Sad and need feedback

[melanie]

Hi Guys

 

today hasnt been such a good day ,and yesterday wasnt that great either.Danny is soo ticccie and anxiety is so high.I can just about be near him for a minute.Im not sure if its the minocycline or the IVIG?He had his second dose last friday 2-19 and was on zith for a week .Than she switched him to minocycline I dont remember why Ill call monday.Also he is tired not real tired just tired.Everything you say hes ticing.Says hes hearing us stammer again.

 

The 1st IV he had in the summer was 1.?grams I dont know and I dont speak to that MD anymore.I was much happier after the 1st and 2nd IV.Im also interested in te brand of IVIG.Should I tell the MD I want gamaguard?Does it really matter that much?

 

Melanie

[jewels]

Hi Melanie,

 

I have no idea the effects that IVIG can have, but some other parents have posted up and downs. The only thing I can say is that you both sound like you need lots of HUGS, and support.

 

I hope it improves, but if not I would contact the Dr for more help.

 

Take good care

 

Jules

[thereishope]

I'm so sorry, Melanie. Can you remind us which doctors play a role in your son's med treatment. Was Dr T originally involved in getting the IVIG done via orders or was it just a consult basis with another doctor? Is he still a part of your son's med team? It sounds like it may be time to approach them about increasing the dosage of IVIG.

[nevergiveup]

Melanie ,

Please hang in there. I am thinking of you and danny. My dd didn't do well after ivig the first time her tics went crazy, I hear this a lot on the forum. There is a study out there, I rememember reading in regards to tics and ivig, it was done on late teens and adults. They saw no improvement with tics but at about the six week mark some felt it helped the ocd. I cannot remember the dosage. I will try to find it for you. It was not a PANDAS study rather a tourettes study.

[Suzan]

Nothing helpful for you but wanted to give you some hugs and support. I hope everything improves soon.

 

Susan

[nevergiveup]

Melanie,

 

I was looking for the old article and found another SOOOO much more promising!!! I want to stand up and cheer and take this to our docs! (And vicki lets mail this to Gilbert) I need help getting the full article if anyone on the forum can get it for all of us, it may prove very helpful in assessing dosage levels for the kids whom are getting lower dose ivig.

 

 

 

Title : NeuroImmune Aspects of the Pathogenesis of TS and Experience in the Use of Immunoglobins"

from NeuroScience & Behavior September 2009

 

Summary

 

A total of 60 patients aged 6-16 with tics and tourettes syndrome were studied. Antibodies to caudate nucleus proteins(anti brain antibodies, I beleive they are similiar to cunningham antibodies) were assayed by western blot hybridization. Ten patients with tourettes syndrome were found to have these antibodies. (I am going to paraphrase)

Anyway they infused the kids with ivig a SINGLE time, "which produced regression of vocal and motor tics and improvement in behavior. Remission of more than 6 months.

 

In other words, kids with TS, whom had anti brain antibodies, had ivig infusion and went into remission for 6 months. Of note is that the kids they infused did not respond to the regular tic drugs. (neuroleptic drug resitent tourettes)

 

Vicki,

Shouldn't this be on Diana's website also for the parents?

[peglem]

Melanie,

 

I was looking for the old article and found another SOOOO much more promising!!! I want to stand up and cheer and take this to our docs! (And vicki lets mail this to Gilbert) I need help getting the full article if anyone on the forum can get it for all of us, it may prove very helpful in assessing dosage levels for the kids whom are getting lower dose ivig.

 

 

 

Title : NeuroImmune Aspects of the Pathogenesis of TS and Experience in the Use of Immunoglobins"

from NeuroScience & Behavior September 2009

 

Summary

 

A total of 60 patients aged 6-16 with tics and tourettes syndrome were studied. Antibodies to caudate nucleus proteins(anti brain antibodies, I beleive they are similiar to cunningham antibodies) were assayed by western blot hybridization. Ten patients with tourettes syndrome were found to have these antibodies. (I am going to paraphrase)

Anyway they infused the kids with ivig a SINGLE time, "which produced regression of vocal and motor tics and improvement in behavior. Remission of more than 6 months.

