momofgirls

My daughter was positive for the p41 band. At one point last year we did some GI testing done and was positive for H pylori. While H pylori is not a spirochete I think it does have the flagellated proteins associated. I think this is a common infection and could be one of many reasons for a reactive p41 band.

Melanie I agree with SFmom that after IVIG symptoms can definately increase. We have seen it too but after a few weeks things have settled. I am NO EXPERT but I believe in the high dose IVIG and then waiting a few months before retreating to see how things settle. We have been doing monthly and my daughter has really improved but after each infusion we noticed her symptoms worsening some. By the last week before her next infusion things would be really good and then we would go in for another treatment just to stir it up again. Knock on wood, but my daughter is doing well and I plan on waiting several months before deciding to do another ivig. I understand this may not be the case for everyone doing monthly but FOR US this was the trend. Please hang in there! We all know how very hard this is and are really pulling for you guys. Take care Kim

I've noticed too that topics are being removed. Does anyone have any insight?

Dr T we all need to hear this again? Is this fixable?!

I just wanted to add a little "me too!" to the discussion. Buster your recap hit home here as I remember when my daughter suddenly became ill about a year and a half ago at the age of 5. I really never thought anything was wrong untill that age. She was ticcing and suddenly became very fearful of windows, doors, any loud noise and feared that people were coming into our home while we were away to shine our door knobs! It was so strange and every doctor we saw just explained that sometimes OCD just comes on suddenly out of the blue and that we should try prozac and counseling. We did try both but it never made any sense to me how a normal child can suddenly go nuts...I pressed neurologists for SOME kind of blood work...anything! I too thought maybe even a tumor because it was just out of no where. No one ever mentioned PANDAS and we were told it was just a chemical imbalance. I hesitate to post an update on our daughter because it is still early in her treatment but for the sake of others I will share our experience. It has been 10 wks since her first IVIG (low dose) and 6 wks post her second (higher dose) and 2 wks since her last treatment (another high dose). She has had 3 in total and over all is doing very well. Mild if any OCD remain and still more persistant but mild tics. It was very bumpy especially after the first two treatments but this last month has really been better. I feel like we saw worsening of symptoms initially after each treatment followed by improvement. The last ivig seemed to have less of this and have settled a lot of her tics. I am comfortable saying that she has made good progress but I am hoping for more improvement as we get further along. We are doing monthly ivig with Dr Bouboulis and he has been really great. He feels she will beat this and says we will continue treatment untill she is symptom free. I am optimistic that the ivig is doing its job since she recently had a cold followed by a stomach flu and we did not see an increase in symptoms. I watch her very closely for tics because that is her main symptom now but my husband has a much more casual approach and says he thinks she is almost symptom free! It is a good sign because he has seen her at her worst. I am so hyper focused that I am not satisfied with the slightest blink. Hope this helps anyone else trying to make decisions. Best to all! Kim

Good luck in chicago wendy I know you guys are going to be fine as you will settle for nothing less! I just want to add that wendy really believes in these treatments because she is seeing the results at home. She may come across as "harsh" but I think she feels that if we are brave and sometimes bold then other parents will be inspired to give it a shot too. I am seeing real progress in my daughter too and want other parents to know that its working for us.

Great to hear things are moving forward. So glad Dr T is coming in to help. We are all thinking of you guys.

Michael My thoughts...in a crisis pex can provide more immediate relief then follow with ivig to support the immune system. Pex would get the bad stuff out and in a sense you could start over and give the ivig less work remaining. I am not a doctor and we have not done. Pex but are doing ivig for my daughter but I would consider it if she needed more immediate relief. Its so easy to hand out advice but tough when you are the one making the decision. What does dr T tell you to do? Has he seen your son at the hospital? If you want to start with ivig Dr Bouboulis in CT isn't too far from you and is very easy to work with. You could certainly call him for some advice too. Good luck.

I have no idea where we would begin but how about an ivig study. Maybe the supplier of Gammaguard or Gammunex could help.

Both. Her next ivig is wed next week. I will upadate when I can. Thanks again for asking.

Hi faith thanks for asking. She is much better! I hate to say that in fear of jinxing her but the past few days she started improving. Today was a very good day for her. I have a few ideas why this has happened but am not sure which is correct. Can't post on it at his time.

