Debbie1

Thanks Wendy. No dog here and no neighbors with dogs either. We just realized that he has a little azith left from the last round so if I do not hear back from the doctor by tomorrow, he may start with what he has. At least that will buy us some time until we can reach the doctor.

dh had elevated strep titers and was postive for group B strep several weeks ago when tested. He was given a month of azith. to try to clear him. He recently went back for a culture to confirm he was clear. Yesterday the doctor called to say he is positive for group B strep. Since he is asymptomatic and it is group B, his doctor will not treat. He told us we have to call the doctor who is treating our children. Of course, it is Christmas weekend, so I do not expect to be able to reach anyone until Monday at the earliest. However, t&a surgery is scheduled for next week and I would really like to know that we do not have strep in the house at the time. I am concerned that after a month on azith, he is still testing positive. He is allergic to penicillin so I am not sure what our other options are. Any advice?

I am so sorry you have to make this decision. We faced a similar situation at Thanksgiving time when we were going to host my dh's family and one of the cousins came down with strep. I told my SIL not to send her daughter even though she would have been on antibiotics for over 24 hours by the time she came to my house. It was a very unpopular decision, but for my sanity, it was worth it. As it was, the cousin's brother was still coming, as were other cousins who frequently have strep. Honestly, I was a wreck the whole time. More recently, we were supposed to sleepover at this same cousin's house for a yearly get together that we have. We cancelled the sleepover and went for a few hours during the day instead (although it may not be possible in your case). It is always more likely for the kids to catch something when they are sleeping right next to a sick child. Again, it was a very unpopular decision. However, if your SIL is willing to put the others on antibiotics (and perhaps the parents can get a quick culture tomorrow), I would feel pretty comfortable. It is a very difficult decision...I would go with your gut on this one.

Well, I posted too soon. My son came home from school yesterday and told me he had two episodes of stomach aches during the day and some brief joint pain. I am leaning toward not doing the CamK testing on him yet because he is not currently a candidate for IVIG or PEX and I am not sure what we would do differently at this point with positive results. We already suspect it might be strep related and are treating as such (in addition to exploring the other possibilities). Wendy - if you can tell me what you think we might gain at this point by having it done, I am open to rethinking it. In terms of strep in the gut - we tried to get our kids tested several months ago (per Dr. L.'s request) and the lab messed up. When they didn't send the correct results, the Dr.'s office called and they said we don't test for strep in the gut. Why they took the samples from me then, I don't know. I called a few other labs, including a University Hospital nearby, they all said they cannot test for it. So if anyone is thinking of going ahead with the testing, be sure you have a lab that will do the proper test for you before you submit the samples.

I am considering contacting the lab about him in January. However, with the increase in price, I am not sure we will go ahead with the testing, particularly if we are aggressively treating him with antibiotics and t&a surgery anyway.

Yes, this is my non-PANDAS child, although we have wondered, together with neurologists, whether he has a very mild form that is going under the radar because my other children are more severe. It is a definite possibility that his stomach aches and joint pain are all strep related. We have had him tested for Celiac multiple times...its always negative. I have never taken him off of gluten. He is on antibiotics because he has high strep titers and we have two other children with PANDAS (also with high titers). The neurologists felt we may be passing a strep infection around the house and put him on antibiotics with the others to make sure we clear it. The plan right now is to keep him on until his titers come down into the normal range.

I took my non-PANDAS son for a GI appointment yesterday. I know it is hard to keep everyone's story's straight so here's a reminder - He has had ongoing stomach aches which began with a strep infection in 2008, elevated strep titers which have not come down into the normal range, elevated eosinophils, and moving joint pain which began 6 weeks ago. Endoscopy and ultrasound done several months ago were normal. All other bloodwork was normal. Rheumatologist ruled any any rhuem. disorders. He is the most emotional and anxious of my children, but overall happy, well adjusted, social, etc. No tics or OCD. The GI ordered additional bloodwork specifically to rule out Crohn's, although it is not presenting that way, due to family history. Also ordered another ultrasound. He admitted it might all be from strep and hopes with the t&a surgery we will see resolution, but we don't know for sure. We know he is lactose intolerant and it is possible that lactaid pills before dairy are not helping him enough. He has been off dairy before, though, with no change in symptoms so I am questioning the likelihood of this possibility. So lots of possibilities, no real answers yet. Strangely, he has been doing much better since last Thursday. No stomach aches or joint pain since then and he has been handling his emotions much better. We switched him from augmentin to Zithromax last Friday. I am not sure if the augmentin finally kicked in to fight an infection (he was on it for 9 weeks before the switch) or whether he coincidentally had a good day (been known to happen every now and then), and then the Zithromax kicked in for some more lasting improvement. Or it is possible that it is something else entirely. I am not sure that this is helpful to anyone since we have no answers yet, but that is the update for now.

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Do you know whether it is covered (as long as you get precertification) under all UHC plans or is it plan dependent?

Thanks for the quick reply, fuelforall. I am going to print the page and give it to our doctor.

Someone recently posted about UHC covering IVIG for PANDAS (although maybe only under certain plans). I am looking for the post, but can't seem to find it. It contained a list of approved uses for IVIG, one of them being PANDAS. Can anyone help me locate it? Thanks, Debbie

Have you seen any improvement on the Zithromax? My non-PANDAS son has been on full strength augmentin for 9 weeks with no change in stomach aches and the addition of joint pain. We are considering switching to Zithromax and have an appointment tomorrow when we will discuss. My PANDAS daughter has been doing much better since we switched to Zithromax.

Glad you are through with the t&a. How is he feeling today?

What type of doctor is currently working with you on this?

