JAG10

Some of you have experience with your children restricting their food intake and we had this with our dd10 prior to IVIG. Now, we may be having the opposite issue....Since IVIG 5/10, our dd10 has gained weight....18.5lbs. Now, she does have a cast on her wrist, which seems pretty heavy, but that is still probably 15lbs? In 4 months? Yes, she's had a growth spurt too; 3 inches (and her shoe size flew to an 8.5!!!!) So, she's 5'1" and about 100lbs, not fat but more than she was before. Is this a similar beast as eating restriction? When she would restrict her intake it would be because she found some foods like meats "disgusting" and make her gag from disgust which I think is different that fear of choking. Now....she'll eat a wide variety of foods, too fast and too much. I've been giving her 5-HTP, 100 mg in morning and 100mg at night and that seems to have tamed her appetite some. What do you think? A concern? I must say since the May IVIG, her overt OCD issues have been well-controlled and not causing her problems. Her lingering symptoms are cognitive processing speed/learning/organizational in nature only and a little immaturity, but recently her handwriting has been beautiful.

Hey Kelly! Well, my dd10 had spacers and a palate expander....which for her was a very positive experience because it replaced a harmful compulsion (scratching bug bites and picking at her skin) with a harmless compulsion which was taking her spacers in and out, in and out, in and out....but that was only short-lived, a couple weeks. Thank goodness she doesn't do that anymore!!!! This is the first fall since she was 6 y.o. that we haven't been frantically trying to get her to leave bug bites alone....in fact since her IVIG the bugs don't seem to find her quite so delicious or her body is not producing such a powerful histaminic response to their nibbles. I hope the braces are an unremarkable event for your family! Jill

Interesting Vickie...dd10 has been having major acne right on her forehead only (maybe the pandas are trying to escape her brain, haha) ever since she's been on abx, but it's been 6 months now. Any idea when I should expect it to get better? Thank Goodness she doesn't have the skin picking issue whatsoever anymore or that would be a major problem!!!! It's really bad at her hairline and I keep her hair really clean too.

Pixiesmommy, You really do have to see/live this to believe it, don't you? I read your blog and viewed the pictures; a lot of her story...the psych drugs, the difficulty getting doctors to look at her in totality and not compartmentalize her, and certainly the pictures of the dream team from OakBrook, IL..... it's our similar-freaky-you just can't believe it story too, only 4 months out instead of a year. I met with mydd10's teachers last week and went through the whole (abridged) journey with them and it is a bizarre experience explaining it all and having folks look at you in amazement, and most of them had already heard some of it before. Her school has been very supportive and most of her lingering symptoms revolve around cognitive/learning/work completion issues. Her handwriting has resolved, but her anxiety around the modality of writing remains. She says to me "Those blank, empty lines haunt me, mom." I can relate to your above comments about wanting to get "all the way there." Even though the percentages we all throw around arbitrary, we know if our kids just aren't symptom free yet. At 16-17 weeks, I informally judge my girl to be 75-80%. At this point in our journey, time and patience are called for. The slow fade of symptoms is difficult to appreciate when you get to this point....like watching hair grow....the growth can no longer be appreciated on a daily or weekly basis. We have to ask ourselves "what can she do now she could not do 2 months ago?" Before we'll know it, the short hair will be long enough to put in a ponytail...with less and less bobby-pins needed to hold it in place. And then, at the 9-12 month mark (barring any major setbacks) we'll have to look at what symptoms remain and what are we willing to do about it.

Based on what Buster has written about carriers, it's Dan. The carrier swabs positive, but doesn't develop the infection, thus no elevated titers.

Folks..... doesn't this sibling conversation fly in the face of "sudden onset" as a determining factor??? I mean talk about not getting hooked on a number...does it only have to be sudden for your first kid??? but if you're new to this party and read over and over again about "sudden onset" being the differentiating factor, yet you know your child's been simmering and brewing and something isn't right... you could conclude this isn't sudden at all...is it? I sincerely believe this leads some concerned parents to dismiss PANDAS/PITAND erroneously. IMHO, the focus should be EARLY onset, not sudden. How many times have we heard the stories...when they first come out the child was completely normal to nuts overnight.....then as time goes on the parents share there were concerns before, things were far from "normal." Yes, most of us can identify a point in time when things went from "concerned" to FUBAR!!!!! I understand the difference on that clinical rating scale defining sudden, I get it. Just seems like that term is too open to interpretation and it's always been the thorn in my pandas side..... or maybe its my guilt that it took me her entire childhood to figure it out. Maybe I feel like if I can more folks to focus on age of onset rather than its abruptness, that will be my redemption.......

