JAG10

Certainly sounds like your bases are covered!!! I'm guessing since you said south, Dr. L is Latimer not Legido, nothing with him huh? We are cruising on the Carnival Dream, they're are like little cities on the water! BTW, got a brief note from Denny's office; they are still working on it. So you think he'll definitely want to increase dd10 even though dd7 is the one sick? If they say wait and see, I just want to have the full strength prescription filled before we leave.

We're driving down the east coast Wednesday & staying at Animal Kingdom until Saturday morning, then we are picking up my mom and sister from Orlando airport and driving to Port Canaveral. We booked this 9 months ago, before Court was even diagnosed! Seems like a lifetime ago...

I just reprimanded them a half hour before dinner about sharing a drink!!!! I hope the peds office doesn't give me grief! I hate getting treated like we are junkies seeking narcotics.

I thought both of our girls were asymptomatic of typical strep throat symptoms. Now, I'm not so sure. Our dd7 has been a lump on the couch all day wanting to watch and veg. We're eating dinner and she says "Ouch" and to dh "remember I told you it hurts in the back of my throat." To which I frantically say "WHAT?!?!?!" Get the flashlight, her huge tonsils and adenoids are flaming red and the adenoids look like there are puss patches. Take her temperature and it is 101.3. I give the whole family the lecture about any throat issues always need to be reported directly to ME!!! Tomorrow, I'm supposed to take both girls to my mom's so she can watch them until Wed. when we leave for a 10 day vacation a few days in Disney World and then a week long cruise. So, I have to get this all straightened out TOMORROW, oiye! Recap: dd10 had IVIG 10.5 weeks ago, is going great! Dr. K said treat all infections aggressively and have dd7's gigantic tonsils and adenoids removed. So, I guess I need to get her into the office first thing tomorrow and even if she rapids negative beg for an abx prescription? What about dd10? Does she need her abx increased from Augmentin 250m?? Or should I just email all this to Dr. K who has examined both girls 2 weeks ago??? BTW, I asked dd7 how she felt and she said fine except the back of her throat yet she's running a temp of 101.3 Perhaps "asymptomatic" is in the perception of the child and what they are willing to complain about..... Any advice? Going away, what do I need to have to take with me? Full strength abx for both girls??? DD10 is doing so awesome, I can't let this get mucked up now!!!

Nope, I got what you said. Yes, the food avoidance/texture issues totally vanished. Not sure if I should be concerned about the carb craving though. She's gained 3 lbs in the 10.5 weeks since IVIG. Still looks like a completely healthy weight. Just eats fast, like she's starving and will search out sweets and snacks, especially when bored...... can't say that apple has rolled far from this tree<_< But is she "obsessed" with food now? I hope not, but I'm watching.... Otherwise, she is doing really, really fantastic. Heirgesell mentioned the Anti-Inflammation Zone by Sears which really peeked my curiosity (for myself as well.) I'm off to go check it out.

Hi, Sounds like things are going as planned. Not sure if I can answer your hyperactivity question since my dd10 was hyper before IVIG, but she began to calm down 2 weeks after IVIG (she is now 10.5 weeks post.) She got the massive headache right on cue, to the exact time Dr. K said it would occur. The headaches came and went for two weeks also and then periodically after that. Exactly 3 weeks post, right after midnight, she experienced a mild fever spike, headache and vomited and woke up fine the next morning, but with a symptom shift like a pendulum that swings back and forth but each time looses its energy. The food issue is interesting. Post IVIG, she is experiencing the opposite; increased appetite and strong carb craving. She was exhibiting some weird food issues prior to treatment, texture avoidance, ect. Not now though. My hunch would be to hold onto the prednisone and not use it now. Jill

If you consider Dr. T's theory of toll-like receptors becoming overloaded after infections "pile up" on the pathways, it may not be a period of time per se , but how many viral and bacterial illnesses the child has been exposed to. For my dd10, she went "chronic" March, 2007 (after 4-5 years of PANDAS) and after myco-p "piled-on" her system. She went untreated (for PANDAS) for about 8 years, yet has responded really well to IVIG to break the "chronic" state and she is informally judged to be 75-80%. As far as cure, I didn't specifically as Dr. K about that word, but what he said to do in our case is watch dd very closely, that OCD is her "sore throat" for strep and should be treated aggressively as should all other infections in the household. If we treat any episodes of OCD symptoms with high dose abx for 14 days, we should be able to prevent the chronic autoimmune process from being set into motion again. This does not sound like "cure" as we have bantered about, but it is treatable, manageable, hopeful, and successful for my girl ............and I'll take it everyday of the week and twice on Sundays!!! That being said, that's what SHE needed. She was THAT bad and couldn't get better by less drastic measures. But coming from a place that was so sad and hopeless to now; we just all feel like we've been kissed by angels! Kelly, as far as donating.... if it is done through registered non-profit organizations, donations can be eligible for employer company matching gifts. We should maximize any parents who have that as an option through their jobs.

