matis_mom

We did not have that reaction but it is common with steroids... make sure you give them in the morning so at least by evening he is more settled. Hang in there!

So if they child is already on abx, do you increase the dose around those times or stay the same? My 80-pounder is on Aug875 x2 daily, that should take care of it, right?

What do you mean by "affected" mother or father? Both my husband and I had numerous strep infections when we were little... His tonsils where taken out, mine are still here, and he is more of the OCD type Does that mean he is the "affected" one? We have 3 ds's and 4 dd's, our PANDA one being a boy (so far the only one, praying it stays that way!!!) Isabel

I found this while looking through the UVA site... Are there any complications from having rheumatic fever? Depending on the severity of the initial attack of the disease on the heart, some children may develop heart disease. Physical activity and sports may be restricted in your child, based on your child's physician's findings. Also, if your child had heart involvement during the initial course of rheumatic fever, he/she will need to receive antibiotics before having dental work done. This helps decrease the chance of infection migrating to the heart during the dental procedure. Consult your child's physician for more information. It doesn't really explain much, but I guess it confirms what some of you have been experiencing. Peglem, is it your daugther that shows increased symptoms after dental work? Here is the link if you'd like to look at the whole page. http://www.healthsystem.virginia.edu/uvahe...tis/rheumat.cfm

I comepletely agree!!! I am up unable to sleep, second-guessing myself as usual. I run into this post and it gives me great peace of mind that we did the right thing when we switched to Dr. Latimer. That was my big red flag with our previous doc, they kept talking about strep "toxins", never mentioning ANTIBODIES... So thanks Nevergiveup for putting this out. I am looking into going to see a pediatric immunologist in UVA as well... Isabel

Dcmom, you are in luck! It's a saliva test The child needs to spit into a little tube at four different times during the day, and they measure cortisol levels in the spit. Pretty harmless! I just realized that I forgot to answer the first part of the question... has anything worked for him? Since he was first diagnosed in July (he had been going downhill since what he thought was the flu in February, but now I realize there was probably strep as well) Dr. Zackrison put him on antibiotics and a lot of supplements and we had his tonsils out in August. Right away we saw an improvement in the energy level, but still he needs to sleep more than the other kids. If you have adrenal fatigue, besides some specific supplements, you will need extra sleep to give the adrenal glands a chance to recover. In September (at my request, since it did not seem the Amox was making a huge difference) they switched him from Amoxicillin to Cefuroxime + Vancomycin, and they also had to add Plaquenil for the joint swelling (they are not sure what to call it, RF of RA, but he definitely has joint issues). Anxiety-wise he is also better, now he is able to go outside, pet the dog, handle shoes (yes, he had shoe-phobia since shoes pick up stuff from the ground!), use doorknobs. We still have the hand-washing issues, the reasurrance questions (particularly at night), and spending sooooo much time in the bathroom (it's like he always trying to make sure he gets it all out). He also has wetting issues, so that feeds into the changing/washing cycle. So anyway, he does seem better overall, but not 100%, and we have so many different things going it's hard to tell what's working. Right now we are in the middle of a 30 day steroid burst (we are seeing Dr. Latimer), and we are ALL on antibiotics (he had a couple of flare-ups that there totally strep related - someone else in the family, he does not test + on the throat) If you are in the DC area, you might want to take her to Dr. Zackrison. She is an MD, but also does a lot of alternative stuff. She will run tons of tests and get to the bottom of if, although if your dd is afraid of needles that will be tough. My son was also a basket-case any time we even mentioned the possibility of blood-work, but he just had to get over it. They did the draw at Dr. Zs office and the nurses where great. They were able to get 17 tubes (yes, seventeen!) in one sitting! We are taking a break from Dr. Z right now because we felt really overwhelmed with all the different things she was coming up with, and it was hard to keep up with the cost of all the supplements and homeopathic things. We also felt she was not addressing the neurological/autoimmune part agressively enough, so that's why we are seeing Dr. Latimer to see if we get more results on that front. We are still doing many of the supplements, though, but I can't really tell if they are what is making a difference...

Dcmom, you are in luck! It's a saliva test The child needs to spit into a little tube at four different times during the day, and they measure cortisol levels in the spit. Pretty harmless!

Thanks for the info, but it seems like a such a risk! Who would ever put their kid at a 50% risk of not getting the prophilactic antiobiotic???

A lot of the physical and behavioral symptoms you describe for your daughter sounds so much like my PANDAS ds! He had the stomach aches off and on, a few episodes of throwing up, fatigue, germ-phobia, not wanting to go outside, spending tons of time in the bathroom... His strep titers were all high, they also found strep in his stool. He never had any "throat" symptoms. He also had adrenal fatigue (something to check out if your daughter is feeling tired all the time), presumably from the body fighting strep so long without help. He has been on Amoxicilin, Cefuroxime, Vancomycin (this is good for clearing the GI track and can be used with other antibiotics), and now is on Augmentin (we are seeing Dr. Latimer).

