bubbasmom

I definitely want to prepare you for this. Many of us have experienced an INCREASE in symptoms immediately following IVIG. My son was doing very well for 2 weeks before his second IVIG, had it done the 22nd and 23rd. By the 26th WOW!!! 25th, 26th, 27th, 28th, it was very bad again. But now the 29th, 30th, and 1st have been very good days. After his first IVIG in October I remember it also. Hang in there. See the post by fuel for all, he says the same thing. My son also, both times, had a severe severe migraine and throwing up for a full 24 hours after the second dose. Alternate tylenol and motrin, use ice packs, and nausea medicine if you need it is what they recommended and is what we did. Good luck.

Wornoutmom, my son was in sort of a remission for about 8 weeks then a big flare up of symptoms. I scheduled IVIG, but he started getting better. I thought 'well we'll still do it JUST IN CASE'. now we're back into it. I'm regretting it for the moment. But I still wonder if that won't help him STAY in a remission type phase. Who knows!

Fuel for all, what about the 6 week point? Do you mean he showed signs of improvement? Do I have to wait 6 weeks again?? I'm really ready for someone to tell me some good news for once. Cause you know we're still debating PANDAS, PITAND, Lyme, or just plain 'collapsing'.

Wow, we were just talking about that! My son too. Our kids have always had very similiar situations. That's why I was asking what you were doing with your son recently because I've about hit the wall. He was doing so well before. Looking back I do remember this happened last time. But I don't remember how long it lasted. He had IVIG 10/27 and by the 2nd week of December things started going very well.

Well, lyme-mom you convinced me. Not convinced me he has lyme, just that we have to BE SURE. And eliminate that as a possibilty. We just had the test done, I suppose it will be several days before we hear anything. So does your child have lyme and PANDAS? Or does lyme act like PANDAS in the sense that symptoms flare up following illness? Great, that's all I need yet another disease that is unfamiliar to local doctors!! Thanks for your important input. Every case of lyme is different so that was not good advice you got. It can take years for lyme to progress-I mean ten, twenty years in some cases. It depends on how much lyme the child has, what strain of lyme they have, what other infections the child has and how strong their immune system is. Which bands were positive? If your child had even one lyme-specific antibody and symptoms that could be lyme he should be treated. You have nothing to lose and everything to gain. I know who Dr. Crist is and he is supposed to be good. He is expensive though. My lyme doc doesn't take insurance but only charges 250 for the first appointment and 125 for followups. He is outside DC though. With a cheap flight on SW into BWI you would end up paying at least 450 to see my doc. I looked into lyme docs in St Louis for a relative there and there are some others outside St. Louis, although none right in St. Louis. Either way it is several hours drive. You can contact Ilads at contact@ilads.org and ask for a name. I think a holistic lyme MD would be great b/c that is what we have and he does other things that regular docs do not do to build up the immune system. I found the info on docs in Missouri and will PM them to you. Lyme Mom

LYME-MOM, I have much considered lyme disease. However, I contacted Dr. Christ's office in Columbia, Mo because they're within 2 hrs of St. Louis. But his nurse told me that with lyme they continue to get more ill as time goes on. This is not the case with my son. We see more 'flare ups' and he's not ill. We have already had him tested, but its been 2 years. Something like 10 aspects of the test, you have to have 5 positive to consider it positive and my son had three. Also this doctor is like a 'holistic medicine' doctor, he accepts no insurance and his visits are $450. With all we've been through, that's just too much to go on a hunch. And the big question everyone asks 'did we have a western blot' and the answer is yes we did. But it seems like you know a lot about lyme. Do you know if what I've been told is true? I'm not worried that he didn't have the bullseye rash because he doesn't get typical symptoms of anything so that wouldn't be surprising. But he has not gotten sicker and sicker. A lot of ups and downs though. If I could find a regular doctor that my insurance (UHC) would cover I'd gladly take him. FIFIDE - Would it have made you feel any more secure if you had found the swelling in the basal ganglia? I think that's my deal right now, frankly I just want to know that he hasn't just SNAPPED! I want to know that this will get better. Because as protective as I have been to only keep in involved with PANDAS believing doctors, now I'm considering backing off on this and letting psychiatrist do their thing with 'typical' pyschological treatments like ODD, OCD, depression, etc.

