thereishope

With Lyme, there is a worsening with die off. I don't know how it works with yeast. As for PANDAS, in general, as it pertains to my son and strep...he worsens for a few days after starting antibiotics then I see him plateua and slowly improve. Overall, it takes months to get back to baseline with bumps in the road along the way. As for Mycro P, I've read others saying they have seen physical symtpoms like a cough come along after starting meds for it, but I can't remember about PANDAS symptoms. I know one other person with a Mycro P case taking clindamycin for it. I think it'd be good to compare notes with that person. Let me think for a minute and try to remember who.

Unfortunately, for the majority of kids, the steroid burst provides only temp relief. The timeline vaires as to when you may see the relief and the duration of the relief varies. Some parents do say that the steroid burst aids in their child overall recovey. Some even say w/o regression afterwards. This probably depends on a lot of factors. What the PANDAS symptoms were, how soon after infection or onset of exacerbation of symtpoms the steroid was given, how long they had the infection. With my son, the 5 day steroid did aid in recovery, but his main symtpom was OCD, no tics. He also received rather early on in one of his exacerbations. As for the worsening of OCD, as oppose to going back to pre-steroid status, well, maybe it's the OCD just taking over control as OCD loves to do. I do know one person on here said their child was give Zith for Mycro P and wasn't improving and graduated to Biaxin. So, that is something to consider/request if things continue to worsen. I admit, it's ridiculous how we have to sit here and make so many guesses and 'maybes" with our children. Wouldn't it be lovely if we can just call the dcotor, they tell us what to do, and it worked.

One other question I would throw in there, is over the last 7 years, has your child been on antibiotics prior to the penv?If so, do you ever remember thinking "hey, the tics are doing better, wonder why". It's time to really rack your brains and try to remember. Also, I don't think in between an exacerbation, or extreme worsening of symptoms, I am looking for you to say he went to completely no tics, but if there were noticeable, dramatic fluctuations in behaviors and/or tics. I think you will feel better if you do the Cunningham test for your child. Like nevergiveup said, if you have the money, do it.

I can totally see my husband trying to swab my kids. The man can't even pull out dangling, loose baby teeth. I have a feeling I would be the swabber in the family

Okay. Let me sort this out. he was on antibiotics for a month and you see improvment with behavior and tics. maybe not 100% better but an improvement. To give a timeline, a child's first PANDAS exacerbation, if caught in a timely manner, may last about 4-10 weeks. So, I wouldn't be surprised that you wouldn't have reached your optimal potential for improvemnt on antibiotics alone yet. But, since you have seen improvement w/in 30 days, I do think that is a good indicator, esp when people say tics are the hardest to get rid of. In addition to tests, make sure you fololw your gut too. It's a great indicator in itself.

Once a child is high dose antibiotics for a long time, it's like they need to get weaned off. If I remember correctly, someone said that when meds like augmentin is at high dose, it does actually start to kill the bacteria. When it is at a lower dose, it just slows the reproduction of the bacteria down and the immune system kills it off. So, a stepping down does make sense. It's almost feels like you're retraining the immune system in what to do. Even when I considered my son 100% recovered, he'd still amaze me with new things. I think a lot of the smaller "oddities' or quirks become such second nature to us, we forget that they are not what other children exhibit and it's not till they change their ways do we realize they made even more strides. I used to also find it funny how I'd reread journal entries and be reminded of something he used to do and it wasn't till that point did I realize he overcame something else.

Happy Birthday to him! It's funny, when you have that first birthday celebrated after PANDAS has been diagnosed and recovery is in sight, you have a whole new appreciation for that special day. It's like a rebirth.

You don't send the strips anywhere. You do it all at home. I think EAMom and Buster have them. I know there are others too, but their names elude me right now. About temperatures, yes, there are other PANDAS children who run fevers w/o explanation. My son went through a time of a raised tempertaure (not quite a fever) w/o reason. I think some have said when the child feels feverish it may be a sign of yeast overgrowth?It wasn't the case with my son, but maybe it's like that with some kids. Is that a possibility?

How's this for an explanation, it's from Buster's FAQ sheet... http://www.latitudes.org/forums/index.php?showtopic=6266 I also recently posted an email update from Sept 2009 with notes from PANDAS Network on Cunningham's study. Maybe that would be useful? So right now your son isn't on any meds, correct? If you feel at some point certain in your heart it is PANDAS, would you use prophylactic antibiotic or are you pretty much against the use of a daily antibiotic to prevent strep in your son's case? When is the doctor appointment? How is your son's behaviors and/or tics right now?

Mom...did you try to take him off antibiotics all together or lower his dosage?

I wonder how much it would cost to buy a box of rapid strep tests and have them shipped overseas to have an hand. I know some on here who bought them I think on sites like Amazon. Granted, it doesn't do a culture, but I suppose a rapid is better than nothing.

As for family members, you can simply go to your own doctor and have all family members tested. This is not only for those doing IVIG. It's for all PANDAS families. Every time someone has strep, take everyone in. Do a rapid. Rapid comes back neg, do a culture. Some have also had blood work done on the whole family. It's also important that if anyone does have strep, to make sure they go for a follow up strep test 3 weeks after finishing antibiotics to make sure they have cleared. Every time someone in my family has strep, we all go in for strep tests. It gets pricey for a family of 5 with bad insurance, but by doing this every time, we have learned that my 2 non-PANDAS kids do not get classic strep symptoms (same as my PANDAS son). We have also had 2 occassions (one with my PANDAS son, one with my husband) where the rapid came back negative and the culture came back +. Make sure you tell them to run a culture. Sometimes they will not do this if you don't ask, esp for an adult.

