colleenrn

We will not be getting the seasonal flu shot or the H1N1. We have had the flu several times over the past 10 years and have never seen an increase in PANDAS symptoms. IMO, any viral vaccine is not good for a child with PANDAS. Colleen

I would treat any pet with any type of strep at all to be safe. Strep A is the first trigger, but other streps definitely cause a flareup of PANDAS symptoms. We have tested positive for Group B strep (usually found in vaginal area during pregnancy), and also Non-A beta hemolytic strep. For us, it is all and any strep. Colleen

Hi. I only have a second for a quick response right now, but can post more later. I would start by aggressively treating this strep infection for at least 2-3 weeks until you are sure it is erradicated. Then I would decide what prophylactic dose to use, but IMO, every 4th day is not enough. What antibiotic is she on now, what dose, and what is her weight? Colleen

With your son on 300 of Zith per day and an increase in symptoms, I would be suspicious that he was exposed to strep. Even though my kids are on daily Zith, when exposed to strep, they have a flareup of symptoms, that gradually get better. Keep on the Zith and I would give Ibuprofen every six hours, so try to get in three doses instead of just two. How much does he weigh? If he weighs 70 # or more, he can have 400 mg of Ibuprofen. If he weighs 60# or more, he can have 300mg of Ibuprofen. If he weighs less than 50#, then stick with 200mg of Ibuprofen. Colleen

Please don't think that I am implying you are not doing all you can or you are letting her sit with strep b/c that is not my intention at all! It was my mommy mode that kicks in when I read your post. What about emailing Dr. K and hoping he sees it soon and telling him all her PANDAS symptoms are on the increase, along with the physical symptoms (bedwetting and sore throat) and see if he would help you get at least a course of antibiotics. I wonder if somehow he does not think she has strep right now, but if he thought she did, he would treat? I just can't believe that a physician of any type would not treat if it were strep. Could he have misunderstood? I am sorry for what you all are going through! Colleen

Pixiesmommy and pixiesdaddy, I will give you my opinion and I will not hold back, but it is my opinion. It is NEVER safe to leave a child or anyone with untreated strep. Based on your daughter's symptoms (bedwetting, nasal soreness, sore throat, screaming) I would be highly suspicious that she has strep right now. While I respect Dr. K, the work he does for PANDAS families, and his knowledge in this area, I 100% disagree with him and I am confused as to why he would tell you that it is irrelevant whether or not she has strep. It is great that you will be getting IVIG, but in the meantime it is imperative to protect your daughter from strep. When a child with PANDAS has untrerated strep, they are a ticking time bomb, b/c at any point their symptoms can go from bad to terrrible. Even in a non-PANDAS child, you never want to let strep go untreated b/c of the possibility of rheumatic fever (causes cardiac problems), glomerulonephritis (causes kidney problems and can be very serious), sepsis (strep enters into bloodstream) and infects entire body and all it's systems. I am NOT in any way trying to scare you, but if I were you I would want to be told these possibilities. I also can't understand why Dr. K would say that she does not need to be on antibiotics prior to IVIG. This whole thing has me very confused, but I truly feel it is in your daughter's best interset to get a 72 hour throat culture done ASAP (do the rapid in case that comes back positive- then you won't have to do the culture, but if rapid is neg. follow up with culture). Good luck and hang in there! I am thinking of you. Collen

EaMom, I cut and pasted the other results so they are all together. Are the CamKinase results considered high? None of them are in a flare up now and all of them are on daily Zith since last October. I am having trouble figuring this out. 13 yo CamKinase 143 Anti-Lysoganglioside 320 Anti-Tubulin 1,000 Anti-Dopamine 1 2,000 Anti-Dopamine2 8,000 8 yo CamKinase 135 Anti-lyso 320 anti-tubulin 500 anti-dopamine1 500 anti-dopamine2 2,000 6 yo CamKinase 119 Anti- Lyso 80 Anti-Tubulin 500 Anti-Dopamine 1 1,000 Anti-Dopamine 2 8,000 Thanks, Colleen

Just got my Cam Kinase results. i posted the other lab results a few days ago. Any interpretations?? My 6 yo 119% My 8 yo 135% My 13 yo 143% Keep in mind, if it affects the labs, they have all been on Zithromax 250mg/day for over 10 months and are not in a flareup now. I absolutely know they are all PANDAS- no question in my mind, just wanted to do the labs. Any interpretation of the results would be so appreciated!!! Colleen

The pediatric deaths are in kids who are very, very sick already, IMO, not in kids with autoimmune disorders. I think the deaths are very hyped also. They are in children who are not receiving good medical care. Two deaths that I have read about, were actually due to the fact that the children had an active strep infection, but b/c their symptoms were "chalked up to" just flu symptoms, they were not treated for the strep infection. The parents were told the sore throat was just a flu symptom. Definitely not doing the vaccine. I am giving my kids vitamin D (D 3) to help prevent flu and will increase the dose a lot if they get the flu. (read about Vitamin D for the flu). At the very first sign of the flu, I will give oscillococinum. I have used it many times before with the flu and it works exteremely well. It cuts the "viral load" in half. I always worry about illnesses with my kids, but the vaccine, IMO, is so incredibly dangerous, I would not even consider giving it. Colleen

Manda, Could she have strep or have been recently exposed? Some PANDAS kids really worsen when they are on no antibiotics b/c the strep that is somewhere in their body just starts recolonizing and takes off. Colleen

