hawks

Dedee - I am so glad the clinic has been good for your family. I am wondering how well my DS15 will do. Like your son, he is not excited to go - I hope he will hang in there and not fight this. They have so much going on with their illness and then to put puberty on top of it. We are suppose to go 9/7. I am really hoping it will help both me and dad in how to respond to the ocd - I know we are enabling him at times - it is so hard to know how to support him with out enabling him. Thank you for your response - again I am so glad that you had a good experience. I might PM you later if I have more questions.

We use Florastor probotics - does anyone know where I can get the best deal on this? Thanks much.

Thanks everyone for your replies. We are going to go for it! We are scheduled to go to the clinic in Sept. Hopefully we will have a chance to do some fun things during our stay that might make it more enticing for him. Thanks again for your replies - this forum has been so helpful in giving us direction on this journey.

Great News. So happy for you all too!

I posted this to the PANDAS / Pitand forum as well. We are seriously considering 3 week intesive Clinic OCD with Dr. Storch in Florida for DS who is turning 15 tommorrow. He was diagnosed with PANDAS in Jan 11' and he is also being treated for LYME as of Feb 11'. The OCD seems to be at the root of all of the behavior issues that he is experiencing. I know I asked about this a while back but can anyone share their experience from this clinic. I am bringing it back up because we are to the point of taking this step now! We were hoping DS would be ready to go back to school at the start of 9th grade but doesn't look to promising at this point. The antibotics have helped a lot from where we were Jan-Feb but we have such a long way to go. DCmom & Dedee I think you are there now or will be going soon. Hoping and praying it helps!

Looks like I double posted this topic. Sorry I'm not sure how to delete. I am Forum Illiterate apparently!

We are seriously considering 3 week intesive Clinic OCD with Dr. Storch in Florida for DS who is turning 15 tommorrow. He was diagnosed with PANDAS in Jan 11' and he is also being treated for LYME as of Feb 11'. The OCD seems to be at the root of all of the behavior issues that he is experiencing. I know I asked about this a while back but can anyone share their experience from this clinic. I am bringing it back up because we are to the point of taking this step now! We were hoping DS would be ready to go back to school at the start of 9th grade but doesn't look to promising at this point. The antibotics have helped a lot from where we were Jan-Feb but we have such a long way to go. DCmom & Dedee I think you are there now or will be going soon. Hoping and praying it helps!

We are seriously considering 3 week intesive Clinic OCD with Dr. Storch in Florida for DS who is turning 15 tommorrow. He was diagnosed with PANDAS in Jan 11' and he is also being treated for LYME as of Feb 11'. The OCD seems to be at the root of all of the behavior issues that he is experiencing. I know I asked about this a while back but can anyone share their experience from this clinic. I am bringing it back up because we are to the point of taking this step now! We were hoping DS would be ready to go back to school at the start of 9th grade but doesn't look to promising at this point. The antibotics have helped a lot from where we were Jan-Feb but we have such a long way to go. DCmom & Dedee I think you are there now or will be going soon. Hope it works for you all.

Iowadawn - Yes - we are going to the doc in Iowa. This is actually the first post I have put up regarding the dx - I do more reading than posting usually. How is your son doing - have things calmed down for him. He and your family have been in my prayers.

Well I will give you our experience so far. DS soon to be 15 was diagnosed with PANDAS Jan 2011 after the start of severe exaceration as of NOV 10' -a Flumist in Nov may have been the thing that set this excerbation in motion - he was also wrestling and may have been in close contact with strep. Blood tests revealed elevated titers and family doc put DS15 on 250mg aZith end of DEC 10'. Went to PANDAS doc in Jan who recommended that we do IVIG as soon as possible. Because of what we had seen on the forum regarding Lyme we wanted to rule this out before doing IVIG based on several of the posts. Both our dogs were positive for lyme and were treated and our son is an avid outdoorsman - hunting, fishing so we figured he may be a risk and our gut told us to check into this even though he lines up with so well with PANDAS. We started working with a LLMD in Feb. who got him on high dose antibotics in addition to the azith which he was not getting relief from. DS sons major symtoms,like your sons is the severe OCD - he has been out on school since Dec. 10' - he also has many of the other classic PANDAS syptoms - age regression, seperation anxiety, emotional liability, inability to focus - especially with Math tutoring. After our visit with LLMD we decided to work with him and began treatment based on clinical diagnosis. IGENEX test came back negative overall but had some positive bands that doc said to continue treatment for. He also came back positive for HHV6 co-infection. So in Feb 11' he began taking 875mg x 2 Augmentin in addition to the 250mg aZith. He had also just started taking 25mg of Zoloft which we ended up going off of then starting back up at 12.5mg. So about 20 days into this mix we started to see remarkable improvements in son's behavior. This excerbation came with severe contamiation fears he had basically been non-functional on a futon in his room playing games or watching movies -taken over by thoughts and compulsions with a bowl of soapy water by his bed. Our house was turned upside down and we were in survival mode. When the mix started working he started coming out of his room, eating with the family, sibilings could come near him, he let the dogs come near him, started doing things outside again and things began to get soooo much better. He was functioning much better but still had / has a long way to go. Doc added Flaygl to the mix about a month ago and that has shaken things up quite a bit which he thinks is a HERX - it brought back some washing compulsions, intrusive thoughts, possibily verbal tics (could be compulsions not sure), moments of mania/hyperness, more emotional/depressed, also had more headaches and fatique. Though not a severe as before we have definately seen a worsening of the symtoms - doc told us to stop Flagyl until gets back to where his was before then we will start up again lower and slower. So the LLMD thinks the PANDAS was brought on by the Lyme infection. He thinks once we tackle the underlying lyme the PANDAS should resolve. We will just keep praying and plugging away here. I thank you all on this forum for guiding our family through this experience. We have learned so much from all of your experiences. It has been a wealth of education for us. I will be praying for your son's recovery. God Bless.