My son's first huge PANDAS outburst was in fall 2007, and a few weeks after that he did test positive for EBV. Hmmmm, very interesting that you brought that up. Also to those who were talking about hives. My 16 yr. old daughter (no PANDAS) had mono when she was 10. She had hives 2-3 times a day EVERY day for 5 years. She now has dermagraphism, which is harmless and actually quite entertaining. Its where you can 'write' on your skin with something not terribly sharp like a stylist, and in a few minutes it raises into whelps in that pattern. So yeah, EBV can be one of those nasty little bugs like strep! I think I'm becoming a germaphobe as we speak!

Just like all of you, I sit here and look at my son and all of the questions run through my mind....what if I'm wrong what if its not PANDAS, why are his symptoms different than one of the other kids, will he ever get over this, will my family survive this, blah blah blah. But has anyone ever had a CT scan/MRI? Does the basal ganglia show up on either of those scans? Is there anything else that shows up on kids scans? My son, 2 years ago during and episode of PANDAS, did have an EEG and that showed nothing out of the ordinary.

What a good thought - the clyndamycin and the biopsy. We ended up doing clydamycin just as a an antibiotic treatment. i didn't notice any difference from the Augmentin. But my doctor did say that's the drug they use to MAKE SURE there's no strep lingering anyway.

My son too complained of 'sudden' vision changes. He'd stop and stagger a bit and say 'wow my vision just went weird'. But only a few times.

Second round of IVIG just today. First round was back in October but my son got strep again. We didn't think it was working at first, but Dr. K said it could take 6-8 weeks, and sure enough at the 6 week mark all of the sudden we saw vast improvement. My son got PANDAS again Feb. 10 so we did it again.

Did anyone on this forum from St. Louis just get IVIG at St. John's? They only would say they had another PANDAS kid last week, due to privacy of course they would not give me anymore information. I just don't know of any other kids in St. Louis, not that there aren't any I just don't know of them. The place we got IVIG had never even heard of it until my son. I'm curious because I would like to know what doctors they have been seeing.

Wow, all this talk of asperger's. I have always thought my son, now 13 and has PANDAS, had aspergers. He's always had the 'social' quirks, shy beyond any kid should be, and a temper (which I understand could come with aspergers). Would a diagnosis help him? I'm thinking there's no cure so maybe he doesn't need one more label. And I agree, as people give me the typical symptoms of PANDAS, and my son fits the picture for the MOST part, but all this extra stuff like temper, and ODD kick in in addition to the OCD and a little bit of tics that fit it more with PANDAS. WOW ITS ALL SO CONFUSING.

Another concern to address however, is that in parents' desperation to solve their child's medical issues they tend to trust whoever they see on these sites so there needs to be a way for parents to confirm a doctor's credentials. However, I have taken many times what I have found on this forum to my pediatrician as a way of 'triggering thoughts' for him then I let him make the medical decisions.

I consider myself an intellegent person. Never went to med school, no biology degree, but always felt I could hold my own in a conversation. However, since my son has PANDAS, sometimes I feel I can't hold an intellegent conversation with a 3 year old!!! So often all of the medical stuff just needs to be broken down for me. So I am very interested in the Lyme Disease concept. My son's first major episode was 2 weeks following a hunting trip. We have had him tested, and although I have not seen the results for myself, my pediatrician describes it as this: the test has maybe 10 sections to it. You have to have perhaps 5 positive to have it considered it a positive result. My son has 3 sections positive. So to me there must be something there. The doctor disagrees and insists that it is a negative test. All of the information you all have posted here is well over my head. Aside from the fact my brain is fried since we've been in a major PANDAS episode since September (including violence, school problems, social problems and more) So I'm a little tired. Can you tell me specifically what I should be looking for when I request his test results? Also can you tell me if any of these things are related to Lyme: migraines, lack of social skills, anger management issues and basic ODD symptoms.

Wow, this is the first I've seen this many parents of teens. I had hoped, this being a pediatric onset disease that somehow as they got older this went away or improved. My son is 13. I really thought this would soon be over, I guess not, huh?

