beeskneesmommy

So sorry. I know how frightening this is. Unfortunately, we have been at this for several years. Where are you located?

DS6 was dx with Strep:PANDAS at age 2.5. In retrospect he began showing symptoms much earlier. We see a team of specialists, among them, Dr. B. We first went to him 7/11 in order to get on stronger abx and look at the allergy angle. DS had had an ongoing sinus infection most of his life and at age 4, Myco jumped on board with the Strep problems when he had his tonsils out and contracted walking pneumonia, presumably during the surgery. In 7/11 Dr. put DS on Azith and Augmentin combo. This changed everything with the addition of having had a T&A. He has gotten progressively better over time and I know it is the Azith d/t past experiences with it prior to seeing Dr. B. We just had IVig to try to eradicate the last lingering symptoms, but many people may not have opted for that given how well he has been. Not 100%, but so much better than when we landed in Dr. B's office during the summer of 2011! He is on track in school, doing well.

We see Dr. L - my son, age 6, had 1st IVig w/her 4 wks ago. We also see Dr. Bouboulis, Dr. Elia and Dr. O'Connor.

No, you shouldn't rule it our w/ titers returning within normal range. However, some doctors will do so. Make sure that you are seeing a PANDAS specialist. He/she will know this but there are plenty of pediatricians and even CDC docs that will r/o d/t normal Strep titers. If this happens, keep digging and move on to another doc.

I suggest that you call Dr. K for a referral to a PANDAS-friendly ENT. Here's is the link to his website: http://webpediatrics.com/practice.html

Beth Maloney's Site has a couple in MN: http://www.savingsammy.net/providers.php Pandas network is a helpful site: http://pandasnetwork.org/ Dr. K in Ill. has a helpful site as well: http://webpediatrics.com/pandas.html These are just a few that may help. there are also several FB groups where you can get support. If you have the ability to travel, get your kiddo to a specialist as soon as possible. It is very hard to get proper treatment from family docs or pediatricians. It is important to tackle it EARLY. The chances of recovery are much greater if you get your kiddo on LONGER TERM (more than 10 days and at the very least, 30 days, although I would opt for longer than that with active, recurring Strep) antibiotics in the early stages of PANDAS. i am sorry that I have very little time right at this moment, but I would be happy to help you further if you would like to PM me. Your child can recover from this! You just have to go into strategic, aggressive, battle mode and don't let time slip by. I believe that in the beginning of this illness, this is a key factor in recovery. You are NOT alone and there are many people who can and will help you! Best, Kath

never heard of this - I get freaked out re: anything bovine d/t prions. I would research carefully prior to using it. How is it administered?

NO Flumist - my DS6 reacts to other kids who have had it within 10 days when he plays with them. We used to get the flu shot to protect our son (he has not had it himself for 3 years as he had a PANDAS response to it). However, I always get a hideous reaction to it that lasts for up to 48 hours. For this reason, I have decided not compromise my own immune system, as I might invite Strep or something else in, and expose my son. I am prone to Strep and it is believed that I had a PANDAS as a child as well. I believe that we should question the flu shots (and other vax) as there is an awful lot of stuff in there that is not necessarily brought to our attention.

These behaviors are PANDAS related. My son used to spin and spin during flares. The last time was last Spring and his teacher commented on it. He was 5 at the time and tiny toddler behavior could not be responsible. It's a sensory piece. As time has elapsed and he has done better w/abx daily (for 2 years), this behavior has fallen off.

I feel very sad when I read this. I am sorry. My son is only 6, but his vocal tics seem to be getting worse with age. Breathy exhales and thraot clearing started last April and have waxed and waned since. He has just had IVig 2 weeks ago, and although they seemed to be falling off a little, they were back in full force last bight. I cringe to think of how he will be treated by his peers as they get a little older and notice the differences. Hopefully, the impact of the IVig will continue to help him improve with time...but for you - I hear your sorrow...

Hi. we just had IVig at Dr. Latimer's. We were advised not to stop the abx. What really helped w/the side effects was to have steroids and Zofran (anti nausea) IV with the fluid bag just prior to the Gamunex. DS6 was also given Benedryl and Tylenol orally. After the IVig, we kept up with alternating Tylenol and Ibuprofen every 4 hours and oral Zofran every 8 hours. We continue this routine throughout the IVig process and for 3 days afterward. He had headaches on the day after IVig was over, but they lasted for several hours and were gone the next day. I really liked the idea of preventative meds instead of waiting to have nausea or horrendous headaches and then trying to reverse the side effects. Hope that helps, Kath

You should absolutely get with a specialist ASAP! The wait is 2+ months for them, usually, so I would advise getting after it today! IVig is a personal choice. For us, abx helped a lot. Our son was really sick for a while and after 2+ years of abx, he is on track with manageable symptoms. However, we could never stay at that 95-100% spot. Whenever he was exposed to something he would flare. He just had his 1st (and hopefully, only) IVig last week. Our hope is that, at least for a while, his immune system will be strengthened and he will be pushed into what we call recovery and what others may call remission. We just felt that it had been a long, long time on abx and that it was time for a bigger gun. So far, so good.