Bumping this to the top. Wondering if anyone has had experience with these doctors.

Thank you for the replies. Here is a link with some general information - http://www.mayoclinic.org/ocd/children.html. Worried Dad I agree when I called and talked to the receptionist in the psych. department she hadn't heard of PANDAS - not a good sign. My gut is to seek therpy for DS15 from someone who recognizes PANDAS - that is just really hard to find. May need to consider the docs mentioned above. Would have been a quick 4 hour drive to mayo - bummer. I do have the docs email at mayo - can't hurt to send an email his way to see if he treats PANDAS. Hope those going to Florida will get much needed results. I'll send prayers your way. Thanks again for the replies.

Has anyone had experience with the OCD Clinic at MAYO- Dr. Stephen Whiteside? It is an intensive 5 day program for children thru 18. Just wondering if they recognize and treat kids with PANDAS.

Way to go! So very glad for your family.

Does the Benonite Clay help with "die off"? How much should I use for my DS 15?

Keep hanging in their Wilma - I will be praying for you all.

wanted to also mention that my ds has had troubles with apologizing and admitting he's done something wrong. "it's your fault". "i knew that wasn't right". it's something that to an untrained eye looks like a bratty, obnoxious kid but i believe is actually a symptom. refusing to use manners such as 'please' and 'thank you' also presents. it's stunning -- when he's in an exacerbation, it's a harsh refusal to say 'please' but when healthy, it's automatic. this morning, he somehow stepped on my face while climbing into bed btwn me and dh. i said, "OW!". he said, "sorry". a while ago, he would have stubbornly fought that it was my fault for my face being there. i think sometimes the signs of healing are small and subtle -- but i'll take them!! This is very helpful for me to know as well!! My ds8 does not want to admit when he has done something wrong, and he has also had a hard time apologizing for things. Instead he will blame the other person involved. Most of the time when he has done something wrong, he will adamantly deny it and will even construct an alternate version of what happened. Even if we saw what happened he will try to convince us that something else took place. And he seems so convinced of his version of things. I was really starting to worry about this because our OT told me she would interpret this as "fantasy thinking." While it might be that, I do think it is related to PANDAS. Before his first episode he was not this way at all. I am concerned about this though because even though he is in a better place than he was a couple of months ago when he was in an exacerbation, he shows no signs of moving away from this defensiveness. Maybe it has become an ingrained habit? Or maybe he is still healing. He has become much more polite and considerate though. He also refuses to talk about or admit that anything is amiss with him. When we try to talk to him he plugs his ears and says "blah, blah, blah..." He will then hide under a pillow or run away. This is also what he does when we try to talk to him about anything that makes him uncomfortable. It makes it very hard to have a discussion or to reassure him. We are very concerned about this also. We want him to be able to process things that are uncomfortable for him. We are in the process of looking for a therapist to help him develop coping skills for the anxiety that underlies this. (He worked with a therapist and got to a much better place with his intense nighttime and separation anxiety, but we have to change therapists for insurance reasons.) What can you do for a chid who refuses to discuss anything uncomfortable??

So sorry Dawn, prayers are going up for your family.

Yeah! Great News. So happy for your son and your family.

What great news! So glad for your family. It's so good to hear about the successes. Praise God!

Don't really have anything to add. Just wanted you to know that I've been praying regularly for your daughter. I really hope you find some answers for her soon. Hugs & Prayers!!!

Glad to hear your son is making progress!

We have UHC, and Dr. K has recommended IVIG for our son. How do we find out if the procedure will be covered?

thanks adkmom for your reply. Anyone else?

DS14 is a strapping 85 lbs (not a typo) and he is currently taking 250 mg of Azith. daily. Talked to Dr. K today and he is satisfied with the dosage of the abx.