I agree.... if you are looking for comprehensive treatment of PANDAS, at this point, CHOP will be a waste of your time. Dr. K described things changing at CHOP as "trying to turn an ocean liner.... it will happen, but it will take a loooong time."

What is the rationale behind removing the tonsils, but leaving the adenoids in???

I think we need to give it another 5 months.... if from now til the nine month mark she just holds steady... it would be worth discussing. She will be 11 in December and is on the cusp of puberty. Since IVIG 16 weeks ago, she has grown 3 inches and gained 12lbs.... so that is a lot going on in one pre-teen body, don't you think? I'm also curious to find out what was lurking in little sis's T and A's. It might make the decision easier if the collective "we" make some headway with insurance companies in the interim...... I am not so naive as to think we are out of the woods, friends. She had her IVIG at an opportune time, end of May, we kept her out the rest of the school year and got the bulk of that critical first 12 week post IVIG period behind us exposure free until the very end. So it appears she handled the first exposure well, but there will be many more to come in the next 8 months. All we can do is teach her to practice universal precautions as faithfully as possible and pray her exposures are minimal.

i'm sorry to always ask these questions...so many kids to keep straight.... is your daughter symptom free currently? how long after ivig did it take to get remission? and sorry to make you repeat...it's been 5 months since ivig? thanks jag No problem! Those are dates above, so her blood work for myco-p was first measured in feb/2010, then IVIG in May 2010, then retested July 2010. It's been about 16 weeks since her IVIG. No, I would not say she is symptom free, I would place her in that 75-80% category with mainly school/focusing/delayed cognitive processing issues remaining (albeit reduced though) and mild behavioral regression/immaturity;but the OCD seems IN CHECK!!! She had a re-exposure 4 weeks ago that did cause a minor setback of two weeks total, but we smacked it down with full strength abx for 14 days. I would say she experienced some volatility through week 11 and aside from the re-exposure, has been fairly steady since then. Before IVIG, I could have NEVER sent her to school "med-free", not that they helped her that much, but w/o psych meds she was even more off the wall than she was with them. This is the first time in 4 1/2 years she is attending school free of either a stimulant, anti-depressant or mood stabilizer; just Augmentin and pure grade Omega 3s. She used to take Straterra and I wonder if that would help her while her brain continues to heal, but for now we are holding steady without it to see if she can handle a 5th grade workload. She is the one whose little sis had her tonsils out last friday to help keep her healthy; of course, we're not telling dd7 that little nugget of info

Our dd10's levels were as follows: IGG 2/10: 1.64 then IVIG 5/10 then retested 7/10:3.02 IGM 2/10: 672 then IVIG 5/10 then retested 7/10: 764 Her only known Myco-p infection was in 3/2007!!!! So, YEARS to come down seems accurate to me and hers elevated from the donor immunoglobulin. Are these measurements elevated in the population at large right now? Certainly seems like a possibility. During this time frame, there was no identifiable illness or escalation of behavioral symptoms, no raging that is commonly reported with elevated myco-p. During this time frame she took 1 month zith, 2.5 months of full strength biaxin and full strength Augmentin after the IVIG. That is 5 months of full strength abx, no elevation of physical or behavioral symptoms and her measured IGG and IGM values for myco-p increased, IGG almost doubled.

For those whose children have had IVIG, the procedure can apparently make IgG and IgM myco-p levels rise without necessarily being re-infected in the interim between measurements. This is not always the case, but a possibility.

Uh, no..not CHOP. This ENT is with Temple, but did the deed at Holy Redeemer. He put her on 750mg Amox. and said it could be adjusted if something unexpected shows up from pathology.... I'm not sure what that means. Whatever they send me, I'm sending to Dr. K to make sure she's had the right abx.... and I don't say that to sound like his groupie, it's just that he's been so spot-on-right with my girls when no other doctor has been.. that I'd be a fool not to seek his input as long as he's willing to keep sharing it. Melinda-I'm so pleased that Dr. B has been able to help your daughter. I have a friend at work whose son is suspected PANDAS and they were referred to CHOP. Let's pray that hospital gets there act together sooner rather than later!!! so your daughter was on amox for procedure??? The ENT didn't mention her being on amox during, but she was given a dose in the hospital and the script was for 10 days following. Remember, going into the procedure, this doc thought he was basically taking out "healthy" T & A to help my other pandas dd, but then once he got in there, he saw what a mess they were...

