colleenrn

Thanks for your response Vickie. I am going to pursue the T&A first with my 7 year old b/c it helped his big brother and sister a lot and even on the daily Zithromax he reacts very strongly whenever he is exposed to strep- much more than my 2 kids without tonsils/adenoids. It is scary doing the T&A in any child, but it especially worries me in a child so young. The very seasoned ENT who did our first two children has moved away, so thin would be a different surgeon, which adds to my worry. Maybe the ENT will give me a "buy one, get one free" surgery for the two boys. Colleen

I took my 3 yo for a throat culture today b/c he had the rash he usually gets on his abdomen (red little bumps), started wetting the bed again, acting wild, and has swollen lymph nodes in neck. My oldre 3 kids also had a ramp up of symptoms over the weekend even though they are on daily Zith. His rapid test came back positive. My NP and I hugged each other b/c we were so glad to get a "confirmed" strep test as his cultures come back negative a lot and his rapid has never been positive. He is on another 10 days of Omnicef. He had just been on 10 days of it 3 weeks ago. We are thinking of pursuing whether to do a T&A and was wondering if anyone has had it done with a 3 year old. My 7 yo is having his ENT consult next week for the same. I want to scream. I HATE strep. Thanks for listening, or reading. Colleen

I think, if I remember correctly, strep can live on an unrinsed toothbrush for up to 17 days, but less time on a rinsed toothbrush. I don't know if they can still culture them. Perhaps if they are keeping it in some type of preservative?? Not sure. I am KICKING myself that we never cultured my son and daughter's tonsils or adenoids when they were removed. Colleen

The nasal H1N1 vaccine is a live vaccine, as opposed to the injection which is a killed vaccine. A lot of children with PANDAS do have major flareups with any live vaccine (MMR, Chickenpox). It could be that. In addition, it is possible to get a negative culture and still have strep b/c strep can hide in places other than the throat (sinuses, gut, perianal area, skin). Colleen

Here is a link to enhansa. It is used with autism, but apparently children with PANDAS also. http://www.leesilsby.com/enhansamain.php My sister was picking up Zithromax for two of her children with PANDAS and nearly fell on the floor when the pharmacist said, "Do your children have PANDAS?" The pharmacist went on to tell her about enhansa and a physician in her area who uses it with children with autism and PANDAS. It is basically curcumin, which is a powerful anti-inflammatory. It also says it does the following: Increases levels of Glutathione within the cell Reduces levels of nearly every inflammatory cytokine found to be elevated in Autism Improves liver detoxification Chelates Lead and Cadmium and protects brain and body from damage caused by Mercury Anti-Viral Anti-Fungal Decreases levels of oxidized (GSSG) Glutathione. Oxidized Glutathione has been found to be elevated in Autism. Potent PPAR Gamma Agonist NF-Kappa B inhibitor I was wondering what people know about it. TIA! Colleen

I am 1/4 English and 1/4 Irish, so my kids are 1/8 of each. I believe County Mayo is where my relatives from Ireland were from. I will try to find out where in England my grandfather's relatives are from. Colleen

How long will he be on the prednisone? It it is pretty short term, it won't cause him to gain weight, that is when you are on it a long time. Have you tried Ibuprofen also. The steroids are to help decrease inflammation of the basal ganglia. Ibuprofen is also an anti-inflammatory, but not as strong as prednisone.