I don't know all of the details of all the studies, but I will say this I can look at my son's face and tell if we're in for a good day or bad day. On bad days his whole face is swollen, eyes, nose, cheeks. He also gets zits on his nose when it's going to be a bad day. Yet I never see it coming, how is that? lol Its like Christmas, we all know its coming every year yet we're so surprised when it gets here! I know we're in for bad days, yet I'm so surprised when we have one. Go figure. (but NSAID's do nothing for him, I've heard other that have tried that - and steroids make him nuts so we avoid those)

To the point, I have United Healthcare, they did not cover Dr. K's office visit which was 350 but did cover IVIG after pre approval which takes 32 days unless its urgent then a mere 12 days! We are in the process of trying to get another IVIG approved for my 13 year old son. Third exaberation since September with breaks in between. Frankly I think its the same episode we're not fully rid of each time. Good Luck.

So did it hit you like it did me on Grey's Anatomy when Richard and Meredith's mom had the GRID case? GRID, now known as AIDS did not even get recognized in this country as a 'real' disease in 1983. Now you have to be living under a rock to not know that not only is it a real disease but an epidemic. And it existed long before 1983 most likely, but was dismissed or misdiagnosed. It was 'labled' as this THING and as people approached it they stayed 10 feet away, wore masks, shuned the patient, didn't even try to understand. Sound like PANDAS to you? Misdiagnosed, not acknowledged, swept under the rug, dismissed as 'crazy'. I just found that profound as I watched. Twenty five years from now will PANDAS be a household term. Will you have to be living under a rock to not know about PANDAS?? Will our kids get the attention and rights they deserve from the medical community, from the school districts, from their peers. HHMMMM, something to think about.

I think this is exactly the information I need but I'm quite stressed right now and not really comprehending this. If you don't mind I will probably print this for the pediatrician to look at. He'll get that more I think. Thanks for everything.

Okay forgive my 'ignorance' on this. How do you know what strain of strep they had? Because I find that interesting because we went through that in 2007. We live in St. Louis and we knew of so many people that had strep that year and could not get rid of it for weeks and weeks. So did you just do a 'complete throat culture' to analyze what strain. I'd LOVE to know what strain my son has now because he's getting it over and over again.

Elizabeth, that's an interesting point. I have not had titers done on everyone. I have one daughter that I keep getting cultures done on. My oldest passes out with needles so to get her tested would be a nightmare, but I guess not as big of a nightmare as PANDAS, huh!

I don't think my questioning this has anything to do with being a PANDAS believer or not. As with every other aspect of PANDAS it is an interesting point. My son doesn't get strep symptoms, does that mean he doesn't get strep - NO he has had many many positive cultures without so much as a sore throat or fever. However, with the strep B - which I am aware is not 'strep throat' and I know how pregnant women have it once not the next time, but I am exploring the unusual aspect of strep in the gut. My son has a rather difficult to diagnose case of strep, and of PANDAS. So just because its not 'typical' or didn't happen with one person does not mean it cannot happen to the next. Like most parents I will stop at nothing and leave no stone unturned until my 13 son is recovered. I feel like I should reply to this. I have worked in OBGYN for the last 19 years, the first 7 as a labor and delivery nurse and the rest as a OBGYN nurse practitioner. Group B strep can be found in the vagina or rectum of women, pregnant or not. It can come and go; you can be positive for one pregnancy and not in another. It is standard practice to test for group B strep about a month before delivery. If the woman is negative, no further action is needed. If the woman is positive, it is recommended the woman get antibiotics by a standard protocol before delivery; if the woman labors too quickly and all the antibiotics are not in, most hospitals then treat the newborn. Group B strep can cause sepsis in a newborn; babies can get septic and die very, very quickly. The chance of sepsis and newborn death is low, even with positive strep test, but the antibiotic use in all positive women at delivery has slashed the numbers of newborn morbidity and mortality. It is a risk benefit thing. This form of strep is not the same strep that causes strep tonsillitis or step throat. Even though I am a PANDAS believer, and think my ds9 may have PANDAS or some form of PANDAS, I do not see the connection to rectal/vaginal group B strep.

We don't know for sure, its just same symptoms then he gets PANDAS like two weeks later every time. Also, I had MVP too. Just tuck that in your brain in case some other similarity comes up.

Seriously, yesterday evening I threw the idea out to my pediatrician the idea that since I had strep B during delivery of my son, could that have effected him. Then this moring I opened my email and there's an email from Beth Maloney regarding a survey regarding the same issue. PROFOUND! My son seems to keep getting strep no matter what antibiotics we use. His cultures are often negative so he's difficult to diagnose. I sincerely think he has strep in his gut. Any thoughts?