Uh, no..not CHOP. This ENT is with Temple, but did the deed at Holy Redeemer. He put her on 750mg Amox. and said it could be adjusted if something unexpected shows up from pathology.... I'm not sure what that means. Whatever they send me, I'm sending to Dr. K to make sure she's had the right abx.... and I don't say that to sound like his groupie, it's just that he's been so spot-on-right with my girls when no other doctor has been.. that I'd be a fool not to seek his input as long as he's willing to keep sharing it. Melinda-I'm so pleased that Dr. B has been able to help your daughter. I have a friend at work whose son is suspected PANDAS and they were referred to CHOP. Let's pray that hospital gets there act together sooner rather than later!!!

Hi Fixit, My non-pandas dd7 had her T&A this past Friday. So far she is doing great. I had taken her to see Dr. K during my dd10's 9 week IVIG follow-up appt, we all drove from Phila. to Chicago (oiye), but I was concerned dd7 may have mild pandas and wanted him to check her out. He thought she was ok clinically, but that her tonsils and adenoids were large and would need to come out eventually. And with trying to keep dd10 infection free, he suggested they come out sooner rather than later. So, I take her to the ENT who did not think her t & a were that large and though he would not recommend it, he respected the expertise of a pandas specialist and would be the technician to remove them. After her surgery, he said they were much larger than he could appreciate in the office and visibly problematic. He sent one to pathology and one to histology; but I think I must have heard him wrong because I thought histology processes the tissue for pathology? Whatever, I'll get a report this week. It will be interesting because my daughters never culture positive for strep, only seriously elevated titers. This part take with a grain of salt, it's only been about 60 hours since she's had them out but...... dd7 is more cooperative, less anxious, quick, quick, quick-processing very quickly with amazing memory and articulation of her thoughts AND she's on pain meds. I didn't expect her to be any different cognitively, she was never bad cognitively at all, but she seems brighter and she's supposed to be doped up. I'll let you know what the pathology report says when I get it. BTW-Removal of large T & A will result in a vocal quality change; the resonance of the oral cavity changes when you remove the large sections of tissue. We keep saying to each other dd7 sounds like Snow White now. Jill

That's a pretty good explanation WD. My dd had a SPECT scan at the Amen Clinic when she was 7, 3.5 years ago. It was determined she had "Ring of Fire" ADHD which basically meant the whole perimeter and cingulate gyrus (i.e. brain gear shift) were overactive. As they explained it, Ring of Fire ADHD is supposed to be very close to bipolar disorder, but she did not have many of the bipolar symptoms, no raging, grandiose behavior, ODD; but did have the silly, goofy, hyper piece, so they dx'd her mood disorder-nos (even more "throwaway" than bipolar!!!) I brought these SPECT scans that measure activity with me to Chicago for our follow-up appt in July. Dr. K explained (in terms I could understand) the signaling is too general and grossly conveyed, not focal enough, so large areas become overactivated resulting in neurological chaos. This is similar to his analogy on the Autism One interview where he discusses the instruments of the orchestra all playing their own tune at their own pace and volume because the conductor cannot communicate with them. All the components are there but without organization, synchronicity and cooperation the "music" is torture rather than a symphony.

Did you take the BP3 and the ultra pure fish oil?? DD cognitive fog is definitely clearing bcs now she's really complaining about taking some many pills! She takes 3 of the Zone pure fish oil, one HTP, florastor, and her abx; so no "multi-vitamin" in the mix. You think adding BP3 would be ok with that mix?

I bought dd10 antibacterial pens to help cut back the germ exposure. I realize germs are everywhere, but just one more thin layer to try to minimize her exposure. If anyone comes across some that are antibacterial AND erasable, please post.... thx!!!!

You can throw all you want at me as long as it's slimy LIME jello Seriously, a sense of humor helps. We all want well, healthy, happy kiddos. The number of variables involved here is overwhelming. What medicinal therapies have you tried and in what order and for what duration and how old and how long were they symptomatic? You tried abx first? ......which ones, in what order, for what duration and at what dose...... oh, and BTW where you exposed to anything old or new in the meantime??? I'm sure I left out about 341 other questions OYIE! LLM-for what it's worth, cognitive fog has been a MAJOR, long lasting symptom (no joint, achy, muscular/tone issues) for my girl which, thus far, the fog has cleared with the first IVIG, but we are 15-16 weeks post which is infancy in this chess game none of us would ever choose to play..

