Indigo Posted December 26, 2008 Report Share Posted December 26, 2008 Hello, I have a few questions and would love if anyone has thoughts to share! My dd has been on Azith, clarith, and Amoxicillin...amoxicillin made her unbearable, azith made her rage, and clarith doesn't seem to work! I have her back on clarith just to get her off of the awful amoxicillin! Her throat tic has been really bad lately and she says her throat hurts. Especially after a stressful situation, such as Christmas, she actually appears sick and her throat bothers her! Her strep titers have been 480 and didn't move with antibiotic treatment. Is it normal for PANDAS kids to feel like they have strep when their symptoms are presenting? Her behavior has just been awful...from hyperactivity to being so edgy and angry and there is just no self-control at all. It's so sad to see her like this! The anxiety is bad. She is also on prednisone just to help her get through the holidays but it hasn't worked much this time like it did during the summer-part of that is because I took her off of the zoloft when she started the prednisone because I was afraid that was causing some of her raging. I am thinking of giving her a garlic supplement but the one that we have tastes strong of garlic and she won't take it. My doctor also recommended Thymus to help the immune system while she is on the prednisone. I'm exhausted and just looking for help! Link to comment Share on other sites More sharing options...
Diana Posted December 27, 2008 Report Share Posted December 27, 2008 Hello, I have a few questions and would love if anyone has thoughts to share! My dd has been on Azith, clarith, and Amoxicillin...amoxicillin made her unbearable, azith made her rage, and clarith doesn't seem to work! I have her back on clarith just to get her off of the awful amoxicillin! Her throat tic has been really bad lately and she says her throat hurts. Especially after a stressful situation, such as Christmas, she actually appears sick and her throat bothers her! Her strep titers have been 480 and didn't move with antibiotic treatment. Is it normal for PANDAS kids to feel like they have strep when their symptoms are presenting? Her behavior has just been awful...from hyperactivity to being so edgy and angry and there is just no self-control at all. It's so sad to see her like this! The anxiety is bad. She is also on prednisone just to help her get through the holidays but it hasn't worked much this time like it did during the summer-part of that is because I took her off of the zoloft when she started the prednisone because I was afraid that was causing some of her raging. I am thinking of giving her a garlic supplement but the one that we have tastes strong of garlic and she won't take it. My doctor also recommended Thymus to help the immune system while she is on the prednisone. I'm exhausted and just looking for help! Link to comment Share on other sites More sharing options...
Diana Posted December 27, 2008 Report Share Posted December 27, 2008 Dear Indigo, The antibiotics don't work I have found personally with my son - past a certain point. I don't know the background of how long your dd has had PANDAS but the body will sometimes build up resistance after a certain amount of months or years on abx. I live in Menlo Park, CA where there is a lot of PANDAS. Stanford U. in our town is slowly trying to understand why. Anyways, there is one boy here who for the past 9 years (from age 6 to now 15) has lived with PANDAS - using antibiotics whenever he has an exacerbation. It is just bad sometimes. And good other times. His mother, my neighbor, said it takes about 5 to 6 weeks for his episodes to pass. PREDNISONE: One case on East Coast - child had PANDAS for a couple of years - YALE did the predisonse but it took a few weeks for the brain inflammation to go down and the symptoms finally subsided dramatically. Having said THAT - her son's symptoms, OCD, hyperactivity, aggression - were not as acute as my son's were at certain points. So, PANDAS for some is more severe than for others. Indigo - I have been meaning to contact you. I am working with YALE to try to get a grip on this. We have about 20+ families reporting their stories to Yale. They are also in close contact with Dr. Kovacevic. ALSO, have you ever done an MRI or PET scan? Sometimes they are inconclusive but sometimes not. If you have not done one - it may be time. I can help you get connected with some resources that will help you in these or other efforts. PLEASE EMAIL to MY HOME EMAIL. I don't log onto ACN often: pohlmandiana@yahoo.com Link to comment Share on other sites More sharing options...
Diana Posted December 27, 2008 Report Share Posted December 27, 2008 Important Hopeful note: The boy I mentioned above now at age 14/15 yrs - very little PANDAS symptoms. Actually, mother thinks it is gone. With girls I have heard several times - at time of menses - the symptoms stop. Link to comment Share on other sites More sharing options...
ajcire Posted December 29, 2008 Report Share Posted December 29, 2008 So they simply outgrow it eventually? Important Hopeful note: The boy I mentioned above now at age 14/15 yrs - very little PANDAS symptoms. Actually, mother thinks it is gone. With girls I have heard several times - at time of menses - the symptoms stop. Link to comment Share on other sites More sharing options...
Indigo Posted December 30, 2008 Author Report Share Posted December 30, 2008 Thanks, Diana...I finally put her back on the Azith and she is not nearly as irritable. Very hyper, but we handle that with guanfacine. I would rather have hyper than nasty constantly! My doctor has been in email contact with Dr. K...his feeling is that IVIG is the next step but it's one that my dd is not able to take. She is deathly afraid of any sort of doctor, needle, or medical procedure. When she cut her hand and needed stitches, it was either putting her under in the OR so they could stitch them or (our choice) my PANDAS doctor gave me the butterfly bandages to take home along with skin glue so I could do it at home with her. There is no way on earth that we can get her to do IVIG and our insurance won't cover it in the hospital...our doctor and hospital insurance is all different. Link to comment Share on other sites More sharing options...
Indigo Posted December 30, 2008 Author Report Share Posted December 30, 2008 Oh, and we once tried to get a CTscan but it was a disaster...she had been given clonidine which made her a writing, hysterical mess so we didn't get any scans done. Link to comment Share on other sites More sharing options...
EAMom Posted January 2, 2009 Report Share Posted January 2, 2009 Erica/Indigo, as to children outgrowing PANDAS... I think this is somewhat variable. According (this is second hand from Q/A session at DAN! conf.) to Sue Swedo as to how the original PANDAS patients are doing. 1) 1st group (no treatment) still have ongoing problems 2) later groups (treatment...which I assume to mean IVIG and/or prophylactic abs) doing very well So, my impression (from reading stuff from Dr. K, Swedo) is if these kids are not treated (or perhaps only treated symptomatically with psych. drugs) they are likely to have tics/chronic problems/OCD/anxiety as adolescents/adults. There was an adult who had pandas who posted here once who didn't mention remission with menses but did say things got better with pregnancy...so how PANDAS girls do may be variable but certainly hormones do seem to affect things. One explanation behind the "outgrowing" PANDAS is that older children (15 +) are less susceptible to strep. I agree with Diana that antibiotics are always 100% effective. My impression is that they are more effective in acute, early diagnosed cases. Inidigo...do you have any info. on why/how Azith. causes beh. problems? My hope is that if the Azith. works for you your dd will be in good enough shape in a couple of months to tolerate IVIG. Link to comment Share on other sites More sharing options...
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