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Need Immediate Advice - Medication


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I haven't posted in over a year. We lost our son to PANDAS just over 2 years ago, but were able to bring him back 80% with Ceftin and Valcyclovir on a daily basis as well as biofilm protocol and monthly IVIG. For awhile, we were able to push the IVIG out to every 7 - 8 weeks, then symptoms would reoccur and we had to go back to every 4 weeks. A few months ago, we made the mistake of changing his antibiotic and lost him again for a couple of weeks. We switched back to the Ceftin, but haven't been able to recover. His anxiety and violent reactions are now so bad, we must place him on a medication to control his anger so his younger siblings are safe and we can preserve his self-esteen - what's left of it. I have come to this place very reluctantly (he's 9 and has had the PANDAS diagnosis for bearly 5 years) and only want to consider it on a temporary basis as I know it's the PANDAS (or PITAND of Lyme or whatever) that is causing these behaviors. I have to keep my other kids safe.

 

I know some medications are worse for kids with PANDAS. Does anyone have advice for me on specific ones to avoid and anything we can ask for. We already do Ibuprofin and have Prednisone, but that wires him even more at night. As it is lately, he often wakes up between midnight and 2:00AM and is up for the night. I'm going to give him the activated charcoal today. Our doctor wants us to try him on Aztrionam in addition to the Ceftin. He's very sensitive to phenols which makes some of the natural supplements difficult. I'm open to any suggestions at this point in an effort to save my little boy and my family.

 

Thank you for your help and understanding.

 

Jena

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I haven't posted in over a year. We lost our son to PANDAS just over 2 years ago, but were able to bring him back 80% with Ceftin and Valcyclovir on a daily basis as well as biofilm protocol and monthly IVIG. For awhile, we were able to push the IVIG out to every 7 - 8 weeks, then symptoms would reoccur and we had to go back to every 4 weeks. A few months ago, we made the mistake of changing his antibiotic and lost him again for a couple of weeks. We switched back to the Ceftin, but haven't been able to recover. His anxiety and violent reactions are now so bad, we must place him on a medication to control his anger so his younger siblings are safe and we can preserve his self-esteen - what's left of it. I have come to this place very reluctantly (he's 9 and has had the PANDAS diagnosis for bearly 5 years) and only want to consider it on a temporary basis as I know it's the PANDAS (or PITAND of Lyme or whatever) that is causing these behaviors. I have to keep my other kids safe.

 

I know some medications are worse for kids with PANDAS. Does anyone have advice for me on specific ones to avoid and anything we can ask for. We already do Ibuprofin and have Prednisone, but that wires him even more at night. As it is lately, he often wakes up between midnight and 2:00AM and is up for the night. I'm going to give him the activated charcoal today. Our doctor wants us to try him on Aztrionam in addition to the Ceftin. He's very sensitive to phenols which makes some of the natural supplements difficult. I'm open to any suggestions at this point in an effort to save my little boy and my family.

 

Thank you for your help and understanding.

 

Jena

Those antibiotics you mention are used to treat lyme, especially Ceftin which is a cyst buster. A change in an antibiotic can produce a setback or herx. Do you know whether he has lyme? If lyme or bartonella is involved the prednisone would not be helpful and could make things worse.

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Is it the rages and anxiety, specifically, that you're looking to target? Are you considering psychiatric meds? If so, I suppose you're already aware of the Dr. Tanya Murphy/Dr. Eric Storch study about anti-anxiety meds (SSRI's) and PANDAS kids . . . in summary, that if you are going to go that direction, you need to go very low and slow with any dosages or the behaviors may actually become activated, rather than calmed. Something to keep in mind going forward with your medical professionals. I'll just add that our DS is on a low dose of Zoloft and does well with it in terms of anxiety and OCD.

 

Also, since it seems you're trying some more holistic protocols, have you tried Valerian Root? I don't believe the brand we use has any phenols in it. It's great for calming.

 

Also, at night, you could try Melatonin; again, I don't think ours has any phenols in it, and at 3 mg. (DS is 13 and 140 pounds), he sleeps through the night. You can get it in dosages as low as 1 mg., so you might try "low and slow" with this, too, and see how he responds.

 

Good luck to you!

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