JAG10

I remember when you first posted about seeing Elia on this board, there was no shortage of members posting of her refusal to help their children. Prior to this post, she has only offered short course abx or PEX for very new onset, so IVIG is new, hopefully progress. What may be difficult to appreciate from outside this area is that when you live in the backyard of a "leading children's hospital" and the policy stated to area pediatricians is "do nothing" for PANDAS outside protocol for typical OCD ect., that pretty much puts the kabash on getting any local help. Perhaps what you had going for you more than anything was that you were not local, who knows! eljomom- I would think all treatment options are most effective the more recent the onset. Does IVIG work if not recent onset? Absolutely!!!! My dd is 11 with an initial onset 8 years ago and chronic/Wham episode in 2007. We didn't know what it was until 12/09, treatment beginning in 2/2010. At that time she was on 3 psych meds for misdiagnosed conditions, picking her skin until it ulcerated and barely, barely able to function well enough to attend school. She is sooo much better now and 90-95% recovered. Does 8 years of this take its toll? Do I wish my dd felt more confident minus the emotional and physical scars? Of course. But don't you let anyone, ANYONE tell you or imply it is too late for recovery because 8 months or 8 years has gone by since initial onset! That is the medical community's failure, not yours as a parent. Parents like you and I absolutely refuse to let our children be tossed aside as collateral damage because our local docs prefer to play it safe and avoid "hot issues." You have to see the emphasis on early detection, "classic presentation" and initial onset for what it is.... talking points. Many of the PANDAS organizations are working diligently to acquire credibility, they are only a few years old and therefore, much of the PANDAS press is focused on early detection, initial onset, recent onset, and so on. God bless them and more power to them! But there is a generation of kids,maybe two, who developed this illness before.....before this board was established, before the Saving Sammy book, before Lauren's sneezing, before the word was getting out as well as it is now. And there are doctors for those kids, brave physicians who value every child's wellness even when they don't fit neatly into the checklist or arrive on schedule.

Wow! If Elia is offering IVIG, that is progress and good news for the children of the Philadelphia metro area, at least those with recent onset. I wonder if CHOP will offer ivig until completely well like Dr. B. He is committed to complete wellness.

My dd11 is the one who has had multiple ivigs, whose PANDAS symptoms were devastating/life altering, ect; my dd8 has presented with milder symptoms managed with abx, not at a level where we would consider ivig for her. When measured in 3/2010, dd8's total IgG was twice that of her more severely symptomatic sister. Something like 1560 vs 720. Neither was caught early and even if I compare the two girls at the same age prior to dx, my older one has always been significantly more severe; both asymptomatic, no positive cultures, just high titers. I wonder too, if that is another "downside" of T & A; not less likely to GET strep, but less likely to be symptomatic in the regular way (not behaviorally)????? Any chicken/egg comments about this? Are they mild immune def. after PANDAS has been diagnosed, so can't determine which happened first? Any data on non-PANDAS siblings as base line that then turn PANDAS and then have a drop in immune system measurements? Guess that would be a longshot in terms of data, huh?

Hmmm. She did complain of a headache yesterday, but I attributed that to the heat (+97). THis morning, she complained of left ear pain, especially when she pulled on the lobe, which sounds like swimmer's ear to me. The girls have an appt with their new ped this friday, but I can't have her wait that long, so I'm going to take her to one of those Take Care clinics this afternoon. I guess it is a skin infection that the oral abx doesn't fight?

Any chicken/egg comments about this? Are they mild immune def. after PANDAS has been diagnosed, so can't determine which happened first? Any data on non-PANDAS siblings as base line that then turn PANDAS and then have a drop in immune system measurements? Guess that would be a longshot in terms of data, huh?

Not really PANDAS related, but....... should you be able to get swimmer's ear while taking daily zith 250mg? It never fails, the weekend after the in-laws visit, i.e. lots of toddlers in the pool, someone in my family get swimmer's ear. DH promised it was well clorinated, but my dd8 is complaining of ear pain.

Hmmm, well IDK. I can share this experience of my dd11 when she was only 7 and in second grade (prior to knowing all this bleep was related to PANDAS) She attends Catholic school, they stand in the morning for prayers and are told not to lean on their chairs. It was the beginning of October and very hot, in the 90's. Two mornings in a row, she dropped to the floor, but not passed out. After the second time, we took her first to the ped who said her BP was unusually low. Next stop was the neurologist, normal EEG and neuro exam. Huh? Well, then it turned into a behavior where a few days later her daddy gave her an answer she didn't like and she fell to the floor and "lost her balance." Well, at 7, she wasn't a very good actress, it was obvious what began as genuine syncope morphed into behavioral which we quickly put the kabash on! IDK what kind of medications your child is currently taking? That was also suspected at the time, although there were no changes recent to her episodes. I think it was a combination of heat, dehydration and a little body on topof being a sick kid underneath it all. It never happened again and that was 4 years ago. I'm sorry you are feeling so discouraged! I hope things turn around soon.

