Tic Attack-Help!

[JGsmom]

Hello All-

 

I am fairly new here, but unfortunately not to PANDAS. My ds, 11.75 yrs,has had PANDAS I believe for three years, finally dx'd by Dr. B in June of this year. DS presented with OCD, takes 20mg Celexa daily and had motor , facial and vocal tics. Those tics went away this year when he started with a sneeze/cough tic that became fairly incessant March of this year. We had our first IVIG in August and had relief of the cough/sneeze tic, but suffered with daily severe migraines. We also saw tics that hadn't been seen for 8 months to a year--is this what is meant by 'turning back the pages' that I see on this forum? Could someone please explain to me what it is and why it happens?

 

Anyway, as the 8 week mark approached, the cough tic reappeared and became almost incessant again. We had our 2nd HD IVIG OCt 18 and 19 and the cough tic is pretty much gone except for a little at bed-time, but ds has some old tics and a new tic I've never seen before: a crossing of the legs and pushing on his thigh. Tonight, I am alarmed because he is having what one can only describe as a tic attack; he is having several body jerking and facial tics all at the same time, unrelenting for 30 mins to an hour. He started crying because he could not stop. He literally was falling over because of the tics.I didn't know what to do so I gave him some Motrin.

 

I held him, which seemed to help calm him. He does take Zithro 500mg/day prophylactically as he caught strep throat 3 weeks post -IVIG after the first IVIG when he returned to school in September.

 

Does anyone have any advice or explanation or encouragement? I appreciate it.

[butterflymom]

=

Edited October 5, 2015 by tampicc

[JGsmom]

Have you tried Augmentin yet? or a steroid burst? Maybe you should call Dr. B and ask to try a steroid and more abx.

I'm sorry he is going through this.

[JGsmom]

Thanks--I don't know how I feel about giving him steroids--he has had only marginal improvement with them. He took Augmentin for so many years for recurrent sinus infections that it's possible he's resistant. I do have Omnicef here and have him one dose with extra S. Boulardii.

 

I am considering LDN after reading some posts here. I take it for Ulcerative Colitis--also thought to be auto-immune.

 

He went to bed, a little better, but still ticcing way more than he 'normally' does.

Appreciate the support.

[PhillyPA]

My son's tics got horrible after his ivig's. He had three of them this summer. They went away. I know the panic you feel. Trust me - they all went away.

[JGsmom]

Thanks, PhillyPA. I certainly hope so. He is slightly better today, but has chorea-like tics with body jerks and facial grimaces that are heartbreaking to see. I'm glad he wasn't in school.

 

This is our 2nd IVIG and the tics have never gone away entirely. The cough/sneeze tic has gone away and we have St. Vitus' Dance in it's stead.

 

Was that your son's first and only IVIG, or did you have more than one?

 

Thanks.

[sf_mom]

JG Mom: We also experience 'flairs of TICS and new TICS appeared'.... we also had 3 hdIVIG. It took about six months for the TICS to fade. Side note: We also unraveled Congenital Lyme for our son after the treatments. ALL TICs and again some I had never seen reappeared when we started treating for LD. For us, it turned out to be herxing response. We have been there and back several times!!! Hang in there.

 

I suspect things will settled down but you do need to give it time.

 

-Wendy

Edited November 7, 2010 by SF Mom

[PhillyPA]

Thanks, PhillyPA. I certainly hope so. He is slightly better today, but has chorea-like tics with body jerks and facial grimaces that are heartbreaking to see. I'm glad he wasn't in school.

 

This is our 2nd IVIG and the tics have never gone away entirely. The cough/sneeze tic has gone away and we have St. Vitus' Dance in it's stead.

 

Was that your son's first and only IVIG, or did you have more than one?

 

Thanks.

 

He had three Ivig's one in May, one in July and one in August. 2g/kg.

[JGsmom]

JG Mom: We also experience 'flairs of TICS and new TICS appeared'.... we also had 3 hdIVIG. It took about six months for the TICS to fade. Side note: We also unraveled Congenital Lyme for our son after the treatments. ALL TICs and again some I had never seen reappeared when we started treating for LD. For us, it turned out to be herxing response. We have been there and back several times!!! Hang in there.

 

I suspect things will settled down but you do need to give it time.

 

-Wendy

[JGsmom]

Hi Wendy--

 

My son also had 2 bands positive for Lyme from IgenX both for IgG and IgM, though he had no 'traditional' symptoms. His co-infections have tested negative from IgeneX. Our PANDAS doc, Dr. B, has discussed that he and Dr. Jones have discussed that one can be exposed to Lyme, but not necessarily 'sick' with Lyme--which he feels is the case for my son. DS has been on 3 months of abx--2.25 months of zith and 3/4 month on Doxycycline ( we stopped to see if it would help w/ migraines). He currently is on zith 500mg/day after contracting strep throat 4 weeks after his first IVIG, which is his first ever documented strep throat. He took 14 days of Omnicef for that.

 

I appreciate hearing others have been through this and it settled down. I am reassuring him and telling him it's OK and to be expected. It just kinda hit me out of the blue, ya know? Thanks for the reassuring words.

[Fixit]

we have not done ivig....

but as a mom of a son with tics...i know how heart wrenching it is, to watch and to see that they have no control over their physical body....

i want to hug you both...

maybe..not that he has don ivig ..he may have more relief with a steroid than in past...i would talk it over with the doctor....you can try ibuprofren every 3 hours for a couple days...

try the epspon salt baths...they didn't do anything for my ds...but i hear alot of good stuff...and we may try in future as things and body changes....(it contains magnesium)..so a good detox, good for the muscles...so might give some relief and just feel good....at least a 20 minute soak

 

going to church in a minute...will pray for your ds and all our pan/pit kids