dcmom

My dd is in first grade. I did not really notice a lot of learning issues last year, however, I think she is now somewhat behind from missing the time pandas stole from her. During her episodes she has NO interest (this is putting it mildly) in schoolwork, homework and/or reading with me. I guess this is probably because it is harder for her, I just haven't been able to figure out exactly what. I didn't really worry last year, since it was K. First grade is a big year- so I am hoping she doesn't lose as much time this year. Right now she is doing well, and progressing.

Hi all, This is what I am struggling with now. When you say they have "healed", what do we think that means? My daughter's first episode took about 3 months to subside. Leaving her with only very, very minor ocd issues- which I feel would have gone away completely, had she had the time. She was really well for 2 months. Then, post T&A she had another episode. This lasted about 2 months. She then, again, came almost all of the way back- for a few weeks. Only, to be exposed to strep at school (while on abx) and have a minor episode from which we are now recovering. So, for many of us that have recurrent episodes, when they are healed- is it maybe that the blood brain barrier is healed- but the bad antibodies are still there- waiting for the next opportunity to cause an episode. Is it possible for those antibodies to go away over time with antibiotics? (We are working on an appt for pex- so this is where my head is...) Eileen

They will send you a box to send everything back in, along with an icepack, and directions. They are soooo nice and helpful. I couldn't really find a lab (but I know some others have), but am lucky enough to be 15 minutes from Dr Latimer, so she has done it for me...

Dr Cunningham's test looks for anti neuronal antibodies. It can help to determine if your child is in the ocd/tourrettes range, the pandas range, or sydenham's chorea. It is probably best to be done during a flare up. It is a research tool- not a concrete answer. They ask for $200 to cover their costs- but you can pay less or nothing, I think. You have to email them for a test kit, which they send out very quickly. You then need to find a lab or doctor to draw the blood, then spin it in a centrifuge. Then you overnight it to them on ice. It takes a couple of weeks to get the results. It sounds like a big deal- but it is not. As a parent, it is very helpful to see some results written in b&W.

Unfortunately there is no concrete test... ASO and ANA titers really do not mean much regarding pandas- they are to indicate if there has been a strep connection. The best test out there is Dr Cunningham's test. Have you considered that. That test, along with the clinical picture can help you confirm your diagnosis. Have you seen a doctor helpful with pandas? I have to say- that really helped my dh understand...

Please keep us posted with what you find out. Julia had her blood drawn by Hem/Onc and Infectious Disease yestarday, they agreed to do the immune work up- but I still don't have immunologist to help interpret the results...

Hi- sorry this is tough. It seems most likely he won't culture positive while on abx. There are some strains of strep that are resistant to zithromax, I believe- but I would think that would be rare. Maybe there is a possibility to do a combo of antibiotics just in case? possibly you could try Clindamyacin? Could your ped consult with an infectious disease doctor? I would also check with the school nurse, principal and teacher to see if strep is going around. It could be viral, which may cause an uptick in symptoms anyway. Good luck and keep us posted.

okay, so molecular mimicry is the reason the antibodies attack the brain, and just another piece to this puzzle. The creation of all of the antibodies is because of strep- is this "confusion" (molecular mimicry) caused by strep also, or a wacky immune system, or genetics? Is this the same thing that happens in most autoimmune diseases? What is "neuronal cell signaling"? thanks.

Hi all, I am also struggling to understand the mechanism of this disease. But here it goes: the child has to be genetically succeptible. they have a trigger- strep- where the immune system creates autoantibodies. then, there needs to be a weakened blood brain barrier for these antibodies to get to the brain. I think I see this almost daily in my dd. She is doing ok. She has that edge to her personality and is definately tense, but we usually manage. However when she gets overtired, and/or stressed: watchout the pandas stuff comes back (but can be short lived). So I think with pex if you remove the antibodies, and then the bbb and the brain have a chance to really heal- maybe your are resetting them. Hopefully they will be okay unless something like strep (in some cases I have heard a vaccine) reactivates the whole thing. My question is what is the "molecular mimicry" and cell signaling stuff I read about, and where does it fit in to my over simplified understanding? The other question is: I know pex removes bad antibodies, and IVIG maybe retrains immune system and/or closes the bbb, but what can/might the high dose antibiotics (like in saving sammy) do? Can high dose antibiotics over a long period of time clear the bad antibodies and close the bbb? please comment...

