tics worse even after IVIG

[momofgirls]

So my daughter presents mostly with tics mild OCD/anxiety. She had a small dose IVIG about 6 weeks ago and another larger dose 2 weeks ago and her OCD/anxiety seems to be gone...for now but her tics have gotten much worse. Dr B did a steroid boost earlier this month and she improved but as the dose was tapered down tics returned. Last week she came down with a mild cold and tics started flaring. Dr B started another steroid taper 4 days ago and she still has not improved. Right now I don't know if this is happening because of her cold or if she just isn't responding to IVIG. Her cold was very mild so its hard to blame all this on the virus. She seemed to respond so well in the beginning to steroids so we were hopeful about IVIG but now I just don't know what to think. Any of you think the IVIG could be making things worse temporarily? Anyone have any experience with IVIG and tics and how long it took before you saw improvement? Really down these days so any thoughts appreciated.

[Worried_Dad]

After our son's 1st round of IVIG, his OCD improved dramatically, but his tics did not. About 6 weeks post-IVIG, he developed his 1st vocal tic - a bark that evolved into an ear-splitting screech. So the IVIG did not improve his tics, from what we saw.

 

I know other parents have reported that tics are the "last things to go" when their child was healing post-IVIG. Dr. K also told us that he believes IVIG is generally more effective for the OCD part of PANDAS, while PEX is generally more effective for the tic part.

 

Don't know if that helps. Hope your daughter gets relief soon!

 

 

So my daughter presents mostly with tics mild OCD/anxiety. She had a small dose IVIG about 6 weeks ago and another larger dose 2 weeks ago and her OCD/anxiety seems to be gone...for now but her tics have gotten much worse. Dr B did a steroid boost earlier this month and she improved but as the dose was tapered down tics returned. Last week she came down with a mild cold and tics started flaring. Dr B started another steroid taper 4 days ago and she still has not improved. Right now I don't know if this is happening because of her cold or if she just isn't responding to IVIG. Her cold was very mild so its hard to blame all this on the virus. She seemed to respond so well in the beginning to steroids so we were hopeful about IVIG but now I just don't know what to think. Any of you think the IVIG could be making things worse temporarily? Anyone have any experience with IVIG and tics and how long it took before you saw improvement? Really down these days so any thoughts appreciated.

[melanie]

So my daughter presents mostly with tics mild OCD/anxiety. She had a small dose IVIG about 6 weeks ago and another larger dose 2 weeks ago and her OCD/anxiety seems to be gone...for now but her tics have gotten much worse. Dr B did a steroid boost earlier this month and she improved but as the dose was tapered down tics returned. Last week she came down with a mild cold and tics started flaring. Dr B started another steroid taper 4 days ago and she still has not improved. Right now I don't know if this is happening because of her cold or if she just isn't responding to IVIG. Her cold was very mild so its hard to blame all this on the virus. She seemed to respond so well in the beginning to steroids so we were hopeful about IVIG but now I just don't know what to think. Any of you think the IVIG could be making things worse temporarily? Anyone have any experience with IVIG and tics and how long it took before you saw improvement? Really down these days so any thoughts appreciated.

 

 

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

[mom2gsd]

I completely understand your frustration. My son will be 14 at the end of Feb, he has had PANDAS (or at least the dx) for soon to be two years. My son also has the dx of autism since 3yrs. Over the years he would regress after illnesses, and had strep many, many times, eventually he received the dx of dyspraxia (movement disorder), but now I believe that he had PANDAS all along. When he was 3, at the beginning he had very mild autism (PDD NOS), of course doctors would continue to explain that all asd is different, that's why it is called a spectrum. My son how receives IVIG, and will continue for 4 more months (Insurance approved). Are his tics gone, NO.....early on they almost went away, then he was again in contact with strep and they returned, overall he is better but he is not tic free, and continues with the movement disorder. Sometimes I can't tell what is dyspraxia and what is PANDAS, or is it the same?

[EAMom]

Is your dd on abs? Which one and what dose? And how much does she weigh?

 

I would check family members for strep (to check for carriers--throat cultures) just to be sure there isn't strep in the household.

 

I would agree with the others that tics take the longest to go away, so there is a chance this could be a temporary "flare from the virus". I also think a recent IVIG (2 weeks ago) "stirs things up a little" so you might have new symptoms/return of old symptoms after a recent IVIG.

[sf_mom]

My recommendation is to increase the antibiotic for 10 days as a trial. If she improves...... 'demand' an extension of the higher dose.

 

-Wendy

[Tattoomom]

Dr. K also told us that he believes IVIG is generally more effective for the OCD part of PANDAS, while PEX is generally more effective for the tic part.

 

 

Dumb question, but what is PEX??

[sf_mom]

Dr. K also told us that he believes IVIG is generally more effective for the OCD part of PANDAS, while PEX is generally more effective for the tic part.

 

 

Dumb question, but what is PEX??

 

 

Plasma Exchange.

