colleenrn

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=

Strep B most definitely caused symptoms in my child. My 3 oldest children (6,8,12) had an increse in PANDAS symptoms (tics, very labile behavior) and at the same time, my 2 yo had what looked like a scarlet fever type rash on his abdomen, he was acting very wild, screaming, throwing fits, and was having short spells of apnea during his sleep. I had them all cultured, as well as myself. The three oldest cultured negative for sterp, but responded very successfully to Zithromax. My two year old cultured positive for strep B which, to this day, has me very puzzled. I cultured positive for Beta strep, BUT NOT A, B, C or G. We all went on Zithromax with good results. In trying to figure this all out and researching like crazy, I have two theories: 1. Group A strep can be misinterpreted as Group B ( I read this on different laboratory sites- it can also depend on the level of experience of the technician reading your results) OR 2. Group B can cause PANDAD symptoms. In my children, when they culture negative for strep, BUT have PANDAS symptoms AND respond to antibiotics, I believe it is twhatever bacteria they have that is causing symptoms and not just strep A. I was group B strep (GBS) positive in all four pregnancies, despite two rounds of antibiotics each pregnancy, so I wonder if I am a carrier of Group B strep and passed it to my 2 year old. I think the positive response toZithromax tells you that whatever strep it is/was, it caused PANDAS symptoms. In the beginning, when PANDAS was discovered, they believed it to be just strep A, but I thin ka lot of parents have seen other bacteria/viruses cause symptoms. Colleen

The biggest symptom in my son's (6 and 8) PANDAS is ADHD behavior. I did not see this in my daughter. We have not used ADHD meds. I give him Omega3.6.9's and also have used (on and off) Calm Child. BUT, he rsponds most to being on an antibiotic. Colleen

Pat, She has her ups and downs. She appears to be going through puberty, but the hormones have not all kicked in as she has not yet begun menstruating. The biggest mistake I feel I made with the treatment of her PANDAS, was not keeping her on prophylactic antibiotics, thus allowing her to be infected too many times with strep. She has been on prophylactics since October, with a short break here and there when she was vomiting with a virus. She recently had an ear infection while ON Zithromax and had a big increase in symptoms (mainly tics) that has not yet subsided. We have had tons of illnesses in our house with my other 3 children,including strep, so she is constantly been exposed to stuff. I do feel that her immune system IS stronger now than it has ever been throughout the course of her PANDAS. I pray she outgrows it and that there are no lasting effects, but the jury is still out on that one. THAT is why I am such a proponent of antibiotics. When this all started in 2001, I knew nothing of what I know now. I am trying to treat my younger children's PANDAS a little more aggresively, but who knows? Colleen

http://books.google.com/books?id=RJOy1vy2R...1&ct=result This is another article about MRI results in children with OCD, showing an increase in size of the corpus callosum. Colleen

http://www.ncbi.nlm.nih.gov/pubmed/10390719 The authors previously found significant abnormalities in the region of the corpus callosum (CC) connecting ventral prefrontal cortex and striatum in pediatric OCD patients compared to controls that correlated significantly with OCD symptom severity. The striatum is part of the basla ganglia. The basal ganglia is affected by the strep antibodies, which cause the tics/OCD/etc... This does not seem like it would be a coincidence, IMO. Colleen

I wonder if the basal ganglia can be affected by strep antibodies, could it also show up as some kind of abnormality of the corpus callosum? Could this be related to PANDAS? OR like EaMom mentioned, could it be there in addition and unrelated to the PANDAS? I wish you the best of luck! I will be thinking of you. Colleen

Mom MD, I am sorry to hear about your son, but I am glad you have all the resources that you do. My biggest piece of advice at this point (MY daughter was diagnosed with PANDAS almost 8 years ago and my 6 and 8 yo son's also are PANDAS) is to switch him off of Amoxicillin asap. Can you do Clindamycin that your other child is on? This article explains why Amoxicillin and penicllin have such high failure rates. You need to aggressively treat strep and Amoxicillin is not the best. When my daughtetr first started with PANDAS, Amoxicillin is what we used, several times. The strep was never erradicated and each PANDAS episode was worse. This can be avoided by using a macrolide or cephalopsporin. http://www.entrepreneur.com/tradejournals/.../169459644.html Colleen

She is almost 13. She has had PANDAS since she was 5, but 3 days before she turned 11, she had an abrupt onset of severe intrusive thoughts which she had never experienced in the 6 years of PANDAS. At that time I started her on Inositol and 5 HTP, so I can't say for sure which one helped the most, but after a few days her intrusive thoughts were much better. After a course of antibiotics (at that point I don't think we had tried Azithromycin, so it was probably Keflex) they were completely gone. I am going to up her to 100mg of 5 HTP. YOur DAN said up to 200mg/day. She was recently weighed and weighs about 130 lb., so I unfortunately have not been giving her enough. Colleen

Hi dee45, There are treatments for PANDAS and I am so sorry that your physician so quickly dismissed it. Can you give a history of your son and I assure you, people will comment and help you! Hang in there! have you started reading posts on the PANDAS forum? Colleen