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!