chance they won't need a 2nd IVIG. The nurse said that pretty much nowadays it's 2 right off the bat and then after just wait and see. When I spoke to Dr. B, he said to check in at week #4 post IVIG to let them know how things are going with the kids and by week #7 post IVIG if things are not 95% better, IVIG #2 is a must. I asked him if the OCD for DD (not so much better but she has learned to manage it better) is just a habit and needs behavioral therapy to combat it. He said, "No! The auto immune antibodies are causing the OCD and until that is addressed and "fixed" with IVIG, the OCD will not go away." He was very certain and firm on this. He was also reassuring that will win this battle but it just takes time which is comforting to keep up the good fight. From what I understand, he thinks she's past the bacterial/infection level and it's the immune system level we are tackling. Is there strep harboring in her body??? Is it that my DS still has tonsils/adenoids and was our carrier and then too came down with PANDAS or as Dr. B. thinks and I tend to agree, my DS has had a lower level chronic state of PANDAS since he was little--quite possibly and he's the one not allowing DD to get to "remission" level as quickly nor himself??? I don't know. But that's why we're fighting to get his T's & A's removed ASAP. BTW, got appt w/ Dr. X on Monday!!! Yippee! Said I found him from my insurance dr. list. You think he's a good surgeon/good hospital?!?!

 

Absolutely! He is not warm or fuzzy, quite the opposite. He will put you on the spot asking you what you want. He's a cold fish. He will not make you feel comfortable doing the T and A on the specialists recommendation. (the hospital staff are warmer and fuzzier) BUT... he will do it and he is very skilled. Play a little dumb, but not too dumb. Talk about how these specialist met at NIMH this summer and they appear to be in accord that T and A for PANDAS are recommended, but that Dr. B could probably do a much better job explaining it than you can and encourage him to call or email him....which he will.

Good luck!

[thereishope]

.

Edited November 4, 2010 by Vickie

[sf_mom]

Please understand Coco's post is very old. They eventually unraveled Lyme for her daughter as well as for her. They stopped the hdIVIG for a period of time based on Dr. K recommendation. I do believe she had one additional treatment in June but both are seeing an LLMD and doing much better. Please check her history as I think she gives an update within the last couple of months.

Edited November 3, 2010 by SF Mom

[JAG10]

Please understand Coco's post is very old. They eventually unraveled Lyme for her daughter as well as for her. They stopped the hdIVIG for a period of time based on Dr. K recommended. I do believe she had one additional treatment in June but both are seeing an LLMD and doing much better. Please check her history as I think she gives an update within the last couple of months.

 

Here is the most recent update:

 

http://www.latitudes.org/forums/index.php?showtopic=9474&st=0&p=79511entry79511

 

She does say that myco-p and lyme were detected and are being treated, but she also appears to be implementing several different treatments including abx, HD IVIG and steroids as needed. She also comments they would choose HD IVIG again if needed.

[sf_mom]

I of course am going to say... continue to check for more infections due to our personal experience (if you have not already). As you know the medical community is spilt on auto-immune verses chronic infection. The Lyme community will lean more toward chronic infection in general and PANDAS community will lean more towards auto-immunity.

 

Just want to give you an example: Little girl has had 4 hdIVIG, two ldIVIG.. in addition to antibiotics and steroids. With the majority of her treatments last fall/winter. Because this little girl still has mild TICs/OCD (not 100%) she was recently checked for everything. She is positive for Lyme, Bartonella, Mycoplasma and a virus after all those treatments. How can that be you ask? Well, IVIG is not a cure if there is a chronic infection. If the infection is still present inappropriate antibiotics directed at wrong infection can cause greater treatment resistance. Dr. Ann Corson addresses this topic in her presentation at recent ILADS conference.

 

At this point, there is very little overhead in properly ruling out additional causes in advance of another expensive hdIVIG treatment.

 

-Wendy

Edited November 3, 2010 by SF Mom

[JAG10]

I guess I'm split too. All possible infections should be investigated, but I don't believe that every child who has symptoms must have a current, underlying infection or there would be no symptoms. I think a child could be clear of infections yet their immune system has not gotten the message to stand down.

