Iowadawn

OK. Will play devil's advocate with this poll. The biggest issue I see is in the sampling. This isn't a realistic sample since you are not looking at all the kids that have had IVIG, let alone a random sample, I would venture to say the majority of the people who have had successful IVIGs have moved on with life & are not even members of this present community. The people still seeking to get their kids well will far out number the cured on a forum like this. Everyone, even though so many of us have been hanging on to our britches for far too long, Dr. K has an IVIG report coming out this Spring that is based on his experience in the last decade. Everyone can throw tomatoes at me now!! They will look pretty against all our white snow. Fire away. Dawn

The phenotype of the higher than average education/intelligence of the parents is noted by Dr. K on his website. My personal feeling is that this is due to the fact that people of higher intelligence/education are going to be more apt to keep searching/searching and end up finding themselves driving themselves or flying hundreds of miles to get to a doc. The financial well being of the family could be a factor seeking out or getting proper care. (And then the ones that do have a little extra end up spending it all- and then some- getting help!!) I so often wonder how many kids in families with humble means have children that end up "in trouble" because of a neuropsychiatric condition like PANDAS, let alone something a bit more understood. I don't know if I am making myself very clear. Any other comments. Dawn

LOTS of Denmark, and (Old eastern)Germany area ancestry in my ds.

Michelle- Prayers go with your family--safe travel & answers. We appreciate yours. If you think to remember inquire about the strep in the family situation/clearing prior to IVIG. I know your family is large. Dr. K just hasn't commented, though, we haven't asked him face to face. Curious. Dawn

Only positive on the (IgG) This is the Mycoplasma IgM 0.57 (nl < 0.90). My dd also has trouble eating. I have to watcher her eat every bite to make sure she chews right. It scares the ###### out of me because she's already very thin. Will definitely keep you updated. Can't wait to hear from Dr. T and see what he wants her on for antibiotcs and start them. I hope this is the answer. Do you also have Dr. T? Angela Dr. T - Our son's mycoplasma IgG was 3.9! (on what looks to be the same scale). The IgM was negative. He has had significant trouble eradicating strep. Sooo... without the positive IgM--you still go after the mycoplasma?? We have since had IVIG (Oct 09). I'm assuming these mycoplasma IgG's are gone?? We are going for a second IVIG--found out we havebeen quite the strep factory in our home. Our son lost his good gains by 3 mo post IVIG. He has been on Augmentin 875 bid for almost 5 months now post IVIG. I know Augmentin will not get mycoplasma. Thoughts. Dawn

Hello- Just got done reading a post from Ginger. Another Iowan!! We live up I35. I'm in West Des Moines all the time for appts. I know 7Up isn't far from us, either. Maybe there are more of us than I initially thought. PANDAS is recognized and being treated in central Iowa. Unfortunately, the treatment offered (to be fair) has done nothing for us and prolonged getting help for our son. " Penicillin will work" and" by age 12 (we have never seen a child have this older than this) PANDAS won't be a problem." That's the protocol along with psych drugs. PM me or just post, all you Iowans. Oh, and we are tired of snowdays. I smell another potential one Monday. Say it isn't so!! We are on our way to Dr. K for second IVIG in a month. I look fwd to hearing from you!! Dawn

Hey--Your Iowa mom just down the road! The two Iowa docs to whom you and I have both gone "get PANDAS" and are dx'ing it--they are not on the ball with treatment. Take a deep breath. DeAnn & I would not get you headed east to Dr. K if we didn't think he was the one to help sort this out for you. Prayers--Dawn PS Just remember Dr. K can a bit ecentric!!

Our son had IVIG 4 1/2 mo ago. He had, what I called, some type of flu illness about 3 weeks out. He lacked the typical cough of the H1N1. Other symptoms of aching joints, fever, malaise, fatigue--grounded him for about 5 days. He did bounce back wonderfully. Actually, it was after this point that the encouraging improvements started. Trend (still with bumps) continued positive until Dec. Plateau and then spiral. (That's another post.) We are waiting for the green light from insurance for a second one as soon as we can get to Chicago. (We just rec'd payment for the first one! Another post, too!) Dawn

I meant to add that I think it would be wonderful to get together. We should all wear our forum names. Or (HeHe) maybe mingle and see if we could match the person to the forum name!!! Just a joke. But this would be a great get together. Bring pictures--a must. dawn

