earnestfamily7

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 sat in class... right next to me (not that it matters that much ~ the microbes are in the classroom- and if you give a PANDAS kid a strep microbe - they will get symptoms) Ugghhh!!! I guess I will be back on the phone with Drs in the am in hopes of bringing this back under control FAST

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 trigger is.... very hard to figure out -however I think that in both cases there is the potential that some symptoms will remain (residual effect for awhile) <<side note- wouldn't it be great if this illness came with a guidebook>> #3 ? not sure how to answer - I think that regardless of the flares and symptoms I am seeing I always know there is a challenge ahead of me...and that there is something definately wrong with their health - so for me I think that I just know there is something wrong (is that what you meant?) ~Steph E.

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 (is that a word?!) and hope & pray for the best - I'll keep you posted.

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 May.... (knock on wood) also.... quick backtrack update.... we postponed our consult with Dr K.... we wanted to wait on the IVIG since the kids seem to be improving.... our ped wont prescribe prof antibitoc and we are going to see the infect. dis. Dr when the kids get back from camp in hopes that he will put them both on something before school starts... We have had trouble getting in touch with Dr T - but I still leave periodic messages and he was a life saver for us... Thanks to everyone who supported us through our personal ###### - I know that many of you are still living it - and I know all too well that we can slide back there at any moment.... the kids arent 100% - I would say 85-90ish but that is a far cry from where we were when I started 'crying out for help" Hugs! Stephanie

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 (irrational fears, anger, germs) these where gone for about 2 months... so to answer your question... IMO I thoink it sounds like a PANDAS form of ODD. Befor our DD was on meds she had 'episodes" in the winter when there was tons of snow and ice - she would go outside barefoot and refuse to come in! We would have to drag her back in while she was screaming kicking scratching hitting about how mean we were.... It is very frustrating - I know! - because the raod is long but luckily we have found this forum so it not quite as lonely- Have you tried the augmentin? or a combination of the meds?

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! He has read every book I gave him - he cried while reading Saving Sammy - knowling that it could have been us..... but there are times when I feel like I have to remind him that the kids are sick- the kids have P.A.N.D.A.S. - that is why they are acting that way - doing this/that - There are times that I think he tries to make himself forget... so that he doesnt have to worry about the financial and emotional strain it had put on our family. It is during the darkest hardest moments of PANDAS that he really 'rises up' that is when he cant hide from it - it is real and in your face and it has to be dealt with... when they are in receivery mode (when things are no longer crisis) is when he gets complacent.... Give your DH time - guys definately deal with things differntly - there is no dount that he is worried - he just expresses it and copes with it differently -

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

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!

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"!

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 inflexability and just right ocd stuff.... She is seeing a psychologist - we really like him - so I will try to get him on some stradegies.... up to this point we really have just been putting out the fires (more like infernos!) we see him again in 2weeks (in PANDAS time that is = to2 years the way things change) Hopefully she will continue to improve and be in a good place to actually implement strategies w/o worrying about causing meltdowns or rage...

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 that I am not the only one experiencing this. It is very frustrating.... Yesterday we tried to go to a city wide school art festival- a peice of her art work was selected (only 30pcs for 1st grade city wide... I am so proud) .... the whole family was so excited but she had a meltdown that lasted approx 2hours (because she couldnt bring the friend) and was upset that she had to leave the friend... they had been playing all day (approx 4 hours) ... we went... quickly saw her selection and went home.... all the while she was crying (no tears inside) but lots of whining and and pushing... once in the car - tears - screaming - yelling where back and continued until she was with the friend (my DH said let her go as he was tired of the yelling and didnt want a rage to surface. .... just another day controlled by a child with PANDAS..... I get so torn with what is right anf what is wrong as far as disipline.... if it really isnt their fault should we make her stay in the house ... and then the rational parent in me says I dont want to be controlled by a child.... rules... consequences.... it all gets so muddled!

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 something else going on it causes meltdowns in DD. so... this evening when she went across the street to see if neighbor could play and she wasnt home... meltdown (good 20 min.... I tired to calm by saying we could go for a walk and they could play later or tomorrow... But the meltdown continued and morphed to include the walk as I said I would need to clean up dinner 1st.... I am very greatful that she is doing well on other levels and seems to be improving in many ways... but for my DH and I the meltdowns and rages are soooooo hard. He tends to think that it is behavioral and that it is not related to PANDAS... I tend to go the opposite and think that it is part of her OCD thinking.... How do you know what it is?!

