cobbiemommy

OMG, I am blown away. It is one thing to suspect this, it is another to have it confirmed. My son also says Sorry for the most innocent of actions. I think to other kids it could come across as low self esteem, not that they would put it that way... Thank you so much for this help. (only once from me, but many times from him!!!) Cobbie

I know this is a strange thing to think of as OCD, but I am starting to think that this is one way it manifests for my son. He is very appreciative whenever someone does something for him, but he is overly demonstrative in his thanks. Yesterday, he had eye surgery (to fix amblyopia) and he thanked the nurse probably ten times. She even commented on what nice manners he had. I thought they were over the top. When he was 1-2 and we were learning all those life skill phrases like please and thank you, I can remember him saying them to himself later, like he was echoing the phrases. I will never forget my good friend watching him and saying, "I've never seen a kid do that." This is long before we knew about PANDAs, but knew we were having a lot of ear and sinus issues. He learned early that if he said the right things, good things would happen, but I think he is taking this lesson to extremes. He is very cognizant of what people do for him and thanks them which is great, but where is the line between obsessive and overly expressive???

I would definitely say this is Pandas, because he is obsessing about the school issues, does better on antibiotics, and is having real pain. Have you taken him to a good LLMD to be evaluated? My son was very pale, with bright red cheeks. The pallor can be a sign of infection. Has he been to GI doc? Strep can hide out in the gut. Also, a streptozyme titer might be able to diagnose strep if it has gone intracellular (this was our experience). Not sure if you have had a full immunologic workup, but it might help find or eliminate some causes of illness. We have been to a place similar to where you are, and I feel for you. Cobbie

Get an advocate. PM me and I will send you the name of a company that really fights for you with the insurance company. They saved us a lot of money when BCBS got stubborn. Know anybody in the media? Contact them with your story and try to shame the insurance company. They already said no, so you have to get them to change their mind. Cobbie

:D Very, very happy for you and your son! You both have earned it! People who have not lived it, cannot truly appreciate what a sweet victory that is! Cobbie

Looks to me like the dentist is your new best friend. Get those z-packs!

I think it is time for us to do some intensive ERP and therapy, as much for me as for my family. I think I am at the breaking point after all these years of putting up with the behaviors, sibling fighting, etc. I would look at traveling and doing intensive therapy because I cannot find an ERP provider within a 100 mile radius. Please help.

DS, 13, has been put back on Rifampin along with Clarithromycin. He has been on it about a week and we are having some herx symptoms, painfuls heels/shins and bright rash all over his torso. He also is chatty, chatty, chatty. Driving me crazy with all his talking.... How long does it take for Rifampin/Biaxin to finish the job? He was on this before and did well, but we still had a strep issue to clear up. He is getting IVIg every eight weeks for immunodeficiency. Dr. J has him on 150 mg twice a day. This dosage seems low as he is 5'6" and weighs over 180. (not good, I know) Previously, he was taking 300 mg twice a day. Any thoughts??? Cobbie

I would recommend the streptozyme titer and streptoccoccal serotype testing. A full immune workup is probably in order to see if your daughter is holding onto the antibodies for strep, tetanus, and other illnesses. If you mention daughter's test results, do it at the end of the appt. Keep it brief and know that she cannot prescribe meds because she has not seen your daughter. You could ask for a recommendation of an antibiotic for other doc to give or ask her to do a phone consult at your expense with the other doctor. Just a thought. Cobbie

Maybe you should trade your Psychologist for an Immunologist. (ha) All kidding aside, has your children's streptococcal titers ever been checked? IGa, IGg, or IGm? It sounds like maybe there is more going on beneath the surface. My child's bloodwork always came back fine, with the exception of low IGg. But when we dug deeper with the help of Dr. B, we found a lot of immune system problems. He is slowly but surely doing better with the right antibiotics and immunoglobulin. Just a thought...

I'm not sure if this is the same thing, but we saw Dr. K. in May 2010, and he ordered a full immune panel set of blood tests (IGG, IgA, etc.), including ASO and AntiDnase-B. Is this what you're referring to? I'm sure there's a whole battery of more extensive testing available, but not clear on how it's commonly defined. By immune panel, I mean testing for Strep serotypes, HHV6, XMRV, Celiac Panel, Hep B, Haemophilus Influenza, Streptozyme Titer and Screen, Tetanus Antibodies, Complete Thyroid Panel, Mycoplasma Pneumonia among others. Also, a lyymphocyte subset panel is very helpful for doctors familiar with Immunology. If your child has been fully vaccinated, as mine was, the results of these tests tell the doctor many things about immune function.

Ds, 13, found an extension cord, moved the treadmill in fron of our big screen tv and is exercising!! Oh happy day! I know this is just one day, and just one thing, but it is different than anything ever before! Tomorrow, we may go back to where we were before, but for today, and right this minute, I am happy!!! Cobbie

I would use either Dr. T (who I have never even talked) or Dr. B solely based on the labwork that they order. I believe Dr. L does this as well. Dr. K can be very useful, but unless he has changed his protocol, he does not do an immuno diagnostic lab workup. He missed something in my son that would have made all of the difference; the lack of antibodies to strep. Let us know what you decide and we will support you. Cobbie

