JAG10

My dd7 had her tonsils out last September. She came home the same day. She was actually pretty good for several days, the more intense pain came after the scabs formed. My doc had me keep her on Tylenol with codeine for a complete week, then as needed. She had no complications and went back to school a week later taking Tylenol (straight) as needed.

When I asked Dr B about C3D levels last week, I was asking if they were indicative of where a child's body is in this process. So the normal range for my girl is 0-8, and she was 27 last October. I was asking if we retested would that indicate a "status" of her immune function/dysfunction. He said her C3D has likely decreased, but that the results r not used reflectively that way and that it can take awhile for those measurements to come down. So even though she has improved significantly since last October, he didn't see any value in retesting C3D now. I did not ask him about ways to detox the complexes out of the body. I would imagine the only immediate way is PEX, no?

Peg, I just asked Dr B about C3D last week. He said the IgG does bind with the bad antibodies so the body can get rid of them. It takes awhile for C3D levels to decrease. A lot of folks on the Lyme board are well versed in the detox department, we've only tried AbsorbMoreToxins with glucomannan, bentonite clay and activated charcoal, but it binds with everything, so give hours away from other meds. I'm sorry if this wasn't what you were asking about, hopefully others will chime in, maybe Laura?

Someday it may be viewed that pandas did autism a favor in that it has pushed the issue of determining the underlying medical condition resulting in XYZ symptoms to a higher level. Is OCD a separate dx or on the ASD? How about TS? I do think there is something biologically different between children who are ASD vs PANS only. Maybe it is the susceptibility to "gut issues" that results in onset of symptoms in conjunction with certain environmental triggers, vaccines, ect. Idk. I do think the symptoms present differently as well albeit there are similarities. I have no doubt I could have doctor-shopped for an ASD dx for my dd between 1-4th grades when she was at her worst. She honestly did not fit the criteria, but rather displayed some characteristics similar to ASD. A hallmark of autism is a language delay by age 3. My dd had 50 words by her first bday and her language was advanced up to a point. Has she exhibited language difficulties that come and go over her lifetime? Absolutely. But they are not the same difficulties as a child with autism. Her language difficulties appear more memory related; word retrieval difficulties and overuse of vague terms AND these difficulties are not constant. Well, this pattern is not consistent with Aspergers or "high-functioning" ASD either. That being said, I do see many of my ASD students have an increase in their particular symptom set related to illness; it is undeniable, yet so many lay people brush it off as them just not feeling well versus immune system dysfunction. I hope science catches up soon. Autism is becoming a catch-all for "something ain't right."

There are the research docs and the practicing docs. I'm not sure about documented research with pandas/pitand and vaccines. The practicing docs, the specialists on the front lines with our children advise against vaccines. These are not necessarily "anti-vaccine" physicians, but ones who realize the benefit does not out-way the risk for our children. My dds currently see dr B. I have a letter from him for both of my girls. They are older, 11 and 8, so they already have had most vaccines. I will give the letters to my ped at there yearly well- check this summer. She will yield to the specialist, but would otherwise give me a hard time. PA is easy for medical and religious exemptions for vaccine, but my girls will have to stay home if there is an outbreak of something they are not vaccinated against. You have your hands full right now. If you can swing it, you should try and get one of these specialists on your side. Some folks are successful arming themselves with research and changing hearts and minds, but most of us haven't experienced that. Don't beat yourself up; you are way ahead of the game compared to most.

I agree with pandas16. Actually, there seems to be two categories post ivig. Some like pandas16 and my dd have some regression with the infusion and the improvement surfaces weeks later. Others have initial improvement that "lasts" X number of weeks, then fades to regression until the next infusion. If you choose the multiple ivig route like we have, the regression at time of infusion is diminishing each time, I suppose as there are fewer and fewer bad antibodies to mop up. We are at a point where the regression is very mild ADHD type behavior. My dd11 had her 5th successive infusion yesterday and the day before. She keeps improving. She used to be out of sync and unaware of much of what was going on around her. Now she is snappy and I need to be very careful speaking near her bcs she picks up on everything. When we got home yesterday, she went swimming. She dove in the water like a typical girl her age rather than awkwardly falling in head first. She swam across the pool with these beautiful, effortless strokes rather than slapping the water and kicking like wild woman. She is becoming more and more neuro-typical....which when we talk about that last 10-15% for kids who have been sick for so long can be so hard to articulate, but we all know it when we see it.

On Igenex, it's listed 23-25. My dd11 was IND for 23-25 IGG, negative IGM in Nov 2010. Repeat testing in May 2011, both IGG and IGM were negative for 23-25. Dd8- negative 23 IgG and IgM I looked thru all our records, I was the only one "reactive" thru Quest for 23 IgM, my only reactive band. I do not have Lyme disease, no psych issues, fatigue issues, no joint or muscle aches or pains. This test was from 8 months ago. Idk what it means, but I'm not worrying about it.