My "non-PANDAS" child is my most emotional, anxious and intense of all of my children. We have wondered with neurologists whether he has a very mild form of PANDAS and because the others are more severe, he has gone under the radar. He is on antibiotics and is getting tonsils out with the others due to high titers, stomach aches and family history. We recently took him for a nerological consult just to make sure there were no signs that we were missing. The neuro said he looks good. We will continue to have him followed by the neuro and he will be seeing an immunologist along with our other children. We have eliminated dairy several times, several weeks at a time with no change in symptoms. We have not yet eliminated wheat with him, but did for a few months with my other son. It is hard at the beginning, but does get easier with time if you decide to do it. Many people on the tics/tourettes side of the board are GF/CF so if you decide to go forward with eliminating, they are a great source of information. I just have a strong feeling in our case that it is all strep related. I just have to find a doctor who can figure out how to help him feel better.

Thanks for the positive spin! It really was not a complete waste of time because she did rule out any serious rheumatological diseases.

Hi Mary, We have a similar story. I started out on the other side of the board - eliminated all artificial ingredients and gluten for a period of time. My kids were doing very well and then had a relapse of tics/OCD with a strep infection. The relapse could not be attributed to anything that was eaten. When you changed the diet and went all natural, how long was it before you saw improvement? How long had the tics been going on before you made the change? Was there anything else that could have explained the improvement? I am asking because in our case, we thought it was the diet that was making a difference, but in hindsight, my son had just finished a round of augmentin for a sinus infection when the improvement began. It could also be the case that the PANDAS reaction was starting to come down when you saw the improvement and that it maybe would have happened even without the change in diet. Since starting antibioitics for PANDAS, we have found that we can give some artificial ingredients without having an exacerbation in tics or OCD. I still try to keep our home as natural as possible, but am not as strict about it. There have been times when they had plenty of artificial ingredients with no increase in symptoms. Your pediatrician sounds great. It is wonderful that he is on your side. I hope you see immediate improvement, but if you don't, I would strongly encourage you to contact one of the experts. We have been to so many doctors who say they are familiar with PANDAS, but when we go to the appointments, we are disappointed with their limited knowledge and simplistic view of the disorder. Our pediatrician is wonderful, but he admittedly did not know what to do when 10 day courses of antibiotics did not always work. Keep us posted. Debbie

Wendy, Thanks for the suggestion. We have not yet had his Cam Kinase tested. I will contact the lab and ask them about it. I am just not sure I understand - if he has no tics or OCD, why would his Cam Kinase be elevated? Thanks, Debbie

I took my non-PANDAS son to a rheumatologist this morning because he has had ongoing stomach aches since a strep infection in the fall of 2008 and started complaining of joint pain over one month ago (he also has high strep titers). I called the office in advance to find out whether they are familiar with PANDAS, since it is a big part of our family history and I need someone who can understand the big picture. The nurse assured me that they have PANDAS patients. Well once we were there, the doctor told me she only had two PANDAS patients ever and that once they got rid of the strep and put them on Zoloft, the kids got better and it was not a chronic problem (side note - one of my PANDAS kids was on Zoloft and it was a disaster like so many others here). She told me she believes in PANDAS but she believes it is very rare and is terribly over diagnosed (I don't think anyone here has had an easy time getting diagnosed!) She also told me it is so rare that there is no way we could have two children in the family with it. I would have said thank you and walked out at this point if not for the fact that I needed to get to the bottom of the stomach aches and joint pain. She examined him and found no evidence of any rheumatalogical disease. That was a relief, but then she told me that she has no idea why my son is having joint pain and cannot help us. Not - let's look into this further to find out why your son is having joint pain for several minutes at a time, up to twice a day. She said she has no idea and is sending us back to the GI because of the stomach pain. Seriously...I could call myself a doctor if all it took was "I have no idea why you are having pain"... very frustrating!!!!

My daughter (age 12, 95 lbs) was switched a week and a half ago to Zithromax 400 mg per day. (I posted earlier today that she was on 500 mg per day, but just realized that was an error.) I saw improvement within 24 hours. Prior to Zithromax, she was on augmentin for 7 weeks with minimal change in symptoms.

We give probiotics twice a day. We use florastore which I have been told is the only probiotic that can be given with the antibiotic. Just bringing this up because if one of your childen has stomach issues, you may want to talk to the doctor about giving the probiotic twice daily.

Hi Joan, My 12 year old daughter (95lbs) was on 1200 mg of augmentin/day for 7 weeks with minimal change in symptoms. We recently switched her to azith 500 mg/day and she seems to be improving now. She also has high titers, although not as high as your son's, and is getting her tonsils out in a few weeks. In our case, the doctor believed there may be some penicillin resistance since she was on prophylactic amox for a year before switching to augmentin. Your son's titers are very high and they do take a long time to come down. I'm hoping the t&a goes smoothly for you and jumpstarts a recovery. Debbie

That's great news! So Dr. B. is willing to do IVIG even though he is symptom free?

This is so similar to how PANDAS started for us with my son a few years ago. Urinary frequency, some mild separation anxiety and constantly complaining that he doesn't feel well were his only symptoms at the beginning. When was the last time she was positive for strep? I would have her recultured and titers run if your PANDAS child tends to have high titers (and maybe even if not), give a trial of antibiotics and get her an appointment with the PANDAS doctors that follow your other child. Not meaning to scare you, but if it were my child, I would be as thorough as possible given the family history.

Given your child's resistance to throat cultures, you might have a hard time with this advice, but... My kids will only get their throat cultured while lying down. A nurse once clued us in to this trick - it helps to prevent the gag reflex. Now my kids willingly get throat cultures - they just insist on lying down for it.