melanie Posted December 13, 2009 Report Share Posted December 13, 2009 VERY VERY WELL said !! I have tried several antipsych meds with danny I had to,His behaviors were ..well ..not easy to handle.My question to all is what has helped aside from antibiotics? Risperadal helped for about 1 month Every SSRI has been a disaster A freaking nightmare. has anyone had any medication that has been successful? If the basil Gaglia is swollen is there a antiswelling medication I know the steriods help but anything long term,aside from IVIG(still waiting for that) I guess what Im asking is what medications work on that area of the brain? Just want things to be ok I guess Have a good day Melanie Link to comment Share on other sites More sharing options...
thereishope Posted December 13, 2009 Report Share Posted December 13, 2009 Not the answer you're looking for, but what has helped us besides antibiotics... Patience, determination, hope, and love. No one can write a prescription for that. Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted December 13, 2009 Report Share Posted December 13, 2009 VERY VERY WELL said !! I have tried several antipsych meds with danny I had to,His behaviors were ..well ..not easy to handle.My question to all is what has helped aside from antibiotics? Risperadal helped for about 1 month Every SSRI has been a disaster A freaking nightmare. has anyone had any medication that has been successful? If the basil Gaglia is swollen is there a antiswelling medication I know the steriods help but anything long term,aside from IVIG(still waiting for that) I guess what Im asking is what medications work on that area of the brain? Just want things to be ok I guess Have a good day Melanie While I do agree with Vickie -- patience, hope and love definitely play a role -- we, too, have been coupling the abx with other meds so that our son's life is not a complete and utter he!!. We actually have a history of that because he'd been diagnosed with OCD well before PANDAS reared its head. For us, SSRIs have not brought about negative changes; initially they appeared to assist significantly, and now they just seem to have little, if any, positive impact, but no negative. It doesn't appear they're an option for you, though. I've seen a number of recommendations for good ole fashioned Ibuprofen for the swelling; have you tried that? I haven't yet, but I plan to. We have used clonanzepam in very low doses, and it has quelled some of the more agitated behaviors my son can display; anything over a milligram, though, and he would sleep all day. Same with risperadol and seroquel; one experience with each of those was enough for us, and I said, "no more." Also tried Zyprexa but despised the side effects; he was ravenous all the time and gained weight almost immediately. It helped his mood, but he ate and peed constantly. I couldn't get him off that fast enough. The latest tool in our arsenal is Intuniv, which is a new, non-stimulant ADD/ADHD medication. We've heard from various sources that these types of meds can help and I would say, thus far, it seems to be. When he's better able to focus on something, he gets less stressed about trying to process the information or organize the homework, etc. So the OCD behaviors abate some as a result. We're struggling our way through this, too, like you. Keep in touch about your progress. Link to comment Share on other sites More sharing options...
EAMom Posted December 13, 2009 Report Share Posted December 13, 2009 I have tried several antipsych meds with danny I had to,His behaviors were ..well ..not easy to handle.My question to all is what has helped aside from antibiotics? Advil. Link to comment Share on other sites More sharing options...
nevergiveup Posted December 13, 2009 Report Share Posted December 13, 2009 Melanie, Maybe help with the BBB, like blueberries (at least half cup a day), fish oil, adequate sleep, cardio everyday. Selenium. Do whatever you can to reduce him getting an infection. Your question is a good one and many docs and pharmaceuticals would love to figure it all out. I have heard Lexipro has a different mechanism than normal SSRI's, have you tried that one? What about GABA for calming him??? IVIG of course reduces inflammation, its been proven on MRI results from SWEDO. I hope the IVIG is approved soon! Take care, I am praying for you. uote name='melanie' date='Dec 13 2009, 08:35 AM' post='48475'] VERY VERY WELL said !! I have tried several antipsych meds with danny I had to,His behaviors were ..well ..not easy to handle.My question to all is what has helped aside from antibiotics? Risperadal helped for about 1 month Every SSRI has been a disaster A freaking nightmare. has anyone had any medication that has been successful? If the basil Gaglia is swollen is there a antiswelling medication I know the steriods help but anything long term,aside from IVIG(still waiting for that) I guess what Im asking is what medications work on that area of the brain? Just want things to be ok I guess Have a good day Melanie Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted December 13, 2009 Report Share Posted December 13, 2009 I have tried several antipsych meds with danny I had to,His behaviors were ..well ..not easy to handle.My question to all is what has helped aside from antibiotics? Advil. I've seen Advil and Ibuprofen over and over again on this board. So this morning, when my 12-year-old complained of a pain in his neck, I gave him one, 200 mg. tablet. Not only did his neck ache go away, but he settled right down to concentrate on some homework he'd been working very hard to avoid for the 1/2-hour or so prior to that! Maybe coincidence, maybe something else . . . . ?! When you advise Advil or Ibuprofen, what kind of dosing protocol would you suggest? And for how long? Are you using behaviors as your cue to dose, or are you using it prophylactically, as well? Link to comment Share on other sites More sharing options...
melanie Posted December 13, 2009 Author Report Share Posted December 13, 2009 Ok so if advil works so well anyes we do use it dailt 400 mg in the AM what other antinflamatrys are there ? What meds target the basil gaglia? Also how much advil is to much is 400 mg a day to much or to little hes 138lbs Melanie Link to comment Share on other sites More sharing options...
EAMom Posted December 13, 2009 Report Share Posted December 13, 2009 My 54 pounder takes 200mg every day (long term dose). Short term, I would be comfortable giving that dose up to 3-4x daily (give with food.) For a larger child you could easily give 400mg 3-4x daily short term. Perhaps lower that to 1-2x daily long term. Link to comment Share on other sites More sharing options...
brooke Posted December 14, 2009 Report Share Posted December 14, 2009 Hi. I know what you are going through! Stay away from SSRIs as you know what the results are. The ONLY medication that helped somewhat was Clonodine. It is a hypertension medication that made my son very sleepy, so I gave it to him at night. Then Dr. Latimer put him on the Clonodine patch, and it helped until we got antibiotics, did IVIG and PEX. Hang in there and keep fighting! There if you need anything! Brooke Link to comment Share on other sites More sharing options...
harmony Posted December 14, 2009 Report Share Posted December 14, 2009 Hi.I know what you are going through! Stay away from SSRIs as you know what the results are. The ONLY medication that helped somewhat was Clonodine. It is a hypertension medication that made my son very sleepy, so I gave it to him at night. Then Dr. Latimer put him on the Clonodine patch, and it helped until we got antibiotics, did IVIG and PEX. Hang in there and keep fighting! There if you need anything! Brooke We had success on Clonodine. Cognitive therapy for his OCD did not work for him without the Clonodine. We do not give it to him regularly= except when his tics and OCD are seriously interferring with his life. 1/2 of a .1 tablet worked for my son (when he weighed 50 lbs.) I agree, only at night. Advil works for his anxiety!!!!!! Link to comment Share on other sites More sharing options...
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