Kathy- We are going to Georgetown, not really for testing, but in preparation for pex. I have not gotten an immunologist to do testing, Dr L wants to get someone who will work on pandas, I am trying to be patient. I will let you know if she finds someone. If I were you, and you don't want to spend the $ to see Dr Latimer- here are some thoughts. Her original visit is pricey, but she charges less than half of that for follow ups, so in reality it is a one time hit. I feel it is beneficial to start a relationship with her for future. If you don't want to do that now, I would get the Cunningham test done on your own (if you haven't), even if it is a baseline since he is doing well. She likes to see those numbers. I would definitely document everything yourself. Have you seen a psychologist? I guess what I am saying, is if you hold off seeing her, I would try to document a pattern of pandas for when you see her. Is your child on antibiotics? Eileen

Please let us know what Dr Latimer says...

I personally just have a gut feeling of- NO vaccines untill dd is completely healthy for a year. I don't want to mess with her immune system, when I don't even know what's going on there.... To those who have been diagnosed with immune issues: do your immunologists say anything about vaccines. I really feel like the gov't sound like a "drug pusher" with the H1N1 vaccine, they seem a little hysterical beyond reason. As far as the flu vaccine (as an idiot- I gave pandas dd the mist last year- still wonder if that is part of what brought on pandas)- the recommendation to vaccinate all kids is relatively new. It used to be only for those under 6, I think, so I am not planning on ever getting it for them...

Hi shaes mom- thanks! I may go to one of the "doubters" for testing- if they can run those tests- but I really would rather see someone who could offer treatment. We are all so sick of running around to doctors... Children's hospital here seems to have a big dept, but I have to get a doctor to send them a letter of referral (not for insurance) and then they will decide if she needs to be seen by them (ugh). We are seeing the hem/onc and infectious disease doctors at Georgetown this week. Maybe they will have some suggestions. Just want to get the legwork done, before (if) she goes into another exacerbation...

Shaesmom, Diana- Do we know what number of total kids that have gotten tested vs how many have failed some portion of immunology? I am so frustrated in trying to find an immunologist to do this testing- am trying to get someone that will coordinate with Dr Latimer, but seem to be dead ends at Gtown. I have an allergist who will do the testing- but don't know if they will really do the treatment. National Children's Hospital in DC has an immunology dept- guess I will try there. I kind of want to have the testing done by a dr that is prepared to follow through with treatment. Since we are close to Baltimore (hopkins), I think we have lots of non believers in the area... Eileen

Elizabeth- thank you. Can you tell me, were your daughter's issues primarily stomach aches? What type (and brand) of probiotics do you give her? If the vaccines dissapate in these kids when they originally get them, does your immunologist want you to get them again? thanks, Eileen

Keith and Elizabeth, I know it must be so hard to have gotten this news, even though I am sure it is not shocking. Even with my dd, we KNEW she had pandas- but something about having it written in black and white (Cunningham's study) brings those original emotions up again. I mean with pandas, most of were puzzled about our kids for a while, and then had to fight the doctors to get them to believe it might be pandas. All the while our child is suffering. We never get the time to really absorb and grieve over a diagnosis. But, that being said, I do think it is good news. I pretty much think monthly IVIG is probably the best treatment (maybe with pex first) for many of these kids. You won't have to fight for your son anymore- he will get treatment. I am sure you have been down a long and difficult road- but hopefully this is the beginning of getting things back to "normal". A friend's daughter has monthly ivig for severe asthma caused my immune issues. It has been a life changer for her and her family. So- has anything happened with your non pandas child (who tested high on Cunninghams' study)? Can you give me a little insight into the GI issues? I am having my non pandas daughter tested by Dr Cunningham because she has had anxiety producing stomach aches since she had the same strep throat that cause pandas daughter's sentinal episode. I wonder if I should consider having her tested by the immunologist....

