colleenrn

Did Dr. L think he did not need to be on antibiotics?

Just my two cents, but a strep culture is a simple, non-invasive test that an ENT should do on a child JUST b/c he sees enlarged tonsils, even in the absence of any other symptoms. Were you saying that he saw some white spots on or near his tonsils? If so, that is a huge red flag that strep must be ruled out. I just can't wrap my brain around the practice of some physicians. I would go back to my pediatrician and ask for a strep culture. If for some reason he says no, you have the right to insist he do one. The danger with not doing one is that many children have active strep, but have no physical symptoms, so they get worse and worse as the strep goes untreated. Good luck! Colleen

Michele- Is Andrew on any antibiotics now or did Dr. Latimer want to see what the prednisone would do alone? Could he possibly be reacting to strep exposure? Colleen

Abbee, Did they do a blood test for the mycoplasma titer? Or didi they do an upper respiratory culture? Tahnks, Colleen

When I have dropped my kids (including my 6 yo who only weighs 43 lb.) to 125 mg of Zith instead of 250mg, their PANDAS symptoms most definitely increase. When they had chicken pox lthis past winter, I stopped the Zith for less than a week. They were home with NO exposure to strep. Their symptoms greatly increased. Maybe that is what is happening with your daughter? OR maybe she has a virus and is having an increase in symptoms b/c of that? It is SO hard to figure these things out! Hang in there! Colleen

TEVA is a generic manufacturer. The Zith should be the same. Is it 250mg and how many days did she give you? If she is PANDAS, it does not have to be strep A to cause an increase in tics. I t could possibly be a virus or other bacteria. Mycoplasma pneumonia or other types of strep that a strep A culture would not show, could be the cause. My kids have have major PANDAS flareups and the strep A cultures were negative, BUT b/c we did upper respiratory cultures (shows other bacteria and other streps), we found out they had "beta strep, non- A strep). Routine strep cultures, including rapid strep tests, only show up strep A. If she responds positively, try to get a longer course. Good luck and I am thinking of you! Colleen

I live in Virginia and we do not have philosophical exemptions, just medical and religious. I easily got a medical exemption for my oldest. She was fully vaccinated (born in 96), but the medical exempt was to prevent her from getting the MMR booster b/c she had a bad reaction to the first MMR. My youngest is not in school yet, but for my other 2 children, I did a religious exemption. I gave them the polio vaccine, but I do NOT put that on their records for school b/c it would be harder to justify doing some and not others for religious exemption. I think if you are going to do philosophical or religious, you should not let them know that they have have any, but that is just my opinion. I totally disagree with the answer you got from the autoimmune group. I think vaccines play a role in causing autoimmune disorders in a lot of people and once you know you have an autoimmune disease, it could only exacerbate it. Again, only my opinion. Colleen

Amoxicillin works for some, but it did not at all with my children. I would most definitely recommend Zithromax, but sometimes it takes a 10 day course. If she has never been on Zithromax and it is strep related, I think you would see an improvement after a few days. The improvement can be slight at first, so just look at all the behaviors and judge it as working if they decrease even a little. If for some reason your doc won't do Zithromax, my second choice would be a cephalosporin (Keflex, Omnicef, Cefdinir). How much does she weigh? Sometimes the dose they are given is not enough, so double check that. Good luck! Colleen

Not all states require the varicella vaccine and some states don't require the booster, yet. The CDC's website says that you do not need the booster if you can prove evidence of immunity (titers can show you that). I hate the chicken pox vaccine. I let my oldest get it when she was one. It made her really sick and then she broke out in a horrible case of shingles when she was 10. I have since learned that this happened to a lot of kids who received the vacine. I did not give it to my other 3 kids and they all got chicken pox this past December.

It is hard to believe that an immunologist would be confused as to autoimmune disorders causing neuro symptoms when Sydenham's chorea was discovered over 300 years ago. I was wondering if I should have the 14 strep titers and pneumococcal titers done with my children. If you know your children have PANDAS, what would these titers show you? Also, they are on prophylactic antibiotics, so would there be any use in doing them now? Just received the kits from Dr. Cunningham and will probably do them at the end of this week. Thanks, Colleen

I am awaiting 4 kits that they mailed out to today me to have all 4 kids tested. They mailed them in two boxes in case I wanted to do two at a time. I am afraid, b/c they are on prophylactic Zithromax, that it will skew the test, but I can't stop the Zith right now. All of my kids were heavily exposed to strep for a week (4 cousins had strep during a week beach trip where we lived together, drank after each other, even licked the same lollipops--against my protests) , so even on Zithromax, I am seeing a BIG flareup in at least 2 of them, suspicious about the other 2. Has anyone on Zithromax, or any antibiotics, gotten a negative result with the titer tests?? Is it something that my doctor's ofice can do or do I have to go to a lab? Does the lab charge you for the draw? Thanks, Colleen

Michele- What were her thoughts on antibiotics? Is she trying the prednisone and holding off on antibiotics? Does she think his bowel issues are related? Colleen

My oldest child was fully vaccinated, except for the last MMR booster. My three youngest have received the polio vaccine only. My fully vaccinated child has FAR worse PANDAS than my other three. I have always believed, without question, the difference is b/c of the vaccines. I truly believe this is the reason and that is why I won't vaccinate my other three. Colleen