Jodie brings up some good points. Where is your child in the recovery process as they enter IVIG? If abx and steroids have already resulted in much of the "flipping", but symptoms persist, you may not see as much flipping from the IVIG. I charted 4 major categories of symptoms during the abx/steroid phase of treatment pre-IVIG. Post IVIG, two of the categories were on one side of the pendulum, two on the other. Every so many days the pendulum would swing to the other two set of symptoms, but each time a swing occurred, the pendulum lost energy and the symptoms lost intensity. Some kiddos are much more dramatic than that, but I would definitely put my dd10 in the slow, fade away camp. Again, Dr. K was spot-on about everything to expect with my daughter, amazingly so like he had a crystal ball.

That sounds about right. You multiply 33 X 1.5, which is 49.5, so 50 over two days is 25 each day. Yes, .75 each day.

This is why you, Tenacity, win my superlative vote for Best Username..... obviously accurate and well deserved.

Well, not to add to your anxiety, but I didn't get the parental suicide period speech I've heard about from Dr. K. He told me my dd10's recovery would be boring, that he wasn't worried and he was right. Certainly, there were ups and downs, but more hills than mountains. Perhaps the best advice is to prepare for the worst and hope for the best. Remember, if things get bad, there is somebody on this board that has had a similar experience to offer advice, empathy and a friendly cyber ear.

Sorry! What I saw was on the American Lyme Disease Foundation website. JT Mom was right about a lot of swing in that statistic!!!! Reminds me of the strep titers controversy, ugh!

I read on a lyme website that 80-90% of people get a rash with the lyme infection. Has anyone heard any reasoning as to why the other 10-20% don't get a rash? Or could it be on the scalp and go undetected? Is the rash always at the place on the skin where the bite occurred or can it be other places? The rash is an immune response, yes? Also, referencing another post regarding Band 41, any microbe with a tail can trigger band 41? True, syphillis isn't likely, but if your child had EBV or Herpes Complex (cold sores) that can trip band 41? That could be the reason for many kiddos, I would think?

Peg, I hear you! Reading that list from Lyme mom on how to prevent ticks makes it seem as impossible as preventing strep! They are ticks and strep is everywhere. But if you don't get "the bullseye rash" and don't get symptoms sometimes for years, how do we have a fighting chance? At least throat cultures are inexpensive and accessible. How often can you run Igenex testing to check and make sure you are all still okay? Rhetorical, of course. I can't get that image from Monster's Inc., where the one monster has a human sock stuck to him and he's "decontaminated." We need a process like that for all of these minuscule offenders reeking havoc on our lives! What percentage of ticks pass on Lyme disease?

I believe Faith's child tested completely negative for Lyme including 41.

Melinda, Hey! How long did it take to get an appointment? We have got to do the Ambler Starbucks one night soon!!!!

Wendy, Thank you so much for sharing your family's story, your honesty and persistence. It sounds like you are saying LLMD's are good candidates to also encompass PANDAS within there scope of practice? Wouldn't that be fab!!! Not sure if I was reading between the lines correctly or not.... do you think those w/PANDAS that fail to have an anti-DNAse B rise are more likely to have Lyme involvement? Are there lyme studies that involve people who test positive, but don't have any symptoms? Sexually transmitted is a scary thought; my BIL has had Lyme since 2002, but my SIL has no lyme disease symptoms. One thing we here have all learned the hard way; the collective "we" must keep an open mind to all possibilities otherwise that is how children go sick and mistreated. Jill

Did Dr. Fallon use the Igenex lab and only that lab? What if there is something faulty with Quest's design for Band 41? I mean, if the consensus is the Quest Western Blot is no good, maybe many of these Band 41's are questionable???

Do you know how much the co-infection panel costs? I wonder if the pediatrician would give us a hard time about writing the script for these tests? I remember when I sent our little tick friend off for testing in 06, my BIL suggested putting dd10 on abx just in case and while the testing was in progress. The pediatrician said NO, no rash. I said, OK, but if that tick comes back from the lab with Lyme, you are going to do abx, right??? My goodness, you would think we are all heroine seekers with the reactions we get when requesting abx!!!

