little red

I would suggest doing a search on the topic of IVIG and mycoplasm on the forum. I agree with Cobbie. Getting the right diagnosis and using the right codes could definitely help with costs, especially since so many kids end up having the IVIG so many times.

This is an excellent film! Definitely going to buy it.

Thanks, Fcefxer! I really appreciate it.

Well, she was seen at an immediate care because she started having symptoms on the weekend. She got it at preschool, where 5 other kids were also diagnosed with strep throat. He would only give her penicillin. Since we couldnt get a hold of Dr. T., our pediatrician put her on Cefdinir 250mg .5tsp twice a day. She weighs 36 lbs. He said that he recently read data that showed it worked well in PANDAS kids. She did start to show lots of improvement after about 5 days. Her relapse was pretty bad with rages, no impulse control, anxiety, major OCD, lack of eating, not sleeping, separation anxiety from me and leaving the house... etc. Definitely still not able to return back to school yet. Although she is better overall, she has started having alittle more return of symptoms instead of steadily getting better. Not sure what is going on. I was also giving her Ibuprofen twice a day. We do have questions about doing prophylactic abx. In her history, she has had a pandas relapse 3 times now. Once in Sept 2010, then again in Sept 2011, and now in Feb. I am interested in seeing what kind of prophlactic abx trtmts people are using. I have seen that some people do a low daily dose, some do 1 week out of a month. How do you figure all that out? I do love Dr. T. and I know he is busy. Hopefully we will hear from him soon. Thanks.

My daughter is a patient of Dr. T's. She was recently diagnosed with strep throat and went into a PANDAS relapse. I have been trying to get a hold of Dr. T. for a week and a half. I have even spoken to the nurse 4 times, giving her the scenario etc. and NO response, no call, no email, nothing. Any advice? I know he is busy, but really.

So true for my daughter!

P.S. There are some instances where the docs give peds patients 5mg/kg too. But it is still only every 6-8 hours. Who knows which dose is considered therapeutic for our PANDAS kiddos. Maybe there will be a research study done some day to see which dose is best for them! But, no matter what dose you and your doctor choose, it is safest to give at 6 hour intervals.

Smarty, I have worked with many pediatricians. Whenever they prescribed Ibuprofen, they might have dosed lighter or heavier depending on that child's medical situation, but they never gave it any closer than every 6 hours. There is still an active amount in the body until that time. Giving it every 6 hours should be adequate to prevent the rollercoaster effect (although spacing it out to every 8 hours might be different). Actually, many doctors in the hospital setting prescribe it at 10mg/kg. (not just in weight ranges). So, the actual dose for 48 lbs (if given by a doctor) would even be a little bit higher. We are giving our daughter Ibuprofen for PANDAS treatment also. We were told to give it to her at full strength at 8am and 8pm.

First, I want to say that your post was so sad to me. My three year old daughter is starting to experience the same things with her friendships. It is an area that makes me so sad as I am thinking about her future. Her preschool friends already notice that she is gone for weeks(during the start of an exacerbation) and they kind of move on to different friends. She is a little too "close" to them, always wanting to hold their hand or reaffirming that they are friends. I assume that this will get worse as she gets older. But, she is a very loving girl and sensitive to others reactions to her. It does make my heart so sad for her and others with PANDAS who have these challenges. I definitely think that you should call her mom and talk to her about it. We are all different and have different things to give to this world. Maybe it would be good to have the friend and her mom over together.

KingJaffeJoffer, It seems like your post might get lost in this thread. I think there are people who could help you with your questions, but they might not notice them while attached to this post. Maybe copy and paste your post and start a brand new one. I think that will help people to see it better! Good Luck! Little Red

We have it scheduled for Tuesday. Hopeful!

Oh my! I just booked a phone appt today to consult with Dr. T about my daughter. Let us know how it goes from here! Thanks!

Hi there. Some on this forum probably remember more details, but I remember reading on a post that Dr. K. once was working with another doctor to give an out of town PANDAS child IVIG. There was some kind of complication or reaction and the other doctor didn't really want to handle it or solve the problem. Dr. K. wasn't even there. I think it created some problems and put Dr. K. in a bad position. So, it kind of makes sense that he has shyed away from that sort of thing. Although, I do definitely understand your position regarding insurance and related medical costs! I hope everything works out well!

