Kiera

Problem is there's NO PROTOCOL for anything PANDAS! Even the few experts don't all agree on exact treatment, to use steroids or not, to pull tonsils or not, frequency of ivig etc, each is learning and accumulating info as they go. Hopefully protocols will be written someday on the info gleaned from treating our kids now!!

Very sorry to hear of this wasted trip! I would however continue to persue it. Call Dr L's office again, explain what happened so they know this ENT will not comply, make an appointment with the 1st ENT and get on cancellation list. Check with Dr L to make sure this one will do it!! At least you know the way now Also, my ds's tonsils looked completely normal with only one ever documented strep infection, however tonsils were scarred and difficult to remove due to chronic infection and cultured pos for pseudomonas (adenoids also). So you never know. Be sure to increase antibiotic pre and post T & A, ask surgeon to give iv antibiotics intra-op and ask to culture Ts and As (not routinely done). My ENT was wonderful and obliged with all my requests and no-one was more surprised with the cultures than he!!

Yes, neg myco p IgG and IgM. Definitely a cough tic in my ds's case as it gets worse at times like right after school when a lot of kids release all that tension and explode at home.

Just wondering have you considered the cough might be a tic? My son has a cough tic that comes and goes with every pandas flare. He's been in a flare now for the last year so we just did ivig. The cough (tic) too has been there all year. Myco p neg.

Welcome and sorry you find yourself here! Just wondering after reading the list of your son's infections if you've ever taken him to an ENT Dr? My ds's brain MRI (ordered by local pandas dr who's neurologist) revealed a completely occluded maxillary sinus, which we later had drained during T & A surgery and cultured positive. This is probably an avenue to explore.

My ds is borderline underweight and the reasons I believe are 1) Poor appitite - eats a few bites then not hungry anymore, the anxiety of pandas can cause poor appitite 2) Sensory - in flares his sensory issues go off the wall including smells, taste, texture etc so food choices become more picky too, even goes off foods he normally likes I know some pandas kids poor appitite revolves around an OCD fear of choking, fear of vomiting etc, don't think this is my ds My ds has had many GI tests done, all normal. A short 5 wk course of periactin made him gain 10lbs in the 5 wks, and eliminated slow motility and slow gastric emptying as a cause. I just think it's another pandas symptom and am hoping it will improve with the ivig we just did!

My ds is 9 and has "issues" (ie pandas symptoms) since little. Dr K believes pandas actually starts somewhere between 18 & 36mts but just exacerbates for some reason between 5 - 7yrs (most frequent). However, I believe it's possible even earlier than that. My ds was a great infant but at some point between 6 & 12mts I believe, in retrospect of course, pandas symptoms were beginning to show. Examples, always wanting to be held, screamed when put in high chair (SEPARATION ANXIETY) very acute hearing, would turn head even with faint dog bark in the distance (SENSORY PROCESSING DISORDER), did not like music (SENSORY) screamed when taken out of the bath (TRANSITIONS DIFFICULT, MAYBE OCD) frequent crying/irritible/meltdowns (RAGES/EMOTIONAL LABILITY) etc. Of course all age appropriate to some extent and that's why Dr K they're not very good yet at detecting pandas in very young children. Well my ds went on to collect all the labels over the years - anxiety, sensory, ADD, tourettes, all not disorders in and of themselves but symptoms of pandas. Pandas didn't come to light until his 1st recognised strep infection at age 7 and all the above got worse! If I were you I'd have your baby assessed by a pandas expert, maybe run some titers and immune function tests, just to be on the safe side and ask about what specific signs to be on the look out for as pandas is frequent in siblings.

My ds reacts to being around strep, even though he tests neg on rapid (I think because he's on antibiotics). Sounds like your ds has pandas in which case he needs a longer dose of antibiotic, at least a month. I would consult one of the few pandas specialists in the country or get the list of local Drs in your area from one of the pandas websites and don't bother trying to convince local ped if they're not knowledgable.

You know we really need to get those bumper stickers going again I think it was a fundraiser for pandasnetwork.org a while back. Also the "got strep?" postcards - does anyone know are these cards available anymore??

Extremely frustrating! And I used to live in that area!! I don't know what it's going to take to convince the medical masses of pandas existence. What'll they say when the IVIG trial is released?? I do think however that the pandas genie is out of the bottle and due to all the websites in the last two years, parents are learning about it faster. I asked a new person to our support group recently how she realized it was pandas? She did a quick on-line search of "behavior changes after strep" and voila! Her ds had a strep infection just last month and she thought she was late in treating if this was pandas! I had to inform her that many parents spend years on the wrong path (in my case 9) before realizing it's pandas. So the point being progress is being made and pandas is not going to go away!

Well the testing is indeed accurate, it does measure the actual strep antibodies in the blood. But the damage is being caused by antineuronal antibodies, that's what the cunningham test looks for. The strep titers are just giving you proof of a recent strep infection (which you already know from pos rapid) I would still encourage you to do it (if it's not too traumatic for your kid)as doing serial titers will let you know that the strep infection itself has cleared. If they don't return to normal then then there may still be strep hiding out somewhere else like sinuses etc. I know it's confusing, but even though the strep infection may clear, the autoimmune reaction may continue until stronger immune modulating methods are used eg steroids, ivig etc. or even long term strong antibiotics. Hope I didn't confuse you more

[i have a question....not sure I want the answer......Does Dr. L do PEX on all her kids after she does IVIG???? She said PEX to me today and I just let it wash over me. I still have to face tonsillectomy and then IVIG with my son. TO think PEX yet......well, I was not ready to even think about that today. ] Doesn't make sense to do pex AFTER ivig as you'll only be washing out all the new antibodies you just infused with ivig (and paid so much for!). I have read about getting ivig after pex to give the body back some antibodies to fight with since pex removed them all. Not sure how common this is though. More than likely she mentioned it in relation to insurance cov though. my cigna policy for example will pay for the more expensive pex for pandas but not ivig. We chose ivig and paid OOP and am now appealing to get re-embursed. Another possibility is in case the ivig doesn't work, maybe pex could be tried? I would just call her office to clarify.

