Basil ganglia?

[melanie]

Ok so I get that tourettes is a basil ganglia (BG)issue ..and PANDAS is I guess swelling of the BG? So what medications help the BG ?Just antipsys? I cant help but read .I know the iVIG is soposed to help heal the BG but Im not sure In our case it will so Im looking ahead,Danny is on risperdal and the 1st 2 weeks were amazing but not really working well anymore .

 

Melanie

[dee45]

Hi Melanie,

can't answer your question, sorry I am confused as well. How is Danny doing?

 

Deanna

[melanie]

Hi Melanie,

can't answer your question, sorry I am confused as well. How is Danny doing?

 

Deanna

 

Hi nothing at all yet I know it takes time but thanks

[thereishope]

I'm assuming the IVIG takes the inflamation down. Am I correct on that? I believe there is still some damage done to the basal ganglia as a result of that inflamation. The question becomes how long does it take the brain to heal itself. That would also explain why not all symptoms go away immediately.

 

I would think you want to make sure he's on as many supplements that help with brain function. Sleep is extremely important too.

 

What are his remaining symptoms?

[melanie]

I'm assuming the IVIG takes the inflamation down. Am I correct on that? I believe there is still some damage done to the basal ganglia as a result of that inflamation. The question becomes how long does it take the brain to heal itself. That would also explain why not all symptoms go away immediately.

 

I would think you want to make sure he's on as many supplements that help with brain function. Sleep is extremely important too.

 

What are his remaining symptoms?

 

 

I havent seen anything good or bad as of yet its 1 week tomorrow snce we completed the IVIG treatment so I know it takes more time I just want tosee something GOOD!!!

[Iowamom]

Ok so I get that tourettes is a basil ganglia (BG)issue ..and PANDAS is I guess swelling of the BG? So what medications help the BG ?Just antipsys? I cant help but read .I know the iVIG is soposed to help heal the BG but Im not sure In our case it will so Im looking ahead,Danny is on risperdal and the 1st 2 weeks were amazing but not really working well anymore .

 

Melanie

 

Melanie-

I'll reply to the what medicines work question. Our experience and the experience of many others is that it is difficult to find a drug that helps our PANDAS kids. We have had our son on Abilify--quit working. Bombed. SeroquelXR--bombed. Namenda --saw some positive things with attention/eye contact, which weren't big issues in the scope of things. Dr. K has told us that anti-psychs don't generally work. We are currently on Risperdal (1mg 2x/day). We asked about Risperdal and if it tended to backfire in PANDAS kids. His answer was: "I haven't seen it backfire, and I've yet to see it work." Our experience in the 2 months our son has been on it has been similar to yours. SSRI's backfired on us as well. This is pretty common, too. Too much dopamine and too little seratonin, that gets depleted even more with the drugs, is how I've understood it. An antibody of some sort may be signaling the neuronal cells, activating CaM Kinase II within the cell, signaling it to release Dopamine, thereby producing PANDAS symptoms, per Dr. C. Our son has a difficult case of PANDAS due to the number of years he went undiagnosed. We are going to give IVIG a shot. It is being used in soooo many different conditions (off label) with good results. We know we have no guarantees, but we are going to try. Maybe I didn't help, but I thought I'd put in my two cents. I've read the forum for a while and am new to posting.

 

Dawn

[melanie]

Ok so I get that tourettes is a basil ganglia (BG)issue ..and PANDAS is I guess swelling of the BG? So what medications help the BG ?Just antipsys? I cant help but read .I know the iVIG is soposed to help heal the BG but Im not sure In our case it will so Im looking ahead,Danny is on risperdal and the 1st 2 weeks were amazing but not really working well anymore .

 

Melanie

 

Melanie-

I'll reply to the what medicines work question. Our experience and the experience of many others is that it is difficult to find a drug that helps our PANDAS kids. We have had our son on Abilify--quit working. Bombed. SeroquelXR--bombed. Namenda --saw some positive things with attention/eye contact, which weren't big issues in the scope of things. Dr. K has told us that anti-psychs don't generally work. We are currently on Risperdal (1mg 2x/day). We asked about Risperdal and if it tended to backfire in PANDAS kids. His answer was: "I haven't seen it backfire, and I've yet to see it work." Our experience in the 2 months our son has been on it has been similar to yours. SSRI's backfired on us as well. This is pretty common, too. Too much dopamine and too little seratonin, that gets depleted even more with the drugs, is how I've understood it. An antibody of some sort may be signaling the neuronal cells, activating CaM Kinase II within the cell, signaling it to release Dopamine, thereby producing PANDAS symptoms, per Dr. C. Our son has a difficult case of PANDAS due to the number of years he went undiagnosed. We are going to give IVIG a shot. It is being used in soooo many different conditions (off label) with good results. We know we have no guarantees, but we are going to try. Maybe I didn't help, but I thought I'd put in my two cents. I've read the forum for a while and am new to posting.

 

Dawn

 

 

Thanks dawn How old is your chilld ? Sounds like my story

[thereishope]

Well, I guess you can say the good part is you're not seeing more bad surfacing, right? When my son had his steroid burst, I noted in my journal that I didn't necesarily see improvement at first, but instead, he plateaued. He stopped getting worse. That was a positive since he was spiralling downward prior to it. After hitting that plateau, he then began to improve.