AHHHHH!!! There are so many Lyme posts on here lately I'm starting to see green!! Ok, a few practical questions: If your child has recently had IVIG, how many weeks do you need to wait for accurate Lyme testing? Has ANY PANDAS CHILD tested NEGATIVE for BAND 41????????? You need a doctor to order the tests from Igenex, yes? The basic #6050??? If you seek out and find a Lyme specialist, get any initial consult and then pony up the money for the testing, it's gonna add up to more than $200-400 I would think. Is the Lyme community doing anything to get those band 31 and 34 added back into the Western Blot provided by other labs? My dd10 has been neuro-sick/symptomatic 8 years; other than that very healthy, no joint/aches/pains/rashes/headaches/dizziness, ect. I pulled a tick off her in 2006 (no rash), but sent the little bugger to Igenex at the time and it was negative for Lyme. We live in PA and the past few years in an area that we have deer walking through our yard on a regular basis. She had IVIG 10 weeks ago and is doing FANTASTIC, not totally symptom free, but markedly improved from any other point in her life. Some slight immaturity and learning "holes" remain, but even those two issues have improved greatly over the past 10 weeks. Healing takes time. She did test positive for band 41. The problem I'm having with Lyme symptomology is that is sooo broad! It's like trying to get through the DSM IV without tripping one single trigger; it can't be done! I will do anything to get and keep my girl healthy, happy and age appropriate. I think I'm going to wait to see how she progresses to the 6 month mark and then ask myself "Jill, do you still have that gut instinct that says something still isn't right?" And if the answer is yes, then I know I have good cyber-friends in the area who can help me travel the Lyme path.

Buster, I tried to go through and identify the ones I felt I couldn't pick one of the choices and don't want to skew data. Here's what I came up with and a suggestion for choice or what to type in other if it is available. #11- Chronic, though varying symptoms for years #12- Chronic, though varying symptoms for years #19- Late dx and chronic (several years after onset of symptoms); that doc could not match to Swedo's criteria from that point in time #20- Dx was missed due to age and lifetime asymptomatic to strep even with positive titers, ect. My dd10 is now 10 weeks post her only IVIG. She is doing better than I can ever remember her being before, you just can't imagine what it is like to get your child back after so many years of suffering and wondering WTH is wrong?!?! Our family has gone from hopeless (pre-diagnosis) to determined (seeking treatment) to hopeful in the course of the past 6 months. I thank God everyday for gracing us with a doctor willing to push the continuum of risk and give our daughter her life back. That being said, I don't want to mess up data that can help other kids in anyway!!!!! Jill

Hi Buster, I don't know if I should participate on behalf on dd10 because I don't want to mess up otherwise meaningful data. I don't know exactly when the initial onset was, but it was somewhere in the 2 y.o. range (2002) making memory of symptoms and what started when difficult to convey. I know behaviors were episodic for years early on, remember good and bad periods, but after March, 2007 everything went chronic, but not always with all the demons showing up to party at the same time. Or I could just click "other" in some boxes and put chronic 3+ years? I guess what I'm trying to sense from you is if symptoms began around 2 y.o. and diagnosis was at 10 y.o., that's a long time past the initial onset to try an distinguish from that and other episodes. Maybe define "delayed diagnosis as X number of years and skip from some questions to others? I'll wait to see if others feel the same way and if there is a consensus we might be muddying some of this data. Jill

You cannot check strep titers and mycoplasma IgG

I teach children with special needs as well as am a parent to a child with learning differences. IMHO, it is important to teach in multiple modalities, so you are not just talking and expecting all of them to sit there and obediently hang on your every word (like mass.) When you craft your lessons you need to ask yourself; How am I reaching the visual learner, the auditory learner, the tactile/kinesthetic learner? Children are very spiritual beings. My dd10 has never been great at listening to mass; auditory learning is not her strength. But boy has she made some incredibly spiritual and moving observations of the stain glass in our church!!! Not connected to the lesson of the mass, but so what!!! She was thinking about and connecting with Christ, what a blessing!!! So being flexible is key. Appreciating each child's path to their spiritual connection is also important. When you are speaking and expecting them to listen, visual anchors are very important. Many children need a visual to attach what they are hearing or they just zone out. Off task behaviors are your feedback to your success. Are you engaging them and is the lesson on their level; little behaviors. Give them opportunities to move around and participate frequently. Don't be too hard on yourself if things go south or they seem bored. Every teacher has many lessons that flop, but the good ones know how to learn from it. Best wishes!

I had NO prolactin; as the doctor tactfully put it "your husband would have a better chance of breastfeeding." Both girls bottle fed, one PANDAS, one not.