colleenrn

I was wondering if anyone has any advice. My PANDAS daughter (12) has to have 8 teeth extracted tomorrow. She has been on Zithromax 250mg since October (with a few breaks due to vomiting virus- she recently got an ear infection despite the Zithromax which worries me). Yesterday I gave her Zith 250mg, but today plan on giving her 250mg twice. I am so worried that despite the Zithromax she will have a flare up of symptoms b/c she has to have so many pulled. EAMOM, I remember you saying that your daughter had the worst flareup after having a tooth extracted. Do you think it would be overkill to add a few days of Keflex? Any suggestions would be appreciated! Thanks! Colleen

FYI for anyone who may have a child with perianal strep: This study shows that Ceftin (cefuroximine) is much more effective with perianal strep- much better than penicillin. http://www.druglib.com/abstract/me/meury-s...r_20081200.html Strep on the skin, whether it is perianal or impetigo, can cause PANDAS symtoms. If you are exposed to impetigo, you can get strep throat. If a child ever has impetigo, I would be extremely suspicious that they could also have strep throat. Perianal strep is often misdiagnosed as a yeast infection. If a yeast infection does not go away pretty quickly with treatment, suspect strep and do cultures. The skin can be cultured just like the throat. Colleen

Those symptoms are very suspicios for strep (headache, vomiting, sore throat, behavioral changes). The strep test could have been negative b/c he had only been off Augmentin for four days. Hopefully if it is strep, the test will be positive today. Are they culturing it out for 72 hours? Don't ever rely on the rapid strep test UNLESS it is positive. What COULD have happened is that the Augmentin got rid of enough of the strep to lessen symptoms, BUT upon stopping the Augmentin, your child was either re-exposed to strep, OR there was still strep in his tonsils that just recolonized. This has happened SO many times with my children. Does your child have large tonsils or has any doctor ever mentioned they look cryptic (this makes them more likely to harbor streo in the tonsils AND adenoids and it EASILY recolonizes itself upon stopping antibiotics). They can't give you Augmentin again b/c he was just on it. I would push for either a cephalosporin (Keflex, Omnicef) OR Zithromax. Good luck! Colleen

Melanie, Given your son's age and weight, I agree with EAMom's suggestion of increasing the Zithromax to 500mg/day, even if it is just for a 10 day course. You could then re- evaluate switching to a dose of 250mg. My niece who is 8 and weighs about 65 lb. was put on a ten day course of 500mg/day of Zithromax by her pediatrician. This pediatrician is very cautious with antibiotics, but told my sister that in the case of strep throat, and given that my niece was in a bad episode of PANDAS, the 10 day course of 500mg was warranted. My daughter weighs about 125 and is 12 1/2. She is taking Zith 250mg/day, but when I see a big flare up of PANDAS symptoms, I bump her up to 500mg, usually for 5 days. Talk to your doctor about it. Certainly a short course of Zith 500mg is not going overboard at all, IMO. Colleen

Bronxmom, Does your son have bad reactions to red dyes? I am pretty sure the tylenol with codeine liquid has red#33 and red#40 in it. My kids went berserk (for lack of a better word) once when they were taking Keflex liquid with red dye. Maybe that is a possibility? If that is not it, I would agree with seeing about switching him to Azithromycin, even if it is for a few weeks, and then rethink putting him back on a cephalosporin or keeping him on Zithromax. Is his pain any better? Colleen

Hi Bronxmom, It looks like your son is getting the treatment dose. If he is taking 3.5ml/twice a day, he is getting 175ml twice a day, which is the treatment dose. Hope he is doing a little better. Colleen

Michele, I think it could be perianal strep. I know the doctor said it was not red enough, but it could still be strep. They can swab his anus and culture it just like they do a throat culture. If it turned out to be perianal strep, they would almost have to give you Zithromax. It it were worms, it would be better by now. Colleen

Bronxmom- Is he on a treatment dose of cefdinir? The anger could be irritability b/c of pain, but I agree that it sounds PANDA-ish to me, also along with the cartoon and crowding statements. I think that when you remove infected tonsils and adenoids, some strep does get "released", so just make sure he is getting a full dose of Cefdinir and not a porphylactic dose (7mg/kg twice per day OR 14mg/kg once per day). Did he get any IV antibiotics during surgery? Colleen

