melanie

Whos Sally?? Good response!!! Melanie

I think you're right to look at the meds. I'm wondering why the zoloft was added, since it sounds like he was doing so well. Wanted to share my experience with risperdal. It worked pretty good (not great though, too much going on w/ the PANDAS to know exactly what was doing what) at 1st, maybe because it helped her to sleep better? After a few months though, the effectiveness seemed to wear off, and a month or so later it actually seemed to be increasing rages and irritation- taking her off of it at that point really improved things. As you probably know, risperdal is a dopamine blocker. Zoloft does have some dopamine re-uptake inhibition effects as well as being an SSRI... Sure hope you get things straightened out for your guy and this ticcing doesn't get worse! Do you think its the zoloft?"

He hasnt been on antibiotocs since like june

We are seeing a infectious disease md tuesday is that like the same as a immunologist

I made a comment at the bottom of the page( Oh I feel like one of those bloggers )I wrote" think you need to look into this more before you make such a determination.My son has tics tourettes and it was caused by strep"!!!

Well most of you know our story Danny 15 4 weeks post IVIG still no antibiotics.We are seeing the infectious disease Md Tuesday .hopefully we will continue treatment with Antibiotics or IV monthly .If not I will try something Else.Danny's has been ticking alot his tics are curses so they are very obvious.When he hears people speak if you stammer he hears what he calls stuttering ,We had had hearing tests etc. 2 weeks post IV no ticcing no cursing life is wonderful.oCD no comparison pre IV like nothing .His OCD was WW11 but like Hitler and well ,,Now its not even intrusive .Behaviors pre IV horrible.Started risperdal in end of June .Much better but not like its been for the past month .Hes been sooooo great .School(special ed school) perfect days,His therapist is amazed at his progress too,so I know its not just me. The only thing we have done is added zoloft so I'm thinking maybe ? It could be a coincidence?sp) I'm not happy !!! Help maybe it will never get better .... Melanie

I keep reading about thecunningham tests and I havent done that.How do I get this ?Do I have to ask a md for a script ? Melanie

I just hung up the # with the md He said after I see the infectious disease md om the 13th he will do whatever he suggests. Hes hoping that danny can get monthly infusions but still wants to wait until then. He had a culture too and nothing no strep his behavior has been very good although yesterday was a little off a little ocd popping up too. Still nowhere as bad as before Mel

Danys titers are normal so his neurologist says no antibiotics!!! 3 1/2 weeks post IVIG He says he doesnt need it Melanie

Hi Bubbasmom Our sons neurologist did his IVIG others used different mds Melanie

.His neuro kindof doesnt do the same xact protocol as the mds you see on this board,and I dont know why.Dannys not on antibiotics now and I keep asking for them.Im going to see a DR.Bal hes friends with Sultan and he is into the Pandas dx too. Hes a infectious disease md.He uses penicillin thats what dr.sultan wants us to do Dr.Bal is also in the neptune area I never met him our app is oct 13th. I just had his titers done again this week Sultan did say if his #s were high he would use antibiotics Im calling monday Melanie

Its been 3 weeks since the IVIG treatment and Ive got to say things are pretty darn great around here. Sure hes still ticking a bit remember Danny's tic are mostly cursing.He has a foot twisting tick but were trying to get him to tap instead of twist. Its funny ,,that twisting is exactly like Sammy's twisting on the video.Any way we are sooo happy and sooo blessed to have had the treatment .Now I know the issues he was having has to do with the brain the Basil ganglia to be exact.Or thats what i am to assume because thats what the IVIG targets Right?/??My new question is how long does the IVIG last ??Please all of my smart IVIG PANDAS friends that have saved our son and our family and who I will be grateful to forever..Is there an answer?Or do I just wait and see Melanie and Danny

Have you tried the agencys in your area In NJ we have a crisis managment cant think of the name maybe someone will know. a LOCAL Psych will know , you can call them when things are unmanagable and they come to your house and help difuse the child untill ....They were a great resource for me Im leaving for work so I cant find the name . I know its a crisis team They want to do everything to keep the kids in the home .i would even call them and they would talk to me when I needed some calming.It will get better Melanie

WHAT IS TURNING BACK THE PAGES MEAN?

were about 20 days also 1st IVIG some good days and some ok days My dog is sick and on antibiotics Im going to get a strep test in the am cause my throat is feeling weird danny has allergys daughter has a cold Danny was tic free for about 5 days they are alot less but back non the less DOes it get better or not?

Are allergys the same as other infections when it comes to PANNDAS? Danny is cleaing his throat alot Will allergys bring on symptoms

me too!!Im in!!

Hi I wanted to tell you your not alone.I to have a ASD son hes 15 and has had PANDAS for several years un dxed until recently .All MDs are different especially when it comes to PANDAS.I had to use risperdal because his behavior was so bad .It did help alot .Hes still on it and I am not thrilled but for now it is what it is,We recently did the iv and am having results But this is md # 8 soo keep looking this site is a great ask questions I did !! Melanie

Ill call the ms as soon as his office opens today What should I tell danny Hes upset tha the hopspital didnt work .I am so sad I hear what yhou guys are saying and I need to hear that its ok but I am still real real sad.I hope school goes ok today Have a nice day Melanie

Thanks but its normal to get great then not great?

When you say up and down do you mean good days and then bad ones tic wise and ocd wise Hes ticccccing so much ( verbal )Im going to cry

You would think Is it to late now ?If he doesnt Ill go to the md and tell them im sick and get some I dont know why you would do the IVIG and not follow with the protocol I just dont understand why? He is ticcing and spacy again I am misrable

Well I think Dannys ticcing again Probably because hes not on any antibiotics!!I called the MD he called me back but I missed the call.Oh MY GOD I cant take this !! Its definitly not as bad not even close and his behvior is very very good .He seems to tic or curse (maybe its a compulsion not a tic)when hes frustrated. My dog is sick again maybe shes getting him sick .My daughter has a stuffy nose(allergys?) Tok her to the MD no strep .I need a bubble for him. Maybe this didnt work But I saw some unbelieveable days .Maybe a fluke? 3 weeks post IVIG tomorrow. Hes 15 maybe it didnt work . Melanie

Still not on antibiotic I see the infectious disease MD on the 12th of Oct hes away and the nero want him to see him 1st I said why and thats what he does He also says he may want to use the IVIG again !!! Im confused but thats what he says

Still not on antibiotic I see the infectious disease MD on the 12th of Oct hes away and the nero want him to see him 1st I said why and thats what he does He also says he may want to use the IVIG again !!! Im confused but thats what he says