 

In other words, kids with TS, whom had anti brain antibodies, had ivig infusion and went into remission for 6 months. Of note is that the kids they infused did not respond to the regular tic drugs. (neuroleptic drug resitent tourettes)

 

Vicki,

Shouldn't this be on Diana's website also for the parents?

Do you have a link to the article or abstract, or summary? Does it say anything about dosage?

[melanie]

Dannys foot tic is gone !!! But his verbal tic (the one I hate) and the stammering thing he hears isnt.He gets so frusterated today seems like he just cant get it together .Ive been fighting with him which dosent make anything better.

 

Im going to stop the minocycline and see what happens I will call the md on monday

 

I would love a copy of the study too

 

melanie

[nevergiveup]

http://resources.metapress.com/pdf-preview...mp;size=largest

 

try this i think

[momto2pandas]

Just one little comment: I was switched to minocycline some time when I was a young lady (can't remember from what I was switched), and things got very bad. It took a few months to figure out that it wasn't that the mino was failing to work, it was that I was reacting to it (lupus reaction). Later on, I also reacted to doxycycline (given for malaria prophylaxis while traveling.) Now, I can't take any cyclines and doctors won't prescribe them to my kids, either, based on my reactions.

 

Is he having any signs of an allergic reaction? I had a rash that came briefly and then disappeared, as well as mouth sores, and bad joint pain... in addition to the brain stuff.

 

 

Hi Guys

 

today hasnt been such a good day ,and yesterday wasnt that great either.Danny is soo ticccie and anxiety is so high.I can just about be near him for a minute.Im not sure if its the minocycline or the IVIG?He had his second dose last friday 2-19 and was on zith for a week .Than she switched him to minocycline I dont remember why Ill call monday.Also he is tired not real tired just tired.Everything you say hes ticing.Says hes hearing us stammer again.

 

The 1st IV he had in the summer was 1.?grams I dont know and I dont speak to that MD anymore.I was much happier after the 1st and 2nd IV.Im also interested in te brand of IVIG.Should I tell the MD I want gamaguard?Does it really matter that much?

 

Melanie

[faith]

melanie,

what is minocycline? what is that for?

[Fixit]

Just one little comment: I was switched to minocycline some time when I was a young lady (can't remember from what I was switched), and things got very bad. It took a few months to figure out that it wasn't that the mino was failing to work, it was that I was reacting to it (lupus reaction). Later on, I also reacted to doxycycline (given for malaria prophylaxis while traveling.) Now, I can't take any cyclines and doctors won't prescribe them to my kids, either, based on my reactions.

 

Is he having any signs of an allergic reaction? I had a rash that came briefly and then disappeared, as well as mouth sores, and bad joint pain... in addition to the brain stuff.

 

 

Hi Guys

 

today hasnt been such a good day ,and yesterday wasnt that great either.Danny is soo ticccie and anxiety is so high.I can just about be near him for a minute.Im not sure if its the minocycline or the IVIG?He had his second dose last friday 2-19 and was on zith for a week .Than she switched him to minocycline I dont remember why Ill call monday.Also he is tired not real tired just tired.Everything you say hes ticing.Says hes hearing us stammer again.

 

The 1st IV he had in the summer was 1.?grams I dont know and I dont speak to that MD anymore.I was much happier after the 1st and 2nd IV.Im also interested in te brand of IVIG.Should I tell the MD I want gamaguard?Does it really matter that much?

 

Melanie

 

mom2-2, you are such a wealth when it comes to the thyroid thing.....this is good stuff to know!!!! I love you...so it could be a particulare abx

DS started thyroid meds a couple of days ago

Getting husband check and for lupus..his mom has a version of it but it looks my dh has the butterfly

is clarithroymycine ok

is prednisone ok

[coco]

Hi Melanie - sorry you are going thru this now. As I pm-ed you last week, I would watch the minocycline very closely. It has a number of pretty strong side effects, including vertigo. When I was on it for adult acne (yes girls, pre-menopause for me) it cleared up the acne lickity-split in just several days, but made me horribly dizzy, "out of body" type of feeling. After stopping, symptoms disappeared. I'm no expert, but I would switch abx for Danny.

