POST IVIG - Tics are WORSE

[Worried_Dad]

Knock on wood, the tics are completely gone now! Don't remember exactly, but I believe it was about 3-4 months after we started the augmentin XR (6-8 months after IVIG rounds 2 & 3) when we noticed that they were history.

 

Hope you see this for your dd very, very soon!

 

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.

[nevergiveup]

Want so much to see this fade away. How long did ur son have tics. My dd had very small tic from age 9 through 11, then remission, then very aggresive tics from 13 -14. Calming now but still come and go. I need some hope they will go away. WE RECENTLY switched to augmentin, but her tics seem a little more fequent, although she says she feels very good on this medicine. Do you recall if ur sons tics got more frequent before calming on augmentin? Thanks,

Knock on wood, the tics are completely gone now! Don't remember exactly, but I believe it was about 3-4 months after we started the augmentin XR (6-8 months after IVIG rounds 2 & 3) when we noticed that they were history.

 

Hope you see this for your dd very, very soon!

 

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.

[Fixit]

Want so much to see this fade away. How long did ur son have tics. My dd had very small tic from age 9 through 11, then remission, then very aggresive tics from 13 -14. Calming now but still come and go. I need some hope they will go away. WE RECENTLY switched to augmentin, but her tics seem a little more fequent, although she says she feels very good on this medicine. Do you recall if ur sons tics got more frequent before calming on augmentin? Thanks,

Knock on wood, the tics are completely gone now! Don't remember exactly, but I believe it was about 3-4 months after we started the augmentin XR (6-8 months after IVIG rounds 2 & 3) when we noticed that they were history.

 

Hope you see this for your dd very, very soon!

 

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.

 

Nevergu...was your dd diagnosed with pandas at ages9-11 or before new onset at 13, or with new onset...

just that ds always had remission..

this onset was age 9 and he is 10 1/2 now...if i can get this to go away, i don't know how i would handle it coming back...especially after a 2 year remission...

were you on abx prior to this onset???

sorry, did you do ivig or pex...or just abx and steroids...

 

any info may help guide me..

on another note if dd says she feels good maybe its doing something that needed to be addressed and in the long run maybe the final answer...and,,worried dad said it took 3-4 months...so..in some ways that gives me hope that i havent been on abx long enough to get full recovery...

dr L said i may see results from steriod...if i got this right...consult was a little chopped..but...up to a year...maybe it just takes that long for the brain to heal

[Kayanne]

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.

AWESOME!!!!

[Worried_Dad]

I hear you. Tics were among our son's first symptoms at age 10 - started with violent seizure-like episodes of choreiform movements that landed us in the local ER 5 times, gradually evolved into less severe motor and vocal tics. He had these in some form throughout much of the years from 11-13. Don't recall them worsening on the XR, but they definitely spiked after IVIG.

 

 

Want so much to see this fade away. How long did ur son have tics. My dd had very small tic from age 9 through 11, then remission, then very aggresive tics from 13 -14. Calming now but still come and go. I need some hope they will go away. WE RECENTLY switched to augmentin, but her tics seem a little more fequent, although she says she feels very good on this medicine. Do you recall if ur sons tics got more frequent before calming on augmentin? Thanks,

Knock on wood, the tics are completely gone now! Don't remember exactly, but I believe it was about 3-4 months after we started the augmentin XR (6-8 months after IVIG rounds 2 & 3) when we noticed that they were history.

 

Hope you see this for your dd very, very soon!

 

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.

[philamom]

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'm doing a huge happy dance here for you!

[philamom]

Suddenly today my daughter, 4 weeks after her first IVIG has developed a vocal tic. She leaves for college in 3 days. Can this just be a part of saw toothing? I'm terrified now. I wanted IVIG to make her better for college. Can you imagine meeting new kids while blurting out things????? God I hope this doesn't last.

 

Nancy

Can you try Advil to see if it helps? I'm sorry this is happening right before college...she has enough to be anxious about. Hopefully, it's just a day or two of "turning back the pages".