CandKRich- Can you share approx. what the rooms are going for?? If this is against forum rules could you PM me? I live 5 1/2 hrs west in Iowa and would like to make it. What's up with the registration?? Thanks, Dawn

7upMom, Yeah, And DeAnn is a crazywomen , I'm beginning to believe!! Hey I just sent you a personal message. My husband works for the AEA's which should be your first resource to get the IEP ball rolling in Iowa. Also re: Dr. Elliott. Hope to hear from you. (With all this snow & snowdays, I think we should snowshoe over to DeAnn's house and show up on her doorstep! "We're Here!!!!!") Feel free to call. Dawn

7upMom- My heart skipped a beat when I recognized a few names as I scanned your email. Another Iowan!!!! We went to Dr. Elliott, wasted a tremendous amount of time with pen & then injections. Ended up out in Chicago with Dr. K. Hey, I need to really read your post.We live in between Ames & DM. Feel free to PM me. Our 11yo boy is an early onset-er, too. Mis-dx'd Alphabet kid. We see Dr. Khosravi as his child psych. Wow, another PANDAS mom nearby!! I'll read your post and respond. Dawn

Boy, Can I empathize with you. It is exhausting. This whole PANDAS thing wears you down. Keep fighting. A PANDAS doc is a good move. We had NEGATIVE throat cultures and we had ASO/DNase B results so high that Dr. Cunningham said "active strep infection". Her comment to us was that the titer results "confirm a recent or recurrent strep infection". I had to PUSH for the blood tests, but my gut was right. We had been a strep factory. No wonder our son wasn't able to sustain improvement. Whatever you do, DON'T head into an IVIG w/o clearing the family. We are pretty much back to square one with our son. The difference now is that we are all on abx. Just wanted to pass this along. Dawn

Dr. K mentioned that he has seen possible correlation of mycoplasma and PANDAS. He said that he has particularly noted this in kids who have serious raging/aggressiveness/Katie-bar-the-door behavior. This fit my son. So does the mycoplasma correlation. His IgM was negative, but the IgG was very positive. Where <.9 is negative and >1.9 is positive, Evan's was 3.9. I don't know how high that really is. He also had 780/>1360 for strep titers at the time. We believe that his onset had to have happened prior to two. His medical history is littered with infections (beginning at 10 mo---about a week after I quit nursing him) that are described in such a way that they could have been m. pneumonia and or s.pyogenes. Dawn

We had IVIG Oct 09. Weird BUMPY the first three weeks, but some glimmers. We started Augmentin 875mg BID about week two. Leaving week three the improvements became more apparent. The bumps were not as intense or as long lasting. Then Dec saw the beginning of a downward spiral that eventually landed our son in the hospital this last week. What we learned in Dec. is that we are/have been a strep factory. The IVIG held him for about 2-2 1/2mo. and the constant exposure caught up with him again--perhaps the reason we have not gotten the behavior breaks because we have been ping-ponging. Check family members if you haven't. Negative throat cultures weren't enough, either. I finally insisted on the ASO/Anti-DNase B tests 'cause I was convinced we had strep in the house. BINGO. We bring Evan home tomorrow. This will be a good test, now that all 5 of us are on Augmentin 875mg BID. Hope this is helpful. Dr. K has said not to panic until 3 months. I think any parent would be panicking before that!! Dawn

Someone with some expertise will probably have to weigh in. I know one titer test ASO/Anti DNase B is only a snapshot. But, I think when there are results as high as ours, as we have been told with our son, you don't get those overnight with one infection. Dr. Cunningham looked at our results I sent her the other day and said "You're a very smart lady" to have insisted on getting the blood tested even with negative throat cultures. Particularly with mine & 15 yo (752/1920 & 756/1920) she commented that " You have an active strep infection." "Strep---It's not just in your throat!" ought to be the slogan! I question if exposure alone is -- in most people-- going to see such an antibody level. This quote from Dr. C is from an email she just sent me regarding our family's titer results I had emailed to her: Dear Dawn, Your results are not surprising to me as strep titers are the final confirmation of recent or recurrent strep infections. I'll take her year's & years of studying strep & immunology over the average doc's. My two cents. Dawn

