earnestfamily7

I too would consider ordering them if I couldnt get my ped to cooperate... she is good with giving the anitbiotics when there is illness or illness in the family but hesitant about the long term use... we go again on Wed and I plan to have the conversation about how far she is willing to go with helping my son & daughter... if she will keep them on long term antibiotics or work to find out which one works best... then depending on her answer I might mention the internet... But I am do admit there is a fear I have about black market drugs....

my DS9 had T & A in Nov... major exasperation after surgery... maybe that is where his strep was hidding.... on he plus side - we finally got it under control and he is doing much better now... not baseline but close now- we need to get my little girl back

when we ha my son in therapy a few years ago the OT therapist was helping him with sensory issues and then PANDAS hit and she helped with the rebound as well.... but my son is always making noise... sounds for every thing... when in therapy I asked the OT and the psychologist at the time and they both said that sometimes kids with sensory issues use sound ie. noise to help them be comfortable in their environment.... My son is 9 now and he still does the noise thing from time to time... but it has gotten better... the OT really helped him a LOT!.... also the noises get worse during exasperation periods...

Yes, my daughter's titers have never tested high, and she has many, many positive swabs. Thanks! I thought I read it somewhere and then went back and re-read it - It is helpful to actually hear it from someone with the 'experience of it' .... somehow in my mind it makes it more real.... I think this illness is making me neurotic!

thanks peglem- I did think about that possibility too. I am going to get a copy for myself too so I will review it an maybe post it for review when I do... Have fast does it take for a titer to elevate? If I recall you can have low titers and low antidnase and still present with PANDAS symptoms? did I remember correctly?

I did call back and different nurse gave me the same 3 numbers... ASO - ASO titer and AntiDnase.... she again said the lab they use marked her elevated at 200ASO... but normal on the other 2... I can understand the AntiDnase b/c it may not elevate for up to 6 weeks past infection... but the titer has me confused.... and I know I have read that they may not show elevated titers... I need to re-read that information again an get that to my ped....

Thanks Faith - That is what I am trying to figure out- why the nurse told gave me the ASO and the ASO titer number... she said Gabrielle did have elevates ASO levels but she seemed confused... she acted like it was 3 diff numbers even when I asked again... I am going to call the office back this afternoon to see if I can get more clarification on the numbers... an thanks for the info on how to view older posts and such. Steph

I thought I included this but looking back didnt.... she has great yesterday... asking checking down... no melt down... happy.... that is when she talked about sleeping in own bed... still talked abt the pee fears... but she seemed so much better on a lot of levels yesterday... more like herself - we'll see how she is today after school... it was a good morning too

Ok... I have read the information and re-read the information and yet I am still lost... My daughter got her blood results ba - she tested postitive throat and vaginal strep w/rapid test on 1/12.... she started a asking/checking (is it Ok that , is t OK if, what if its not OK...) , sleep w/all lights on, afraid that she had an accident (pee), afraid that she has pee on her leg, hand a drop on shoe...) afraid she is going to throw up, constant sanitzer (we switched from purell to alcohol free) rage/anger defiance (crazy behavior) terrified of strangers, of being alone even 1 room over on same floor, - she was given a 10day course omnicef (ended yesterday) - she is also on .25 mg rispiderol (sp?) since 1/8 an I upped it 2 2xs per day on Monday (I really didnt want to but honestly she was crazy) .... and here asking was MUCH less... and she talked about sleeping in her own bed (big step b/c I dont think she has slept in her bed since christmas eve (and looking back I think she woke up in our bed!) she also gives a high pitched squeal / squeek when aggitated (maybe just to bug me.... but possibly a tic) I had contacted dr.k (he helped us with our son via email and phone consult and gave us recommendations to give to our ped) He wanted to wait for blood results prior to making a suggestion... this is what the nurse at the Dr office told me over the phone ASO 200 (elevated per lab that did testing) ASO titer 88 (norm) AntiDnase (95) norm Does this make sense ... I just want to make sure I am getting the right info from the nurse as she seemed unsure when reading the results... also what is the difference between ASO and ASO titer numbers. I gave the numbers to Dr k and he replied that w/o elevated titers he could not make a recommendation one way or the other. and that to observe her w/o anything over the next couple of weeks an we would see where she is.... I agreed and asked about the antidnase as I thought that these #'s did not peak until 6 weeks.... I am keeping a journal and am going to start using Buster's system too... maybe its not PANDAS but it sure looks like it to me! My ped is willing to work with me but need to give her the right information.... Last but now least... can anyone tell me if it possible to read all of someones old posts...topics and if so how... Thanks again!!! Steph

My DS and DD had dark eye circles prior to T & A surgery- The dr said they both were HUGE! and likely cauing more problems then we even realized.... my son went into exasperation just after surgery and his eyes looked BAD!!! He has been on Omnicef for 8 days and they look so much better! (an he is doing Great!) My daughter has not responded as favorably to the Omnicef - (9days in) her eyes look awful! I told my husband and mom ... you can tell by looking at her - she is a wreck! (it doesnt help that she put vaseline in her hair 2 xs in the past 4 days!) and last night she cut a chunk out of here hair (a long piece... it can be hidden but nonetheless...) The ENT should be able to offer some help... where do you live again - my ENT is in OH at Akron Childrens in OH... he is very GOOD!

my daughter has been complaining all week (since we started the omnicef) that she is hot and needs a cold glass of water... I just started to keep a journal o I have something more concrete for the drs but I do believe that the hot flash does have something to do with the healing or the battle... she also is still running a lowgrade fever 99.1 - 99.8.... she has been on the omnicef for 7 days... we have also seen her symptoms improve for a few days only to get worse and then a little better... it is hard to sort it all out! My daughter also has waking issues - she often wakes completely terrified... can someone explain the yeast connection to me and what it means if there is an overgrowth and how you know....

