POST IVIG - Tics are WORSE

[cfrei]

Hi,

 

My daughter had IVIG in April and thankfully it got rid of all of horrible rage, anger and volatility that had been plaguing her and our family for the past year or so, but in the process it seemed to have made her tics worse than ever. I have been speaking with another mom whose child suffers from tics as well (who also had IVIG around the same time) and she said her daughter is going through the same thing.

 

In addition to the tics being worse than before IVIG started, she has now acquired some OCD like behavior which she never exhibited before. Is there anyone else experiencing anything like this? I have been told by my neurologist to wait, that the tics can be the last to go.....not sure how I feel about that.

 

Thanks,

 

Cindy

[Worried_Dad]

For our son, tics were indeed the most stubborn symptom and the last to go. IVIG didn't make his motor tics significantly worse, but he did develop a brand-new vocal tic after IVIG #1.

 

As a rule, I've heard folks like Dr. K and Dr. L say that PEX seems to be generally more effective at resolving tics, while IVIG is generally more effective at resolving OCD.

 

Hope things improve very soon for you both!

[Fixit]

  On 8/23/2010 at 10:22 PM, Worried Dad said:

For our son, tics were indeed the most stubborn symptom and the last to go. IVIG didn't make his motor tics significantly worse, but he did develop a brand-new vocal tic after IVIG #1.

 

As a rule, I've heard folks like Dr. K and Dr. L say that PEX seems to be generally more effective at resolving tics, while IVIG is generally more effective at resolving OCD.

 

Hope things improve very soon for you both!

 

I have heard the same...

Have you thought about a taper??

 

ps..i am very curious how you progress as ds has tics...

we had one day last week of something being on his desk and getting in a little trouble at school...but its the tics for us!!!

Edited August 23, 2010 by Fixit

[cfrei]

  On 8/23/2010 at 11:34 PM, Fixit said:

  On 8/23/2010 at 10:22 PM, Worried Dad said:

For our son, tics were indeed the most stubborn symptom and the last to go. IVIG didn't make his motor tics significantly worse, but he did develop a brand-new vocal tic after IVIG #1.

 

As a rule, I've heard folks like Dr. K and Dr. L say that PEX seems to be generally more effective at resolving tics, while IVIG is generally more effective at resolving OCD.

 

Hope things improve very soon for you both!

 

I have heard the same...

Have you thought about a taper??

 

ps..i am very curious how you progress as ds has tics...

we had one day last week of something being on his desk and getting in a little trouble at school...but its the tics for us!!!

[cfrei]

Thanks for your reply - I'm curious - what is a taper?

 

We are one week into a Clonodine patch and I have to say it seems to be working so I am feeling very hopeful there. It makes her a bit sleepy but that seems to be helping with her anxiety at night (she is falling asleep faster)

 

How many IVIG's did you end up doing? My daughter also has Lyme so there are complicating factors in our case....ugh!

[Fixit]

  On 8/24/2010 at 12:40 PM, cfrei said:

Thanks for your reply - I'm curious - what is a taper?

 

We are one week into a Clonodine patch and I have to say it seems to be working so I am feeling very hopeful there. It makes her a bit sleepy but that seems to be helping with her anxiety at night (she is falling asleep faster)

 

How many IVIG's did you end up doing? My daughter also has Lyme so there are complicating factors in our case....ugh!

 

If your daughter has lyme..i'm to understand that you should not do a steriod taper..(starts at about 1/2 body weight and tapers down over the course of a month)

with the burst we did see 3 weeks post, about 4 days of super mild/soft, spread out movements..lovely

with the taper..at almost 2 weeks post we had 2 days with nothing SO GREat.... then the second day of school,,.we started to slipped ..most motors are gone...its the vocals that are lingering..the most constant.(for some people it holds)

from doc L...she slightly hinted, that of the tics...vocals may be the hardest to delete...(they may also be the most tramatizing)..(though he would ache and have bruises from some of the motors)( i was aslo afraid of him doing muscle damage or tearing something)

anyone else feel that way???

 

I am afraid of relapse, as we have not gotten to 100% and to me that means the engine hasn't stopped yet...

spring pollens are only 5 months away...and ds has terrible allergies and had full, continuous body movements and vocals last spring(vocals didn't start until spring of this year)

 

WE have not done ivig or pex...i think i should get ds tonsils out first...Went to ent prior to our recent road trip and he said they look ok and doesn't want to do it unless one of the doc suggests it...