Wendy, We have mentioned to Dr. K that we are figuring that a second IVIG will be needed. He never comments. Right now the other 4 of us are on Aug. 875 BID x 28. Cleaned out the Pharmacy--IOU's on each bottle!! HA Dr. K says if it doesn't work in that length of time, it won't. We had to admit our boy yesterday. So dangerous to others & himself. Back to square one now, we feel. Could be a blessing as we we all be on abx by the time he returns home. He is on the same amount. Dr. K said he could have this until conversion. Well, I don't think conversion is going to happen during this round. Diana P said to be patient. The high dose abx is a new arena and we just may see improvement w/o IVIG. I'm not holding my breathe, nor will I wait too long to find out, due to his age. Get tested. My gut has been right soooooo many times during this journey. Dawn

Carrier State??!! Our family has been a strep FACTORY!!! We had no clue---negative CULTURES to boot. I finally got my GP to listen and run titers on all the negative cultured members. Our son has tanked and is currently hospitalized. IVIG Oct 2/3. Downward spiral started in Dec. Myself 756/1920 2 neg throat cultures DH 189/1920 neg throat 13 dd neg/177 15 dd 752/5500 lightly positive. dx 12/09 adol. variant PANDAS. high dose Aug. Symptoms, for the most part, have waned. Makes me sick. Can post more later. Gotta run to get to the 1 hour visiting time we have with son!! DAwn

Iowadawn, you should run the Cunningham blood test on your 13-year-old, if you are unsure about whether it's PANDAS. Lots of PANDAS kids have low ASO/anti-dnase b . EAmom- My mission next week is to see if I can convince our GP to run titer checks on the three of us that came up with negative throat cultures. My gut is that my psoriasis is being aggravated by strep and it just isn't showing up in the throat, but I'm causing problems. Does Buster have a take on this? I am not sure we don't have another culprit. My 15 yo girl was just lightly positive & her titers came back at 752/5700. That didn't happen overnight. My gut was right on with her with her stomach issues. Dr. K says it is not necessary to check the others' titers. If I hadn't heeded the forum's & Dr. C's recommendation to culture everyone, we wouldn't have suspected the daughter. I understand the low titer result situation. We are considering the Cunningham blood draw for her. If she were to come back elevated, she would be an example of a kid that would come in under the radar. Dawn

Ditto. I'd go for it if the abx are that available. Best wishes. Dawn

Hi to all! Our 11 yo son is a chronic/incorrectly dxed case that was a figured out a 1 1/2 y ago after a stint in psych ward. We are three months post IVIG and quite discouraged. We saw some very encouraging improvements starting about post IVIG 3 weeks, only to a steady downward spiral starting in Dec. It has been a very rough day again and I feel like throwing in the towel. Dr. K has agreed prescribe 875mg Augmentin until conversion. A month ago we discovred that our 15 yo daughter had titers of 752/5700!! With the behavioral/stomach symptoms Dr. K wanted to see her. He is pretty sure she has the adol variant of PANDAS. She is on 875 mg Augmentin for a month. I'm not holding my breathe that that will completely take care of it. She is so much better. I believe someone someone else in the family is running around with strep despite the negative throat cultures. I have had considerable problems with my psoriasis, which can be irritated by GABHS. I haven't been able to get my doc or Dr. K signed on to checking titers for the rest of us that were negative. I wonder about our 13 yo whose behavior can be much younger and her spacey, lack of focus-stay on track traits. I did email Dr. K begging for titer checks. I agree with all the comments about these kids being tough cases to crack. It's been a long haul I thought was looking like it was going to be over and I am not sure where we are going now as my son tries to break down another door & terrorize his sisters. Gotta go. Dawn

I wanted to let you know that we wasted a considerable amount of time on pen and then Bicillin injections. Our infectious disease doc was insistent they would work. We saw titers increase and behavior plummet. Needles to say, we don't see him any more. Just wanted to pass this along. Dawn

Cranial nerves that are involved in the tiny eye muscles and also pupil dilation run through the region of the brain affected by PANDAS. I believe I stumbled onto this while looking on the web for something else. I now believe our son's binocular eye problems were the result of PANDAS. You might want to investigate. Dawn

How I can relate to your situation. It just plain hurts to read your story. I agree with what others have written: you do not have the time nor energy to waste trying to educate doctors. Locate one who knows what to do and get your son well. Best wishes and prayers. Dawn