My DS9 and DD7 both have sensory issues. When jordan was diagnosed our OT told us to get a trampoline and if we could fit a small one in the house get one of those too! My daughter went to OT when she was just 4 for sensory issues that the ped thought were related to not being able to expend enough energy and that is why she wasnt sleeping and getting so upset.... her fav activities there involved fast motion jumping and spinning - My sons therapist told us that some kid crave vestibular motion... It is an interesting connection...

My son was very sensitive to sounds... We were told he had an audotiry processing issue just before his 1st 'dramatic onset" I agree the out of sync child is a great book! It helped us a ton when Jordan was 1st diagnosed.... My daughter has trouble with textures and sounds during epiodes... I call it the 1t dramatic onset because as I review his med history there are little things that may have been precursor symptoms...

My Daughter (6) is on her6 day of cednifir (omnicef) - days 3-4-5 were good - i could see some improvement especially with rages/tantrums... she had none the past 3 days you could see her get agitated but seemed to be able to keep in check... same this afternoon... but at dinner - defiante backliding & new behaviors... she decided he would eat like a cat... lapped/slurped her soup and lapped a bowl of water (we at stayed in control... hard w/ 4 brothers watching on...) we told her that she was a girl not a cat and I told her we loved her... he was ok for awhile ... even went and got herself some 'catfood' ... we do not have a cat it was cereal... then he realized that cats have claws... started hissing and clawing! talked about going outside but stayed in (that is an improvement- normally when upet goes out no matter the weather) I tried to take her upstairs in an effort to get her away from her 1 older and 3 younder brothers... she said he was sorry and that he wanted to be with them... after a short stint upstairs we came down... the situation repeated... but this time she was a running not crawling like a cat and she got a hold of a pair of scissors (I have a craft cupboard that I keep kids materials in - never has been an issue) and threatened to cut her hair... she cut a few small pieces ... and I took the scissor (note to self get a safe - now not only for medicine but scissors!) I got her upstair again and told her that we could jut read or relax in her room - she started spraying detangler all of her room and then smeared vaseline through her hair (we put it on her horribly dry/chapped hands at night) and did the same with the lotion we keep on her night stand for her hands.... s she continued to have some of the asking checking doubting behaviors but she was sleeping better at night - only woke 1 in past week terrified that someone was coing into her 2nd floor room window or that there are strangers outside.... The stranger thing is back full force and the asking -checking was constant today! (mooommmm- is OK that dad wore that to work... what is people think he is weird... (me) it is fine - (he wears kahki pant and a polo to work...) or is it OK to drink that kind of jouce what if no-one else in the word does... or is it OK for me to touch my toe... I think my butt touched the wall... my toe touched the carpet.... on and on and on... - she did cut her tongue today (bit it when running around with brothers earlier & her 1 yo brother definately is getting sick - fever - cough...) she has had a lowgrade fever periodically even on the antibiotic In addition to the anitbiotic I ahve given her motrin or advil when she seems to be getting edgy... so is this a sign that the antibiotic worked and then stopped or didnt work or something else! Also my husband i having a hard tome believing that we have 2 kid with this disorder and that she really can not control herself (I keep trying to explain it and he understands the illness as my son has it too but for some reason he thinks it is all intentional with her... HELP!

interesting... my DD dumped an entire bottle of liquid mortin on the floor last week during a rage/tantrum (and rolled around it - another story) ... and then today when I tried to give her a med cup of mortin she begged for an advil pill (that is what I give her brother sometimes.... maybe he ha ESP too but on a more serious note I will be staying away from the motrin for awhile.... thanks for information!

I read several posts/thread that mention allergies may play a role in PANDAS symptoms exaperations.... my son take Claratin and singulair during 'allergy season' spring - fall (we normally stop when hay fever is done around oct.) should I keep him on these meds all the time? Anyone have experience or insight on this?

Thanks Vickie - yet send me the group names.... I applaud you for taking such an active role in you community to get the word out!

I give my PANDAS son and daughter (likely PANDAS too) melatonin at night 2.5 mg disolvable tabs.... avail at health stores or good vit/supplement depts in some grocery stores..... before the melatonin they both did the same.... couldnt settle to rest.... when I talked to my ped who recommended the supplements approx 1 yr ago... I told her it was like their mind would not shut down.... (my son is 9 1/2 - 5ft 110lbs.... my daughter is 7 - 67lbs 4ft...) give it some thought but it is over the counter so technically no permission slip is needed from a dr....

if it were me I would start them again - regardless of her answer... you saw the proof the abx work! You can always check w/pharmacist about antibiotic questions too....