I was looking up some info yesterday to put up for that fb Pepsi page. As you know, we are nominating Dr Cunningham's research. Anyway, I remembered this email update from Sept 2009. It was notes from a meeting Diana Pohlman (PANDAS Nework) had with Dr Cunningham. Since we have a lot of new members since that date, I thought I'd repost it for them to read.It had a lot of good info. http://www.latitudes.org/forums/index.php?...ic=5349&hl=

I'm so sorry, Melanie. Can you remind us which doctors play a role in your son's med treatment. Was Dr T originally involved in getting the IVIG done via orders or was it just a consult basis with another doctor? Is he still a part of your son's med team? It sounds like it may be time to approach them about increasing the dosage of IVIG.

bumping this up for people who check the forum on the weekend.

I don't see an increase in symptoms in relation to weather. However, some people with other autoimmune disorders, such as RA, do have worse days with rain and wetter weather.

Antibiotics will help prevent strep, but it is not 100% effective. Like with t and a. T and a is suppose to lower your chance of strep by 80%. Well, we have kids on here who continue to have chronic strep after t and a.If your child has a virus while on antibiotics that could make PANDAS symptoms surface. Same thing with allergies, stress, and other infections (like Mycroplasma P). If you are on Augmentin and catch Mycro P, the abx won't help or prevent that. I don't remember, did you ever do blood tests for Lyme, Faith?

About a child having PANDAS symptoms due to exposure only, I don't really have an explanation as to why this happens. But, it's been compared to a peanut allergy before. When a child has a severe peanut allergy, just being around peanuts or breathing in the air borne particles, makes them have a reaction. This is why it is alos important to rule out strep within the household. 1, because you don't want to reinfect the PANDAS child and 2, exposure can cause symptoms to not improve. The "exposure" response is not in every PANDAS child. Some will say their child is a "canary". Their increase in PANDAS problems means someone has strep. About being notified...it is not a standard protocal in my school, but I called the principal and explained the situation and I now get a phone call if strep is in the kindergarten (PANDAS child) or 3rd grade (non PANDAS child). What I'm scared about is when my 3 yr old starts preschool next year. Anyway, request to be notified. They may cooperate with you on this. They do not say the child's name, just that it was in the grade. If I ask which class, they tell me.

Today is Friday. So, hopefully, all other cases of strep will be diagnosed by Monday. If it's one child in the class, I'd send my son to school. When the number rises, I'd probably pull him out for a couple days just to let it run it's course through the class and make sure the kids that contracted it had time to show symptoms and get taken to the dr. I hate it when strep enters the classroom. I take my kids to rule it out when it's in the classroom. But a strep test may not even show up + until a few days after infection. I never know the ideal time to take them if no PANDAS symtpoms have surfaced yet. My non-PANDAS kids do not show symptoms of strep either. So the only way to rule it out is a test.

If strep is up in the sinuses, it probably won't show up on a swab. I think you can ask them to swab the nose, but you can only get so high up there! As for the titers, you can have an infection even without a rise in titers. What is it? Around 40% won't have a rise in titers? If step is on the skin, I don't think you'll have a rise either. I think I remember reading once on here that if you have strep for a long time, eventually the body somehow adapts to it and the titers may begin to fall even if you have the infection still. Anyone have info on that? If you think there's a sinus infection and the ped won't listen, go to an ENT. Yes, they are more money, but, you won't have to pay up front and in the long run, it will be cheaper than numerous visits to the reg dr trying to figure out what is going on. Also, an ENT will give a longer script for a sinus infection. My insurance is horrible too. Like you,Gina, I pay everything up front until I reach my high deductible.

Sinus infections can be way up in the sinuses and hidden. My son had a sinus infection (that the dr was able to see) and didn't complain at all about it. I only suspected it because his "cold' lasted on and off for a month. The first round of Augmentin (14 days) seemed to help. He finished the script and a week after that, he was congested again. Took him back in and the infection was still there. He went back on Augmentin for 20 more days and it finally cleared. The second itme, he was also given Flonase. The ped thought maybe allergies caused the sinus infection and the steroid brought down swelling too. He only used that for a week and it helped. My son wasn't miserable when he had the infection. he was just congested and his voice sounded like there was some swelling in the sinuses.

For those you who have been become fans. Thank you! If you don't check fb today, we are asking that you share your experience with PANDAS on the page. If you have Dr Cunningham's study, share how it has helped your family. It's important for those who stumble on the fan page, to become moved by our cause and help. Also, it helps your "friends" that you share the site with to undertsand why Dr Cunningham deserves to win the grant. It would be nice when this is over to alos provide Dr Cunningham with our experiences and let her truly know how she has helped the PANDAS community. We can eventually copy posts from the wall and send them to her. If you do not have a facebook account and you still want your story to be heard, feel free to send it to me, P.Mom, or post it on this thread. We will copy and paste it on the wall for you. Also, know if you do not have a facebook account, you will still be able to vote. We will provide the link to our entry in March. You do not need a facebook account to vote. It is just a communication tool right now. There is no known affiliation with Facebook and the Pepsi Refresh Grant.

I pretty much second everything that was said. I would ask the same....has he been taking a probiotic? Did the Benadryl help? Also, rule out it's anything non-related to the meds and make sure the skin just isn't overly dry and think if you've addded any new foods or changed anything like the soap or laundry detregent.

Isn't a great feeling when you know you've reach that turning point and you get that feeling of HOPE. Things will get better. Believe that!

I hate it when things go down and there are just too many factors that might be the reason. Is it this, is it that, is it a combination of everything. I understand how you'd be nervous to stop the shots. Always wondering...if I only did a couple more would things have improved. It's a big, bad puzzle to figure out.