melanie

Bewell My son sounds very simular to your also on the spectrum movent issues and verbal ticsss dxed with pandas and 1 iv so far hoping for another this week .My t insurance also approved due to immune defiencys .How were you approved same?what kinds of tics does your son have?Who does your IVs?What state do you live?My son is 15 and the pandas symptomsarenot great now.Is your son on antibiotics?Sorry to be so nosey if you dont mind can you answer these questions Thanks Melanie

dannys IgG levels are below normal and were way before he started on clindimicin.I even asked that question to Dr T .So I dont think that thats always true.But Hey I am confused by how this whole thing works anyway. I just want them all to get well. Melanie

Hi We do have experience I am hoping we will ahve more experience we are waiting to do a second dose soon. I saw all of dannys verbal tics disapear about 2 weeks after a low dosage of IVIG but it all came back .I was told he probably needed more so well were waiting.His OCD was also almost completly gone It was amazing .I cant wait to do it again..Everyone told me to be patient ,so thats what Im going to suggest .I did see improvement but it takes time.Around this time 2-3 week mark .I know you will see something .This is really hard waiting and watching your daughter .Shes going to get better.The holidays are very stressful for our kids so maybe her system is just a little out of sorts.W?B this week and let me know how she is . God bless you all Melanie

hes on clindimicin how much probiotics can you give to much?

He gets probiotics 2x a day now, How do I know thats what it is ? Hes so unhappy hes like climbing out of his skin. Melanie

What doI do howdoI know thats what it isI reallydont want to go to another dr Im tired Is there something i could do that doesnt make me go to a md.

Danny is very hyper and hyper sensitive the past 2 days .I know its the holidays but I cant really talk to him hes talking about stuff OCD thats in his head and he is moving around alot.He normally can watch tv movies for hours ,now hes so hyper.Could it be antibiotics? Hes really never hyper,sometimessensitive but not like this..I cantwait untill monday ,so the insurance company the IVIG company and Dr T can all just get this IV thing in place He needs it sooooo bad .I wish it was monday ,todays my birthday and all I can think about is healing this kid and all of our kids.I want the weekend to go fast .Oh andhesdoingalot of finger movement too Any suggestions Melanie

So are you saying that kids who were treated early on in life and then not treated and then treated again can be cures and are they treated with IVIG ?This stuff baffles me.

Lets ask the kids !!! They are always good for an answer!! Merry Christmas Dr.T The Seratelli Family

Ill Let my husband know you said it ok LOL Merry Christmas

Dr T called YEA!!! everthing gonna be ok I love that DR!!!! thanks for listening everyone Melanie

And its christmas I was sooo greatful 2 days ago singing dancing .I was even happy that my mother in law was comming haha Now I hate everyone and everthing even christ,mas I am a teacher and Im off for the next 2 weeks most people would be happy I wish it wasnt the holidays because everyone is off and no one can help me I am sad Melanie Thank You Vickie that was very thoughtful.I know I have been testy .my husband says Im always snapping at him.Its very diffucult to watch your kid go through this.I love him so much .So close yet so far..OK Dr T I need you !! melanie

Just wanted to know if anyone did infusions with infusion companys at home? Melanie

It's a whole load of crap!!!! The big hurdle is supposed to be the insurance! I'm praying that this is all settled soon and your son is on his way to recovery quickly! Thanks Peg This is so not even funny I cant believe this is going on Im sick !! This has really stumped me .I hope Dr T calls back Hey Peg would you do the infusions at home?\\ I would not do the infusions at home (I was a teacher, until I had to resign to take care of my daughter). But, if you are comfortable doing them at home...I'm just not, because I don't know what I'm doing. Do you think you can do it yourself? I've heard of people with MS who do their own infusions. I wouldnt do it I would have an infusion company do it Im in contact with one now hopefully Triffiletti will continue to treat him at home

And its christmas I was sooo greatful 2 days ago singing dancing .I was even happy that my mother in law was comming haha Now I hate everyone and everthing even christ,mas I am a teacher and Im off for the next 2 weeks most people would be happy I wish it wasnt the holidays because everyone is off and no one can help me I am sad Melanie

It's a whole load of crap!!!! The big hurdle is supposed to be the insurance! I'm praying that this is all settled soon and your son is on his way to recovery quickly! Thanks Peg This is so not even funny I cant believe this is going on Im sick !! This has really stumped me .I hope Dr T calls back Hey Peg would you do the infusions at home?\\

Ok so Dr S called back he wont do it because the approval from the insurance came from Dr Triffeletti OMG I cant take this anymore I hope Dr T calls me back Im so upset unbelieveable I think this is crap melanie

I just called Dr T and left him a message hopefully he will call me back.I know that the 1st Neurologist Dr S is insulted that Dr T got it approved they dont understand how he did it I said who cares how the point is you told me it had to be approved before we went forward. Ok so were approved .NOw thats not good enough Dr S's office said they are going to call me before the day is over so hopefully they do I highly doubt it, It never ends Melanie Sounds to me like Dr. S told you that as a way to refuse to do it (boy did he underestimate you!), without taking responsibility for refusing...he thought you'd never be able to get it approved thru insurance. It'd be comical if it wasn't your child's treatment on the line! Do you even believe this crap OMG now what I hope Dr T comes through I will do it at home or should I just go somewhere but where I have the approval Im afraid if I go to another md my insurance comp will be like hummm

I just called Dr T and left him a message hopefully he will call me back.I know that the 1st Neurologist Dr S is insulted that Dr T got it approved they dont understand how he did it I said who cares how the point is you told me it had to be approved before we went forward. Ok so were approved .NOw thats not good enough Dr S's office said they are going to call me before the day is over so hopefully they do I highly doubt it, It never ends Melanie

I just spoke with dr S office now it seems he wants Dr T to have the IV done as a home infussion I give up I thought everything was going to be ok now Its not

Ok so the insurance company approved the IV and now the neurologist has to get the hospital to approve the procedure for the dx of immune deficient .Why why????? I have a feeling hes not going to do it for me.I also know that Im not going to know anything untill next week because of the holidays. What should I do? Why does this seem to get more diffucult.Should I go somewhere else Now I have the insurance company who I hated last week who I like this week and DrT who got him approved.And Dr S who wanted to do the Iv again who now Im not so sure wants to do it now ,who wanted the insurance company to cover the iv and now they are see why im confused!! HELP Melanie

Well I spent most of the day on the phone for a change I think the md who did dannys 1st IV is going to do this one hopefully he will consult with Dr T I would like Dr T to do it but he cant yet so . I think Dr S is going to call Dr T hopefully they can touch base and get this done next week because Im off for xmas break .I know now its not about what i want. Melanie

I would like to chime in on this Dr T If it wasnt for your concern for Danny I wouldnt be waking up today with a smile and hope! We did get the approval last night and I will call you today.I want everyone to know that I have been going through this PANDAS thing with my son for 2-3 years and it is utter ######!!Dr T always calls back when he can.He has done what he said he would do . I hope that you can continue to grow your practice and help heal our children because we are all just here for the same reason,We love and adore our children and want them to be well again.This forum is sooo important to me if it wasnt for the people here I dont know what I would do.I wake up every morning to see how everyone is. I hope everyone has a nice day and Ill let everyone know whats going on here Melanie and danny

Ever since danny was little about 4 or 5 he has done a gazillion blood draws and what always untill this day worked was the abc song I know it sounds funny even now hes 15 we sing the abc song it looks redic now but it works also we used to go to toys r us .ps he hated the band aids with the pictures try a special song to distract him.. good luck melanie