advice about steroid

[thereishope]

You also have to be careful w/ SSRI's and PANDAS. Some PANDAS kids have neg side effects with that too. But I do not remember reading anyone have long term negative side effects from the SSRI's long term, just while on them. Maybe start a thread about which SSRI's are best before starting anything.

 

This PANDAS puzzle never get easier, does it?

 

I suggest trying 12 weeks on an SSRI before trying prednisone.

[faith]

I guess I'm just seeing a waning of his tics since I made the appt. with Dr. L. and that is making me feel like I shouldn't rock the boat. I'm kind of new to looking at PANDAS as a diagnosis, and I guess this is all happening kind of fast. I know many of you are searching for someone to help for so long, and even tho I have been dealing with my son and tourettes with comorbid issues for 7 years now, I have been able to move quickly by having access to one of main doctors because of living on the east coast. I almost wish he was still in a big waxing state (which I go thru a couple times a year), so then at least it would give me more of a push to do something. why I feel like sitting on this for a bit, I just don't know. I'm scared of making things worse, I don't want ot deal with the side effects if they are going to be a problem for him, and what if it doesn't help at all, and what if it helps initially and then it wears off? all these things. did all of you just go ahead with none of these thoughts? I feel like what good is it if it is not a permanent solution? I know many of you are dealing with way more problems than my son has, at least in the severity of it, so I do understand that the choice is a no brainer for many of you.

 

My husband is not giving me the support I need, he is going along with all this and doesn't know enough to make any decisions. he is asking me why then did we drive all the way to Maryland if I was not going to do what the doctor recommended? I'm trying to talk to him and tell him how I feel, that we had to see a doctor who knows about this stuff and at least establish a relationship so that my son is a patient and we can go from here. we're just snapping at each other and I'm sick of dealing with this all on my own, I'm really disappointed he is just going thru the motions, but not really sitting down and heart to heart talking about what we should do for our son. he wants me to make the decisions,...yea, so I could be blamed if anything goes wrong? how did we get here?......

 

I do want ot continue the abx and will do that, I don't know if I could snag them anywhere else. since he's not off the wall ticcing like he was a couple months ago, how will I gauge how much it is helping? if he was bad now, like he was then, then at least I could see the difference and know it was the right thing to do. I can't help but err on the side of caution, I always do. I'm thinking I could do the abx for a few weeks and then let her know when I want to start the steroid and take it from there.

 

Faith

[lismom]

I guess I'm just seeing a waning of his tics since I made the appt. with Dr. L. and that is making me feel like I shouldn't rock the boat. I'm kind of new to looking at PANDAS as a diagnosis, and I guess this is all happening kind of fast. I know many of you are searching for someone to help for so long, and even tho I have been dealing with my son and tourettes with comorbid issues for 7 years now, I have been able to move quickly by having access to one of main doctors because of living on the east coast. I almost wish he was still in a big waxing state (which I go thru a couple times a year), so then at least it would give me more of a push to do something. why I feel like sitting on this for a bit, I just don't know. I'm scared of making things worse, I don't want ot deal with the side effects if they are going to be a problem for him, and what if it doesn't help at all, and what if it helps initially and then it wears off? all these things. did all of you just go ahead with none of these thoughts? I feel like what good is it if it is not a permanent solution? I know many of you are dealing with way more problems than my son has, at least in the severity of it, so I do understand that the choice is a no brainer for many of you.

 

My husband is not giving me the support I need, he is going along with all this and doesn't know enough to make any decisions. he is asking me why then did we drive all the way to Maryland if I was not going to do what the doctor recommended? I'm trying to talk to him and tell him how I feel, that we had to see a doctor who knows about this stuff and at least establish a relationship so that my son is a patient and we can go from here. we're just snapping at each other and I'm sick of dealing with this all on my own, I'm really disappointed he is just going thru the motions, but not really sitting down and heart to heart talking about what we should do for our son. he wants me to make the decisions,...yea, so I could be blamed if anything goes wrong? how did we get here?......

 

I do want ot continue the abx and will do that, I don't know if I could snag them anywhere else. since he's not off the wall ticcing like he was a couple months ago, how will I gauge how much it is helping? if he was bad now, like he was then, then at least I could see the difference and know it was the right thing to do. I can't help but err on the side of caution, I always do. I'm thinking I could do the abx for a few weeks and then let her know when I want to start the steroid and take it from there.