There is nothing wrong at all with giving ibuprofen along with the tyelenol with codeine and I did that with my kids. The reason I didi not suggest it to Bronxmom was b/c it can slightly increase the risk of bleeding and I did not want to suggest it b/c of that. I think if he is in a lot of pain six days postop, which it sounds like he is, the temporary use of Tyelenol with codeine is needed. Colleen

Healthnut, How old are your children? I see that your oldest had IVIG. Are they also on antibiotics? There are some families here that have also done IVIG with Dr. K. Colleen

Melanie, How much does Danny weigh? He has been on Zithromax 250mg for how long? My daughter (12 yrs. old) has been on 250 mg/day of Zith since October and still got an ear infection. Should not be getting strep, but in the world of PANDAS, I would not rule anything out. Colleen

Bronxmom, I think you are doing all the RIGHT things for your son. Try not to be hard on yourself! Two of my kids hada A T & A (I posted to you about them). They both had enormous and cryptic tonsils. They did much better post T and A. I think it is possible that PANDAS kids have a more difficult recovery time. What are you giving him for pain relief? Hopefully they gave you something like Tylenol with codeine. Reguar tyelenol or ibuprofen will not cut it. Suggestions for pain relief (besides good pain meds) are an ice collar (you can make it just with a ziplock big bag of ice- put a thin cloth between his neck and the ice). This definitely helped one of my children (did not know to do it with my first). Lots and lots of cool fluids, popsicles. Only let him eat very soft, bland foods. As far as continuing antibiotics- yes, definitely! Cefdinir or any other cephalosporin would be good. Did another doctor give you the cefdinir? I would not worry at all about your pediatrician being mad you switched him off Amox to Cefdinir. IMO, you were smart to make this switch. Just explain your reasons and tell him you wish to continue on the cefdinir. If I think of any other pain relief tips I will post. Please ask me questions if they come up. If I remember correctly, it was a solid 7-8 days before the pain got better. The first week, I gave them tyelenol with codeine every 4 hours when they were awake. For both children, my doctor gave me a refill (so each child went through to botles of liquid tyelenol with codeine) Good luck and hang in there!! Colleen

You can buy Zithromax over the internet, but it is really expensive. That is definitely an option!

Michele, I see that you are going to Florida? You may be able to get Zithromax there a lot more easily. If I were you and I know you have tried tirelessly to get Zithromax for your son, go to a walk-in clinic in Florida with complaints of an ear ache AND bad sore throat. Tell the doctor that you have a LONG history of strep throat and despite the negative rapid strep test (IF they even do one- they WON"T do a longer culture there), you KNOW that you have strep throat right now. Tell them your physician has determined that Zithromax is the only antibiotic that works for you and you have to take two courses of it. Typically, these docs at walk-in clinics will more readily go along with you. That would get you 10 days of Zithromax for your son. You can ask that they prescribe you Zithromax 500mg (which is the adult dose) and then you could possibly have 10 of the Zithromax 500mg which you would split to give your son 20 days of 250mg of Zithromax. I think it is terrible that you even have to "score" Zithromax like it is an illegal drug. If any child is a GREAT candidate for at least trying Zithromax, IMO, it is your son. There are also an increasing number of walk-in clinics at places like CVS, Walmart, etc.. that may even be easier to get Zith than at a more traditional walk-in clinic. Another idea is to contact Dr. Murphy and convince her (send her each of our stories of Zithromax success on this forum) and get her to change her recommendation, even if it is just for a few weeks trial. Risperdal has more really serious side effects than Zithromax. I am sorry that your physician is even offering to put your child on Risperdal, but shaking their head No to an antibiotic that could quite possibly help your son get better. Colleen

Bronxmom- I was wondering how you are all doing post T and A? I hope everything is going well!! Colleen

I just wanted to comment on a possible cause of the rash. When you have mono and take Amoxicillin (and penicillin) you can break out in a full body rash. When I was 11 I had mono but we did not know it until I was put on Amoxicillin for an ear infection and broke out in an all over body rash. When my mother brought me back to the pediatrician and he saw the rash and knew I was on Amoxicillin, he immediately suspected I could have mono. He tested me and it was positive for mono. Maybe this is what happened with your child? If the doctor knew your child had mono they should have known to not use Amoxicillin or penicillin.

