bgbarnes

My ds has definitely had night sweats- We are still pretty new at PANDAS but I would put money on it that it coincided with what I now know to be past exacerbations, I know we had it with the one that brought us to the PANDAS diagnosis.....there were times he would be completely soaked- we would change his clothes- maybe have him sleep shirtless and blankets and put him back to sleep -also coincided with night wakings every time. Brandy

He had a small setback this evening- about 20-30 minutes of defiance,rage- stuck on what he wanted to do- pupils were wide but then he grabbed a big stuffed animal hugged it, kissed it snuggled it for about a minute-then out of nowhere started doing what I had asked him to do- the things that only moments earlier he was fighting me tooth and nail on (shower and going to bed)...then the NEXT miraculous thing came out of his mouth- he said Mommy can I play baseball again- he is an incredible baseball player - was asked to join a club team etc.. and he quit- he stopped did not want to play anymore in the Spring- I am sure it was all because of PANDAS- I finally let him quit every sport because I was tired of pulling the you made a commitment so you better go to practice speech & I started digging into what was "wrong" with my son....I have not even mentioned baseball in a long time. We have plans to go to the batting cages this weekend now!

We had been on Amox and Biaxin or 8 days the last time my son tested positive....it shocked the H*LL out of me....but that is when we learned about PANDAS. so yes it can happen. I think Amox is useless on this strep. Brandy

A great way for me to start my day....I asked my son how he was feeling this morning 1 day post IVIG- His response- "Good it's all better now." I said what do you mean- he said "I don't know but it's all better now... it's all gone"( Did I mention the smile?) I don't know what that means for an 8 year old but I will take it. Now I know this can be sawtoothed but I will take that for day one post IVIG!!! Thanks for all the support and information I would not have been able to get all this accomplished so quickly without you! Brandy

Day 2 is over- he had no problems with the stick this time- had a little headache and they slowed it a little bit but no problems after that. I don't think the guys made him drink enough but I am so grateful my Dad and ex were able to be there! They said he did not ask for anything to drink _ I of course would have just told him to drink and he would of- but lessons learned! He had a headache tonight that he said was really bad 6 out of 10 for him and wanted to lay down- that was on Tylenol so I gave him prednisone- he just went to sleep said headache was not as bad......Fingers crossed!

Glad yours went well- now we watch and wait! Ours was good today as well.....He got a headache but I gave him Tylenol and then prednisone and he seems better- he just went to sleep! Brandy

Thats awesome that it went good today...sorry i missed you; would loved to have met you, but i am sure i will get the chance again. let us know how it goes tomorrow I left around 10:45- Did you see where they do the IVIG? Sorry I missed you too! We were really pleased with how they handle it and Cindy was GREAT! Brandy

Well- it started off Really rocky- my son was scared, full of anxiety and my dad and his Dad ( my ex) really did not know what to do.. He was thrashing, yelling etc...refused the IVIG....after 2 hours of this I left work (my boss was out of town Drove over there ( they had given him some benadryl that probably was taking effect too..)Got him to curl up in my lap acknowledged his fear- told him I could understand why he was afraid but this was really important for him and I needed him to do this even if he was afraid, did I mentioned I bribed him with money too - he was a champ during the stick after that and then it bent and they had to do it again- but since he knew it was not that bad he was not worried or afraid at all. Once he was set he was fine with me leaving....He just needed Mommy and to be honest i felt much better all day long too. He handled it great after that.... I hear he blew a vein and had to get stuck AGAIN but once again was not a problem at all- he had worked up this big fear and once he tackled it it was not a big deal anymore- he just complained about being BORED.....He got a little bit of a headache- they slowed the drip and put a wet washcloth and tilted his chair back and was fine after a little bit. The nurse was wonderful- the great news it is the nurse we always see at the office so there was familiarity- the staff could not have been nicer, considering he was yelling and screaming for hours prior to me getting there- I would have been a little grumpy after that! He said he felt weird before bed like there was a cloud in his head- don't know if that was benadryl or IVIG- he did not do any rituals ( all we had was hand even touching- his need for closed doors had gone away a while ago) that I have seen- he also wanted to interact/play with his sister this evening. His hand "touchy thing" as we call it had Greatly reduced since the steroid burst. The most wonderful thing I have seen post burst was his interaction with his sister- he actually is nice to her more often than not- let her win a game on the Wii last night, looking to play with her this past week, standing up for her etc...and has eaten his dinner when asked- he always had some sort of complaint before. Not sure if I had posted that we had seen these improvements or not yet. He did admit he was tired tonight but wanted to play a game with me since he was SO BORED all day- so we did and then I snuggled him extra long tonight because Mommy needed it probably more than he did but he did ask for a few extra minutes that I happily provided. One down and one to go!! Brandy