[momto2pandas]

Just one little comment: I was switched to minocycline some time when I was a young lady (can't remember from what I was switched), and things got very bad. It took a few months to figure out that it wasn't that the mino was failing to work, it was that I was reacting to it (lupus reaction). Later on, I also reacted to doxycycline (given for malaria prophylaxis while traveling.) Now, I can't take any cyclines and doctors won't prescribe them to my kids, either, based on my reactions.

 

Is he having any signs of an allergic reaction? I had a rash that came briefly and then disappeared, as well as mouth sores, and bad joint pain... in addition to the brain stuff.

 

 

Hi Guys

 

today hasnt been such a good day ,and yesterday wasnt that great either.Danny is soo ticccie and anxiety is so high.I can just about be near him for a minute.Im not sure if its the minocycline or the IVIG?He had his second dose last friday 2-19 and was on zith for a week .Than she switched him to minocycline I dont remember why Ill call monday.Also he is tired not real tired just tired.Everything you say hes ticing.Says hes hearing us stammer again.

 

The 1st IV he had in the summer was 1.?grams I dont know and I dont speak to that MD anymore.I was much happier after the 1st and 2nd IV.Im also interested in te brand of IVIG.Should I tell the MD I want gamaguard?Does it really matter that much?

 

Melanie

 

mom2-2, you are such a wealth when it comes to the thyroid thing.....this is good stuff to know!!!! I love you...so it could be a particulare abx

DS started thyroid meds a couple of days ago

Getting husband check and for lupus..his mom has a version of it but it looks my dh has the butterfly

is clarithroymycine ok

is prednisone ok

 

 

I can only speak for myself. I can't remember having had clarithromycine, but I have had Medrol packs (steroid) and have had great results from those, though day 2 was always pretty darn moody.

 

I did not mean to suggest that everyone would be allergic to minocycline since I know that allergies can be very individual - but I wanted to raise it since this caught my eye since I also got much worse when switched to minocycline.

[momto2pandas]

Just one little comment: I was switched to minocycline some time when I was a young lady (can't remember from what I was switched), and things got very bad. It took a few months to figure out that it wasn't that the mino was failing to work, it was that I was reacting to it (lupus reaction). Later on, I also reacted to doxycycline (given for malaria prophylaxis while traveling.) Now, I can't take any cyclines and doctors won't prescribe them to my kids, either, based on my reactions.

 

Is he having any signs of an allergic reaction? I had a rash that came briefly and then disappeared, as well as mouth sores, and bad joint pain... in addition to the brain stuff.

 

 

Hi Guys

 

today hasnt been such a good day ,and yesterday wasnt that great either.Danny is soo ticccie and anxiety is so high.I can just about be near him for a minute.Im not sure if its the minocycline or the IVIG?He had his second dose last friday 2-19 and was on zith for a week .Than she switched him to minocycline I dont remember why Ill call monday.Also he is tired not real tired just tired.Everything you say hes ticing.Says hes hearing us stammer again.

 

The 1st IV he had in the summer was 1.?grams I dont know and I dont speak to that MD anymore.I was much happier after the 1st and 2nd IV.Im also interested in te brand of IVIG.Should I tell the MD I want gamaguard?Does it really matter that much?

 

Melanie

 

mom2-2, you are such a wealth when it comes to the thyroid thing.....this is good stuff to know!!!! I love you...so it could be a particulare abx

DS started thyroid meds a couple of days ago

Getting husband check and for lupus..his mom has a version of it but it looks my dh has the butterfly

is clarithroymycine ok

is prednisone ok

 

p.s. Thanks for your kind words!