[KeithandElizabeth]

Nancy:

 

We definitely saw things post IVIG that we had not seen before and this can be part of the "sawtooth" healing. Have you already ruled out mycoplasma (even if the IGM is negative, I would check to make sure the IGG is also negative) and lyme and the coinfections?

 

If this is a herxing symptom, I would also consider bentonite clay or charcoal pills to help with the detox.

 

I can understand how stressed you must feel and hopefully this will be a short term situation. Please keep us posted.

 

Elizabeth

[EAMom]

Hi Cindy,

 

I see you are in MD. Did you see Dr. Latimer? What dose of IVIG did you get?

[nevergiveup]

Nancy, Is this her first time ever having a vocal tic. I am so sorry. She may need more than one ivig. Did she see symptom remission for a couple of weeks? Did she always have tics before ivig. Has she felt the ivig halped with ocd or other symptems. My dd gets ivig every 21 days. Not a complete cure, but my dd swears she feels better on it. Usually cannot wait for next dose. Some say the older kids need more than one ivig. How long has ur dd had pandas?

Suddenly today my daughter, 4 weeks after her first IVIG has developed a vocal tic. She leaves for college in 3 days. Can this just be a part of saw toothing? I'm terrified now. I wanted IVIG to make her better for college. Can you imagine meeting new kids while blurting out things????? God I hope this doesn't last.

 

Nancy

[Worried_Dad]

Wow - our son had the same thing happen. Four - 5 weeks after IVIG #1, he developed his 1st ever vocal tic. Hope this is brief and mild for your ds!

 

 

Suddenly today my daughter, 4 weeks after her first IVIG has developed a vocal tic. She leaves for college in 3 days. Can this just be a part of saw toothing? I'm terrified now. I wanted IVIG to make her better for college. Can you imagine meeting new kids while blurting out things????? God I hope this doesn't last.

 

Nancy

[texasmom]

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

[texasmom]

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

 

Hi,

I am new to the forum.

My 9 YO daughter had IVIG January 10th and 11th, 2011. Her tics have suddenly increased. She even had the hiccups for a full day. She is miserable. I have read and heard that IVIG can make things worse before they get better. I have also read where IVIG can take a very long time to act on the immune system. Does anyone have any words of wisdom on this?

 

Thanks

[kimballot]

Hi,

I am new to the forum.

My 9 YO daughter had IVIG January 10th and 11th, 2011. Her tics have suddenly increased. She even had the hiccups for a full day. She is miserable. I have read and heard that IVIG can make things worse before they get better. I have also read where IVIG can take a very long time to act on the immune system. Does anyone have any words of wisdom on this?

 

Thanks

 

Hi Texas mom - Welcome to the forum. I think you post may have gotten lost as it looked like a comment to an old thread and folks may not have read it. You may want to put this in as a "new thread", and I am sure people will have words of wisdom for you.

 

We just did our second IVIG. My son had an increase (return) of psychiatric symptoms including depression and rages about 3 weeks after the first IVIG, though tics and regular OCD had decreased. We are just 2 days post IVIG #2 and so far he has been relatively calm and cooperative.

 

I look forward to reading more of your posts. It looks like you have been battling PANDAS a while!

[SSS]

Is it possible she has been around strep?

4 weeks post our 1st IVIG, my dd6 was doing great, she was back in school, on daily antibx., during the week, 4-7 kids dropped out from strep in her class. I kept her going, she seemed fine. Friday she came home, complete ramp up in all things pandas. She never caught the actual infection, I believe it ramped up her autoimmune deal.

I scheduled a 2nd IVIG for week 6-7 post the 1st IVIG because of this, and then she had started to pull out a bit, but our baseline was not great, let's say.

Did the 2nd IVIG 10 days ago and pulled her out of school for the remaining 5 weeks left.

Things are trending UP for us. It's wonderful to see, still saw tooth however, but better.

Just thought I'd mention possible strep exposure, it is 'strep season.'

Edited April 21, 2011 by S & S