melanie

Ok yes my mds all s--k Iam fed up with them One day you think great this guy gets it,Then well im back where I started. I am seeing the neurologist that did the iVIG at the end of aug,but dwouldnt do it again yesterday because the insurance comp challenged him.His a butt face!! He said that if its pandas he should be cures from 1 dose..Well not always doc!! Anyway my sons pediatrician said he will order the monthly IV he just doesnt know the dosages .Im faxing Dr.K his records today maybe he will talk to the pediatrician .So I am going to ask the neuro butt head if he will give him the zith so 500 mg a day for 2 months?

I know ive read it a million times but whats the "dosage" 135lbs? Is it a good idea to do this while i wait for the ivig? Melanie

Well it was a busy day The immunologist he did some allergy tests all negitive.He also recieved dannys blood work from another md and all the tests were negitive so that stinks.His pediatrician said he would order the iv monthly in the home but he wants to speak with the neuro who wont do it I dont think the pediatrician and the neurologist like eachother.I know why..Hopefully the pediatrician will do this even without the tests .He did say he didnt know the dosage for the iv and has to talk to the immunologist or neurologist,both who say he doesnt need it His ticcccs are horrible today but we spent the day in and out of drs offices. Im missrable confused and fed up I dont know what to do next anyone have a 130lb 5'8 1/2' son with tics who gets iv monthly that can tell me the dosage?not kidding im desperate. Melanie

We got an appointment at 10 what tests do I ask him to do ? Melanie

I have an appointment at the immunologist tomorrow.Im hoping to get proof hes immune deficient. What do I ask him to test for? Melanie

OK Ive spent the morning on the phone with the md.He now says there was a study that came out last week that included 50,000 patients treated with iv and basiclly it doesnt work.I beg to differ .I dont understand what happend he oked the 2nd one now since the insurance comp said no and he has to call he doesnt think iv every 6 weeks is the right thing .My husband called the office and freaked the dr wont take his call had the girls read 2 lines from some resent study which my husband couldnt understand.We googled this study cant find the information anywhere.We have an app to see him on thursday.I am in contact with an immunologist.I can see her this week what do I need to do to gwet him a dx of immune diff.?HELP

Im waiting for the dr to call how do i get him to say pid he had a ton of blood work I havent recieved any results he did have iv when he was 3 or 4 they came to my house for about 6 months Im upset

Im scheduled to go tomorrow! The insurance company denied the claim thoughHe has to do a peer to peer thing.I dont think he wants to .Hes not in yet.The office says they will talkto him when he gets in about 10am.The problem is danny doesnt have the strep titers #s to prove this My point is they approved it already so the #s didnt change

I thougt so? I have to wait for the neuro to get in to the office My insurance company said ivig is experimental for pandas But they approved it in aug so why is it now 1 1/2 later?

Im on hold with the insurance company now.They said no to the second IV !! What do i do???

Great!!!I hope this trend continues for him.He sound like a great kid.Good job mom

We did this for a while 1 time it was called empowered learning Good concept but I think it was a sales thing we did it for a year it cost 6,000 dollars Then we did a simular thing with a reputablr md we purchased glasses too .I think the idea is great I know theres science behind it.It gets expensive but hey what do you have to loose? Melanie

It was great for a few weeks but now the tics are back.His behavior is much better but the tics are back he has a verbal tic.I didnt notice anyhing untill about the end of the 1st week.Then omg it was like he was totally cured.Behaviors very little OCD not talking to himself.But well its back so the neuro is going to do it again.Keep a journal so you can see the reslts .My son is older so results are going to be different then the younger kids.Keep us posted you will see some benifits soon everyone told me to be patient.

