Suzan

She takes zyrtec, nasonex and 125 mg zith.

So my 7 yr old has been complaining that she feels hot inside. Tonight it was her left foot. She said it was hot inside (not to the touch) all the way pas her ankle and stopped. She's also complained of feeling hot inside in her stomach too, maybe other places as well, I can't remember right now....Anyone experience this complaint from their PANDAS kids? Any ideas what that might be about? She's super emotional right now, lots of other strange pains. She gets a tingly feeling in her stomach when she's contemplating doing something she's scared of (going down the water slide for example) but this is different. Hot like a fever (not a burn) but from the inside. Susan

I guess it's going to be hard to be brief but I will try. We have a lot going on right now and I'm feeling very overwhelmed. But I would like more research to be done and more help, knowledge and understanding so this is why I am interested in helping if I can. dd age 7 She had her first strep infection at age 16 months. After that, she started doing strange things like sticking her hand down her throat until she gagged and would laugh crazily, pull out her hair and laugh. Then over the next years, she developed sensory integration disorder, didn't want to be touched, horrible temper tantrums, AHDH, separation anxiety, fears, worry, sensitivity to sound, bedwetting, pain in her legs, feet, hands, general malaise. History of ear, sinus and chest infections, tonsils and adenoids out, ear tubes. First obvious PANDAS episode was in January of this year where she went a little crazy in class and was mocking the teacher, pulling things off of shelves, refusing to obey, laughing. This was when we found out she had strep and the start of learning about PANDAS. dd age 6 She had her first strep infection around 12 months. She has a history of ear and sinus infections, ear tubes at age 2. Very impulsive, couldn't sit still, inappropriate touching of others, clingy, needy, separation anxiety, picky eater, age regression, worry about death, fears, trouble sleeping, food restriction, loss of taste buds, hand writing deterioration. She was so small and light that I was very worried about her by now. She had V. strep 4 times in a 5 month period. Our Ped neurologist suggested PANDAS but due to normal antibodies, thought maybe some other type of neurological autoimmune condition. Both have waxing and waning symptoms and they present themselves in very different ways. They are now on antibiotic treatment and improving but still struggling. DD6 seems to be doing better than dd7 right now but it's a moving target. Susan

WOW! Super Great!

They do not have a treatment for PANDAS in it other than antibiotics, plasma exchange and IVIG recommentation and I emailed to ask their PANDAS protocol (said they had one not listed in the document) and they never sent it to me. There is some interesting stuff in it about autoimmune diseases in general but I was very disapointed in the PANDAS section. I was leary about buying it but my mom wanted it for her own reasons so I sort of bought it for her. Susan

I checked our vaccine reccords this morning and my dd's also were vaccinated 4 times by the age of 1 yr. Susan

Buster, out of curiosity, which did your dd "pass"? My dd was not low on 23F and 19F and 5 was a 2.0. Susan

I thought it would be a bad idea to vaccinate for strep in PANDAS kid??

So we got our immune tests back yesterday. Everything normal except: Low normal IgA - do we know the significance of this (if any) yet and how low would rule out IVIG? I tried to search on this but could not find any standard, maybe it's just not known right now. DD7's IgA is 37 with a low lab range of 34. Also, she failed her streptococcus pneumanae test, 11 or 12 out of 14 are low. Trying to figure out what to do now and find a good immunologist who understands all this. I will travel if I have to but hope to somehow find someone close to home (Charlotte, NC). Susan (dd 6 is watching and wanted me to post that )

Thanks so much everyone! Really great discussions! Susan

Well, this is my kids for sure. They don't get the sore throat, fever etc. either. And now they just get it in their vagina! Well said about the doc's and what they know or don't know....when you think of it, it's pretty amazing what they have figured out so far. I sure hope we find out more about PANDAS soon! Sam.... I got strep when my dd at 16 months got strep the first time and I had it back to back for a few months! This is when she started pulling out her hair and acting all nutty! I had so much pain from that strep. I remember that very well. The pain in my legs, arms, torso.... Susan

I get the test results back tomorrow. Very anxious about that! I don't understand what the strep pneumonea titers is all about, I'll have to talk to you about that again. Maybe we are on to something here with the strep B, or maybe it's just a dead end. It is interesting though that you had B infections and lot of strep A too. My GYN said it didn't matter too.... I find it odd as well. I think my kids react to strep when just around it but I'm just not sure yet. They are still struggling at home. Maybe it is because of the strep B. It will be interesting to see if they improve after my antibiotic round anyway. I'll pay attention to that.