I was just reading a book about OCD in this kind of thoughts are very common in children with OCD, and they good news if it's part of OCD, those thoughts are never acted on. Of course, it sounds very scary, and better safe than sorry. Does her child have OCD, especially intrusive thoughts? She might want to seek profesional help, but then again she needs to be careful who she sees... I've just heard too many cases where the psychologist/social worker takes off on a tangent and the child ends up being removed/medicated/hospitalized unnecessarily. Quoting from "What to do when your child has OCD" by Aureen Pinto Wagner, PhD., pp. 285-286 "....Sometimes she had the urge to poke her eyes out with a fork or stick her finger in a plug, to stab her mother with a knife or to kill her dog..." The book goes on to explain we all have unwanted thoughts, which we dismiss, but "OCD sufferers experience them as a constant assault of horrific and loathsome thoughts; they can neither be dismissed nor controlled. Sufferers need to learn that thought is not equivalent to action...People with true OCD don't actually carry out their malicious thoughts, even though that is their worst fear." Hope this helps! Isabel

Harmony, A few questions... how did they find the Group B strep in his throat??? Is it the same swab they do for A? About those leg pains, are they joint pains, or just overall leg pain? From my experience, I would not go ahead with the T&A until I get some clear answers. I would definitely have that cough checked out, it could be pneumonia. There has been a lot of cases around here, mostly people getting it a couple of weeks of having had the flu. It is also caused by strep, and a couple of our friends had their kids go downhill very fast. They recovered just fine after some heavy meds, so I don't want to scare you, but you can't ask your body to deal with too many things at the same time. If anything, I would wait and see how he does. For our son, recovery after the T&A was painful and slow, so I would say it's not something to go into if you are not feeling well to begin with. Keep us posted and I hope he either just gets better, or you get some clear answers from the docs!

Hi there, Did you take him in to have him checked? I now in other circumstances, most of us would let this kind of thing ride out, but sometimes it's better to play it safe. It sounds viral, and I don't know what can be done about that while you are on a steroid burst. One thing you can definitely do is to give him tons of probiotics.

Vickie, Is he on antibiotics? Augmentin has worked great for us in the past as far as clearing sinus infections. Also, keep that vaporizer going, especially at night, it really helps drain things out. But it's great that this has not affected him in other ways! We are on the second week of a steroid burst, and ds picked up a cold from his sister. Lots of nose blowing but it is not affecting his behavior at all, so I too am hopeful things are getting back on track. Isabel

Thanks for the replies! I am very hopeful it will clear any of us that may be carrying strep. We have not had any stomach/GI issues related to it so far. My PANDAS ds is on Augmentin, we are just using the Omnicef for the rest of the family. We'll definitely go back and check just in case... It would be good to have a chart with all this different antibiotics and what each is most effective for (resistant strep, to clear carrier, for those with GI issues, etc...) Isabel

This is looking better all the time! I really like the "sub-titles", it makes it a lot easier to find things. I would add a caution not to use ibuprofen while on steroids, as that was the reply I got from several parents (stomach ulcers?) Also, I would put more emphasis on clearing strep from the house. There is a question there about checking carriers to see if they cleared, but I think it would be better if before that we put another question along the lines of Q: What else should I do to keep my PANDAS child strep-free? A: It is very important to test everyone in the household. Many families have found that there is a someone else in the family with strep during an exacerbation, or that they have an asymptomatic carrier who keeps infecting others. So it becomes necessary to check all family members (not just children) for strep by means of both a rapid test and a 72 culture and treat accordingly. (then this question should be followed by the one that talks about going back to check they cleared it). Maybe it would also be useful to include what protocols have been useful for clearing carriers, as the choice of abxs seems to be different than what is use for the PANDAS child. Perhaps this whole thing could become a separate "useful topic" called "Clearing the Carrier" or "How to keep strep out of the house!" And we could include other measures like changing toothbrushes, linens, treating pets, etc (well, we don't want to freak people out!) I am sure the "answers" can be enhanced by the collective wisdom on this forum, this is just what I could come up with right now... This document is awesome for new people and I think it will be great for all of us to have one single place to look for answers! Thanks for putting this together. Isabel (who is very focused on strep erradication right now )