Michele, Did they rule out perianal strep? I know you have hit brick walls in trying to get Andrew switched to Zithromax. Could you increase the Omniseph to a treatment dose for a few weeks and see if that makes a difference? The treatment dose for strep in a child is 14mg/kg per day. I know you have not been able to get Zithromax, but is it possible they would let you try Erythromycin? That is a macrolide antibiotic like Zithromax. It is OK to keep doing the Omniseph at a prophylactic dose and add 10 days of Erythromycin at a treatment dose. Just wondering if that may help. Good luck. Colleen

I have a lot of hope that they will outgrow most of the symptoms. I am 99% sure that I was a PANDAS child and I have the most minor tics here and there. Since finding out about PANDAS with all of my children, and putting us all under a microscope, I do notice that when I am sick, my minor tics kick up a little. NO OCD or anything else. I am a little bit of a worrier, but only where my children's well being is concerned, not in other areas. I don't know if things got better with my pregnancies (1st one 13 yrs. ago, last one 2 yrs. ago) , but I am going to try to figure that out. Colleen

I wish you the best of luck. Two of my children have had a T & A and did much better afterwards. It kept them from getting strep for about 1 1/2 years, but when they started getting symptoms back, it was not as bad as before. If his tonsils are cryptic, the T and A will help b/c the strep hides in the crypts and also in the adenoids. If he snores or has any sleep apnea episodes, that will get a lot better after. Make sure they give him good pain relief. My children took tyelenol with codeine. The recovery is a little hard, but lots of cool fluids and soft, bland foods will help. I would recommend antibiotics immediately after the surgery, at least one course if not more. We did not do this with my 1st child, but did with my 2nd and I think that helps with any strep that is "released" during surgery. Children are so good at bouncing back! You will be in my thoughts and prayers!! Colleen

My sister's children used to react to coloring on their skin. I don't think they do anymore. She would put Invisible Glove (you can google it) on their hands if they were going to be getting coloring on their hands (like paint or I guess food dye). Maybe that would allow him to still waer tattoos? I know how important Spiderman tattoos are- have 3 little boys who love them. They definitely react to dye ingested, but i have not noticed then reacting it to it on their skin, yet. Colleen

The summer before my daughter's T and A, each antibiotic we were using seemed to not work anymore (I think, but it was 7 yrs. ago it was Amoxicillin and Augmentin are the only ones I can remember ) so we switched to Clindamycin. My daughter had been on Amoxicillin which worked for a while, then all her PANDAS symptoms returned, we switched to Augmentin and all symptoms were gone for maybe 2 months, at which time she woke up one morning repeating hte same phrase over and over again for hours. I was devestated and desperately researching what to put her on. I never considered Azithromycin and I am not sure why. I called the doctor at our practice who was the most liberable with antibiotics and asked for Clindamycin. Within one day she was 50% better, the next day almost 100%. I agree, the liquid is absolutely horrible tasting, but I would give her chocolate afterwards to take away the bad taste. We had great success with Clindamycin, but I feel we would have had the same success with Azithromycin had we used that at the time. I kept her on the Clindamycin until a week before her T & A. There is a slight increase in bleeding risk with Clindamycin and given that she was having surgery soon, I decided to stop it for that reason. Her PANDAS symptoms came back full force two days after stopping it. Her tonsils and adenoids were removed and things got better b/c her tonsils were harboring strep constantly and now that they were gone, that source was removwed. Colleen

Pat, Thanks. I will definitely let you know. I am starting to wonder why she has not started menstruating yet. She will be 13 in 5 months and I was 11. I don't kow any PANDAS girls her age to see if this may be the norm with them. Does anyone know? She would die if she knew I was talking about this Colleen

Sorry- her email is kathie.mcdermott@nbcuni.com

This was posted on yahoo OCD parenting site. Thought maybe someone lives in this area. I have emailed the reporter and will call her this morning, BUT I live in Virginia, so I don't know if she will be interested. A reporter for NBC Channel 10 news out of Philadelphia is looking to interview parents of children in the South Jersey or Philadephia PA area who have had to deal with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus). She is looking to do a piece that would highlight the importance of early diagnosis and treatment of PANDAS and that many doctors don't seem to be knowledgeable or aware of it. If you fit this description, you can contact her, at kathie.mcdermott@... 610 668 5738 She has a Friday deadline so requests to be contacted as soon as possible. Colleen

This is the thread I started back in October when we got the "weird" step results. Thought I would post it for you just in case it helps. Colleen http://www.latitudes.org/forums/index.php?...ic=4107&hl=