This is only my opinion, but I feel that once you know your child has PANDAS, any vaccine would be dangerous for them. I know there is also the fear that the actual disease could be dangerous for PANDAS children, but I am more afraid of the vaccines. In 2008, three of my children had pertussis (whooping cough) and chicken pox and made it through with flying colors. I have been following the swine flu vaccine closely and think that they will try to make it mandatory, but I am pretty sure they won't be able to do that. If they make it mandatory for school without any opt out clause, I have already decided that I will keep my children home and have to homeschool them until the flu is gone or summer comers around again. I have not made this decision lightly. I also think that any vaccine that is a "live vaccine" is even more dangerous (chicken pox and MMR, FluMist, small pox). The swine flu should be a killed virus, not live. I am very eager to hear what others think. Colleen

If she has PANDAS, the Topamax is not controlling her PANDAS, only treating the tics associated with it. If she has PANDAS, the reason she needs antibiotics is to erradicate strep and then protect her from future strep exposure. The fact that she has frequent urgency to urinate, along with the confessing, is a HUGE red flag for PANDAS. Do children who are strictly Tourette's also have the frequent urgency to urinate and the confessing? Have any PANDAS children on this forum ever tried Topamax? In my opinion, Topamax could help decrease tics in PANDAS children, but it is doing nothing to treat the strep. Colleen

Lurker, The reason I think it was the Zith that helped her is b/c after the first day of taking it she saw and improvement. Upon stopping the Zith, she saw a regression. In the past when she has taken antibiotics, she has seen an improvement. She has a history of strep, that when treated with antibiotics, gives her a marked decrease in tics. Colleen

Because the process of PANDAS is very similiar to the process of rheumatic fever, and the protocol for rheumatic fever is prophylactic antibiotics through childhood, maybe you can work that angle with your physician. If your child is only taking Zith twice per week, maybe you could up it to every other day. My 6 year old who weighs 43 lb. is on Zith 250/day. IF I try to cut it to 125mg/day, his symptoms increase. He would never make it on only twice per week. Maybe your child is the same? Colleen

Wendy, She did so much better on the Zith and regressed when off the Zith. I think that is the biggest clue that it is PANDAS and would try to get more antibiotics. Is your doctor completely opposed to prophylactic antibiotics. It seems like she improves whenever she is on them. Colleen

Erica- First of all, you are not crazy. It sounds like it is very likely that your son has PANDAS. All of the behaviors you described, especially the night time problems, along with the frequent urination, are classic PANDAS symptoms. What was the dose of Zithromax that he was on for three months, and what is his weight? What improvement did you see in him while he was on the Zithromax? Do you see any behavior changes since he stopped taking Zithromax in March? I look at PANDAS as extremely similiar in treatment to rheumatic fever, so in my opinion, he should be on at least a prophylactic dose of Zithromax (could be 125 mg for that age, but my 6 and 8 yo are on 250mg/day prophylactically) to prevent him from getting strep and causing a potentially worse flareup. Colleen

Lacy, I am so glad you found someone in Richmond that may be able to help you! Definitely let me know how it goes. I will cross my fingers for you!! Colleen

Chap, A treatment dose for your child would be more like 250mg three times per day. Your doctor may have put her on a prophylactic dose, BUT you have to start out witht he treatment dose to get rid of the strep, then switch to the lower dose. MyRose, None of my four children have EVER had an elevated strep titer. They also do NOT get any physical symptoms whatsoever with strep, so in the beginning before I realized this, my oldest would have untreated strep for a while b/c no one thought to check for it in the absence of symptoms. They can have strep with NO fever, NO red or sore throat. The same is true with my nieces and nephews. This is very common in children with PANDAS and unfortunately this causes a lot of people to think they can rule out PANDAS. I am in no way trying to diagnose yourt child, just help you figure this out, but based on all your posts I have read, she sure sounds like PANDAS to me. IF she worsens upon finishing the Zith I would get her tested (could be a false negative though due to just being on it) and insist on a long course of it. Good luck and h ang in there! Colleen

Hi MyRose, The quick response to Zithromax, along with the confessings and frequent urination, are highly suspicious of PANDAS. She could have strep or been exposed to strep. Did they do a throat culture? You mentioned they said something in her swollen in her throat- they probably said swollen lymph nodes?- indicative of strep. Just thoughts in trying to help sort out the puzzle. IF she is doing better on 3 days of Zithromax, you may want to try to get at least another week so she gets 10 days of it. Three days would not be enough to fully erradicate strep. Good luck! Colleen

Chap, I wanted to comment on the penicillin dose. How much does your child weigh? The penicillin dose your child is taking is a very low dose. Penicillin is not always the best choice for strep. Can you get them to switch it something like Keflex or Zithromax? It is a red flag that your other children recently had strep skin infections, which are aslo caused by strep A., Colleen

Hi Susan- I just wanted to post that it could possibly be a bacterial infection b/c two of my children who have been on Zithromax since October, recently had ear infections. It could also be viral with you daughter. I would stick with the 250mg right now until whatever it is clears. Colleen

SJH- The behavioral symptoms sound just like PANDAS and the physical symptoms sound like scarlet fever. The rash and the strawberry tongue are classic symptoms. Did your doctor do a throat culture? I really hope so given her symptoms, but if not, I would insist on a 72 hour throat culture ASAP. That is good that you obtained Augmentin, just make sure she is getting a high enough dose of it. Children weighing 40 kg (88 pounds) or more are given the same dose as adults. The usual dose is one 500-mg tablet of Augmentin every 12 hours or one 250-mg tablet every 8 hours. For more severe infections, one Augmentin 875 mg tablet every 12 hours or one Augmentin 500 mg tablet every 8 hours may be recommended. It is important to note that two 250-mg Augmentin tablets are not equivalent to one 500-mg Augmentin tablet (they contain the same amount of amoxicillin, but not the same amount of clavulanate potassium). Hang in thre! Colleen