 

Faith

 

/Faith, I am no expert on this and we are on our second round of zith at high dose, but I can't help but think that for most of us and especially those whose children have been going through this for years that a few weeks is not enough time to tell if abx will work. This is a long term battle and I keep on reminding myself of this. Small improvements over an amount of time is a victory for us. We have and still are in a sawtooth recovery. My son was extremely sick last spring. Ticcing has been our major symptom, he is believed to have had rheumatic fever. I like you have not been brave enough to do steroids. I have seen my son over a period of time go to 90% improved. Unfortunately he has the flu so there have been some mild ticcing return. I feel like its going to take more time than I first expected. Kathy

[dee45]

Hi Faith,

Anthony sounds so similar to your son his tics are mostly head and neck tics some eye rolling minor OCD tyoe things His cam-kinase was 145 and we did try the steroids for one day but with bad results. Dr. L swithced us from pen-v-k to Augmentin what antibiotic did she prescribe for you??

 

Deanna

[faith]

Dee,

she gave augmentin chewables, which are 400 mgs. each pill, so 2x day will be 800 mg. (we had started a course of augmentin 1000 mgs. day from our ped. only because it took him in for strep test and was able to secure abx before the result came back negative. our ped doesn't believe in longterm abx but was willing to give it a try to see if the tics went down. they didn't all the way, but I'm going to keep trying).

 

what happened with the steroid? Dr. L. said to stop it? and then what will you do next, just stay on abx?

Did you feel she was confident your son was PANDAS? or did you feel she was just following a protocol for those with cam kinase in the range?

 

lismom, may I ask why you don't feel brave enough to do steroid? at least I know I'm not in the total minority here, I guess some are scaredy cats like me.

 

thanks

Faith

[thereishope]

This is just my opinion. If your instinct is telling you to hold off on the steroid for now, hold off. Continue to give the antibiotics. That's very important. Even to just help ward off additional strep infections. You should discuss your concerns with the prednisone with Dr L and see what she has to say. Was the steroid suppose to be a stepping stone to IVIG for you?

 

 

I do want ot continue the abx and will do that, I don't know if I could snag them anywhere else. since he's not off the wall ticcing like he was a couple months ago, how will I gauge how much it is helping? if he was bad now, like he was then, then at least I could see the difference and know it was the right thing to do. I can't help but err on the side of caution, I always do. I'm thinking I could do the abx for a few weeks and then let her know when I want to start the steroid and take it from there.

 

Faith

[faith]

thanks vickie,

I don't think so about the IVIG, I really got the impression she did not think my son was bad off with his symptoms, she could see he ticced, but said he presented like tourettes, and at first I thought she was going to say it was just tourettes. I got the feeling that IVIG would be reserved for more severe cases. I hope she didn't give me this just to "see" what happens. we do have a high cam k and early onset of tics, but I don't know, I don't like to say this, but I didn't feel like she was "telling me", I kind of felt I had to ask if he fit into PANDAS. she didn't say "definitely", she said "its probably". so we're supposed to do the pred and stay on abx and then go back for follow up visit in mid December which will be about when its over, and then see where things stand. I don't know what I'm supposed to know by then, I would think I should go back a few weeks after that to at least have some feedback on he he is doing. I guess I've been doing tourettes for so long that this angle still seems a little gray to me.

 

Faith

[thereishope]

Even if it's the word "probably" PANDAS, stay on the long term antibiotics. Almost rather have that small question mark in the back of your head wondering than take him off the abs, have him get sick, and be real bad off. You don't want another exacerbation to make it a "definitely".

 

 

 

thanks vickie,

I don't think so about the IVIG, I really got the impression she did not think my son was bad off with his symptoms, she could see he ticced, but said he presented like tourettes, and at first I thought she was going to say it was just tourettes. I got the feeling that IVIG would be reserved for more severe cases. I hope she didn't give me this just to "see" what happens. we do have a high cam k and early onset of tics, but I don't know, I don't like to say this, but I didn't feel like she was "telling me", I kind of felt I had to ask if he fit into PANDAS. she didn't say "definitely", she said "its probably". so we're supposed to do the pred and stay on abx and then go back for follow up visit in mid December which will be about when its over, and then see where things stand. I don't know what I'm supposed to know by then, I would think I should go back a few weeks after that to at least have some feedback on he he is doing. I guess I've been doing tourettes for so long that this angle still seems a little gray to me.

