qannie47

I can understand your desire to meet in person, but the truth is when I bring my ds in with DR. K, he is not looking all that much at my son. He is talking to me, getting my clinical feedback. While ideal, your doctor does not have to actually be in the same room with your child to give him good medical service in the case of Pandas.

I guess there are the trail makers and the ones that just follow them. Thank goodness for our brave doctors who have dared unchartered territory. Truly, they will be on the short list with all those before them, whom have contributed our greatest breakthroughs in medicine.

My son has had flares on abx as well. The theory is that abx should help with flares in the sense that they are a defense against infections, plus they are know to be an anti-inflammatory. I believe that they also keep the immune system from going haywire. In the sense that if the abx kiils off invaders, it is less of a chance that it will make the misguided T cells, or at least minimize it's misguided attack. Yes, I too remember the 8 day reacurrent flares...that has not been my experience at all. The duration of my ds's flares have been anywhere from 3 days to 8 weeks one flare lasted 10-12 weeks. Since his IVIG he had one bad flare in September, 4 weeks long, and one mild one 3 days. I have found that for my son the first 24 hours are a good indicator for what to expect with each unique flare. If it starts out mild/moderate, that is what we can expect. If it starts out explosive/###### then we can count on that as well.

my son flared with teeth

I get that you don't want to fabricate, and I don't think right now is the time to start doing so until your results come in. That way, depending on what they show, you can start off with the right meds specific to the infection. You have come this far and now it will be only a couple more days for the blood work results. Hold tight. If they come back normal, hopefully your peds doc will still try a course of abx. When I say course, I mean it could take 30 days before you see results. Hopefully not. You are really in a tough place. I am sorry for that. I agree with pr40 that your daughters eating restrictions are not going to be resolved by just abx. I have not delbt with eating issues, but the people who have in this forum paint a difficult picture. (sorry) You are going to have to tackle that part with other options. I am glad that your peds is a pandas believer, but I can see that he may not know a lot. You need somebody who does. A pandas specialist will have a more educated idea of how to handle the restricted eating. For Pandas children, it seems to be more about choking, odd food beliefs, rather then true anorexia which is more about a distorted sense of their own body to put it in simple terms. Can you push for a phone consult? How about DR. K. He will do a phone consult. It just sounds like waiting for the end of the month is too long at this point. It seems like your daughter is going for soft, easy to swallow foods. Have you tried to turn her icecream into protein shakes? Until you can get her in, I would try an approach where you can at least enrich her ice cream with protein powders. Fruit smooties? Anything soft and easy to swallow? Has she been able to articulate what it is about ice cream and milk and bread that makes them tolerable to eat? I would go online and look for creative ways to add nurtrients to ice cream. best of luck

I think the Pandas community through time has definitely broadened it's thoughts on Pandas, and it's etiology. Where once thought only Strep, they are now finding a whole host of infections can be the culprit. Lyme, mycoplasma...and it makes sense. If a bacteria like Strep has the ability to cause havoc on a vulnerable immune system, other infections could as well. Pandas in my opinion is very progressive and I think that is the main problem with it. The disorder cycles through a whole host of symptoms that can seem unrelated, hence, we see children suffer for years before diagnosed. What can appear as a mild idiosyncratic expression like a simple vocal tic that suddenly disappears in a four year old for example, can turn up again age six as full blown Pandas, Pans. As the medical community embraces Pandas/Pans, and research yields more knowledge, I think these early symptoms are going to be examined and treated from a different perspective/approach. At least I hope so.

If a neuro is willing to weigh in to such an extent, I think his advice is worth serious consideration. Doctors these days are not too inclined to offer up IVIG unless they think that is has some valuable potentials to offer. My son had IVIG and we experienced great results in the immediate and moving forward. Best of luck

there is the cunninghams panel, titer's blood work. These are helpful, but only offer a piece of the puzzle and not absolute. I would also Unfortunately, Pandas is still mainly a clinical diagnosis. I would print off webpediatrics clinical symptoms and bring that with you. Also, still look through forum for other tests like 23&ME. These tests will give you a lot of specific info regarding your child and how to supplement. Parents have had a lot of success with proper supplements here...there is a wealth of information.

airial95 that is very good to hear....

What is hard to get used to is the fact that these flares will come and go.....come and go....my son had the same pattern as well. It is said that the "T" cells, once they have crossed the BBB can stay there for 6 years (that was the theory). Any time the immune system is turned on, these T cells will start to aggravate the basil ganglia again. Sorry, I know this is hard....and defeating to see them regress, as you start to see the pattern that they do indeed return back to baseline you will start to get used to it...well, not used to it, but that assurance will help a little.