Edited August 24, 2010 by Fixit

[nevergiveup]

[Worried Dad,

 

I know ur son is older and had tics, are they resolved now? I am still seeing some tics come and go with my dd, how long after ur three ivigs and augentin XR dose change did it take for tic resolution. I am so glad to here ur son is doing better.

 

 

 

quote name=Worried Dad' date='23 August 2010 - 06:22 PM' timestamp='1282602158' post='80928]

For our son, tics were indeed the most stubborn symptom and the last to go. IVIG didn't make his motor tics significantly worse, but he did develop a brand-new vocal tic after IVIG #1.

 

As a rule, I've heard folks like Dr. K and Dr. L say that PEX seems to be generally more effective at resolving tics, while IVIG is generally more effective at resolving OCD.

 

Hope things improve very soon for you both!

[KeithandElizabeth]

Both of our children have lyme as well and the correct antibiotic lyme treatment seemed to help us more with TICS than the multiple IVIG's did. Are you currently seeing a very good ILADS doctor for the lyme?

 

Elizabeth

[PhillyPA]

This same thing happened to my son after his first ivig in May. Vocal tics got much worse. He has had two more ivig's since May for a total of three. Each time they get less and less. OCD gets less and less. He had his third one last week. We are seeing some amazing things. Just when I thought I was really kidding myself thinking he would get better, he does something remarkable. My son who has been practically mute since he has been five years old (he is now 8). Said to me this morning, "Mommy, I want to eat popcorn." "Clip my toenails", "Show me the weather", "Snuggle with me". All words clear as a bell. They are coming back! Those words are coming back! Dr. Latimer is a saint. She is a SAINT.

[Fixit]

  On 8/24/2010 at 3:28 PM, PhillyPA said:

This same thing happened to my son after his first ivig in May. Vocal tics got much worse. He has had two more ivig's since May for a total of three. Each time they get less and less. OCD gets less and less. He had his third one last week. We are seeing some amazing things. Just when I thought I was really kidding myself thinking he would get better, he does something remarkable. My son who has been practically mute since he has been five years old (he is now 8). Said to me this morning, "Mommy, I want to eat popcorn." "Clip my toenails", "Show me the weather", "Snuggle with me". All words clear as a bell. They are coming back! Those words are coming back! Dr. Latimer is a saint. She is a SAINT.

 

I hear your heart speaking....SOOOO happy for you!!!!!!

[cfrei]

  On 8/24/2010 at 2:46 PM, KeithandElizabeth said:

Both of our children have lyme as well and the correct antibiotic lyme treatment seemed to help us more with TICS than the multiple IVIG's did. Are you currently seeing a very good ILADS doctor for the lyme?

 

Elizabeth

 

yes, she has been treated for the last 6 months, but after waiting 4 months, we are finally seeing Dr. Ann Corson on September 15th. I understand she is supposed to be one of the best for treating pediatric lyme disease.

[nevergiveup]

What dose does he receive and is it monthly ivig???

  On 8/24/2010 at 3:28 PM, PhillyPA said:

This same thing happened to my son after his first ivig in May. Vocal tics got much worse. He has had two more ivig's since May for a total of three. Each time they get less and less. OCD gets less and less. He had his third one last week. We are seeing some amazing things. Just when I thought I was really kidding myself thinking he would get better, he does something remarkable. My son who has been practically mute since he has been five years old (he is now 8). Said to me this morning, "Mommy, I want to eat popcorn." "Clip my toenails", "Show me the weather", "Snuggle with me". All words clear as a bell. They are coming back! Those words are coming back! Dr. Latimer is a saint. She is a SAINT.

[PhillyPA]

He received 2gr / kg. He is only suppose to get three ivig's but we will reevaluate at the end of September.

[nevergiveup]

Thanks for the dosage? How long do u wait between infusions?

  On 8/24/2010 at 5:50 PM, PhillyPA said:

He received 2gr / kg. He is only suppose to get three ivig's but we will reevaluate at the end of September.

[PhillyPA]

Between first and second ivig was 8 weeks. Then, four weeks later we had the third ivig. All at Georgetown.