 

I'm investigating lyme and co-infections because while I don't think it is likely based on my child's symptom history and development, I do think it is a reasonable possibility based on where we live, our family's love for the outdoors, and the history of one tick bite, even though the tick tested negative-we're still testing her and that $920 overhead is not without consideration!

 

I respect your experience and those of the other families pursuing lyme treatment. Most folks appear to be on board checking into Lyme to some degree. We all love our children and will leave no stone unturned to get them well. That being said, lyme is not under every single rock. For those who have ruled it out or are planning contingencies based on results and instinct, IVIG is a worthwhile discussion and information accumulated over time may be new to someone here and valuable.

[sf_mom]

Agreed and I am not ruling out anything either to get my kids well. Our twins do have extremely compromised immune systems and will consider IVIG if needed. As you may know, our older son had 3 hdIVIGs with great success. The only piece of advise these days is to rule out as much as possible on the front end of more aggressive treatments. We did not know other microbes could be a factor when originally treating for PANDAS.

 

I hope the testing will provide some solid perspective as you move forward with treatment.

 

-Wendy

[JAG10]

Agreed and I am not ruling out anything either to get my kids well. Our twins do have extremely compromised immune systems and will consider IVIG if needed. As you may know, our older son had 3 hdIVIGs with great success. The only piece of advise these days is to rule out as much as possible on the front end of more aggressive treatments. We did not know other microbes could be a factor when originally treating for PANDAS.

 

I hope the testing will provide some solid perspective as you move forward with treatment.

 

-Wendy

 

We do too and I'm keeping my eyes reasonably wide open (but not dilated.....sorry, couldn't help myself!)

 

I still don't understand how you monitor myco-p by blood markers? If it takes YEARS for the titers to fall, how do you know what is current and what was effectively eradicated? Plus, my dd10's myco-p was measured right before IVIG (1.62) and 9 weeks after (3.02) AND she was not sick in between nor was anyone else, it was summer.....so it appears to me the IVIG made her myco-p marker double... during this same period of time her symptoms improved, not worsened.... Dr. K speculated that myco-p antibodies/markers in the population in general have risen recently and this measurement reflects that.....

 

I don't get it....how do you know what is going on with myco-p? Do you just go by IgM and forget about IgG???

 

I also wonder if myco-p, bcs it must be evaluated with a blood test, flies under the radar more than strep which is much more convenient to swab at an office visit? We know our kids can demonstrate atypical symptoms or no symptoms...what if when challenged with myco-p they appear to have a brief-er virus, or nothing but behavioral stuff and never get checked for myco-p, but that is what is going on?

 

My mommy-gut tells me myco-p is my dd achilles heal and that she spirals downward harder and faster with that than strep, even though her strep titers can fly off the charts.

[thereishope]

A lot of people, and kids, in the general public can have Myco P and they never go to the doctor. It can manifest as a harsh cough that many dismiss as a virus that will pass or allergies. To make things worse, even if you do get physical symptoms, like a cough, there's a chance you won't have that symptom until something like 6 weeks after you contracted it. It's hard to get any kid to avoid it when you think about it. It's sneaky!

[sf_mom]

One thing I have learned in all of this is to trust my mommy instincts in all of this craziness!!!!

 

Here is a good perspective on Mycoplasma. http://www.drgregemerson.com/fact-file/mycoplasma

 

-Wendy

[Fixit]

Agreed and I am not ruling out anything either to get my kids well. Our twins do have extremely compromised immune systems and will consider IVIG if needed. As you may know, our older son had 3 hdIVIGs with great success. The only piece of advise these days is to rule out as much as possible on the front end of more aggressive treatments. We did not know other microbes could be a factor when originally treating for PANDAS.

 

I hope the testing will provide some solid perspective as you move forward with treatment.

 

-Wendy

 

We do too and I'm keeping my eyes reasonably wide open (but not dilated.....sorry, couldn't help myself!)

 

I still don't understand how you monitor myco-p by blood markers? If it takes YEARS for the titers to fall, how do you know what is current and what was effectively eradicated? Plus, my dd10's myco-p was measured right before IVIG (1.62) and 9 weeks after (3.02) AND she was not sick in between nor was anyone else, it was summer.....so it appears to me the IVIG made her myco-p marker double... during this same period of time her symptoms improved, not worsened.... Dr. K speculated that myco-p antibodies/markers in the population in general have risen recently and this measurement reflects that.....

