bubbasmom

I don't know if my 12 year old will ever be the same again. But I know he has ruined every friendship he's ever had. Its so sad he has NOT ONE friend. I don't know how to fix that. And he started Jr. High this year so it really sucks, he's kind of ruined his reputation at a new school too. We did IVIG 4 weeks ago. For about 4 days I thought it was going better. Now, it seems like we have started from square one again. We're getting blood tests done today I'm afraid he's been re-exposed.

Anyone notice a 'change in symptoms' mid way? No worse No better, just different? My son is 4 weeks post IVIG, can't say that I'm very please with the results. Kind of seems like a waste at this point. But we have notice something. His primary symptom started off as severe rage. Severe enough to be on Risperidal. The OCD stuff, tics and whatever were more secondary for him. Probably some of the rage came from OCD, kind of a my way or the highway thing and when it didn't go that way we saw the rage. His tics, thank God, were only while he was sleeping (very pronounced jerking when he slept) an then the ever irritating knuckle popping. But I can live with that. Now, the rage seems less, still happens but not as dramatic when it does and its shorter lived. But the OCD, OMG!!! So those of you that have dealt with OCD as the primary symptom know how controling that is of your life. He was going to school very well, now he's not, was going to bed on time, now there's always an 'excuse'. And his big thing is 'that's a waste'. Waste of money, waste of a drink that doesn't get finished, waste of time, very irritating to him. So seriously here's the point I'm at, I'm having a big huge pity party!! I'm tired, frustrated, discouraged, and the thought of going through the holidays with this is BEYOND my scope right now. Any ideas???

What is ERP? There is a type of OCD called "bad thoughts" OCD. It is treated with ERP therapy. If you have an old therapist that is used to anxiety, be sure to ask if they are specifically trained on ERP. Regular talk therapy does not work for OCD.

Thank you. That was easy enough. I thought I was going to have to do some work here, but you did it for me! I can do those, but please don't feel stupid- just ask whenever you don't understand. CamKinase aka calcium/calmodulin Kinase II aka CamK - is a substance found inside of nerve cells that facilitates nerve signaling. Its importance in PANDAS has to do with the "Cunningham Test". Dr. Cunningham (University of OK immunology lab) is doing a study of blood serum from PANDAS and Sydenham's Chorea (SC) patients for what she thinks may be markers of those conditions..ie..high CamK activity and an assortment of antineuronal antibodies. DAN dr. Defeat Autism Now is an organization that seeks to find biomedical treatments for autism. A DAN doctor has training in and knowledge of their treatment protocols. PEX- short for plasma exchange- a procedure that filters antibodies out of the blood, and I think the exchange part is adding donor antibodies back in. Plasmapheresis is just the filtering of antibodies from the blood.

Is there a post on here somewhere that explains to us 'rookies' what terms mean like Cam Kenas or whatever it was, and Dan Dr., and PEX, etc. I read here and post here a lot but feel kind of stupid when it comes to these terms.

OH MY GOSH I LOVE THIS WEBSITE!! There are so many things that happen its so hard to 'document' them all. Just YESTERDAY my son stood up, and immediately went into tunnel vision. He just kinda of yelled out "hold on what's going on?" It was really scary to him. It only lasted a short time. I dismissed it as the medicine or he stood too fast. He is like 3 weeks post IVIG, and on Risperidal and Zithromycin. That's very interesting.

I live in St. Louis Missouri, you may not be familiar, we're no metropolis but it is a big city. We have 15 major hospitals just within the actual city limits and that's not even counting the surrounding counties. Yet I had NO ONE to treat my son. I ended up going to Chicago, then Dr. K in Chicago 'walked' our regular pediatrician through it. My regular pediatrician found a HEMOTOLOGIST to do it. This guy does IVIG for other diseases. It was actually at a cancer treatment center where we had it done. So if your pediatrician is on board, see if he can talk someone he knows into it. Pediatric cancer doctors are very compassionate. Dr. K in Chicago does phone consultations, then he could walk your regular doctor through it.

That thought has SERIOUSLY entered my mind several times. Enough I talked to my pastor about it!

DeAnn, my son does show signs of improvement. No where near healed but is improving. Couple of 'mini fits' but comes under control quickly. But we still have him on Risperidal for rage. So we have a long way to go.

Yes my son has. Our dentist says its one of three things, the strong antibiotics, the bacteria, or kids who have a lot of strep tend to be MOUTH breathers. When you are a mouth breather at night you have no saliva to move the bacteria on and it just sits there.

