Guest pandas16 Posted March 8, 2011 Report Posted March 8, 2011 Is there ever a time where it just becomes too late to treat PANDAS? Where you have not managed to see a full recovery? etc. If PANDAS doesn't not cause permanent damage like assumed, technically isn't never too late? Unless it interferes with development? The swelling in the basal ganglia supposedly goes down after treatment and severe PANDAS is not really something that can be missed for years upon years right? Idk. what are your thoughts on this?
PhillyPA Posted March 8, 2011 Report Posted March 8, 2011 (edited) I think it depends on how severe the encephalitis episode is/was and how long before treatment started. I believe that I will know in about a year if it is permanent or not for my DS8 who got sick when he was 5. I believe that if you aggressively treat for about 2 years without full remission you are either dealing with a permanent pandas condition or it wasn't pandas to begin with. And I have nothing to back up my theory. These are just the thoughts going through my head. Edited March 8, 2011 by PhillyPA
SSS Posted March 8, 2011 Report Posted March 8, 2011 Well, as someone who is watching their 5 year old still have rages/tourette episodes/loss of control/attacking/no relief in clothing OCD/ post HD-IVIG, I have to wonder the same thing :-( It is too early for me to tell. I believe our issues started from the first year of life. Just looking for improvement, at this point, relief. And we have other health variables.
Guest pandas16 Posted March 8, 2011 Report Posted March 8, 2011 Well, as someone who is watching their 5 year old still have rages/tourette episodes/loss of control/attacking/no relief in clothing OCD/ post HD-IVIG, I have to wonder the same thing :-( It is too early for me to tell. I believe our issues started from the first year of life. Just looking for improvement, at this point, relief. And we have other health variables. Are you sure that your daughter has PANDAS? Did you do the Cunningham test?
SSS Posted March 8, 2011 Report Posted March 8, 2011 Well, as someone who is watching their 5 year old still have rages/tourette episodes/loss of control/attacking/no relief in clothing OCD/ post HD-IVIG, I have to wonder the same thing :-( It is too early for me to tell. I believe our issues started from the first year of life. Just looking for improvement, at this point, relief. And we have other health variables. Are you sure that your daughter has PANDAS? Did you do the Cunningham test? YES, I am sure she has PANDAS- we did the CamK, 175, and our anti-neuronal 1 was twice the normal mean (all other neuronals in range.) Our DAN!/PANDAS Dr. (we don't have autism) clinically dx'd her with PANDAS before we had our CamK back- we have very early strep time-line. Right now, I am concerned her gut is torn up, and is part of the problem at present.
SSS Posted March 8, 2011 Report Posted March 8, 2011 P.S. I don't mean to sound disrespectful, but I don't think I'd spend $5k on a HD-IVIG, put my kid on antibiotics, ibuprofen, nor would a well respected MD prescribe the IVIG if we weren't as sure we could possibly be that my child has PANDAS. I'm sure you didn't mean the question that way, perhaps I am taking it too personally.
MomWithOCDSon Posted March 8, 2011 Report Posted March 8, 2011 Is there ever a time where it just becomes too late to treat PANDAS? Where you have not managed to see a full recovery? etc. If PANDAS doesn't not cause permanent damage like assumed, technically isn't never too late? Unless it interferes with development? The swelling in the basal ganglia supposedly goes down after treatment and severe PANDAS is not really something that can be missed for years upon years right? Idk. what are your thoughts on this? I sincerely hope not, but I think the jury's out on this.
dcmom Posted March 8, 2011 Report Posted March 8, 2011 PAndas16- I will answer both of your threads here- obviously this is my opinion First, just objectively/ or statistically, not every child on this forum has pandas and pandas only. Just as many/most pandas kids are misdiagnosed- it is probable that some Mather misdiagnosed into pandas. Some kids also, may have more than "just" pandas going on. Look at the huge migration to the Lyme board- what do these kids have? Maybe some are not pandas, but Lyme? I believe in pandas, as defined by Swedo- at least this is what I have seen with my kids. Both were totally "normal", with drastic onset of OCD at time of positive strep culture. Both respond well to pandas treatments. The only treatment that has brought them to 110%, however, was plasmapheresis. ( have not done ivig) I do not believe it is ever too late, however I do believe the longer a child is in an episode, the more work (therapy) may need to be done, once the medical part is fixed.
Guest pandas16 Posted March 8, 2011 Report Posted March 8, 2011 P.S. I don't mean to sound disrespectful, but I don't think I'd spend $5k on a HD-IVIG, put my kid on antibiotics, ibuprofen, nor would a well respected MD prescribe the IVIG if we weren't as sure we could possibly be that my child has PANDAS. I'm sure you didn't mean the question that way, perhaps I am taking it too personally. I only asked because you said that she didn't respond to immuno-suppressive treatment. I apologize.
SSS Posted March 8, 2011 Report Posted March 8, 2011 P.S. I don't mean to sound disrespectful, but I don't think I'd spend $5k on a HD-IVIG, put my kid on antibiotics, ibuprofen, nor would a well respected MD prescribe the IVIG if we weren't as sure we could possibly be that my child has PANDAS. I'm sure you didn't mean the question that way, perhaps I am taking it too personally. I only asked because you said that she didn't respond to immuno-suppressive treatment. I apologize. **Well, we are only 7 days out from the HD-IVIG- that is what I meant by too soon to tell--have had some beautiful windows of interaction, feeling good- but we still have issues- and we also have gut issues right now--- I have been testing, trying to figure out, all kinds of experts, with this child for years. She fits/is the PANDAS profile to a 'T' took a long, long time to get here.*
butterflymom Posted March 8, 2011 Report Posted March 8, 2011 (edited) = Edited February 2, 2016 by tampicc
MichaelTampa Posted March 8, 2011 Report Posted March 8, 2011 I'm going to take the liberty of assuming you're asking, at least party, as you ponder what your future has for you. I would say, generally, if you reach the point of having tried what has been successful for those that have had success, that would likely indicate there is something else going on instead of the PANDAS, or, of course, in addition to the PANDAS. Be aware that a high CamK does not definitively mean PANDAS, it can also be high in cases of conditions such as lyme (as was the case for me, for example).
Guest pandas16 Posted March 8, 2011 Report Posted March 8, 2011 (edited) I'm just curious in the event that I have another serious relapse as an adult because I work in a school. I respond well to immunosuppresive treatment and am doing fine in my life. I have no concerns about my future. If I got this far with PANDAS (graduated with honors) I'm sure as ###### not going to let one relapse stop me not matter what causes it. However, originally IVIG wasn't enough for me. I needed multiple procedures as a child and would probably need them as an adult as well. I wanted to see if people who had repeat strep still managed to get well. Concerning Lyme, I think its possible certainly but, I'm more of a cross reactivity believer. Edited March 9, 2011 by pandas16
emmalily Posted March 8, 2011 Report Posted March 8, 2011 (edited) -- Edited March 8, 2011 by emmalily
Joan Pandas Mom Posted March 9, 2011 Report Posted March 9, 2011 Pandas16 what do you mean you needed multiple procedures as a child? Multiple IVIG's?
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