@ARIEL, sorry, I thought that you said there were + bands and then a month later thru Igenex, neg. That is what I was referring to as inconsistency. We are similar with the age situation. Our son was dx at age 2.5 and has now just turned 6. In retrospect, I remember multiple fevers and hyperactive symptoms post fever as far back as 18 months. I also remember an illness that he had at 14 WEEKS that he and I kept passing back and fourth. I am pretty sure that this was his 1st Strep. Has he developed typically throughout? How long has he been on the Aug/Azith combo? My son herxed and looked pretty awful for the 1st 2 week or so, then after about a month, leveled off. I think you hav to go w/your gut on this one. However, if you can do it, a multidisciplinary approach is not a bad idea for PANDAS. We see 4 specialists, although none are LLLMDs, as we do not feel that Lyme is an issue, even tho his Igenex returned + a year ago. Whatever was there, if anything, is gone now, we feel. I hope things get better and I wish you well. You are welcome to PM me if you like. -Kath

I do not think that you should discount lab results. However, if the Igenex results are neg., that gives me cause to wonder. There is a lot of inconsistency in your kiddo's testing. why not have Dr. B run another test thru his labs that do the longer culture (similar to Igenex). They take insurance but do a more thorough job like Igenex. he draws the blood in his office for this. We had some + Lyme and Bart bands thru Igenex 7/2011, then had our son on Augmentin and azith daily for a year, then retested and they were neg. I have always felt that the Lyme may have been a false pos., but we bombed it with the meds anyway, as my son has always been solid Strep:PANDAS, and these abx would address the Strep as well. I KNOW that Lyme is an issue for PANDAS, so I am NOT discounting it. Retesting may be a source of further understanding. All of this being said, my son has had 2 rounds of steroids which he responded to very well, and now IVig on Tues. and Wed. of this week. He is starting to show some minute improvement in symptomology even thru the side effects only 2 days later now. If he had Lyme, I am told that these treatments would perhaps make him worse, not better. In addition, it is only fair to say that my son has come a long way over the past several years and is considered at this point a very mild case of PANDAS - just so we are careful not to compare apples to oranges. Each kiddo is different and you know yours best. Are the combo of Augmentin and Azith are moving your kiddo forward?

I think it is reasonable to pursue the PANDAS dx thru a true PANDAS specialist. The sinus infection seeming to be the primary trigger is a red flag. One of the things that made a huge difference for us was learning that there was a link betw. sinusitis and continues PANDAS symptoms. I suggest that you see a PANDAS specialist who takes this into consideration. Dr. Bouboulis in CT or Dr. Latimer in Bethesda, MD would be my recommendation; both if you can do it. Dr. B takes insurance but Dr. L does not.

Heavy and prolonged abx have taken my son very far. It is hard to remember how bad he was 2 years ago, because it has been so long since I have seen him like that. He has been on Augemntin, then Cefdinir for a year, then a combo of Augmenin 2 x D and Azith 1 x D most recently since the end of 7/11. He has had flares and we have done 2 runs of steroids. he has had excellent results that were pretty long lasting. He had a T&A 2 years ago, which kicked off a major acute episode, but I feel that in the long run, has quieted his symptoms as well. Were we to do it again, we would demand sterilizing abx prior to the surgery. He is fully functional, ahead of many of his peers academically, and socially accepted. However, he still has some residual symptoms of mild OCD, intermittent hyperactivity, very mild choreaform, a breathy vocal tic an separation anxiety in the morning when I drop him at school. These are things that we could handle and live with. However, even on the daily abx, he occasionally responds to Strep or other infections. Although he does not get infected himself, his antibodies react, causing flares that encompass more significant symptoms: chorea, increased tics, irritability, behavioral issues, hyperactivity and sometimes, "brain fog", which is the most disturbing symptom. These flares seem to occur less and less, but when they do, it is very disturbing and the world around him does not understand. This can lead to increased social issues at school and in the community. Because he is only 6, people do not notice most of his symptoms and you would not know he has PANDAS unless I told you. 6 year old boys do some weird things, normally! However, we feel that as time goes on, we need to try to eradicate these residual symptoms and most certainly try to calm the flares that come out of the blue for periods of days and sometimes a few weeks, then fade away. It is for this reason, that we are going to do a large dose of IVig next week. He looks great right now, no flares, but we know that they will come back, especially with flu/Strep season around the corner. In addition, he cannot continue on the current dose of abx indefinitely. The abx treatment is what has kept him healthy, and now we are attempting something more permanent. That being said, he is a very good candidate for success with 1-2 IVigs, but there is not guarantee. Some kids respond very well, some not at all and many do well for a period of time and go back for further IVig treatments. We have weighed the risks an we are giving it a shot. As one of our docs said "We would be doing him a disservice if we didn't at least give it a try". So, I can only speak for ourselves, but this is the progression of treatments and the options that we have utilized, and will be utilizing. Warm wishes, Kath