That seems to be the right dose for his weight (14mg/kg/day). With my daughter, her symptoms returned after 1 1/2 years. I am pretty sure we used Augmentin at the time. In hind sight, I would have used a cephalosporin (like omnicef) or Zithromax. Colleen

Lisa, My daughter was on Clindamycin for about 3 weeks prior to her T&A. She was strep free and PANDAS symptom free for 1 1/2 years. (Amoxicillin and Augmentin did nothing for her) My son was not on antibiotics prior to his T&A and his PANDAS symptoms returned much sooner (maybe 3 months?). My third son may need a T&A and I am going to make sure he is on antibiotics prior to surgery. If your son's strep was not fully erradiated it may be that when they removed his tonsils and adenoids, a little strep was still there and recolonized. The tonsils are tissue and sometimes htey are not 100% removed. OR the remaining strep was just released into his bloodstream and that is why you are seeing an exacerbation. I completely agree with Dr. T that children should be on antibiotics prior to surgey. I also do not think it is overkill to give a bag of antibiotics during or post surgery and oral antibiotics for a few weeks following surgery. What dose of Omnicef is he curently on and what is his weight? Hang in there! It will get better! Colleen

Noelle, I am so glad you will be seeing Dr. T. The reason I mentioned pseudomembrous colitis and c-dif is b/c I beleive,at least in my kids case, that not just strep A affects their PANDAS. Since C-dif is a bacteria, and I think it is possible other certain bacterias can exacerbate PANDAS just like in some cases viruses exacerbate it, that it is something you could at least rule out as a cause. BTW, my siter's children on on Augmentin prophylactically, but they add Zithromax for 10-30 days when they have an exacerbation while on Augmentin and it seems to work. Colleen

Nomoz, I just posted, but wanted to add this. One thing you may want to rule out if the diarrhea does not resolve very soon, just to be safe, is pseudmembrous coilitis. I put a link to some info from Mayo Clinic, but it is possible when on antibiotics to develop this. There is normally a bacteria called clostridium difficile (c-dif) in you intestinal tract. Sometimes antibiotics can cause an overgrowth of c-dif. The c-dif then produces a toxin that causes abdominal pain, diarrhea, fever. To test for it they would just need a stool sample. It probably is not the case with your daughter, I just wanted to mention it in case. http://www.mayoclinic.com/health/pseudomem...colitis/DS00797 Colleen

I just wanted to tell you I am thinking of you. It is so horrible to see your child go through that. How much Zithromax is she on and how much does she weigh? The reason I ask is b/c my sister's children also have PANDAS and her doctor insists that in a child over about 60 lb., a treatment dose is 500mg of Zithromax per day with an active infetion. Most doctors do not give that dose, but it is clear in my niece and nephews case, the 500 works so much better. Have you tried giving Ibuprofen very 6 hours. Maybe that would help a little? Hang in there! Colleen

LLM, My 8 yo old son had H1N1 this past Fall and exactly 2 weeks later had seasonal flu. Neither time did he had any exacerbation of PANDAS symptoms. He was physically very, very ill, but no change that I saw with PANDAS. In fact, all my children, 2 years ago had pertussis and none of them had an increase in PANDAS symptoms. One year ago, my 3 youngest children had chicken pox, and again, no increase in PANDAS symptoms. They have had an increase in PANDAS symptoms with strep that is NOT strep A and with ear infections. Colleen

Two of my kids have gotten bilateral ear infections twice while on the prophylactic dose of Zithromax. It depends on what antibiotic they are on , what and where the infection is. It is possible, while on an antibiotic, to still get an infection. What antibiotic is your child on?

arial95, Is the Zithromax given prophylactically or did he recently have strep? If he recently did have strep, was he only on 50mg of Zithromax? The reason I am asking is that for 27 lb., the treatment dose would be 147mg (which you would just give 150mg). Do you do 5 days on, 5 days off? Colleen

Reactive, Does you ever get negative throat cultures when you know he has strep? You could have them sawb his nose and run the culture the same way. Jewels, Antibiotics can reach an infection in the nose. I am not sure why your physician told you that. He could easily have strep A in his nose. Colleen

Fixit, If your son weighs 79# you can give him 400mg of Ibuprofen.