I would highly expect different admits for each. Did Dr L want procedures done in any particular order?

I wonder what the rationale is for one working better than the other? I've read that pex seems to work better for older kids and kid's whose primary symptoms are tics. Anyone else have opinions or experience with this?

1tiredmama, I am so thrilled for you albeit 17 yrs too late! There is hope for your son and hopefully an end to your nightmare! I too have been on a journey like yours, my ds 9 has just had his 1st ivig after 9yrs of various labels. Poor kid hasn't felt good a day in his life! When he's in a better place I'm going to return to everyone of his many Drs not to berate them, but to educate them so that they have an open mind with the next kid that comes through their door or puzzling kid that doesn't fit in any box. I've set up at support group in our area with 2 other moms to be there for others as others have helped me. It's only through the power of us parents spreading the word, that hopefully will make pandas awareness as common as an ear infection! Take care and keep us posted on your son's progress!

Well because they're attached to a dialysis like machine that actually does the washing out of the antibodies and need a specialized nurse for that (probably dialysis nurse). The blood comes out of the body, runs through the machine and then back into the body, hence the need for the central line. Also need central line insertion equipment to put in line and this is readily available in the ICUs and frequently done there (I work in ICU, only adult though) Other reasons, probably just to monitor vital signs more closely during the procedure, floor nurses have many more patients and don't have enough time to spend with one patient.

Oh and one more thing. I know each kid is different but with my ds, when his strep titers finally came down to WNL after 1 1/2 yrs his symptoms were at their worst! So for him, there was no correlation between symptoms and titers. I think if titers are high, it just gives extra evidence to doubting Drs that an infectious process is going on, but unfortunately if titers are low, same Drs can use the fact to blow off pandas diagnosis!

Maybe you're confusing pex with ivig. Yes pex requires a hospital stay, usually ICU I believe, with central line and pex treatment either 3 times /wk or daily for 5 days. It is invasive and expensive. IVIG on the other hand is done out-patient, peripheral IV, HD is 1.5g/kg over 2days, usually 5-6hrs/day.

When it comes to strep titers, the trend is what's important more so than the actual nunber! Explain this to your ped. So I would get the ASO and DNase B titers done now, then recheck in a few months to see that they're returned to normal. ASO rises 2-4wks post infection, DNase B rises 6-8wks post infection. Also be aware, up to 50% of kids don't even mount a response to strep and therefore will not even have elevated titers so this does not rule out Pandas by any means.

Kimflow, you are not crazy for doing tonsillectomy before IVIG. This is the way I did it. To me, if the tonsils are infected (as my ds's were for pseudomonas) then the ivig will not work, as the infection will continually trigger the autoantibodies to attack the brain (even though not strep infection). My friend did it the other way, ivig first, saw big improvement at 8weeks, however slid backwards again until she realized the kid had a sinus infection, did surgery to clean out sinus and T & A which were also infected with pseudomanas and then kid returned to 100% and remains there now since Dec! So enjoy your vacation!!

Thanks for all the replies! I think if it doesn't settle down I'll start with the H2 blocker and see it that helps. (he's already on zyrtec and steroid cream for the patches).

I agree with all that P mom said about the titers and the actual health implications. However, I do believe it has a practical significance, if indeed the levels fall below the lab suggested levels of protection, then it gives the Dr more ammo to get IVIG covered, if it's put together with maybe some other abnormal labs then specific immune def. or immune dysfunction codes can be used. Just another way around "policy does not cover IVIG for Pandas".

My ds's trigger is strep, however he hasn't had a pos culture since initial flare up but reacts to being around it. Finally had "normal looking" Ts and As removed this year purly for pandas symptoms and yes, they were scarred from chronic infection and cultured pos for pseudomonas, both T and A. Strep titers had actually normalized by the time t and a was done! So the lesson is you never know what's in there until you pull them! Does it say on your s. pneumonae lab sheet at the end the protected range. Mine says need to be above 2.0, in which case your son would have failed all but 2 ??

Anyone have hives or eczema post IVIG? My ds normally gets a few eczema patches and the odd hive here and there, no big deal, but we are 3wks post his first IVIG and the eczema is all over, tiny little patches and a hive popping up daily that itches and drives him crazy. I'm thinking it's gotta be related to the IVIG? Anyone else experience this?? Thanks.

Go to pandasfoundation.org, click on providers to find a local pandas Dr. Also pandasnetwork.org has a smaller list of providers and the few national experts are highlighted in red! Ask your local ped to run strep titers (ASO and DNAse , Epstein Barr virus, mycoplasma IgG and IgM to get started. And neg throat culture does not mean stop the antibiotic, the autoimmune reaction is under way and that's what's causing the attack on the brain right now. Need long term high dose antibiotic, helps with immunomodulating and anti-inflammatory effects. Ibuprofen helps also. Possibly see ENT, to get the ball rolling if you suspect sinus problems or allergies as this is oftentimes a harborer of strep or other infection. Do not take no for an answer on antibiotics, keep searching till you find a knowledgable pandas Dr. Good luck.