This may sound absolutely ridiculous and ignorant, but I'm going to throw it out there and you can throw jello at me... I've had similar thoughts about the Lyme talk. Respectful consideration, but can all these kids have Lyme..... and in families with multiple siblings?? So, the forensics in my head goes something like this... if you can possibly contract Lyme mother to child, between intimate partners, among siblings... well if that all turns out to be accurate, maybe most or all of us "have or have had" Lyme, but like strep and myco-p, it causes atypical symptoms and major problems in some and others just process and perhaps eliminate it whereby it does not cause such problems. Also, I realize some answers have been given by the laboratories, but IVIG messes with lab results, right? Just going off my uninformed, ignorant (disclaimer) experience, my dd10's myco-p level doubled from 1.6 right before IVIG to just over 3 (the one that measures the "first" exposure and isn't suppose to 'go up') ten weeks post IVIG with no illness or increase in symptoms. What if we're all carrying around some levels of Lyme measurement and the IVIG piles up to make it then detectable?

PANDAS Chicago-Great to hear from you again! And the fantastic news is hope for us all. Did your child have increases in behavioral symptoms when exposed to bacterial or viral infections or regular "sick" symptoms? If so, did you increase to full strength abx when that occurred? Do you feel puberty played any role in yours and Dr. K's comfort level in d/c of abx 2 1/2 years? Did you feel like it took more than a year post IVIG to get to 95%+?? I am curious too about the choice of abx... Thank you so much for your cameo appearances of hope and encouragement!! Jill

Hi Friends and thanks for the well-wishes. I called him last night and his stomach was still a little queasy and he was a little tired, plus he drove 3 1/2 hours home. Cognitively, he sounded articulate and intact. He does remember being confused, the chills, feeling freezing then hot and the vomiting. He said he didn't feel any tingling or numbness, just nausea and fever. I asked him if he remembered the barking or swearing; he said he was clearing his throat to keep from vomiting and I'd swear too if I felt like he did.... perhaps a little sensitive. I worked in a sub-acute stroke unit for 2 years when I first finished grad school. I don't ever remember fever or nausea being associated with TIA or CVA. I suppose it is possible for both to happen simultaneously and resolve together as well, but unlikely. I asked him if he was taking any medications/supplements and he told me he was fine and to mind my own business. Glad my kids can't do that!!!

We made them go in the basement to play for the evening, so they didn't see much; just knew Grandfather's stomach was bothering him. I didn't ask him about strep, but he's always had some intermittent, mild dysfluency. We'll just have to see if I was able to keep the stomach bug at arm's length....

Weird, right? I know what you all are saying about the UTIs. But, I definitely think this was 24hr stomach flu. He's coherent today, in fact he just left to drive back to VA from PA to beat the holiday traffic. He had breakfast, kept it down, took a 45 min morning nap on the couch and off he went. This literally came on in an hours time. We could see him changing right before our eyes. I've heard many of you describing the "sudden onset" in your kids (which I couldn't pinpoint in my own), but that's what this looked like which makes sense for the stomach and fever, but disorientation, vocal tics/barking and swearing???? And yes, I was right behind him all evening disinfecting everywhere he went!!!

My father, 66, came to visit us yesterday and stay the evening. All was well until dinner, he started slurring his words and just not making sense. He had a glass of wine, but that couldn't be responsible for what was happening to him. He went and sat on the couch, had chills, felt nauseous, wasn't talking much. Then he started with vocal tics that sounded like barks, mumbling and even swearing under his breath. He seemed disoriented and somewhat delirious, he had no idea where he was or his way around our house. He was burning up. I took his temp and it was 102.6. I made him take 600 mg Ibuprofen, literally made him because he was not really responding to me, almost like he didn't know who I was. This all went on for another hour until he was finally able to vomit, then he began to become slightly more responsive, fever down to 100.2. He's coherent and oriented this morning, little queasy, but soooo much better than last night! Sounds like a stomach flu, but I found the delirium and Tourette's-like behavior very intriguing. Interestingly, my PANDAS dd10 has had very, very few/mild tic-like behaviors over time; predominantly OCD/cog behaviors. My parents divorced when I was two. I don't ever remember being around my father sick before; he's extremely fit for his age and halfway through the course work to becoming certified as a personal trainer (now that's retirement for you!)