They have made kids 'home bound' for way less serious issues than this! In homebound each district will have its own requirements, we're still fighting it a bit but I do know the rules. Our district here in St. Louis says the homebound teacher must spend at least 10 hours a week with the child. My son goes part days so he only does part of that. They HAVE to supply you a teacher to bring the work to your house. You need to go to your principal first, district next and they will want a letter from your doctor. I have a friend that was on homebound just because her child thought school was a waste of time. There's all kinds of reasons. And OCD, doesn't matter how it came about, is a reason to home bound. Then you still have a regular teacher and you're not having to do it. Because frankly, you have enough to do. And if the teacher comes and your child is not up to it, so be it. We did eight weeks and getting ready to extend it six more. Keep in mind if you take him OUT he WILL flunk that school unless you transfer him to homeschooling or whatever. Homebound HOLDS his place at school.

Please don't tell me you think this goes on past childhood! I can't handle that. I thought they had told me pediatric meant he'd outgrow it.

Since the P stands for pediatrics, I'm curious if anyone that still visits this forum has a child that has past the pediatric stage and this just goes away? My other thought is, just what makes this a pediatric event? Does it have to do with post-puberty children not getting strep, or does it have to do with hormones developing during puberty? My son is 12, I guess I'm a skeptic, even though he had IVIG three weeks ago, I just will never be comfortable. I will always feel like we are one infection away from PANDAS. Even now, I'm not even sure the IVIG worked. Will I EVER relax again? My son gets serious serious, life threatening RAGE with PANDAS. Right now he's 12 and 140 pounds, I can't imagine him being 15 or 18 and maybe 200 pounds and me try to physically restrain him.

Just wanted to make sure you found someone because Dr. K is in Chicago and VERY good.

My son is 12. This is his second BIG PANDAS episode. You know someone explained to me, its like asthma. You always have asthma, but then you also get asthma ATTACKS. So my son has had two big PANDAS attacks, but probably had PANDAS since maybe as long as age 3 1/2. Lots and lots of strep when he was pretty little. By 18 months had already had enough strep that they wanted to take his tonsils out but didn't because they put him on 28 days of Augmentin and the strep quit coming back for a couple of years. Hey how old is your pandas kid

So our pediatrician of 15 years, who I thought was completely on board makes a bonehead statement that really crashes my confidence in him! Even though HE has given us tons of antibiotics, even though HE has put my son on Risperidal, HE ordered the IVIG at Dr. K's request. He tells me on the phone last night 'yeah I told your son's principal, if there really IS such thing as PANDAS he really does fit the bill for it.' What the heck??? So all this stuff he's done for us, now 'IF there's such thing?' FRUSTRATING FOR SURE!!!

That's my question too. But a nurse practicioner told me yesterday we'll only know if we have the blood tests done. There's like 3 titers. One for current strep, one for strep upto 3 weeks out, one up to 6 weeks out or whatever. So I'd say blood tests. Denna

We found a Hematology Office that agreed to do IVIG. No hospital stay, so way cheaper I assume. It was in an office that does infusions for kids with cancer and other immune disease. It was actually at a cancer center. Just a thought. It was 11 hours one day 9 the next but not inpatient. We're in St. Louis. Denna

I think you and I have emailed before. I think our kiddos are similar in symptoms, with the intense fits of anger being the strong symptom along with other things. We too did IVIG. Its been 16 days since IVIG. I really think you could market the 'I paid big bucks for IVIG...' shirts! We have seen improvement starting last Wednesday, more interest in school etc. But just found out yesterday my son was exposed to strep again! The same kid he got it from that triggered all of this. So I took him for a strep culture before we upped his antibiotics and my son has a low grade fever and a sore throat. If we have to start over from day one on this PANDAS I will pull my freaking hair out!!

Beth Maloney had emailed the list of doctors to me so here is the copy of the "Texas" section. Hope this helps. Denna TEXAS Dr. Charles Goebel (diagnoses but doesn’t treat) Pediatric Specialists of Plano 3405 Midway Road Suite 650 Plano, TX 75093 (972) 473-7777 http://www.facebook.com/l/582dc;www.psopkids.com Kazil Majeed (neurologist) *** 7777 Forest Ln # A307 Dallas, TX 75230-2533 (972) 566-8600 Debra Phelan, Ph.D. Clinical Psychologist 12820 Hillcrest Road, Suite C218 Dallas, Texas 75230 (214) 848-2686 Dr. Bambi Hoefner 3275 West Alabama Street SUITE B Houston, TX 77098 (713) 524-4477