Just a quick question for those of you who have tried Omnicef... How much did your children get? Our pediatrician put everyone on it but I think the pharmacy (or someone) might have messed up... They gave my younger kids 250mg/2xday (they are all only about 40 lbs), while my older son and I (let's just say over 100lbs) are on 300mg/2xday. So it seems my little kids are getting way too much when one compares, but then again maybe she just gave them a mega-dose to make sure they clear. I kind of don't want to give the Dr. any grief about it, the pharmacy was very busy that day, and I was picking up 6 prescriptions that day, all of which had to be mixed, the insurance would go through, I was there waiting for almost an hour! So maybe if I can get an idea of what you all got I can put my worries to rest today... Thanks! Isabel

How encouraging for all of us to hear! I am so glad for you and your family. Maybe that'll be us one day... We are half-way through the steroid burst, not seeing any improvement yet. I guess we all hope our child will be one of those who gets better with just the abxs... then we think, well, maybe the steroids will bring him back. I am starting to resign myself to the fact that this will take a while, and it's so less daunting when I hear success stories like yours! How's your older son doing? Also, about the OCD, are you doing any therapy? Reading your post I realized my son also IS much happier now (on Augmentin and steroids), but the OCD is still there, and I wonder how much of it is just habit. We've been meaning to start working on it, but it doesn't seem to bother him as much as us (I guess that's kind of good, he still doing the rituals, but not half as anxious about it as before, if you know what I mean). The problem is to do BT, it has to be his decision to start working on it, and he's not there yet... Anyway, I am very happy for you! What a wonderful Christmas present for the whole family! Isabel

Do you mind me asking the dosage for Omnicef? Our pediatrican was kind enough to put everyone on it, but it seems they are giving my little people way too much. They all weigh around 40 lbs and got 1tsp of the 250mg/5ml suspension (for a total of 500mg a day). My 14-yo and I got 300mg x 2day, for a total of 600, it seems to me someone messed up the prescription. Of course now it's Saturday night and I will not be able to get this sorted til Monday... But according to what I found online, it seems they should be getting only half of that, unless she is going for a mega dose to make sure we all clear it... Isabel

Don't forget to check mom and dad too!

Hi Laura, I am sorry your family is going through all this! I was just going to say the same thing as EAMom, was anyone else in the family sick when your son started with the rages/OCD? That would be a great piece of info to have. And do take everyone in and have them checked for strep. I would even run those titers again and see where he is standing (although not all PANDAS kids show elevated antibodies) Best to you and keep asking, someone in this forum will have the answer! Isabel

So, I want to get to the bottom of this, and be prepared in case we need IVIG/PEX. My pediatrician recommended Dr. Brett Loechelt, at Children's National Medical Center (it's the only immunologist they have). I'd like to know if anyone has had any experience with him, or if they can recommend another immunologist in the area (we live in Warrenton, but can travel to DC or Maryland if need be). Thanks!

My doctor said if they are on abx the rapid will always be negative, you have to do the culture. In any case, I would use those for other family members. It'd be interesting to try doing it at home right after you come back from the doctor with a + on the rapid... SF Mom, did you ever get any positives and then confirm at the doctor?

Pixiesmommy, I am so sorry you are going through all this, I know I am becoming more and more paranoid myself. I hope Peri does well on the antibiotics and hopefully that will be the end of it for her. About the bath, Dr. Latimer recommended we use Clorox in the bathtub, as strep can live in the skin. With so much info going through my head, I didn't get the exact amount, but I think maybe 1/4 cup? I don't think it's something to do every day, but maybe just once in a while. I did it a few weeks ago, and I'm going to try again this week since we'll all be on abxs, we'll do the whole house routine again... You probably need to wait until her rash clears a bit, I am sure it's painful. Is it itching like crazy? One of my son's friend had periannal strep and he just could not stand it. All he could do was sit on an ice-pack all day, it was really driving him crazy! Also, do you keep their toothbrushes in separate cups and a tube of toothpaste for each? I just started doing it, hope it helps! Oh, and about those blood tests... With my Pandas ds, we kept going to the pediatrician to see why he was feeling so awful, she kept coming up with different things to try, do the wait and see, etc., partly because he is totally terrified of needles. Well, now I wish she had done some bloodwork from the get go, it would have saved us about 5 months!!! So yes, it's a pain to have blood drawn, but not knowing what's going on can be a lot worse.

All, Now we have everyone in the house on Omnicef x 10 days (except my husband, all he could get was Amoxicilin...) Crossing our fingers and hoping this does the trick to erradicate strep. Pediatrician will test everyone w/culture afterwards (wait two weeks, right?) to make sure it's gone. (I am writing all your experiences down for choices of abxs if this doesn't work) So now I need to know: 1) What else do you do to make sure it's actually erradicated, especially in those asymptomatic carriers? 2) Has anyone tried any homeopathics/natural remedies to keep the non-pandas children clear? Thanks so much! Isabel (who just enlightened her OB about Pandas... he had never heard of it but by the time we were done he wrote me a prescription, thanks doc!)