Dr T I also often wonder about the prevnar vaccine. The original manufacturer (I believe is wyeth) must have done efficacy studies on healthy vaccinated children right? Do we know how long it is effective? Kim

Dr T Thank you so much for all your dedication to this illness and helping our kids! You really are a wonderful doctor and also very generous with your time. This write up is a first and addresses some of the many factors in pandas. I wanted to throw something into the mix because I think our personal situation is pretty common in pandas. Let's say a child's first episode is missed completely. A child gets strep throat, is taken into the pediatrician, rapid test is positive so abx are prescribed. However, the pandas symptoms in the young child is completely missed and written off as behavioral. Perhaps a mild eye blinking tic is seen for a few weeks and some mood issues. Parents and pediatrician write it off as a "phase" and the child naturally recovers on their own from the first episode. Then a year later the child is hit hard with the flu and has their first major pandas attack. By now throat culture is negative and titers have normalized. I also wanted to mention the articles SFmom has posted a few times regarding kawasakis and its link to strep pyogenes. Kawasakis kids do not have raised titers yet have the strep toxins. The articles sfmom posted explained how these toxins can actually deplete the immune system so to speak and I wonder if that is why some of these kids have low iggs and are failing the pneum strep serotypes. Perhaps the kids in your pandas category 1 are easily diagnosed before this happens to their immune system and it is actually a phase in the disease as opposed to a category. Maybe the kids in category 1, if left untreated would ultimately fit in to the second group. Difficult for me to articulate these thoughts so to put it simply, a lot of us parents are wondering how do we really know when the strep has been eradicated. If it has the ability to go intercellular, deplete the immune system which maybe inhibit the body's ability to mount a response to the titer... I just think it is real hard to really know which category of pandas a child fits. I hope this post makes sense to someone other than myself! Thanks again Dr T Kim (claire's mom)

EAMom Ok, I really want to understand this...if a child is a carrier, can they be cleared of strep? Or does it just keep coming back? How does that affect your pandas child...being around a carrier? Kim

Peglem So what if the child is a carrier then? I guess that confuses me too. As a carrier, my daughter tested positive for strep w/o having an active infection. It really confuses doctors when that happens. A 5 day steroid burst improved things for as long as it lasted. She got sick immediately after the 5 days though. She did not test positive for strep at that time (she was on full strength abx), but the burst coincided with cutting molars and dental work and her first period...so I'm not sure what caused what.

So your sons throat culture was still positive? That is very upsetting and I hope other parents here chime in on this but I don't know if steroids are a good idea if he still has an active infection. I am NO expert so talk to some other parents but I am so glad you got another script for antibiotics! Stay on your pediatrician about continuing the script and even consider augmentin extended release. High dose if the regular stuff doesn't help. You are on the right path now and don't back down. Your gut was right all this time.

Have you thought about doing a phone consult with Dr Kovacevic? He has years of experience with PANDAS and may be very helpful in directing you. Have you looked at his website? There is a lot of good information there and has the email address too. Also you could find a local immunologist to do a complete work up on your son. It's tough to find a doctor who believes in PANDAS and also treats with IVIG but if you could find a local doctor to at least consider trying a high dose long term course of antibiotics it might be a good start. Really, don't waste another day... we all know how you feel. Days can be so long and hard when you are watching your child struggle but once you have an plan of action you will feel better. It is all too overwhelming at first but getting the ball rolling is the first step. If I were you I would start now by emailing Dr Kovacevic tonight. You can go over your sons history and request a phone consult. He is usually good about responding quickly. Tomorrow...call local immunologist and see about getting an evaluation for PANDAS. It may be tough to explain the situation with the staff taking your call but be persistent and even request that they speak with the doctor about doing a PANDAS workup. They can call you back with the doctor's response. That way you can check that doctor off your list if they are not open to PANDAS treatment. I hope I have not come across as "bossy" but I know when I am in crisis mode it is hard to make decisions and take action so it helps to have people tell you what to do. Good luck and dont give up. You sound very discouraged but I think you will feel better once you make some appointments. I dont think you said where you lived.You MUST find a MD who understands PANDAS even if this isnt his issue you must rule it out.These symptoms sound very familure to many of us .I agree 10 days is not going to do much .He has strep so he has probably had it for a while.Dannys tics started around 9-10 and he had strep then too we just didnt know it .He made facial grimmicing throat clearing,handwritting was horrible,OCD was off the charts.Oh the weird laughing is sooo annoying(he had that too)We understand,you must find the right MD as soon as possible Please dont wait. Keep us all posted a god bless you both Melanie