 

Always look for the good. No matter how small it may be.Keep us posted.

[Iowamom]

Ok so I get that tourettes is a basil ganglia (BG)issue ..and PANDAS is I guess swelling of the BG? So what medications help the BG ?Just antipsys? I cant help but read .I know the iVIG is soposed to help heal the BG but Im not sure In our case it will so Im looking ahead,Danny is on risperdal and the 1st 2 weeks were amazing but not really working well anymore .

 

Melanie

 

Melanie-

I'll reply to the what medicines work question. Our experience and the experience of many others is that it is difficult to find a drug that helps our PANDAS kids. We have had our son on Abilify--quit working. Bombed. SeroquelXR--bombed. Namenda --saw some positive things with attention/eye contact, which weren't big issues in the scope of things. Dr. K has told us that anti-psychs don't generally work. We are currently on Risperdal (1mg 2x/day). We asked about Risperdal and if it tended to backfire in PANDAS kids. His answer was: "I haven't seen it backfire, and I've yet to see it work." Our experience in the 2 months our son has been on it has been similar to yours. SSRI's backfired on us as well. This is pretty common, too. Too much dopamine and too little seratonin, that gets depleted even more with the drugs, is how I've understood it. An antibody of some sort may be signaling the neuronal cells, activating CaM Kinase II within the cell, signaling it to release Dopamine, thereby producing PANDAS symptoms, per Dr. C. Our son has a difficult case of PANDAS due to the number of years he went undiagnosed. We are going to give IVIG a shot. It is being used in soooo many different conditions (off label) with good results. We know we have no guarantees, but we are going to try. Maybe I didn't help, but I thought I'd put in my two cents. I've read the forum for a while and am new to posting.

 

 

Dawn

 

 

Thanks dawn How old is your chilld ? Sounds like my story

 

Melanie-

 

I'm new to this posting stuff--not sure if I am getting this typed in the correct location!

 

I missed that your boy had just had IVIG. My response was as if you hadn't. Sorry. Hang onto hope. I've read so many cases that take a while to turn around, but then do. Hey, I'd be thinking the same thing, and probably will when we get it done soon. We were to get a date, but Dr. K's office didn't call with one by day's end. rats!

 

Our boy, Evan, is 10 1/2. He has been what you would call, an "alphabet kid", like so many PANDAS kids. Let's see. DD, ODD,PDD-NOS, Mood disorder, anxiety, on the very high end of the autism spectrum, not on the spectrum!... A PANDAS dx was suspected in the fall of 08 after a stay in the behavioral/psych unit. We had had significant counseling prior. All along his way, his problems had been pretty much boiled down to parenting. After the dx, we had a winter/spring from ##^+% trying to get rid of the strep. The doc was insistent that Pen. would work. Even switching to Bicillin injections. After his strep titers continued to soar and his behavior was terribly dangerous & destructive I begged azith from our GP. I got it and it helped for a while and then peaked and, well we are planning on IVIG. We are convinced that he has had this from before he was 2. His baby records are replete with infections that present as strep. Never a strep test. Sometimes amox., most of which he blew across the room. He had migraines as a little guy. I really wonder if these weren't really strep. His IgG for mycoplasma pneumoniae was very elevated in July. Dr. K says he sees alot of PANDAS kids with rage/aggression have this elevated. I can't remember the last time he had an URI that could have been caused by the m. pneumoniae bacteria. His CaM was 184%. in August. His other autoantibodies were OK (anti tubulin just on the line). THe blood was drawn after he had been on azith for about 2 months after most of the tics/choreiform mvt in his fingers had subsided. The thing that would cause a 3 year-old to stab a knife into the screen door out of frustration, has to be the same thing that would drive a 10 year-old to take a butter knife to the top of my glasstop stove (it lost!) Just a sample. Oh, this probably sounds so disjointed. My apologies. I have seen our boy when he is a different kid. Evan is really very tenderhearted, funny, and incredibly imaginative & creative. Like everyone else, we want our true child.

 

Hang in there & prayers from the Heartland!

Dawn

[Buster]

Hi Melanie,

 

They don't really know why IVIG works. There was a study by Swedo that IVIG on non-PANDAS OCD didn't really have an effect. Similar studies on Tourettes Syndrome didn't seem to have benefit (although the data seems mixed). One thought is that IVIG has a byproduct of being a really strong anti-inflammatory -- so it might just close the blood-brain-barrier. It's also possible it drops inflammatory cytokines by doing a bit of a reset on the immune system -- the bottom line is no one really knows.

 

Regards,

 

Buster

 

Ok so I get that tourettes is a basil ganglia (BG)issue ..and PANDAS is I guess swelling of the BG? So what medications help the BG ?Just antipsys? I cant help but read .I know the iVIG is soposed to help heal the BG but Im not sure In our case it will so Im looking ahead,Danny is on risperdal and the 1st 2 weeks were amazing but not really working well anymore .

 

Melanie

[EAMom]

I should add that the study on Tourettes syndrome were non-pandas tourettes (those that didn't react to strep). Also, the tourettes study was not of children, it was adolescents and adults (average age 28, range 14-53 years).

[melanie]

So does that study mean that the tourettes 14-? worked or it didnt help at all .Dannys 15 so Im interested.If you can link that study i would be greatful

 

Melanie