Could the fever, vomiting, and diarrhea be due to a virus and that is why she is not showing PANDAS symptoms? Some kids with PANDAS have flareups with viruses, but others do not. Colleen

Yes, episodes can differ greatly. I wonder though, if he could have strep right now. My daughter was on several courses of Amoxicillin when she first started with PANDAS and we would still get positive strep tests with a day or two of her being off Amoxicillin. Given his improvement on antibiotics, and given his decline when off antibiotics, I would be suspicious. I don't want to sound like I am always bashing the use of Amoxicillin, BUT... I kind of am b/c of personal experience. While amoxicillin works for some people with strep throat, it is useless for others (my children). I think it is far safer, if you know your child is already dealing with PANDAS, to bypass amoxicillin and penicillin completely and jump right to a cephalosporin or a macrolide. If amoxicillin works, that is great, but if it doesn't, that is just one more day the child has strep. Just my opinion. Colleen

Fixit- Are you saying that your child only did 2 weeks of Keflex at 250mg/ twice per day? If that is the case, I would think a trial of a longer course would be warranted. The thing about Amoxicillin/Augmentin is that it won't reach intracellular strep like Zithromax will. Have you tried Zith yet? Not sure what to say about the steroid burst b/c I have not done it with any of my children yet. My sister did it with her two children and had good results. During a bad flareup in her son, he was on an extended course (forget exactly how long, but weeks) and then tapered off. He did great while on steroids. Colleen

Yes, group B strep is different from group A, yet one of my children's first PANDAS episode he tested positive for GBS (group B strep) in his throat. My kids react to all strep, not just strep A, so I have wondered about this connection. Colleen

Sandra, The backsliding with potty training occurs in my 3 year old and is sometimes the first symptom I see. A super quick history on my family: 4 kids, ages 13, 9, 7, and 3. The oldest 3 have been on Zithromax since October 2008 (so for 16 months) ,but my youngest I have not put on prophylactic antibiotics just yet- that is where we are headed. He has been on 20 days of Zithromax, probably about 6 -8 times over the past year. When he is not on Zith and gets exposed to strep or has strep, he immediately starts having accidents. I never really saw that in my other kids. I would tend to think it is not b/c he is ON antibiotics that your child is backsliding with potty training, but that it is just a PANDAS symptoms that will get better while on antibiotics. It is really hard in the young children to terase out what is "normal" 2 and 3 year old behavior and what is PANDAS. Colleen

I definitely agree with the advice to culture her for strep. Make sure they grow it out fot 72 hours. Is she currently on antibiotics? Dr. T will be a great help to you. Good luck! Colleen

Momo4, Hi. I just wanted to add something that you may or may not want to do. It is only a suggestion, but it may help to get to the bottom of whether or not it is PANDAS much sooner than April when you have the appointment. You could take him to your physician and tell a tiny white lie. Tell them he had a sleepover at his friend's house and that friend had a raging case of strep and now your son has a sore throat. If they say, like many times I had heard, "Well, his throat doesn't look red and it sure doesn't look like strep", you then could reply, "what would be the harm of just doing a strep test? Make a mom fell better, etc... " The reason I suggest parents do this is b/c I know that my children never get any physical symptoms, even with a raging strep infection. If a physician is unwilling to do a completely benign little swab of the throat and it is in the child's best interest it be done, then IMO get it done by whatever means necessary. If you told the physician the situation (strep exposure and now sore throat) and they still refused, you can, as a parent, b/c it is a completely benign test, just insist they do it. I am a nurse and I am pretty sure if you give them that scenario, they will do the test. Good luck. I know how scary and frustrating it is when you are just trying to get some answers to help your child. Hang in there!! Colleen

Can you describe what the petechiae looks like? Is it only on the legs? Is there any possibility it could be a strep related rash? My children, when they are exposed to strep or have strep, develop a rash that could be looked at as petechiae, but I know it is not. Their rashes are not the "typical" strep/scarlet fever rash, but one thing I have learned in the years of dealing with PANDAS, my children don't get "typical" symptoms. If it is related to the Augmentin, can you switch to Zithromax? Colleen