My gosh, your post just makes me sad. I am so sorry for you that your son has been struggling with this illness for so long. Maybe try to find a good PANDAS doctor to help you. There is a thread on doctors who have helped with PANDAS. It lists many doctors around the country who have been helpful to other parents. Tell us where you live so we can help guide you. Also don't be discouraged that your son didnt respond to one short course of antibiotics. It takes a long time and sometimes much more than just antibiotics. You will find a lot of useful information on this board and many parents have recovered there child. Good luck to you and keep us posted. also check out pandasnetwork.org there is a lot of useful information on that website!

Faith, Dr Bouboulis has suggested monthly ivig for six months. He typically doesn't do as high of a dose as Dr K but feels ivig over a longer period of time is beneficial and is willing to up the dose periodically if needed. Yes, we saw relief in symptoms after each steroid burst. This is the 3rd steroid burst. He did a 5 day then tapers the dose over time. He is a very good doctor and not extremely aggressive and felt the steroids were harmless in short term use to help get us through the rough spots. I don't think he would prescribe them otherwise.

oops...sorry faith my message was incomplete before i posted. Anyway after the first ivig i feel like things got real bumpy. I started seeing more tics but the ocd has was not severe. my daughter's main thing was fear around the house. Afraid to go potty alone, afraid to go upstairs alone, also had bad words stuck in her head. When i started seeing more tics i called dr b and he called in the prednisone to provide relief. He said it suppresses the immune system and therefore would have less bad antibodies. She responded very well to that steroid boost and tics became very mild again. She had her second ivig about 2 1/2 weeks ago and again more tics. The OCD/anxiety does seem to be gone. The words in her head have been gone for a couple of months now and she is no longer afraid to go upstairs or potty on her own. She is moving freely through the house...dressing herself upstairs and brushing her teeth on her own. I called Dr B again about the increase in tics and he called in more steroids and said it wouldn't hurt to try them once more to relieve her.

Faith, This is my daughters 3rd time on steroids. The first was back in september when she was first seen by Dr B. He was giving them a try sort of a diagnostic tool. At that same time he started her on antibiotics. Things improved overall back then and she was doing very very well...very few tics and not much OCD either. I was thrilled but decided to go forward with the ivig. Thats when things go

Thanks everyone for your replies. I wanted to go on yesterday and post but had trouble logging into my account. worried dad, what does Dr. K tell you? I am sorry you are still struggling. Maybe just more time or more ivig? How frustrating you must feel. I know because I remember thinking ivig was going to be this instant fix for us and was shocked my daughter wasn't all better the very next morning. melanie, it does sound like your son responded to ivig and maybe he does just need more and with time he will recover. Good luck with this next treatment and keep us posted. EAMom, i hope you are right when you say that maybe the ivig has stirred things up because we are definately seeing more than we have seen in a while! I think dr k has told many that with each ivig there is a "shuffling" of the immune system and it may take 8 to 12 weeks to see a settling.

Melanie I am so happy to hear things worked out for you! Good luck and keep us posted. Kim

So my daughter presents mostly with tics mild OCD/anxiety. She had a small dose IVIG about 6 weeks ago and another larger dose 2 weeks ago and her OCD/anxiety seems to be gone...for now but her tics have gotten much worse. Dr B did a steroid boost earlier this month and she improved but as the dose was tapered down tics returned. Last week she came down with a mild cold and tics started flaring. Dr B started another steroid taper 4 days ago and she still has not improved. Right now I don't know if this is happening because of her cold or if she just isn't responding to IVIG. Her cold was very mild so its hard to blame all this on the virus. She seemed to respond so well in the beginning to steroids so we were hopeful about IVIG but now I just don't know what to think. Any of you think the IVIG could be making things worse temporarily? Anyone have any experience with IVIG and tics and how long it took before you saw improvement? Really down these days so any thoughts appreciated.

Thanks to you and your father in-law Wendy. I am going to forward those articles to Dr. Bouboulis. This research is very important for doctors treating PANDAS.