mom23boyz

Wendy, we are in Northern NV, near lake tahoe. we have an appt. with a rhuematologist at ucsf in April. Our believer pediatrician is sending us there. I am not even sure if this rhuematologist is worth seeing. Not sure that i can post her name on here or not. If you have names and know how to send them to me that would be great! thanks so much. Lisa

Colleen, i would subject my family to a study too if it would help figure this thing out!! I was so mad at that doctor!! I wanted to scream, instead I sat there and cried my eyes out right in front of him. How can he tell me nothing is wrong when my sweet fun-loving boy that just changed over night into a terrified, scare shell of his former self. I am an RN and this is partly why I left healthcare, because of arrogant doctors like that!! Sorry I am ranting! There has to be some genetic link, don't you think????

Colleen, Sorry you are going through so much Colleen. You have helped me so much in my short time here. I have very little experience with PANDAS,as you know newly dx within the last 2 months, but I have to say that when my son had his first episode Omnicef worked. Then after he had his T & A a few weeks later he started with PANDAS symptoms again and the dr. put him on zithromax. 2 days into Zith his symptoms were worse!! So I called to get the Omnicef and it started working within the first 2 days!! Hope this may help. Lisa

Dr. T. I find this all very interesting. My son has recently been dx with PANDAS by his pediatrician and Dr. K. this is his first episode caught within the first 30 days so I am hopeful early detection has helped our prognosis. He is 95 % better on day 14 of Antibiotics. That said We went to the" on call" pediatrician as my older non pandas son now has strep. I preceded to tell him about my middle son with PANDAS and he told me he does not believe in PANDAS , as strep has been around "forever" and we never saw this before. I just started to cry and tell him I know this is real !! why is my son better on antibiotics. He told me to read the book every patient tells a story.( I guess it talks about controversial disease he stated ) This Doctor also said he doesn't believe in late stage lyme. OMG I think to myself, are you kidding me. I tell him my mother and sister both have late stage lyme. My niece either has lyme related behavior issues or PANDAS she is in the middle of trying to get diagnosed. He states" something's wrong with your family" Ok tell me what it is besides "bad genes" He says I don't know but you need to bring your son to an infectious disease doctor in the bay area. With this statement of "something's wrong with your family." I started to think about the genetic component involved. Why do so many people get over lyme fine and others do not. My sister had a months of doxy when first bit but is still so sick, she has been sick 3 years now. My mom has been sick with lyme for years 15 + or so. Why does simple strep affect our pandas kids so badly. I know they say there is a genetic predisposition for PANDAS, what about for chronic lyme ( could that bacteria be causing an autoimmune response in some people? i.e. my family!! Is there any genetic testing studies out there that my family could do? I don't believe it is just coincidence that 4 members of my immediate family have either chronic lyme or PANDAS!!! There has to be a connection. Just wish I knew Lisa

Thank you everyone for sharing your experiences. I guess I have to do what I feel is best for my son on that particular day, week. As he will have ups and downs.

Just curious what you all do as far as school and separation anxiety. I know we have to send him back here soon. I just hate the tears and crying/clinging at drop off. It breaks my heart and now I know it's not his fault and that he's not just trying to get out of school or doing it for attention. It's part of this awful "THING" How many home school? or home bound/ tutor offered by the school? Do you have IEP's in place? My sons decision making is so impaired. Handwriting/math skills regressed. I don't know what to do! I am afraid he will get strep or some other illness at school and trigger this thing again. I can't put him in a bubble!!! Thanks for any input you may have! Lisa

Thank you Dedee for your story. It has brought me hope for the future. We are just at the start of our journey and I am so scared. Hearing your sons story has helped me more than you will ever know. I wish you and your family all the best. Lisa

Colleen, YAY , for + throat culture. Isn't that funny. Do all your kids have pandas? We went for the follow up T & A appt. today & shared Dr. T recommendation of good abx pre + post surgery. He agreed the next pandas pt. he sees he will do that. I guess this process is all about small steps. So even on daily zith your other kids still react to someone else active infection? What happens when they are at school with kids that have active infections? This disorder sounds like a nightmare. Can we please wake up! I hate strep too! There is a genetic factor right? We think my niece has had this for about 2 and a half years, but my sister never knew what it was, nor did I, until my son's 1st episode this past month. She had Strep the summer of 07 it came on all of a sudden. Her symptoms are not as classic as my son but are definitely there. She is going for T &A in April and is having a full immunological work up. As far as a 3 year olds. When I told my sons teacher he was going to have T& A another mom in his class said her little girl had them out at 3 and it was easy, but she is not pandas. Seems a little bit harder on these pandas kiddos. Hang in there. You have been so helpful to me Lisa

His chest. He is on omnicef 375mg would that abx take care of it you think?

possible, what do you do for a test. Which abx treat it? He has green phlegm. I know tmi

Jules, I am mostly English, not sure where in England my ancestors are from? I will look into this. Lisa

Yes we do need a list. He at the moment is also fighting an upper respiratory infection on top of recovering from tonsillectomy. His pandas symptoms are at about 60%. His throat cultures are neg. Maybe he has other triggers besides strep or the strep is hiding somewhere?? Pandas symptoms came on with the fever and URI. I guess it's a guessing game?

Thanks Vickie, Yes he did have the nasal vaccine. I have not had him checked for a sinus infection. Thanks for giving me a path to head down next. Lisa

I love the air filter analogy! I'm curious, does anyone ever culture tonsils after they've been removed? It seems that everyone assumes there is no infection (hence no abs, or low dose amoxcillin) pre and post surgery. It seems that the excised tonsils could give you a better culture/indication as to whether the infeciton is really gone, better than the typical swab at least. I just saw a patient a few hours ago who had a tonsillectomy for PANDAS on 2/12. The child was on appropriate antibiotics pre-operatively. Both tonsils were cultured and from both: Haemophilus Influenzae ! I can't tell from the prelim path report if it is Type B (the kind that causes meningitis and why your child gets HIBVAX) or so called non-typable H.Flu. So I treated for the worst possible scenario as a precaution (Augmentin and Rifampin). Could H.Flu be another on our list of PANDAS-like illness culprits? Or does this simply tell us that the tonsillectomy is unlikely to affect PANDAS symptoms (there's been no appreciable benefit thus far). Has anyone else's child had cultures of removed tonsils? I'm beginning to think that we should request ENT physicians request cultures on their tonsils. This is almost never done in routine practice. Another reason for that paper ... Dr. T This is very interesting. My pedi asked if we had his tonsils cultured. I didn't even know it was an option do they keep them around for a while. His surgery was on 2/9 Could they culture them now if the still had them??? He never tested positive on a throat culture for strep. So this would help us figure out his trigger? Also, Colleen mentioned his strep could be elsewhere. He always gets stomach aches with his pandas symptoms. Maybe we should culture the stool??

Nolle, I am in a similar situation, doctors here in Nevada know very little and are hesitant to treat. I had to really force the issue and get a better antibiotic when we treated him the first time. This illness so complicated! My son is 2 weeks out and he still looks so pale and sickly. I have no idea how I will or when I will send him back to school. The other factor, he has bad separation anxiety now. What to do??