Pixiesmommy- I forget- how much Zith is she on? I would definitely give her the Ibuprofen every 6 hours while awake. Hang in there! I am thinking of you! Colleen

Buster, As always, thanks for taking the time to explain the labs! I am still confused. I am waiting for the CamKinase results on my 3 kids, but would anti dopamine levels of 2,000 and 8,000 be considered high or very high? Also, my kids have been on 250mg of Zith for over 10 months, so would that make the values lower?? They have not done steroids though. Thanks so much! Colleen

13 yo daughter Anti-Lysoganglioside 320 Anti-Tubulin 1,000 Anti-Dopamine 1 2,000 Anti-Dopamine2 8,000 6 yo son Anti- Lyso 80 Anti-Tubulin 500 Anti-Dopamine 1 1,000 Anti-Dopamine 2 8,000 8 yo son Anti-lyso 320 anti-tubulin 500 anti-dopamine1 500 anti-dopamine2 2,000 I have not recieved the CamKinase yet. hope to tomorrow. Thanks! Colleen

I have given the whole 2.5 before, but they respond the same to half, so that is what I started giving them. I also take the whole 2.5 every night! I recently realized there was an orange flavored one b/c I bought it by mistake. They like the orange better. Colleen

I use the sublingual (brand is Source Naturals). I break a 2.5 mg in half, so I give my boys 1.25mg. I do not give it to my daughter, who is 13, every night, but when I do, I give her the whole 2.5. It works incredibly well. Colleen

My daughter's PANDAS began with only OCD and anxiety. The tics came later. They came in full force also. My two sons did not have the typical presentation that my daughter had. There's was emotional lability, low frustration tolerance, anger, hyperactivity. I have noticed on a few occasions when they definitely had strep, some minor tics. My daughter had lots of tics, lots of OCD, lots of intrusive thoughts, yet her strep went untreated for much longer b/c I didi not know what I was dealing with. I have been very aggrssive with my son's treatments (antibiotics) b/c I knew what I was dealing with. Does that make sense?? Colleen

What dose do yo give your kids of melatonin? I also use it with my kids and it helps so much. They fight sleep, they are light sleepers, they wake up during the night, they are restless sleepers. melatonin helps them a lot, but I have always wondered if I am giving the wrong dose. Thanks, Colleen

I also am lost in trying to interpret my three children's results. I know Dr. Cunningham will send a note with the results mailed to me, yet I am dying to know now. I have not recveived the CAMKinase results yet (Kathy said she was running them yesterday), but did receive the anti-neurol antibodies. If I post them, can someone help me figure them out?? Also, my sister has recieved all of the results she had done on her two PANDAS children. Thanks so much! Colleen

Sometimes strep is misdiagnosed as only tonsillitis due to a negative rapid strep test or negative culture and the abscence of a fever. Sometimes it can be viral, but be very careful to rule out strep when you are told it is only tonsillitis.

Kim- How did you rule out PANDAS? Kids with PANDAS can have an increase in tics or any other associated behaviors with any bacteria, not just strep. Since H. pylori is a bacteria, I would be highly suspicious. When was the last time she was on any antibiotic? You mentioned complaints of a sorer throat? have yu gotten a throat culture? Colleen

IMO I would definitely not stop the antibiotics now, just switch. If the strep is intracellular, Amoxicillin is useless. You would need a cephalosporin or Zithromax (with Zithromax being the most effective). The rise in her titer from 360 to 480 makes me definitely think there is strep and if you just stop the antibiotic, things would get worse. PANDAS kids oftertn have a flareup whenever they are exposed to strep, even if the culture is negative. In my experience with my children, being exposed to strep is just as bad as having a strep infection, in fact, it is one in the same.

I am so sorry that your daughter has strep. What dose of Zithromax was she taking? Have you used xylitol nasal spray, gargle, and toothpaste, maybe as a little added measure to kill the strep? Did your NP put her on Zithromaz 500 mg/day for the higher dose? My sister's pediatrician says that physicians routinely under medicate when a child has san active strep infection. She insists that with an active strep infection, Zithromax 500mg is needed. My NP put my kids on Keflex while they were already on Zithriomax b/c they had ear infections. She said it was perfectly fine to take both at the same time. Colleen

Hi Suzan- Defintitely agree that emla cream works great to numb the area prior to a blood draw. You just need a prescription and put it on liberally. Also, another tip that really helps with a blood draw, but you would have to do it prior to putting on the emla cream, is to take a warm wash cloth and put it on the area where they will do the blood draw. Do it for 15-30 mins. prior to blod draw and when the warm cloth starts to cool, just warm it up again. It helps to dilate the blood vessels and makes the blood draw much easier. Just make sure that if the ASO and/or antiDNase B come back normal, the doc does not rule out PANDAS based on that. You can have strep, esp. PANDAS kids, and have normal strep titers. Looks like he is just covering the bases, which is good, with the virus checks. Anyone can be exposed to herpes virus (a kiss from grandma or anyone who has ever has a herpes cold sore is all it takes). What prophylactic antibiotic is he prescribing? Good luck! Colleen

Glad you are there and hope everything goes OK. Good luck!! Colleen

That is what I have been wondering about, researching about and agonizing about. If they give the nasally inhaled H1N1 vaccine at my elementary school, will it be as if I am throwing my children into a building filled with H1N1?? And if so, should I keep them at home and for how long? Colleen