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earnestfamily7

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About earnestfamily7

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  1. Well ~ my short break from the throws of PANDAS seems to be coming to an abrupt end. I knew it wouldnt be long after school started! Both DS10 and DD8 had a GREAT summer... DD starting ramping up in symptoms last week and DD started strong tonight.... Have a call in for a zith refill request - Tonight when I was putting DS to bed he started with the germ phobia... and asking/checking.... I immediately asked if he had a sore throat (he knows the drill) and he said no but today one of my friends at school told he was born with strep.... I almost fell over -literally! I asked where his friend sa
  2. I have been away from the forum for a while- not because I wasnt thinking about PANDAS but more that I need to give my mind a rest... and the kids were (key word WERE) doing very well.... we are flaring/ramping up again- so to answer your question... IMHO- #1 all of the above #2i would like to think and believe that slamming down the right antibiotics at the right time will prevent the BIG one - but I aw last year w.DD slamming down tons of rx over 4 month till symptoms abated - with DS his were gone with a few doses of the right rx.... o I think it is how it treated and what the trigg
  3. Thanks for the well wishes... and P.Mom I dont think of it as you comments as a downer... I had/have the same concerns. I thought it over though and the truth is even while home they are around kids... at the pool, sports camps, neighborhood and even without the antibiotics I cant make them stay put - I definatley want them on prof. antibiotic but until I can get back in touch w/ Dr T or find a local dr that will prescribe (which may be even harder since they are in a remission state) I will do my best to hide my fears from them and let them be kids and let them enjoy this time of normalcy (i
  4. Just a quick note to let everyone that is doubting themselves know that there is hope! We are sending DD7 and DS10 to camp next week. Both kids are doing well overall.... definately well enought to go to camp. I am a bit worried about DS10 as he has bedtime rituals that involve me... (say good night/kiss goodnight 3 times abd say a little matra) .... Both kids continued to improve once school was out... so I think I am ready for this... They are SOOOOOO excited to go so I know that they are ready! I am a bit worried as they are not on prof antibitoc anymore... we have not had any since Ma
  5. I am sorry to hear that you are going through this - Our DD7 was diagnosed with ODD before we found out she was actually a PANDAS child... When she was in bad exasperation mode a simple request of "please pick you shoes up" or "no you cant do that right now" would turn into full blown rage - we got her under control with a high does of amox (500mg)and augmentin (1000)- and it tokk about 2months until we saw improvement... she did pretty well for a few months and then we ran out of meds and have not been able to get in touch with the presrcibing dr - I see some behaviors creeping back in (irra
  6. Ditto on some of the above! It does seem that a lot of momma bears carry the weight of this but I know in my heart that my DH tries - he is just not sure what to do or when to do it... so a lot of times the choice is to pretend it isnt there - pretend the kids dont have PANDAS. My DH is very worried about the kids - he has talked to insurance multiple times - he has gone to Drs appointments with me - when DS was diagnosed 3 1/2 yrs ago he argued right beside me with the nuerologist at the hospital when they tried to tell us his ASO levels werent high enough... even though he had active strep!
  7. very touching - as hard as it is for us mom's - it must pale in comparison to what the kids go through - thanks for sharing this
  8. Thank you for the beautiful post and encouraging update! It is so nice to hear about the children that are doing well and to know how far others have come! Hugs to you!
  9. Happy Mama's Day! Chemar - I borrowed your cartoon for my facebook message Thanks! It is a great reminder that we all "Wear the Cape"!
  10. With tear filled eyes I send you and all my PANDAS mom hugs and wishes for a wonderful mother's day!
  11. Thanks for your input everyone... I shared your comments w/ DH and it does help us both to know that we are not the only family dealing with this stuff. I checked out the website on OCD... and I do have the book and have read almost 1/2... I bought it when things were very bad and it seemed I was too exhausted to read it. I just wasnt in a good place... but I will start on it again this week. I know we are in a much better place than we were in Jan and Feb of this year. The antibiotics have helped tremendously... but I know there is still a road ahead of us on the cognitive inflexabilit
  12. I have often said that my DD acts like a stalker.... on the weekends she starts 1st thing in the morning... she watches out the window to see if she can tell if they are home. I put a rule in place that she may not call until 10:30... and she she can not knock until 11:30.... but this always leads to meltdown when she realizes it is just 8 am or earlier! She is already worried about school being out and her friend being in daycare while she is at home... she has the friends schedule memorized... If I knew another child obsessed about my child I think I would be concerned I am gald to know
  13. I am getting confused about the Just Right OCD... our old psych said this is part of what DD7 has... but I never asked much about it at the time... this was all before we were on the PANDAS path with her.... So she is doing better in so many ways but to me it seems that this form of OCD is part of what causes her meltdowns... it seems like she has something in her head and when it doesnt play out to her plan then Bam- meltdown ensues.... For example,she is very concerned about getting to play with the girl across the street... she needs to play with her... and even if the girl has somethi
  14. I am a big Melatonin fan - it has changes our bedtime 'time; dramatically! My DD7 takes the 2.5 orange sublingual - my ped recommended that my DS10 go up to 5mg when he is having trouble settling for the night.... I agree with everyone as far as things being worse during exasperations... for us it seems like it takes the melatonin A LOT longer to kick in (normally 20 min... during exasperation can be 1 hr + Also it does not keep my kids to sleep either. We tried the time release and it make my DD hyper... didnt settle for 2 hrs and I havent tried it again since.... I never made the connect
  15. 7Upmom - drinks are hard here too... My kids like fresh lemon or lime with ice water... it gives some flavor to it - and no chemicals Interesting side note my DD7 who loves water (plain) told me 2weeks ago she no longer likes water - hmmm so I have no idea what she will drink this summer.... I hope it is a passing non-PANDAS thing and doesnt stick around long...
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