[melanie]

I completely understand your frustration. My son will be 14 at the end of Feb, he has had PANDAS (or at least the dx) for soon to be two years. My son also has the dx of autism since 3yrs. Over the years he would regress after illnesses, and had strep many, many times, eventually he received the dx of dyspraxia (movement disorder), but now I believe that he had PANDAS all along. When he was 3, at the beginning he had very mild autism (PDD NOS), of course doctors would continue to explain that all asd is different, that's why it is called a spectrum. My son how receives IVIG, and will continue for 4 more months (Insurance approved). Are his tics gone, NO.....early on they almost went away, then he was again in contact with strep and they returned, overall he is better but he is not tic free, and continues with the movement disorder. Sometimes I can't tell what is dyspraxia and what is PANDAS, or is it the same?

 

 

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

[nevergiveup]

I have called dans, neuro's and others to find someone whom can tell me that IVIG helps with tics, becuz my dd was unrecognizeable approx. 3 weeks after IVIG with tics. Everyone said ivig helps a little. Its the ocd and anxiety that it helps most with.

But she was happy for the first time in years with or without tics. She now is on monthly ivig and her tics are minimal. Hang in there for several months maybe a year it will help just not right away for everyone. Please report to us what bouboulis says, does he feel ivig will reduce tics?

 

 

irls' date='Dec 26 2009, 10:59 PM' post='49813']

So my daughter presents mostly with tics mild OCD/anxiety. She had a small dose IVIG about 6 weeks ago and another larger dose 2 weeks ago and her OCD/anxiety seems to be gone...for now but her tics have gotten much worse. Dr B did a steroid boost earlier this month and she improved but as the dose was tapered down tics returned. Last week she came down with a mild cold and tics started flaring. Dr B started another steroid taper 4 days ago and she still has not improved. Right now I don't know if this is happening because of her cold or if she just isn't responding to IVIG. Her cold was very mild so its hard to blame all this on the virus. She seemed to respond so well in the beginning to steroids so we were hopeful about IVIG but now I just don't know what to think. Any of you think the IVIG could be making things worse temporarily? Anyone have any experience with IVIG and tics and how long it took before you saw improvement? Really down these days so any thoughts appreciated.

[momofgirls]

Thanks everyone for your replies. I wanted to go on yesterday and post but had trouble logging into my account.

 

worried dad, what does Dr. K tell you? I am sorry you are still struggling. Maybe just more time or more ivig? How frustrating you must feel. I know because I remember thinking ivig was going to be this instant fix for us and was shocked my daughter wasn't all better the very next morning.

 

melanie, it does sound like your son responded to ivig and maybe he does just need more and with time he will recover. Good luck with this next treatment and keep us posted.

 

EAMom, i hope you are right when you say that maybe the ivig has stirred things up because we are definately seeing more than we have seen in a while! I think dr k has told many that with each ivig there is a "shuffling" of the immune system and it may take 8 to 12 weeks to see a settling.

[faith]

momofgirls,

did you say dr. b. gave you a steroid 4 days ago? was that because the tics were increased and it was to try and get them down? Also, the steroid that you had previous to this, was it before or after the IVIG?

 

What did the doctor say about this? (the increase in tics)

 

I don't really understand the purpose of the steroid thing if it is just temporary. but you are definitely seeing the ocd gone? is that usual for you to see many days with no ocd, or have you had good days before IVIG?

 

hoping things improve in time.

 

Faith

[momofgirls]

Faith,

This is my daughters 3rd time on steroids. The first was back in september when she was first seen by Dr B. He was giving them a try sort of a diagnostic tool. At that same time he started her on antibiotics. Things improved overall back then and she was doing very very well...very few tics and not much OCD either. I was thrilled but decided to go forward with the ivig. Thats when things go

momofgirls,

did you say dr. b. gave you a steroid 4 days ago? was that because the tics were increased and it was to try and get them down? Also, the steroid that you had previous to this, was it before or after the IVIG?

 

What did the doctor say about this? (the increase in tics)

 

I don't really understand the purpose of the steroid thing if it is just temporary. but you are definitely seeing the ocd gone? is that usual for you to see many days with no ocd, or have you had good days before IVIG?

 

hoping things improve in time.

 

Faith

[momofgirls]

oops...sorry faith my message was incomplete before i posted. Anyway after the first ivig i feel like things got real bumpy. I started seeing more tics but the ocd has was not severe. my daughter's main thing was fear around the house. Afraid to go potty alone, afraid to go upstairs alone, also had bad words stuck in her head. When i started seeing more tics i called dr b and he called in the prednisone to provide relief. He said it suppresses the immune system and therefore would have less bad antibodies. She responded very well to that steroid boost and tics became very mild again. She had her second ivig about 2 1/2 weeks ago and again more tics. The OCD/anxiety does seem to be gone. The words in her head have been gone for a couple of months now and she is no longer afraid to go upstairs or potty on her own. She is moving freely through the house...dressing herself upstairs and brushing her teeth on her own. I called Dr B again about the increase in tics and he called in more steroids and said it wouldn't hurt to try them once more to relieve her.

[faith]

So the steroid helped the bumpy time after the first IVIG? why did you go with another IVIG? was it planned that way or the doctor felt another would be beneficial?

 

I don't know anything really about steroids, but is it okay to do 4 in one year? are these 5 day bursts?