Tried to PM you, but you're just too popular!!! All filled up, time to purge. Jill

My dd11 had her 1st ivig with Dr K one year ago just before Memorial Day. She had been sick a very long time, since preschool, but significantly worse March 2007, first grade. By the time we knew what we were dealing with, she had been on a cocktail of 3 psych meds for years and she was barely, barely functional enough to attend school. Whenever, she got mosquito bites, which was 6 months of the year, she would scratch them to sores and then pick at the scabs over and over until they were ulcerated. All that stopped since that first ivig and she's been off all psych meds ever since. But she hovered around that 85% recovered rate with some cognitive fog and anxiety as remaining symptoms plus she still had the dilated pupils. We paid out of pocket for that first ivig and I don't regret it, not one cent. But we want her 100% as does everyone else. We took her to Dr. B who is a 3 hr drive rather than a plane ride from Philly. She tested low IgG and failed all her strep pneumonea titers so Dr. B was able to get her covered for ivig for 6 months ending next week. So we are taking her for her "last" ivig this Wed-Thurs. Her IgG levels are now In the 1500 range more than twice what it was when we started. We had a hiccup last month as her liver enzymes were crazy elevated from too much abx. We did a trial of Batrim on top of Zith for possible Lyme stuff, but she has 3 negative WBs now and we are done with treating possible Lyme and are convinced it is not an issue in her case. Now we wait and see if once we get several weeks out from this last ivig, is the lingering anxiety gone? When I look closely at her academic issues they seem to be anxiety based to me. Anyway, I hope so, but it is a hard symptom to kick for some reason. I can't really complain, she's come so, so far. I also have a younger dd8 who we have been able to manage with abx. I won't be able to tell until the end of the summer with my older girl, likely. Hang in there. There are lots of folks here who have had rocky post ivig periods. Lean on them as they can definitely relate!!! Jill

It's hard to know what to expect at week number X; there are so many variables amongst our kids. The observation that symptoms are worsening is referred to in many different ways on this forum such as flipping back of pages (like you are going back in time seeing symptoms from the child's past), die-off, herxing, and my fav: parent suicide period! Some of these terms have specific meanings that are used rather liberally here, but the idea is the same....your kiddos symptoms are worsening. What you are describing is more typical than not. My dd didn't really get worse but I think that's because she was one hot mess to begin with at the time of her 1st ivig. We saw more of a shifting of behaviors where for a couple weeks symptom set A was more predominant, then symptom set B would ramp up while the others diminished. At the time, I described it as a pendulum swinging back and forth from one set of symptoms to the other, but with each swing, less energy or intensity of symptoms. I'm sure Dr. K told you...ANY change is good; getting worse or getting better confirms there is an underlying medical condition to the behaviors exhibited rather than "baby, you were born this way." No change can be concerning, but even some of those folks have gone on to find underlying infections or a specific abx that started rolling the ball in the right direction. Dr. K has some children who get worse and start carrying-on during the treatment. And his response is giddy; he sees it as a positive prognostic indicator. So, if you adopt that frame of mind, it might result in a little less wear and tear on your soul. Hang in there & pop-on for support Jill

To a similar point, there was an article last year about the relatively "high" trace levels of atypical antipsychotics found in the water in Bucks, Montgomery and Philadelphia. I think that was a year ago spring.

I pulled a tick of dd11 in 2006. My BIL has Lyme disease and told me Igenex would test the tick itself. I put it in a ziplock by itself, printed the forms off the web and sent it on its way. It was $60 back then. Now I hear it costs $65 per disease you want the tick tested for. I'm guessing it was dead, but I didn't do anything to it to kill it, so idk, maybe it wasn't. As long as you have a plastic bag and a computer, you should be good. The tick does not need its own physician to sign off.

Kelly, you made me spit out my iced coffee!!!! Trudy- I honestly do not mean to sound abrasive. Here is the bottom line in my head; symptoms or lab results typically reported here by parents are usually the result of bacterial or viral infections, medications or autoimmune process. All our collective efforts to nail down symptoms or biomarkers to differentiate devil A from devil B have not yielded much that can be agreed upon. If the parents are convinced their child has an infection, but cannot tolerate oral abx, then IV abx sounds like a logical alternative. I think Kelly is right in my dd's case.

This is an interesting article on IVIG and passive immunity. http://cmr.asm.org/cgi/content/full/13/4/602#SEC2_1

Hey Trudy~ You obviously had much more than low WBC and high liver enzymes that convinced you Lyme was in play because any bacterial infection can result in low WBC and high liver enzymes...but as high as my dd's were, Dr. B was most suspicious of Hepatitis A, or EBV and most obviously the abx which based on her dramatic improvement is the likely culprit. I suspect the Bactrim put her over the edge and resulted in NO behavioral changes or rashes. We have exhausted the lyme route to our satisfaction and as my dd's case proves....all these abx to trial despite 3 negative WB does not come without a price. That being said, I'm very happy for you that Lyme treatment is yielding positive results. I'm not "anti-Lyme", it's just not the cause of every ailment.