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 connection with the seratonin/melatonin relationship.. but that makes sense

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...

YEAH!!!!! I was so excited to see this today!!!!! Just like April showers to bring May flowers.... this is a great sign that there is HOPE in our near future!!!!

It sounds like good improvement to me... I savor the good moments- they keep me strong and remind me that she will be herself again! I am glad you had a great day.... minus the headbanging.... I look forward to the day we can all tell each other 'I am gad you have a good day/week/year.... without needing to put in the minus or except for phrases.

my son also has a thing with stuffed animals... He also surrounds himself with them... there are about 25 in there right now and I also found some of his younger brothers and sisters that he has in there.... He surrounds himself with pillows and stuffed animals. Recently he has begun taking pillows from everyone's bed often leaving the rest of the family pillow-less.... He takes them from his brothers after they are sleeping.... (I talked to him about not doing this and he got very upset... but I did give the other kids their pillows back) Right now in addition to all the stuffed animals there are 8 bed pillows and a long body pillow... Also, since the last exasperation in Nov he has only slept in his bed approx 5 times.... and only 1 time through the entire night... he ends up in our bed and he rings the pillows and all the stuffed animals with him... I will ask him about the closet after school... He doesnt spend much time alone up there... I am guessing he did it after i tucked him in last night.... he was in his room for about 30 min before i heard him run to my room several times (I am sure he needed to go back for more 'friends') This morning I told my husband we are going to turn the Master bedroom into a nursery like on Peter Pan... that way all 5 kids can be in there and then we can have the other bedrooms for us.... but then I realized that the the kids would catch on and we would all be squashed in a smaller room.... (my DD7 also PANDAS has bedtime issues too... doesnt like to sleep in own bed or stay in bed all night....)

I currently stay home with the kids. I stopped working 6 months prior to our 1st major exasperation (after child 3 was born) - It may sound hoakey but I told my husband something is going to happen and I wont be able to keep up with work. (I was working as a Director of Alumni and Development at a Private school. lots of nights and weekends... very hard with small kids) .... looking back it was the right decision at the time as it allowed me to run to endless appointments with DS.... but it was financially draining and still is.... I sell on ebay to try to bring in extra income... There is not an easy answer - I think this was right for us but there are many days that I think if I would have continued working I might be able to afford the treatments the kids need without so much stress.... I too try not to think it about it too much... I take one day at a time and have faith that God will provide what we need... and so far it has worked

OK... this morning while straightening my DS10's bedroom. I found a number of odd things all wrapped in duck tape! and yarn & strings all tied up in closest (like super mesy spider web) some of the tings that were taped were 56 pens in a row making a long rod thing... there were 4 of these... paper.... and boxes.... I have said in the past to my husband in the past that I think DS has amild hoding thing as I ften find strange items that I call trash (old water bottles, wrappers, balls of foil, foam inserts , old sticker sheets, anything the teacher asks if the kids want before she pitches it.... ususally come home with him... ) Is this tape and string thing related?

We are in the process of seeking preapproval for IVIG for DD7 and DS10 .... My mom, who has been through the think and thin... the good the bad and the very ugly phases of PANDAS with us was very excited that we are moving in the IVIG direction.... However when I told her and my DH that many of the PANDAS kids that get IVIG need more than 1 and often see 'turning back the pages" or the bad symptoms coming back before improving, they both asked why? and how long? I didnt have a good answer on the why and I told them the how long varies.... Can anyone explain to me why this happens.... and are there times when it does not? We did a phone consult with Dr K 3 years ago and are doing another May 11th so I will be sure to ask him as well. But, it would be nice to hear about the experience from those who have delt with it 1st hand. Thanks! Steph