 

Faith

[Chemar]

Chemar - do you know why people with TS have this negative response to steroids?

 

Thanks....

 

I think it may be related to the dopaminergic response to steroids

 

people with TS have a hyper-reaction to dopamine, resulting in tics.

 

there was once an excellent article on the chemistry of TS that explained it, but I see it is no longer there as Geocities has been taken down

 

here is the archived link of the discussion we had on the TS forum about it

http://www.latitudes.org/forums/lofiversio....php?t1673.html

[Betty04]

Faith-

 

I feel like I am at a similar place to you. My son's CaM Kinase is 142. He is almost 5 years old and his tics started as young as 20 months. So not the typical age of onset for Tourettes. I am consulting with my DAN doctor next week, have to resch a phone consult with Dr K and have a phone consult set up with Dr Latimer next week. My son has responded positively to Augmentin and after 6 weeks is better but not back to his baseline. So we are wondering, should we add steroids? We also may consider IVIG. But most conservatively I was wondering should we just increase the Augmentin to a higher dose and see if that helps? It seems some on this board have tried IVIG and steroids and it is the high dose of Augmentin that is helping? But of course every child is different. So my point is maybe you can get Dr Latimer to increase his Augmentin first as I think it is reasonable to be concerned about the negative effects of steroids. I always have this nagging thought that maybe its not PANDAS and its Tourettes... but he does respond well to anitbiotics and it seems your son may be too. He just may need more time and a higher dose as I think you said he has had tics for the past 7 years.

 

Just some of my rambling thoughts I wanted to share... whatever thats worth

[sf_mom]

Double post, sorry..

[sf_mom]

Chemar: Madeleine Cunningham is finding the use of steroids suppressed dopamine levels to normal ranges... preliminary findings based on CaM Kinase testing results.

 

Didn't have time to read the link but will in the morning.

 

 

 

Chemar - do you know why people with TS have this negative response to steroids?

 

Thanks....

 

I think it may be related to the dopaminergic response to steroids

 

people with TS have a hyper-reaction to dopamine, resulting in tics.

 

there was once an excellent article on the chemistry of TS that explained it, but I see it is no longer there as Geocities has been taken down

 

here is the archived link of the discussion we had on the TS forum about it

http://www.latitudes.org/forums/lofiversio....php?t1673.html

[Chemar]

Chemar: Madeleine Cunningham is finding the use of steroids suppressed dopamine levels to normal ranges... preliminary findings based on CaM Kinase testing results.

 

do you have a link to support that information?

 

if so it would be contrary to all other info I have found suggesting steroids are dopaminergic (certainly the anabolic steroids are documented as such)

and would also not explain why tics appear to be spiking in some with TS when given steroids

 

you may find reading that discussion I linked interesting

 

I do not even vaguely claim to understand the biochemistry involved...and am only speaking from the experience we had with my husband, as well as the info I have been hearing from some parents whose kids show increased tics after steroid burst

 

anyway

I am not here to enter a debate about it...I just felt it important to post our personal experience and everyone can decide for themselves what they wish to do based on the information they have available.

[dee45]

Hi Faith,

Dr. Latimer actually said Anthony fit the PANDAS criteria. One dose of the steroid he was very agitated the best way for me to describe it is that he looked like he was coming out of his skin. He stated by that evening "I feel like I'm in a box" so I called her and she said to stop. Maybe if he wasn't starting school in 2 days I would have given it a little more time. I brought this up when we saw her on last week and she said some kids/people just can't take steroids. I asked her as well because we can't take them if things would get worse and she said no. She switched or antibotic and he is on Topamax which she says helps the tics. She does not beleive at this point he is a candidate, he has tics but they wax and wane. We are swithing to Augmentin this weekend 500mg twice a day. Hope you have a good weekend.

 

Deanna

[faith]

deanna,

thanks for that info. just to clarify, she said he is not a candidate for what? and she is putting him on the augmentin and keeping him on topomax? did she prescribe the topomax, or you were already doing that? how much does your son weigh? also, how much topomax is on? do you feel it helps? I wonder if it was the interaction of the topo and the steroid that made him feel that way? just an idea.

 

 

thanks

faith