Isn't the CYBOCS normed for ages 6-14? What do we do with kids with earlier onset? The BASC 2 could be an option as it begins age 2 and covers a broader range of behaviors listed as associated with PANDAS, but I don't think anyone has used it in this kind of capacity. I recall Dr K mentioning to me last summer he and Swedo were working on specific criteria for the under 5 crowd. This conversation was related to the white paper, but perhaps separate from the white paper itself. Perhaps we should start calling it the invisible paper instead.

Good luck! I betcha you will be pleased.

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Is there any other way to notify members their box is full?

My girls do better with pills than liquids. I just hide it in a spoonful of something they like, all the way buried so they don't even taste the coating. I usually use applesauce, but I've also used whipped cream and pudding. You could try saying to him something like....the first spoonful has your pill, just swallow it right away, don't go feeling for the pill with your tongue; that defeats the purpose. After you swallow the pill, you can have the rest of this...(pudding, whatever) and taste that more. If you ever get to a point where you try prednisone pills, I put those in a small amount of peanut butter as their taste is so strong and bitter and have something to drink ready afterwards. However, the pill form of zith does not taste bitter like prednisone. Still, you are trying to avoid the "gag factor." Unfortunately, my dd11 has been taking pills for many years, so she's pretty good at it. Good luck and welcome, Jill

I think the stimulant vs. non stimulant is really individualized and they noted strengths and limitations of each. They said good old ritilin in very small doses would be OK for us (though I don't know if they would recommend it if my son had heavy-duty tics)... and the advantage is that you can see the effects quickly and the effects wear off relatively quickly if you don't like it. They said strattera would be good if the problems seem to be more motivational than on-task attention in class. They said SSRIs could be used for anxiety but, again, they really cautioned about very low doses and very good monitoring for negative effects. Dr. M said pharmacists call her sometimes to double-check the dosages because they are so low and they laugh at her! I would have to agree with her based on our experience. Even Straterra, which is a weight-based dose, my dd saw a positive impact by 25mg and within a few days, not several weeks. I think that is another way our kids differ, or at least mine does; she sees impact good or bad within a couple days for all types of psych meds that were supposed to have to "build up" in the body for several weeks.

Sounds like a fantastic appointment! Does the team like the non-stimulant attention meds that also have anti-anxiety properties like Straterra or Intuniv? I'm so happy for you!!!

An immunologist may look at total IgG, IgA, Ig subclasses, C3D complexes, celiacs and more. If you were to ever consider Ivig, your boy would get "passive immunity" for some of the viruses he has yet been exposed to such as EBV and some hepatitis, so he would no longer be IgG negative for those viruses. These tests reflect more the health of his immune system rather than specific viruses he has been exposed to in the past.

I'm not sure about the HHV6, sorry. I just wanted to mention something about the strep antigen titers; some children with pandas have a hyper-immune system and some have a hypo-immune response. Ironically, either can show immune deficiencies. Not sure about the science behind that, but my girls have run very high titers in the past, yet were low Total and sub-class specific IgG and IgA, so IVIG has really helped her a lot. Has your DS had an immune panel work-up?

Full of tears here. I just know your son is going to LOVE playing in the ocean. One of my favorite things to do of all time is to watch my girls play in the surf. The pure joy on their faces is priceless. I hope you thoroughly enjoy the trip as much as he will.

Hi MPM, A couple quick things to mention... You want to make sure his liver enzymes are periodically checked especially using full strength Zith with ibuprofen at times. There are even pandas docs who are recommending frequent use of ibuprofen, but you've got to monitor the liver, it can rocket out of control very, very quickly. The other thing I wanted to mention; many, many of us here are teachers or therapists- people who work daily with high volumes of children AND all the germs they bring with them. Just something to keep in mind; you could very well have periodic, active strep infections yourself and have absolutely no symptoms and no idea you are "sick." I have to run now, but wanted to see if you have had a chance to check out Dr Kovacevic's web page? He goes into detail about pandas and particularly high functioning ASD. Many here personally suspect/believe most if not all neuro-atypical symptoms are infectious based rather than a co-morbid separate condition, but you should check it out if you haven't already. Jill

Kim, This is fabulous and encouraging for so many. I always feel an extra special tingle when one of our older kids is making substantial headway. Is there another IVIG scheduled? My girl is having another the end of Aug which really gives me some peace. Last year, after her first ivig in May, she was bombarded the end of Aug through mid Oct with one immune challenge after another. If you look back over the history of this forum, we see "exposure explosion" come in waves usually 4-6 weeks around winter changing to spring & 4-6 weeks summer changing to fall. So, I feel at ease she will have a fresh infusion to help armor her against that battle period. Best wishes continuing to trend forward