I have read a lot of posts over the past few months and many of them mention 'educating the dr.s" - Has anyone conidered putting posts on social networking sites (ie. facebook) similar to the ones I see everyday on my the facebook newsfeed... everything is there from Breast Cancer and Heart Disease - to Miscarriage/ Infertility - to Autism ... well you get the picture.... It would be a way to raise some awareness at least in your circles... and you never know who you might help. A post could be something like... " P.A.N.A.D.A.S - a cute black and white bear to you - A MONSTER TO ME! P.A.N.D.A.S. (Pediatric Autoimmune Neurological Disorder Associated with Strep) has affected my child or a child I know. It takes over thier life in form of neuropsychiatric symptoms such as obsessions, compulsions, motor or vocal tics - all as the result of an infection. The onset is often sudden and severe - learn more go to http://www.latitudes.org/forums/index.php?showtopic=6265 What do you think?

mati'smom, would this be evident to the doctor, re the immune system not competent? or something that would have to be deduced, looked into further? if that were the case, wouldn't one have symptoms of these things, something to show for it? could there be those infections present, but not necessarily have symptoms, however vague? Faith If I understand correctly what some of the autism researchers and parents believe correctly, viruses like cytomegalovirus, epstein barr and the entire cascade of HHV's can, like the heavy metals those kids have problems with, hide in tissue. During that period the patient will sometimes test negative but if successful attempts are made to release those toxins from their binding sites, the patient will test positive and this is considered a good thing. It also brings us back to the biofilm theory which I'd be willing to bet my next paycheck will become a key in treating not only autism spectrum disorders and other autoimmune diseases but PANDAS as well. I've said for four years that PANDAS is like an episodic placement on the autism spectrum. Gat's mom. intereting.... after we found out that our son had PANDAS a few years ago he was seeing a psychologist, a speech therapist and an OT specialist at a center that specializes in helping kid with special needs and the treated a lot of children w/ autisim.... in my son's initial workups/tests there the psychologist said that some of Jordan's tests might place him on the spectrum but he was not autistic....

ye it is Cefdinir... I asked about the augmentin and she looked at what she gave him in the past... she saw that she gave augmentin early summer and it dint clear up the infection... then gave the Cefdinir w/ good results.... (and I can only partially recall the detail of this - I am starting a journal tonight!) Now I am trying to convince her to keep him on it if it work this time!

My son also took long to heal. The doctor had him on a much stronger, broad-spectrum antibiotic (Cypro) after the surgery, plus liquid Nystatin (antifungal), which he was supposed to swish around and swallow. I guess that was supposed to help with the stinky patches that form on the incision site. Still, it took a while, but not a full 2 months!How is he feeling otherwise? About the antibiotics, if it works, keep it going for a good while. A lot of people see improvement and think they can step down, only to see symptoms flare up again. I was shocked when the dr said that about his tonsils! When he went to the ENT for follow up 2weeks after surgery he said he was close to 90% healed and that within 3 days should be 100%.... I am looking forward to the ENT's explanation. He had a tough morning... lot of checking asking.... worried about how he would write at school (he has a handwritting thing going on right now where he wants hi letters/numbers to look 'perfect' - they are very neat and then he erases and writes very slow to make the fit his model of just right.... at home is very ADD/ADHD like.... running spinning cant concentrate very easily distracted.... ibuprofren does help him... lessens the symptoms... When I picked him up from school he seemed to be having a good day - the asking checking seems a little less than what I saw this morning but I did give 2doses of advil today in addition to starting the new med.... He did not however get his homework done... too much distraction and he aid he was 'afraid to start because he needed to write hi name and he is afraid of the letters" oh and I appologize for the dropped/missing s's in post.... that is a 'sticky' key today!

I took my DS to the ped to today for rapid strep (strep in house) and to get antibiotic changed.. Culture neg ... ped not surprised b/c low dose amox.... but he did SEE WHAT WAS HAPPENING with him (She changed his antibiotic to Cednifir 300 MG capsule 1 per day - hope it improves him and if it help do I keep him on this RX.... also sent information to the Inf. dis. dr.... hope to get them on board for IVIG (fingers crossed) and then I will ahve omewhere to turn for my daughter too (toes crossed) Interesting comment by Ped... 'when was T & A".... Nov 11.... "His throat is not healed yet - put in a call to the ENT.... it could be a ign of an underlying infection" Any thoughts.... ~ Steph

I know it is low - the 5mg dose is what the ped prescribed my baby 24 lbs! so when I told her that is what the ENT put him on after surgery to ward infection and then the ENT and neurologist and infect dis. drs kept him on - she was shocked - I told her that is was my thought that none of them understands the illness so rather than take a risk with a higher does they wanted to taked the wait and see approach with the amox... at the low dose I will say that my ENT is agood dr and dis know about PANDAS... so did the other 2 - the problem is they only know a teeny tiny bit and that is what they go by.... I think I will go back Med school as a hobby LOL!