My ds8 had tonsillectomy 8 days ago. He is doing great. Actually no pain since first day of surgery...He has been wonderful. He is strangely calm, over the top reasonable, and laughing a lot. I was told to expect a flare as a result from the surgery. I expected that to happen rather quickly, within days, since in the past he has had a fast reaction time to flaring with illness or exposure. When do you think a flare would most likely to occur? Or could I just be stuck in a good dream and a flare is not going to happen.....

I don't look forward to this part at all. With my twins, age 8, I suppose I will start to see some of this. I do know that many adults have horrible memories of social isolation for a varying number of reasons and end up living happy healthy lives. That being said, as a parent, to watch our children suffer some of this will be hard.

my ds was asymptomatic for strep twice. (actually each time, but we accidently caught previous streps cause my doc always runs a rapid strep if issue could at all be connected to strep. this was prior pandas and is protocol for all kids in office it seems). Anyway, the first time strep was asymptomatic(and not caught because he had no other issues so I never brought him in), he ended up with scarlet fever. Second time, he ended up with Pandas age 6.

was a rapid strep done? If negative, these definitely indicate that there was an infection in the recent past...what's up with the doc? You need a new one.

maryaw: when researching other sites/other syndromes that have similar symptoms, I have run across the antihistamine phenomemon. Did Swedo explain why these work? I know that they make any body sleepy, and could slow down a child who is ticking/tantruming/motoric movements, but there must be more to it. Did she say?

If the antibiotics are working, and it sounds like they are, keep them up. I would also recommend seeing a Pandas specialist. Pandas is not an easy disorder to take on. It is nebulous. You will need a specialist who is used to the twists and turns that go hand in hand with this syndrome. It sounds like you have a very good grasp of your daughters symptoms, and that is good. It also seems that you are experiencing some success with the abx, that is wonderful too!

I would say that as his mom, trust your gut. I completely understand your concern. When my ds was first diagnosed, I bounced back and forth regarding his Pandas diagnosis. I often wondered about what if we were wrong? What if it was something else like bi-polar, or any other mental health disorder.....For myself, I suppose it was just time and careful vigilance, and talking to a lot of different professionals....while I am more comfortable with his Pandas dx now then I was 1 year ago, my concern still lurks. I hear this from other parents with other dx's as well. Especially when it is a chronic condition, with no instant fix. I think it was Rowingmom who suggests "not worrying so much about the label and focus more on treating the symptoms". That has helped me a lot. So many of our children's symptoms overlap from one disorder to another anyway. At the end of the day, I can feel better that I know that I am at least doing the best I can. Maybe I will sometimes make the wrong call, but at least I am doing something. That's gotta be better then nothing.

They say that if steroids help, that does point to autoimmune......

Is he now under the care of Dr. B? Is what your reporting cumulative?, or are each set of symptoms a separate set of symptoms that have gone away? Has he ever returned to his baseline norm?

IVIG: Both. Can bring a child out of an exacerbation and in the long term help to mature the immune system in the big picture/long run....They say that with IVIG, a child will still have flares, but as the immune system matures/heals, flares will/should be less intense and shorter induration. Truly, I don't think anybody has all the answers, but this is the best they got.

What did rapid strep test show? Start ABX immediately, you have nothing to lose, and much to gain. Dr. Kovorsevic, out of Hinsdale IL, will do a phone consult and treat over the phone immediately. He has treated my ds and has been wonderful. He goes back to the trenches of when Pandas was first hypothesized and he knows a lot. Go to Webpediatricsmd.com If you email him, he should respond immediately. When did she start the therapist? All of this is new in the past 21/2 months? with sudden onset You will have to demonstrate an active infection to correlate to a Pandas diagnosis, or an infection that occurred in the last 12 weeks if I remember correctly. Either or, I wish you the best of luck.....

Need more info? what is his history...what led to the Pandas diagnosis and recent 30 day abx? It took about 30 days for my ds to respond, but he was diagnosed within 30 days of onset of Pandas. If it has been 3 years, it could take longer for inflammation to subside. At this point, I would go to a steroid burst....

So far so good. We are home. Ds reports very little pain and on very minimal pain meds so I am thrilled. The doc said though that there is still the anesthetic in his system so this could account for that. Still, I am very happy that he is doing so well.

Try and remember it is the disease, not the child!

If she breathed in mold spores at friends house, can you try a neti-pod rinse? It is great for clearing out trapped allergens and things like that.