Hi dannys going on tues to get the IV again.Im happy but Im hoping to get better results this time.Any suggestions? Melanie

Ok not sure Im going to say this right but... Does the chicken pox vac have eggs in it? (Allergy) We had the vaccine and danny got the chicken pox so I guess it wasnt full proof unless hummm maybe it was a rash.. I ordered his pediatrician to make copies of all of his records.46 pages OMG hes 15 so obviously something was going on.And they are charging me 46$ 1$ a page.I guess its for the paper. Melanie

Be careful with the ssri with pandas .Ive tried I think eveyone of them the last one being zoloft with horrible results.Someone posted this awhile ago but I never listen. Melanie

Our 10 yo son is on Risperdal 3mg/day, split as 1mg a.m and 2mg p.m. for rages and the like. It and Namenda (probably more so) have helped some. I repeat, some. Nothing else has. I gather, it needs to be 2x a day. Are you just taking it one time a day? When were were on 1mg, or 2mg it was always split a.m./p.m. Our psych cautioned us about the possibility of akathisia--the an inner feeling of needing to move. I am certain we are seeing that based on what I like to call "the wedgie wiggles"! They have given him a tiny dose of a drug to call that down. I hate it, but we are only out 3 weeks on IVIG. We can't be titrating yet, but that is Dr. K's plan once we get a good stretch of holding improvement. Our experience. Dawn Bubbasmom- I hope this ends up in the correct place in the thread! The very same reasons we are on it. Our goal is to get him off in time. IVIG with whom?? Dr. K said the older kids tend to have a bumpy road to recovering. He said younger kids tend to improve and just take off. I gather from several of the parents with older IVIG kids experience some pretty bumpy times in the initial weeks post IVIG. We have not had anything as bad as what we have had. I would say it is different. The flipping out times aren't as intense and don't last as long. Is your boy still pre-puberty? Dr. K is very optimistic even though Evan has had this a long time. Best wishes tomorrow!! smile.gif Dawn Hi my 15 year old son has been on risperadal since June 2009.Initially is was amazing he started on .25x2 now he is on .5 2x a day its ok not the cure all hes 130lbs also. The psy wanted to raise the dose but we wanted to wait until after the IV.Well its 7 weeks and the results are good and not so good .Were waiting for maybe more IV (we hope) The rages definetly arent as bad as before the risperadal and they are way better then before the IV. last week we had 2 rage attacks post IV and on antibiotics so we arent very happy.Today was a good day and hopefully we will speak to the neuro and he will agree to do the monthly iVs Good luck tomorrow and keeep us posted on the progress with your son. Melanie what do you mean you switched pills? New to the risperadal? Or a new added medication.Today is the day you will get the IV or am I now totally confused ?I have to go to work and they block this forum.Ill catch up with you later .Have a good day. Melanie

Our 10 yo son is on Risperdal 3mg/day, split as 1mg a.m and 2mg p.m. for rages and the like. It and Namenda (probably more so) have helped some. I repeat, some. Nothing else has. I gather, it needs to be 2x a day. Are you just taking it one time a day? When were were on 1mg, or 2mg it was always split a.m./p.m. Our psych cautioned us about the possibility of akathisia--the an inner feeling of needing to move. I am certain we are seeing that based on what I like to call "the wedgie wiggles"! They have given him a tiny dose of a drug to call that down. I hate it, but we are only out 3 weeks on IVIG. We can't be titrating yet, but that is Dr. K's plan once we get a good stretch of holding improvement. Our experience. Dawn Bubbasmom- I hope this ends up in the correct place in the thread! The very same reasons we are on it. Our goal is to get him off in time. IVIG with whom?? Dr. K said the older kids tend to have a bumpy road to recovering. He said younger kids tend to improve and just take off. I gather from several of the parents with older IVIG kids experience some pretty bumpy times in the initial weeks post IVIG. We have not had anything as bad as what we have had. I would say it is different. The flipping out times aren't as intense and don't last as long. Is your boy still pre-puberty? Dr. K is very optimistic even though Evan has had this a long time. Best wishes tomorrow!! smile.gif Dawn Hi my 15 year old son has been on risperadal since June 2009.Initially is was amazing he started on .25x2 now he is on .5 2x a day its ok not the cure all hes 130lbs also. The psy wanted to raise the dose but we wanted to wait until after the IV.Well its 7 weeks and the results are good and not so good .Were waiting for maybe more IV (we hope) The rages definetly arent as bad as before the risperadal and they are way better then before the IV. last week we had 2 rage attacks post IV and on antibiotics so we arent very happy.Today was a good day and hopefully we will speak to the neuro and he will agree to do the monthly iVs Good luck tomorrow and keeep us posted on the progress with your son. Melanie