We had no real baseline in our household either. DS, started repeating words at 18 months and picking his fingernails around the same time. This devolved over a period of time into OCD/fight or flight rage and sheer #### for the whole family. DS, is now 13 and is four weeks out from his first IVIg with Dr. B. You need to at least start with a PANDAs specialist so that you can get a very thorough blood workup and get some answers as to what is going on inside your child. We now know why my son could never get rid of strep and why he got all these illnesses that came along. You need to know the answers to those questions. The healing is slow, but well worth it at any age. My son is getting back to being a healthy contributing member of our family! He vaccuumed the floors for me today while I was at work! Whoo Hoo. This is huge!!! I see great things in my son's future and want you to have the same. Go to one of the top docs, have the consultation, make informed choices for yourself and your child. We tried the cut and paste approach for too long. Don't make the same mistakes we made. Cobbie

We were seeing a LLMD in Missouri and had previously seen Dr K. When we went to Dr. B, he was able to get us into a spot with Dr. J. Dr. B does a very comprehensive immuno workup. We discovered a lot that made so much sense; like low IGg and Immunodeficiency related to strep. Dr. B is willing to work with other docs (especially if he is familiar with their practice). He leaves all of the Lyme meds to Dr. J, but they will communicate about cases. The websites for the Jeffrey Modell foundation and the Immune Deficiency Foundation recommend seeing an immunologist when there are illnesses that won't go away with conventional treatment. That is why we picked Dr. B. Is he perfect? No. Is he very good at what he does? Yes. We were able to rule out a lot of disorders with his testing as well. Things like Celiac, HHV6, methylation issues. If you ask for a specific test and he is familiar with the methodology/logic he is very open to the testing. If nothing else, he rules things out. Dr. B will do a very complete history, so come prepared. He will also listen intently to your perceptions and opinions. I am sure Dr. T is a very good doc, but Dr. B fit us best because of ongoing infection that would not resolve with conventional treatments. Cobbie

Dr. B tested for that but it came up negative. Could it be that his nose is peeling because the intracellular strep is gone? Just like when the hands and feet peel, the nose could peel? It is only his nose and right around it, including the upper lip. The inside of the nostril is where Dr. B found the infection. Cobbie

We are about one month out from the IVIg and there are some symptoms I did not see the first time around (2 years ago). His face is DRY and a bunch of dry skin is falling off. EWWW... It is normally very even and moist. His scalp is shedding dandruff flakes like a shampoo commercial and he has had a rash on his hands which is bumpy but not red. He had a red rash all over his chest, arms, and back. They look like milia bumps. I am back to giving him Benadryl which seems to have helpded the bumps on his hands. I know there can be reactions to IVIg, but I just didn't realize it would be to this extent. I am glad this is during the summer months because kids at school could be really cruel about this. Dr. B used Gammagard at 2.0 mg/kg where Dr. K used Gammunex at 1.5 mg/kg. So far, no behavioral healing but the red cheeks are gone and the fluid in his ears is greatly reduced. Watch and wait is very hard! Cobbie

I can't help other than to tell you that we are in the same boat. There used to be a song that said that "Waiting is the hardest part." Try to distract yourself in whatever ways that you can. Also, keep up the liquids and rest. We are two and a half weeks in and the only change I have noticed is that he has a rash on his hands and that his ears have stopped leaking yellow fluid all the time. (Gross, I know.) Cobbie

I think him getting mad is because he doesn't realize just how loud he is talking. My dad was the same way over thirty years ago-he could not believe he was talking loud, but when he had his hearing aids in, he talked at a normal level. Here is an article about Susac's Syndrome, but it is very similar to PANDAs. http://www.mendeley.com/research/encephalopathy-visual-disturbance-hearing-lossrecognizing-symptoms-susac-syndrome/

DS, 13 has been talking really loudly and he gets really mad when we tell him to talk softly. Also, he had horrible tinnitus while taking Doxycycline for Lyme and Co. This went away about a year ago. Every day until he had IVIg he had dark yellow or brown discharge in the bottom of his ears. This stopped after the IVIg, but is starting to come back at 2 weeks, 3 days. His tone of voice is flat or off most of the time. Has anyone else had this? Did it resolve with time? Tomorrow, I will be checking into an audiologist for testing. He has primary immunodeficiency, no strep antibodies and Lyme/Bart. If you have any experience with hearing loss, let me know. Cobbie

We also did 2 gm/kg over two days. My son also has immune deficiency. This will be repeated every eight weeks.

I have autoimmune Thyroid disease, and had Scarlet fever as a teenager. There is a history of Alzheimer's on my father's side, but he died too young to know if he would get the disease, too. I also have a brother that developed glomulorenalnephritis as a result of infection, not sure if it was strep. Two of my four sisters have Thyroid issues. Cobbie

We just got home and are pooped. It is 10 p.m. Central time. He did very well during the infusion, but is extremely cranky and tired. Can't imagine why... No headache, no nausea!!! Yeah. Hoping the effects kick in as quickly as they did two years ago. We had signinificant improvement in one week. Time to go get ready for work, tomorrow. Thanks for the good thoughts.

I did find a doc in St. Louis that will treat, but want to stick with Dr. B through the first few treatments. I am not happy with docs at Children's Mercy in KC, so trying to avoid that place.

We are taking DS in for his first IVIG with Dr. B on Monday and Tuesday. He previously had one with Dr. K, before we knew about the primary immunodeficiency. DD, 15, will also be having an appt to see if we can figure out why she is not getting over the Bartonella and the accompanying symptoms. My daughter went from straight a's and three sports, plus band and FFA, to the girl who could hardly get out of bed and could not remember anything from one moment to the next. Her freshman year in basketball, she would easily score 18-28 points a game. Last year, she barely got to play at all, and the coach questioned her "work ethic". DD didn't want anyone to know she has bart. I feel truly blessed that someone cancelled their IVIg. We will get help for one and start getting answers for the other!! If any of you will be there Mon and Tues, we will see you there! Cobbie