I can relate to "shouldn't I know what to do by now".... as I have been going through PANDAS exasperations with my son since 2006... but honestly I get totally freaked out ever single time!and now with 2 of them going through it- my brain goes into overlaod! I know what to do in theory... but for me what really scares is me is the holy *** feeling of helplessness as you see your child slipping from you. For me it is a maternal instict to panic and then I set out on getting them on the right antibiotics....and getting them back to baseline - all the stuff you know... With my daughter she had only a small window that was "good" while on steriods. We were told that often it means the infection is strong and fighting.... remind what antibiotics is she on? I hope the steroids calm things for you in the long run and that you can get a repeat IVIG down at a higher dose in the coming months. Remember you are on the right path you just hit a nasty hole in the road! Hugs steph

Colleen- Thanks for the information- I will put in another call to the Dr to see if we can get more meds... I have no problem making the changes as long as I can keep getting the antibitoics for them Dr T put Gabrielle on the higher doses when we tired to drop her to 2xs per week and everything OCD, urinary frequency, screeching tic, dangerous behaviors, etc.... came racing back.... when she went on the higher does of both antibitocs everything except some just right ocd and rages/meltdowns seem to havine diminished.... It is such a balancing act! Trying to get them on the right medicines and then stay away from strep .... and everything else going around!

dcmom- thanks for the input on your daughter - I had a feeling that she was reacting to it... and I am sure it doesnt help that we have 5 kids (inluding her) that have been on and off sick all winter... after I posted I started thinking about her 1yr old brother- he has frequent ear infections - that from what I learned on this forum are caused by strep virus... (if my memory is still intact!) so she could be reacting to him too! We did the consult with a PANDAS Dr- I asked him about the melatonin and the warning and he said it would be OK to keep taking it... it is a Godsend in our house I honestly dont know how we survived without it.... many nights up past midnight... if full meltdown mode....

Jordan is 110lbs 5ft tall- it is 250mg 2xs per week - when he went on daily zith he was already in pretty good place- dr t wanted to see if it would improve him more... when we first started dosing it actually made things slightly worse for approx a week- then he went back to approx 85-90% to baseline... Gabrielle is 71pounds just over 4feet tall - she is on 500 mg per day and 1000mg augmentin Thanks!

It has been awhile since I lasted posted.... I have been on the site often but quite honestly between all the worry and care for the 2with PANDAS I think my brain is fried! and I couldnt organize my thoughts enough to make an intelligent post.... but after yet another call from school about strep in the class/school I will try my best.... DD7 has been on zith 500mg and augmentin 1000mg for approx 1 1/2 months... she has been on zith since Feb 13th.... as I posted before most of the OCD had dimished or been minimized... But she still had frequent meltdowns and rages... they are pretty much a daily occurance and often more than 1x per day. she is very volatile - I tiold my husband she is like a can of soda that gets shook up all day (at school) and then explodes as soon as she in the car or home. her just right ocd is still strong - . she also still has bedtime fears -wont sleep in own bed and still cant sleep without the melatonin. We tried to switch her to the time release melatonin and she wasnt falling asleep at all so we went back to 5mg tabs... DS10 had big exasperation in November and we got it under control in Jan - ominicef brough him back to about 85-90% and then we were giving amox daily per infectious disesase dr... He went on zith 3 week course and then profalctic dose 2xs per week. We are seeing his handwriting go downhill - also trouble spelling... even 'easy words like sweep.... and contactions, possessives and plural possesives - which they are learning now are a big problem! his math ablility is holding steady so far but we have seen some buckles last week (I pray that it is not a sign of what is to come Also he can no longer sit still... super hyper again.... always has to be moving - even if watching a show has to be banging a ball on wall (which drives me crazy!) or hitting (not hard) the couch or pillow.... high tacticle cravings- moving hands on walls.... he is on allergy medicine too... so maybe they are playing a part so.... here are some questions spinning in my head... The school nurse calls me when there is a case of reported strep.... Over the past 4 weeks I have gotten a call every week - mutiple times in a week - there have no reported cases in my sons class (4th grade) but 3rd and 5th... and every weeks there are cases in my daughters. Both of my kids are on antibiotics - Gabrielle daily - jordan 2x's per week.... would they still have a response to the strep even while on antibiotics? I am considering asking to bump Jordan back up to full zith... Also - with both of them being on meds is it possible that the die off is causing the reaction... or with Gabrielle shouldnt that be contradicted being on both zith and augmentin.... We started pursing IVIG for them as well... I beleive that it may be our only chance of getting back to a so called normal life. any advice or thoughts are appreciated!