 

I don't get it....how do you know what is going on with myco-p? Do you just go by IgM and forget about IgG???

 

I also wonder if myco-p, bcs it must be evaluated with a blood test, flies under the radar more than strep which is much more convenient to swab at an office visit? We know our kids can demonstrate atypical symptoms or no symptoms...what if when challenged with myco-p they appear to have a brief-er virus, or nothing but behavioral stuff and never get checked for myco-p, but that is what is going on?

 

My mommy-gut tells me myco-p is my dd achilles heal and that she spirals downward harder and faster with that than strep, even though her strep titers can fly off the charts.

 

 

ds has not had ivig...igg was very high...once we started abx it dropped in a period of months...but we had a slight rise just before things got bad here again......i don't know what it is now (we are better than that draw currently)...i would love to have a monthly draw on it also...i think it is chronic.....

[sf_mom]

Note in the article posted it can take 9 to 24 months to treat chronic Mycoplasma... rotating multiple antibiotics.

[JAG10]

A lot of people, and kids, in the general public can have Myco P and they never go to the doctor. It can manifest as a harsh cough that many dismiss as a virus that will pass or allergies. To make things worse, even if you do get physical symptoms, like a cough, there's a chance you won't have that symptom until something like 6 weeks after you contracted it. It's hard to get any kid to avoid it when you think about it. It's sneaky!

 

So, if you have confirmed "chronic myco-p" by MD and blood markers.....do you eradicate the infection with targeted abx while improving the terrain with IVIG? Is there a down side to that strategy?

 

This is how I think my dd was so sick with PANDAS for so long (stab guilt here) She was asymptomatic of strep with "symptoms of concern" brewing until March 2007 when WHAM she nose-dived after having a persistent cough for weeks in February. We took her to psychiatrists bcs the symptoms were what we saw, we didn't see a chronically physically ill child....we followed the psychs recommendations that never worked, we listened to the peds who said they need to have a fever for 72 hrs before we'll see them...

The field of medicine has so let down our children and been Outwitted, Outplayed and Outlasted by the Surviving Mighty Microbes.

 

I've heard our lyme friends who say it can just be neuro symptoms, and I'm still getting it all checked out....but my dd has amazing stamina, no fatigue whatsoever (she runs 5Ks and does triathlons), no joint/muscle/aches/pains-nothing like that; it is and always has been for years neuro-psychiatric symptoms.

[KeithandElizabeth]

Our son had mycoplasma issues (along with lyme) and was positive for mycoplasma and strep after 6 IVIG's and 7 months of antibiotics. As you know, mycoplasma does not have a cell wall (like lyme) and can be just as sneaky as lyme. Of course, every doctor will have a different opinion in regards with how to treat it. Most LLMD's believe that mycoplasma treatment requires long term (and often multiple) antibiotics. I have read that augmentin is not an effective antibiotic for mycoplasma.

 

I would recommend viewing Dr. Ann Corson's speech at the ILAD's conference. She described "our" (PANDAS) children in detail in her speech about how some children with lyme disease display only neurological symptoms, including Tics, OCD, depression, anger, etc..... These children, like my children, may not have any typical physical ailments. My son did not have any leg or joint pain initially and he was definitely not fatigued. If anything, he was barely sleeping at all!

 

So, I now consider elevated mycoplasma IGG's or IGM"s to be a chronic infection.

 

Elizabeth

[smartyjones]

The field of medicine has so let down our children and been Outwitted, Outplayed and Outlasted by the Surviving Mighty Microbes.

 

I've heard our lyme friends who say it can just be neuro symptoms, and I'm still getting it all checked out....but my dd has amazing stamina, no fatigue whatsoever (she runs 5Ks and does triathlons), no joint/muscle/aches/pains-nothing like that; it is and always has been for years neuro-psychiatric symptoms.

 

 

oh JAG - that comment makes me cry with its harsh sting of reality!!

 

i see you say you're getting other infections checked out. . . my opinion is it could be both -- other infections could be troubling her immune system but what you SEE is from myco trouble.. . . perhaps she can't kick the myco or it is so troubling for her b/c the other infections exist but in more of a 'silent' existence. so you could be right -- myco is her achillies heel and what you see and other infections enable it to be so.