Hi Char- Well thats a little progress at least. Give the meds a month! It takes a while to eradicated the infection, esp if intracellular. Then the brain can begin healing. It is definately a process that takes time. I would consider seeing the psych. It may help you to have an official diagnosis (if you don't already) in writing by a medical doctor. After that, maybe your ped would consult with Dr Latimer about steroids.

peglem- thank you for that study. Very interesting. We are beginning the route of pex...

I am so sorry you are going through this. I would hang in there with the meds. Really, in theory, the zithromax should be used to eradicate the strep infection, and then to prevent contracting strep. I know others on the forum use it daily to manage symptoms, though. But, I guess what I am saying is, it doesn't necessarily address the brain inflammation so quickly. I would hang in there and give it thirty days. At that point I would definately consider a steroid burst. Also, try to look at the weekly trend, rather than a daily trend- it will help you keep your sanity. It seems if these kids are tired and/or stressed, they will have a temporary uptick in symptoms. The other thing is school is just loaded with strep. My pandas, and non pandas daughter have already had several kids in their classes out with strep this year. My pandas daughter definately has a temporary increase in symptoms when exposed to strep. Send emails to all classmates and teachers of your child's to alert you if someone has strep. This will help you track what is going on. Homework: I would discuss your child's issues with the teacher. I don't think it is worth stressing him with homework in an exacerbation. School is enough to handle. Possibly he could complete the homework weekly, doing some on the weekend. I did read a book that suggested this type of accomodation for kids with pandas. Good luck and keep us posted...

hhmm.. I am answering my own post. I found this study- it seems the probe is probably not quite as reliable as the culture, but better than the rapid? I guess we will have to go to the ped instead of cvs minute clinic from now on... any thoughts? http://jcm.asm.org/cgi/content/abstract/40/11/4207.com

I forgot to add, that if the strep is intracellular, the amox probably won't be enough. I think it is prudent to treat pandas strep with a month of zithromax to be assured you have eradicated the strep, and then possibly a steroid burst to help with inflammation. Then I would definately consider changing to a more narrow spectrum of antibiotic for prophylactic (carefully).

I took my non pandas daughter to cvs minute clinic to test for strep today. (It has been going around school, she has been tired, and pandas sister has been having low level issues) They did a quick test, negative. I asked if they would grow the culture for 72 hours. The nurse replied that they do not grow cultures, that they do a "dna probe" at the lab and that this is a newer and effective test, and we will have the results in 24 hrs. Has anyone heard of this? How does this compare to a culture as far as accuracy? It is such an ordeal for her to get a strep test, anything medical causes her great anxiety- I hope I don't have to do it again... thanks.

Hi Lena- Sorry you are here, but glad you may be on the right track to treatment for your child. My daughter did two weeks of cephalosporin, and then two weeks of amoxicillin when we diagnosed pandas. She had an abrubt onset, which lasted 4 weeks before we rec'd diagnosis. We were lucky, there. She sort of stabilized on these meds, but we weren't really satisfied with her progress, so we saw another doc who switched her to zithromax. She did full strength for 30 days. That did the trick, and brought her back to about 98%!! You are very fortunate to have a doctor open to long term abx (many parents don't), it is hard to swallow as a parent, but when it brings your child back- you will be a believer. If the amox didn't work after 2 weeks, I would consider a change to zithromax. I don't know how to advise you on the yeast- luckily we haven't had that issue (yet).

Suzan- Have you had the Cunningham bloodwork done? If your ped is receptive, maybe he could have a phone consult with dr Latimer, to ease any concerns he has about treating with steroids. She is a highly regarded neurologist affiliated with Georgetown University Hospital. She does like to see the Cunningham results, and a history of symptoms. So, if you had that together for your ped when he talked to her it may help. She is extremely compassionate. The steroid burst is no big deal. It is two weeks of a full strenght treatment dose, then two weeks of tapering off. We saw results in a few days. They lasted for 10 days, now we are not sure what direction she is going... Good luck, and hang in there!

My pandas daughter had a cardio work up. All was normal.