My daughter's main symptoms are aggression and rage followed by OCD, although both are better with this episode than they were with the first episode. The rages were very extreme and truly dangerous to herself and us. And she is only 3! With her first episode, the rages lasted 2-3 hours long and she had about 2 or 3 of them a day. We had to physically hold her down the entire time. With the current episode, the rages are only 5-15 minutes in length, although she has definitely increased in overall aggression. She has obviously been pulled out of preschool until the symptoms lessen dramatically. She is definitely responding to antibiotics!

It is hard to hope it is not, only to find out it is. My 3 year old daughter has just started her first relapse and for days my husband and I were trying to be real about what was happening. We were so hoping we were just imagining things or over-reacting etc., but then we knew that we needed to face it again and get on with the show. My thoughts and prayers will be with you. I cant imagine having two with this difficult problem. From what I have read, you are a very competent and attentive mother with so much love for her family. Sounds like you have great doctors around you, I know that is worth a lot. Hang in there!

Thanks to all of the responses to my post yesterday. They were helpful and supportive! So we saw my daughters specialist. I am still confused. He did okay antibiotics, but only for two weeks. He said at the end of two weeks, she will have either: 1) gotten no better or only a little better, hence the antibiotics aren't working and we stop them. Then try IVIG. or 2) she will significantly improve and we will still stop the antibiotics. He believes that if she has greatly improved then you have either stopped the infection and dont need to continue antibiotics. Or, if we stop them at two weeks and her symptoms reappear then she was just getting the neuro protective properties that antibiotics can provide. And she will then need the IVIG. My question is this: who cares what the method of helping is/was. Whether it is stopping an infection or neuro protective properties, if it is working, why not continue with the antibiotics. Maybe those neuroprotective properties give her brain and body a chance to rest and then heal some.My daughter had great results with 6-7 weeks of antibiotics the first time. We went for almost a year without a return. That is all I could ask for! I am so hoping that this time we will see great improvement again (although the doc said with every episode the success of the antibiotics decreases) and I will definitely NOT want to take her off after only two weeks!!! It scares me to death! To see her improving and then to risk seeing her go back again because of withdrawal of antibiotics would break my heart. So, do these docs feel betrayed if you seek another opinion and/or go a different route? Our doc is the only of I know of in our area (Chicagoland)and I would hate to be put on his bad list. Thanks for sharing your knowledge and experiences. It means so much to feel that I am not alone in this most difficult and heartbreaking time.

Hi there, My 3 year old daughter was diagnosed with PANDAS last fall. She was treated with Amoxicillin for 1 week and then Augmentin for an additional 6 weeks. We saw great improvement within the first week of treatment and it only got better from there. Now,(almost a year later)it appears the symptoms have returned. So, I called up our specialist, Dr K, and requested an appointment and antibiotics. He said that since the antibiotics had failed that something else would need to be tried. In my eyes, the antibiotics were a great success. But according to him, the mere fact that it returned, meant that they had failed and new/different types of treatment (not the use of any antibiotic) needs to be addressed. So, although I still feel quite new to the whole disorder, I thought that many, many of you give your children antibiotics during their relapses. I would love to try a course of antibiotics and see if it helps again! It seems to be a very frequently discussed topic. So, hence my confusion. Any thoughts? Opinions? Thanks so much! P.S. We do have an upcoming appointment scheduled.

Hi there. Our daughter actually broke out in a rash while being treated with Amoxicillin. It didnt happen until day 6 or 7 of treatment, where as an allergic reaction usually occurs much sooner. It looked really bad with red raised bumps starting at her trunk, then moving to her arms and legs, then towards her face. It was slightly itchy. She did not have any respiratory or digestive symptoms. No swelling of face or throat, which would typical in an allergic reaction. Fortunately our doctor recognized it as Nonallergic Amoxicillin Rash which is a regular known side effect of the medication that usually occurs between days 5-8 of treatment. She continued her treatment and the rash went away within a couple days! I have included a link about it. The pictures are very helpful. Although your child may have truly been allergic, just wanted to make sure you knew about this also. http://en.wikipedia.org/wiki/Amoxicillin Just scroll down the page a little to see the rash section.