If it is like mine- he will probably suggest a steroid burst- which he can't prescribe so you will have to find another Dr to do it...then you will watch your ds from days 6-21 and then report back your observations- positive or negative....Then if positive he would probably suggest IVIG ASAP before school starts. Some parents I have read have been able to forgo steroid burst and just go straight to IVIG. I wish I would have asked more questions about OK- after IVIG what is your process, healing recovery etc. Percentage of kids that need more than 1 IVIG, how often do they get it? Why he likes IVIG, his thoughts on PEX, What should I expect if my ds is exposed to strep or myco after IVIG? Will we be on ABX? If so how long? Hope this helps- let me know how it goes! Brandy

My ds is having his first IVIG tomorrow with a local Doctor- he going to use Dr K's 1.5 over 2 day protocol but I am still nervous....mainly because I can't be there- yes that is right I can't be there. I started a new job today---- I had set the start date several weeks ago and could not change and the local Dr is leaving town at the end of the week for a month....The timing was Now or not get it done before school starts with adequate recovery time. My Dad is going to take him and my ex husband will be there...but I will not- I can't tell you how hard it is not to be there but I wanted to get it done sooner vs later as that was the best thing for my ds....I have to have faith all will go well! Needless to say I will have my phone with me at ALL times!!! Wish us luck! Brandy

I can't answer your question about prophylactic dose but I wanted to reach out and say you are in the right place...your son sounds a lot like mine- we have only gotten the PANDAS diagnosis in the past few months. He has been mistakenly diagnosed ADHD in our past- your description of your son sounds JUST LIKE MINE!!! I think we have been dealing with this for years. I also don't have a definitive "trigger date" but I can look back and say around 18 months something shifted. You are in the right place- the parents here are an amazing wealth of information and support! BRandy

Great news! Which local doctor are you seeing? Deb- Same Dr I have been seeing. that is VERY close to where you live..I will PM you! Brandy

I signed on just to check and see if you got your results yet! Sorry it is taking so long! I got mine around 10:30 pm the night I got the email....

I am so excited and nervous- we just scheduled IVIG next week with a local Dr that is going to talk to Dr K and follow his protocol!!! NOT to mention he is IN NETWORK with United Healthcare!!! I can't believe things are falling into place! It is faster than I originally expected but we want to give him time to be ready for school! Brandy

I had emailed him after sending everything I had so far and asked if three was anything else he wanted- that is what he asked for. I would email him and see if he needs it. Let us know how it goes! Brandy

Thanks kimballot! Right now I am trying to get our local immunologist who does IVIG to adapt to Dr K's protocol- 1.5mg instead of his standard 750mg- Dr K agreed to talk to him. If I can do it locally and he is in network ( I have United Healthcare) it should be so much easier!!! I am not even sure I will try to get pre-approval since UHC covers PANDAS for IVIG. I would rather do it with the assumption that they will pay for it since it is in their paperwork and fight them if they end up denying it- need to study my plan. Hoping for good results!!! Brandy

Wow-Good to know!!! I would love to avoid it if possible and gain the time to do IVIG sooner. Definitely a consideration- now do we start it today or not! I am trying to get our immunologist to do the IVIG here with Dr K protocol- so we shall see! Thanks! Brandy

MY son is 70 lbs and we are doing 30 mg 1x a day ( in the am) for 5 days. 1mg per kg of weight. Hope that helps. I would do it before you talk to him and track the changes and your observations from days 6-21. He wants the report on day 21. It will save you a couple of weeks and get you to IVIG sooner! I had every possible blood test run, a detailed history spreadsheet and written...I even sent a video of my son and his rituals- don't know if he saw it but he said he did not need anything else from me- just the steroid burst. Have you done the circulating immune complex yet? Good luck! Brandy

WOW! Tenacity I can't even imagine- no my son is not as severe as your child and he is younger- he just turned 8. I am very hopeful we will be able to improve his percentage recovery by the time school starts. I am also very impatient- I want recovery NOW! as we all do. We have been probably been dealing with this for more than 5 years and only finally got a diagnosis so I am happy to finally have a diagnosis and a plan of action. Thanks for the input! Brandy

The phone consult with Dr K went well.....Wants us to do a steroid burst before we move towards IVIG. I have to admit I am scared to DEATH of putting my ds on a steroid burst- I know it can have an opposite effect on PANDAS kids but what if it doesn't- dear God help us ALL!!!!! Time is of the essence because he would like to do IVIG and give it time to do it's job before school starts..... if he responds positively to the steroid burst. What type of results is he looking for? Brandy

many there is a good Doctor in plano that can help-I will Pm you my contact info so we can talk! Brandy

I would call now...to see if it is there...if not..maybe you can fax the rest>>>> It got there- woohooo-I even included a video of my son and his even touching OCD......now to wait until tomorrow!

everyone I just checked and we have slipped to #6- Keep voting! Brandy

We have our phone consult with Dr K tomorrow- Any thoughts or suggestions>? What should I expect? I am excited and nervous at the same time! Of course Fed Ex has not been able to deliver my package for the past two days with more info for him...I am going to have faith that it will get there today. Brandy

Congratulations!! We are all so proud of you! You really are doing a great job taking care of yourself! Brandy