OMG us too. Im never sure what it is but even when danny was little this is when he would have the croup real bad. I remember stocking up on all of the breathing meds.Also Danny has had 2 rage attacks this week and he is itching his eyes alot.He noticed the moon last night said it looks cool.Im a middle school teacher and I havent noticed the kids to off the wall but .. We were told when the holidays are approaching ,Halloweens comming but hes 15 and were past that excitement stuff. I think theres some allergy that affects certain triggers. Good Post Have a good day

We had the appointment and the md agreed he should do the iv agagin He has to talk to the nero but maybe 1x per month.Ill find out more monday.The mds do rounds together in the hospital and they will talk there .Hopefully this works out. Melanie

I use a canadian pharmacy for my dogs prescriptionsmmI have to run out but ill give you the name and # later It takes a long time but..It is a human perscription but we give it to the dog sooooo much cheaper about 800.00$$cheaper

Hi todays the follow up app /I want to get danny dxed immno comprimised so he can get iv 1x per month.Thats a good idea Yes?Hes been on the antibiotic for 10 days I think hes had 2 rages .Not good.I dont think this is going to go the way I want .I think the md thinks Im crazy.Hes best buds with the neuro that did hus IV in sept.The neuro took 1 look at danny and said Pandas.This md thinks well I dont know.I know I think about this all day long. I have to go to work and they block this forum. I cant read all day .probably a good thing.If anyone has any advice please email me mgss4@aol.com,I can read my emails. Thanks Melanie

I think autism would have been her "diagnosis" and they would have looked no further for explanations. I do think my daughter's autism is caused by PANDAS, and medical neglect. Amazing how doctors will dismiss everything that happens to an autistic child as just part of autism. I'm exaggerating a bit, but there were times when I was sure if her her leg were chopped off and spewing arterial blood they would tell me that's common in autism! I don't think all autism is caused by PANDAS, but some is. And the crazy thing is....they've got no business "diagnosing" autism anyway- its not a diagnosis, just a group of symptoms that, when they happen together, are labeled autism. It seems like if doctors understood that- then they'd be asking about what causes those symptoms instead of dismissing them as somehow normal for "these kids." Okay, done with my rant, for now. As you can imagine, I feel pretty passionate about this, so can't promise it won't happen again! Hi Danny 15 has ASD sometimes a md will call it aspergers sometimes PDD nos some drs call it spetrum disorder and some call it high functioning autism.I agree whith pglem He had something that was made worse or different with pandas. If I knew then what I know now who knows it could be called something else. melanie

Melanie, have you had your son tested for an primary immune deficiency? I know this isn't what you want to hear, but from your experience with IVIG (effects seemed to wear off after a month) it seems like your son might need it monthly. In which case it seems like you might need an immunologist to prescribe it monthly? My understanding (could be wrong): Dr. K will probably do IVIG again, but you will have to pay out of pocket and hope for reimbursement. Dr. L might be hesitant to order it again since you have just done it, and there may be more going on than just PANDAS. Are you working with an immunologist? If you can find an PID, the ped might do more ivig for that... I do wqnt him dxes with an immune issue but how? When he was 3 or 4 he was and had iv 1x per month .So your saying if the iv wore off after 30 days its likely that he has a defiency? How do I convince the md.Yes I want to get dr k to speak to the neuro if I need to Help!!! melanie ps he wont do math again

Having a phone consult with dr k next wed wanted to know in the world of pandas whos got more credibility.I see alot of dr latimires writings none really with dr k.Im tring to convience my dr that titers arent everything.And to do more iv Hope todays a great day for everyone .PLease melanie