Poster name: Denna Location: St. Louis, MO Childs year of birth/present age/gender: 1997/12/male Brief history of symptoms/when they started strep 9/1 just did Keflex thought nothing of it never dreamed PANDAS would happen again, H1N1 likely 9/7, PANDAS started about 9/11 Any previous diagnosis, i.e. autism, asbergers, pdd No previous dx of anything although I've thought and studied asbergers for a long time - socially fits that mold. PANDAS symptoms; and order of prominence, (OCD?, tics?, etc.) two huge episodes, one in 2007 one in 2009 - rage is the biggest issue. Fits of rage that involve breaking things putting holes in walls, threatening himself, I mean 'call the cops' kind of rage, cursing during the rage doesn't curse otherwise, the evil look, OCD in terms of it has to be his way or it can't happen even if it means what time we leave the house, where we park, etc. Very minor tics, knuckle popping, hair rearranging, HUGE sleep disorder, enough to keep him out of school, takes 2-4 hours to fall asleep, can't wake up in the morning, nightmares all night, tics while he sleeps. Severe ADD with last episode enough to start Concerta. Results of any testing done: i.e. Aso & dnase, strep results (always positve? always negative swab, but Positive culture?, immunology results, etc. Strep tests negative including culture, but after PANDAS began, titer said he DID have strep in that 3 week window of 9/1. No other testing done.Camk number (if done) Antibiotic use history: Keflex 500 mg bid, switched to Augmentin at the advise of some = symptoms got a little worse, back to Keflex. Azithromycin 500 mg 1 week, then 250 from then on at the advise of Dr. K in Chicago IVIG two day infusion 11 hrs first day 9 hrs secondDoctor and what protocol they suggested: Regular pediatrician said 'find someone that knows more' but was open to anything we offered him, Dr. K in Chicago, recommended IVIG.Other doctors that were helpful and why: St. Louis Children's Hospital ER in 2007 discovered strep wasn't gone when we thought it was, they orginally said PANDAS yet were completely useless in treatment and actually took custody away from us for 72 hours to make sure he was 'safe' so they locked us in a room with a guard WITH A GUN for 72 hours, then released us after one neurologist checked him out and a STUPID psyciatrist. Steroid trials and detailed experience: Steroids makes him nuts on a good day much less while in PANDAS mode. Special section on those persuing IVIG or PEX and what the details were, updates could be added here too. Did the IVIG, about day 10 noticed improvement, day 11 started Concerta to help get back into school work. Now 11/11 and things are fairly good - hate to commit to that statement but appears okay. Additional therapies sought: PRAYER PRAYER AND MORE PRAYERSupplements used: Meds used: keflex, augmentin, keflex again, zithromax, melatonin for sleep, Concerta just as things started getting better helped with the learning disability that kicked in.Any 'other' pertinent info: willing to talk to anyone who needs an ear to bend they can email me at dkriese@sbcglobal.net and I will give them my phone number

ONE MORE SUGGESTION, here's some websites.....e-pandas.com/id2.html is Nicco's story I thought was interesting, there is pandasfoundation.org the mother that wrote Saving Sammy is on there, and pandasnetwork.org the gal on there called me on the phone personally and meant so much to me.

Here's my deal, my son NEVER shows symptoms of strep. We always have him at the doctor for 'something else'. But here's the deal, if your rapid test is negative, move onto a culture, if the CULTURE is negative MAKE SURE you do the titers. There are a couple of diffent kinds and your doctor will know which one to do. One shows is there has been strep within the past 3 weeks, one shows like past 6 weeks, then another mayber shows further back. My son's last strep test was negative, culture was negative, after the PANDAS symptoms started we did the titers and sure enough it traces right back to those negative cultures. He had strep and the cultures were WRONG. What area do you live in? There are people from all over on here, but if we know where you are we can tell you about doctors close to you and also you might run into someone close by you. I'm in St. Louis. By the way, you'll be okay, it's a tough road but you're a mom! You are strong enough and DO NOT TAKE NO FOR AN ANSWER FROM ANYONE! You're in charge here, get used to it because if it is PANDAS (sounds to me like it is) you are going to get a lot of people that are very uneducated on this. Also buy the book SAVING SAMMY its good. If you need someone to talk to just to hear a voice email me at dkriese@sbcglobal.net and I will give you my cell phone number. I stay home and can talk during the day. Denna

So I had posted this question before but the same thing applies here as well. This is what I don't understand, PANDAS has to do with antibodies. So why would antibiotics come into play. Antibiotics are for infection, but if there's no infection, long term antibiotics is only preventative, correct? I'm really trying to sort this out. My son had IVIG two weeks ago, we MIGHT be seeing improvement, so I'm trying to get my ducks in a row for the future. I really want to never go down this road again. Also with antibiotics, that is no cure for a virus and viruses can trigger this as well. I'm confused!

You could start with getting his immune levels checked. The IVIG is supposedly what really works well if there's an immune issue as well. Since PANDAS is a clinical diagnosis (there's no magic blood test that confirms for sure) I think everyone of us has had the teeter-totter thoughts of 'IS IT - ISN'T IT'. But we do all know that there are some doctors more convinced of this than others. My son is in the middle of all of this with little improvement so I can't offer anymore than that.