Hi Linda, I can't say we are in the exact same boat. My older girl was sick with behaviors not typical illness most her life before we realized the etiology of the behaviors was infection based. Asymptomatic to strep, her titers were sky-high (we'll never know how high, just over the tilt measure) when they were finally tested 12/09. Within 6 months of that, she had her first ivig that rendered her 75%. This February we started multiple ivig therapy with Dr B to get all the way better and pray this works to change the memory of those t & b cells. I think you know a lot of the advice regarding minimizing side effects. My dd, now 11 and entering 6th grade, gets some nausea and even some vomiting occasionally weeks away from the actual infusion, that might be a little less common. But my advice to you is for your emotional well being. The inconsistency, saw-tooth that comes with the infusions is a necessary evil that indicates you must continue with the ivig therapy. When there is no back-sliding with each infusion OR no progress that only lasts X number of weeks, when everything stays consistent and neurotypical, that is when he is done. That is when the beast is dead. You need someone you can count on emotionally and that may be a cyber friend, but someone who can care, understand the emotional vomiting you may need to do periodically to get it out and not be judged for it in any way whatsoever. I have a couple of friends on this forum like that who we text, email, PM, ect. One friend I text several times a week, several times a day when things are rough; we call sometimes and have travelled great distances to see live twice. I count on her and she me for emotional support in a way only another parent on this crazy journey can understand. We both love our husbands dearly and know they are doing the best they to manage this journey as well. We have both grown to loveceach others kids dearly. A great friend who understands this madness of inconsistency attacking your heart-strings is more valuable than even the most skilled therapist and free. My opinion is it needs to be another parent of a pandas child, your kids don't need to be exactly the same either, but you have to live this life to believe it/understand it...isn't that true?? The insurance issue is so frustrating! We have a BCBS HMO and have been covered to where each two day infusion costs about $325 after meeting a $500 deductible. Dr B's office is so good with insurance, we paid $12K out of pocket for first one with Dr K. I pray they will persevere on your son's behalf and soon. You would think after you, personally, come to terms with the $ issue, and the medical piece of the decision, that should be enough blood from the proverbial stone??? Probably not. Prepare for the emotional rollercoaster and hopefully you will be pleasantly surprised. Sending prayers of health and good fortune your way. Jill

Dan- I don't know if this is true or just perception, but it seems like on this board we have a whole bunch of kids who fall into one of two categories; ones who get sick, swab/culture positive for strep, but never get a titer rise. The second group are asymptomatic for strep (aside from behaviorally), may never culture/swab positive and the only evidence that strep is related to the behavioral changes is the rise in ASO/anti-DNAseB titers. My dd11 was in the second group thus she went misdiagnosed and mistreated for many, many years. Her little sister has benefitted from her battles. So though dd8 was also asymptomatic for strep, when behaviors surfaced, we knew to run titers and whalla, hers too were sky high. Fortunately, by identifying her earlier in the game, so far she has been managed with abx. I'm sure there are some kids on here who have clear strep, swab positive and get the ASO/DNAseB titer rise, but it sure seems they are in the pandas minority. Jill

There is such a diverse buffet of symptoms...it really looks so different child to child. For my dd, the overt OCD/tic symptoms were the first to disappear and barely resurfaced with re-exposure. Her more significant symptoms were in the cognitive realm; attending, math regression, dysgraphia, behavioral regression, word retrieval. You may have heard the term "flipping back the pages?" So for each child they may have a symptom set that is their main nemesis (for some it is primarily motoric symptoms, some cognitive, ect) and this may have been one of the first symptoms to surface, but as time marches on, other symptoms pile-on the child. You may see these symptoms resurface and then disappear in reverse order as is you were flipping the pages of your child's story from present back in time. Prior to ivig, my dd was on a cocktail of 3 different psych meds in many different combinations, none of which provided lasting or adequate symptom relief. SInce that first ivig, she has been off all psych meds. She obtained 75% symptom relief with one ivig. We have since pursued multiple ivigs in hopes to get her the rest of the way there and shut down her auto-immune faucet. She is now estimated 90% with some mild lingering memory and anxiety that still ebs and flows toward remission-we are looking for that to stop and for her to be the girl God intended for her to be; in control of her mind and her destiny. The headache and nausea are a typical side effect of ivig. Jill

Hi- welcome & sorry! Were there any side effects from ivig? Any headache or nausea? Any change in activity/hyper level? My dd was 10 at the time of her first ivig and sick for a very long time prior. Some changes were noticed right away, other symptoms would come and go for a period of 10-12 weeks. You might get a better idea from someone with a child of similar age and new onset. Jill

Most of us have experienced the vast money pit of this disease. There is NO shortage of MDs, PhDs, therapists, tutors and others who will perform diagnostics on your child that qualify them legitimately for their service. The symptoms are so broad and can change from episode to episode, you will quickly run out of time and cash pursuing every possible service provider. I am a therapist, an SLP, and I spent 3 years doing this with my dd11 before a doc turned me onto PANDAS. Since then, I have been like a laser focused on the underlying medical condition; my dd has been off all psych meds and she is 90% plus. I do most of the tutoring on my own and honestly, as she heals, she needs it less and less. You need to spend your dollars very wisely. There is a thread on treatment within economic constraints which has great info regardless of your financial means. I think Vickie authored it...do you remember the title??? MIL is likely very well meaning, but you cannot afford to be polite to make her happy on this one. She doesn't know what she doesn't know, right? You can't argue with people like that. You can't afford it emotionally, financially or with regard to time. Not an option. You could email her a flood of research to either a)keep her busy for a very long time &/or b~ shut her up. I love you, mom....but not an option, of course you understand...I knew you would. END