Are there others out there who have had Strep B? What have your experiences been regarding how it affects the children? My girls get recurring V. Strep A not B. I found out yesterday I am a carrier of Strep B. My doc put me on antibiotics. I'm trying to determine how important it is to ensure if this round knocked it out. My doctor does not want to retest since it is his belief if I have no symptoms it's not important. Does anyone have any experience with V. Strep B causing PANDAS episodes in their children? If they are not getting the B strain, does it matter if I have it? Dr. K says only Strep A has been connected with PANDAS. Dr. Cunningham says that all strep are related and it could be causing issues. Thanks! Susan

Here is his website..... I hope this helps. http://www.webpediatrics.com/pandas.html

We use a shower filter which is supposed to filter out a lot of the chlorine. I know it helps me to not have itchy skin, I think it works. It does not help for a bath though. My Step-Dad runs the bath with all hot water and let's it cool down to the temperature that is confortable. He says the chlorine will disapate as steam. I don't know if that is true or not though.... http://www.inspiredliving.com/shower-filters/ I bought him the bath filter but he said the water did not want to flow through it nicely. Susan

Good luck and I hope it all goes very smoothly! Keep us posted.

Yes, we should have the results back on our next appt which is on Wednesday I think. I will try to get copies of the results so I can post them if I have questions about it. Susan

My daughter has leg pain and joint pain. She's had horrible pain at night especially and has had episodes where she is unable to walk. The doc's could never figure out what was going on. She'd wear a boot for a week and then it would be mysteriously better. She will complain of pain in her fingers, feet, knees, etc. It gets worse during an episode and has gotten much better after being on antibiotics. I have recently gone to get some immune testing done and he is testing for rheumatic stuff. I'll post the results if there is anything interesting next week. Susan

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OK, I'm really enjoying the discussions of the connection between PANDAS and autism and I too am interested in hearing if S. Swedo's interest in Autism is related. I am a member of another special needs board since my girls were little. I find myself thinking PANDAS for some of these kids who have autism or autism behaviors. I've started thinking over the past week that everyone with a diagnosis on the autistic spectrum should be given a round of antibiotics as a trial, especially if the symptoms in the child seem overly similar to PANDAS. My dd (6) has (or has had) conditions found in autistic children and her Dan! doc has considered both girls on the spectrum. Of course, now they are improving so much with the recent changes we've made... Between the two of them the list goes on for a while. Sensory Processing Disorder Hand Flapping Malabsorbtion Mitocondria markers Seizures Allergies Pulling out hair Bedwetting Self Stimming Hyperactivity Impulsiveness Issues with food Gut inflammation Obsessions Sleep disorders There's more but I either can't think of it or can't describe the weird behavior. My girls got strep at a very early age (before 16 months and 12 months). I just wish I had known about PANDAS earlier. I would have known right away that my daughter was pulling her hair out and gagging herself and laughing because of her strep or my other daughter would have horrible tantrums with no sound. Maybe we would have had an easier life so far. Now I'm just rambling.... I know the original post was regarding whether it's dangerous to not treat. I know I can't answer that. But I wish so much that I could have treated earlier. Time, money, pain, suffering, emotional damage, exhaustion..... in no particular order. Susan

Thanks you two. That does help. I think I will up her dose for a week at least and see if that helps her. Susan

She's getting sick again. This is where I get confused. I know I've posted about this before but she's on 125 mg of zith right now. She was on 250 mg for a couple of weeks and I've reduced it maybe 1 1/2 weeks ago. I know moving it back up won't get rid of her virus, if she's got a virus. But the antibiotics could protect her brain from the pandas symptoms? Is that right? Why do I still feel so confused about what the antibiotics are doing? She's creeping back to falling down and hurting herself a lot, pain coming back, emotional outbursts, indecision, can't think. She says her throat hurts, head hurts and she's got a few canker sores. She's worried and upset tonight that her future husband will want more people at her wedding than just me. BLINK...she's 7. Stuff like that. Susan

This doc (and Diana P. too I think) said that the antibiotics would be OK to be on while doing these tests. I totally agree with you about hard to believe about his confusion. Also, if the AARDA says it's a real autoimmune disease, shouldn't they all have at least heard of it? That really confuses me! http://www.aarda.org/research_display.php?ID=47

I was thinking that yesterday too, about needing a doc in each field... Let me know how your immunology appt goes in Sept. If you like her, we will switch over. There is a woman in his practice that was recommended to me after we made this appt. If I decide this guy is not up to it, I'll try her too. So glad things are going well for you after the PEX! Susan

He is on board with PANDAS, but newly, and he is pretty anti-vaccine, but doing things like spacing them out, giving one at a time, making sure you aren't sick at all...... maybe it will just take a while to work on him.... NC has a religious waiver that I may have to do but that makes me so nervous since I'm basically lying, but of course for my daughter's health I would lie..... Susan