Laura- We've stopped everything, all meds, supplements, vitamins....since June 2 trying to bring down dd11's liver enzymes and it is working as they dropped dramatically in two weeks time. So glad doc periodically runs liver check, or we would have had no idea. It does appear as if her nausea and headaches could have been related to liver distress since this have since stopped, but who knows for sure. Interesting articles. Jill

Kim- You must be so encouraged! It is so hard to resist the urge not to want it all; the temperament, the health and the academic success....and maybe you shouldn't resist it. I draw the line with academics with my girl when she is clearly incapable due to cognitive dysfunction symptoms, but if I waited for complete remission or health, well...she might still be in kindergarten instead of sixth grade, lol. Here's praying for continued health!

Hi Kim- I'm actually encouraged her AST and ALT decreased so significantly in such a short period of time. I'm guessing the Bactrim really disagreed with her body although symptomatically she showed no reaction to it whatsoever. The body's white blood cell count can decrease from medication also, but I'm not sure that is what is going on with her since it has been trending downward over the last 18 months. We'll see what the doc says. I guess the middle of the night post is indicative of my anxiety, huh?

Hi Amy- Not much to add, no problems with my dd11's TSH that I know of. But both my MIL and SIL developed hyperthyroidism after pregnancy and remain on medication. I remember when going over family hx with Dr. T, he thought that was significant and said we would need to monitor overtime. I can't remember the exact significance he attached to it other than the autoimmune component, but perhaps you could pose the question on his blog and he might have some other insight for you. Ttyl, Jill

My dd11 had some lab work done last week in response to super elevated AST and ALT results. On June 2, day two of her 4th IVIG, we learned her liver enzymes were way out of wack. AST- 336 (range 12-32) ALT- 729 (range 8-24) ALL medications were stopped; Zith, bactrim, ibuprofen, fish oil, vitamins, we didn't do the usual post ivig prednisone; NADA. We waited two weeks and repeated labs on June 15. AST- 53 ALT- 68 Still high, but much, much better! Now.......for the rest of it. Hepatitis: They ran a hepatitis panel which I don't think is helpful for Hep A. Her total Hep A was reactive, but this could be from vaccine; the only way you know is to run Hep A IgM. Hep B was reactive for vaccine all others negative. EBV: She had an EBV VCA panel done in Feb 2010 which was IgM negative indicating at that point in time she had not been exposed to EBV. This time, she was IgM negative, but EBV VCA IgG was 4.29 H. Soooo, sometime between 2/10 and now she had EBV, but not within the past 8 weeks which I'm thinking likely means not the cause of her liver woes? Does anybody think she could have EBV IgG from the IVIG because otherwise my girl is not only asymptomatic of strep, but EBV too. White Blood Cells: This is probably the part that I understand the least, thus concerned about the most. I'm going to list past measurements, current and range. White blood cell count: Dec 09= 6.9, Nov 2010=6.2, June 2011=3.5, Range=4.5-13.5 Absolute Neutrophils: Dec 09=2519, Nov 2010=1538, June 2011=931 Range=1500-8000 So, her white blood cells that are responsible for fighting bacterial infections are depressed. This too can happen from a virus or be part of an autoimmune disorder. Am I the only one who feels the answers are becoming way too predictable? I received these results in the mail, so I haven't gone over them with Dr. B., thus my confusion and anxiety runs wild. We see him a week from Thursday unless I get to speak with someone in his office prior to that. Does anybody see the big picture with all of this? Jill

Well, this is more of an SLP thing than a pandas thing.... I remember my then 3yo sitting behind me in our minivan. All of a sudden, she catches my eye in the rear view mirror as she starts flapping her hand rapidly back and forth as she rocked forward. WHAT are you doing?!?! I start to scream. Nothing, mommy. I'm just playing with the shadows from the sun on the back of your seat. She learned young; no flapping allowed.

Btw, both of my girls had the Plantar warts when my older was in 3rd and younger in K. It took 18 months for them to go away, but the girls hardly complained about them. This was before I knew about pandas and the whole immune dysfunction thing. Idk, I think our kids pick up more of this virus stuff than others or it last longer. I never had any warts or rashes or molluscum.

It's very interesting....she got them on a cruise ship last Aug. But first she had this rash on the top of her thighs. I freaked and thought it was that scarlatina rash so many here have posted about. The thigh rash went away and the molluscum appearred. Looking at it today, it's the same darn rash only this time it's on the back of her thighs, not the front. I'm not a big coincidence gal. I tried searching rashes with molluscum and I found one doc who said kids can get a day fever and brief eczema rash as the virus dies and then it's over. So, I'm hoping that is what is going on. It definitely looks different from the molluscum bumps, they are more blister or mini-wart like. I would do the Zymaderm again, but if any open up, you have to get the white core out- that's where the virus lives.

I really find the viruses to be very scary as they can last years. We've been battling molluscum in my dd7 since August. Went to dermatologist who wouldn't treat the ones between her bum cheeks. I finally bought this Zymaderm and was vigilant with it. They were all gone, flat, but skin still discolored from where they were after 4 weeks of treating them starting in the beginning of May. Then, 3 days ago, after days of unbearable heat here in the Northeast, she has some kind of bumps ALL OVER the backs of both thighs. Idk if it is molluscum, but if it is, I'm so discouraged.

It's a prescription, Dr B could write it if ur seeing him soon