earnestfamily7

That is great news! I keep telling myself how important the babysteps are... and the writing improvement is a big one in my book - with my son. On my end though we are seeing his assignement book getting messier again! Uggh Relish the high points of recovery they are what keep us going Thanks for sharing - I needed a lift!

I am still seeking help answers and treatment for dd. One of the specialists I spoke with asked me if I was open to alternative approaches and I responded that if she told me to feed DD fried dandilions every night for dinner I would do it- I am that desperate! she responded that I might want to try this approach. Have any of you tired this with your PANDAS? Did you see improvement? I dont know anything about it and plan to read about it tonight... but the overview reads "Much of the focus of the NMT system is to optimize the immune system response to microorganisms that cause disease that it is used to treat auto-immune disorders..'.... We are looking at IVIG for her but also want to make sure that we are doing everything we can to help in the interim, as well as bewtween IVIG sessions as it seems that often more than 1 is needed....

I have always thought about this topic.... My DD7 is very bright/ tested gifted... even in exasperation she does well... except when concentration or rages or OCD get in the way.... but she can ususally pull it together to get though school and homework.... My DS10 is bright but did not test gifted.. I have always thought that his PANDAS does get in his way... concentration is very hard for him in exasperation and his OCD things make school work hard to get through (asking/checking) .... I have been wondering about how to chart his progress recently as he was in full blown exasperation from november to mid Jan.... He has made all A's all year but it has been a struggle- when we were moving from winter to pring I was comfortable that he was doing well - 95% baseline... but then allergy season hit... and the kid cant concentrate again and cant spell!!!! he was getting 100% to 100% + on tests and this spring he is bringing home near failing spelling papers! so.... needless to say I think it is complicated... with him even in big exasperation he did well (but I attribute this to his teachers understanding and making accomodations... also I think the handwriting OCD (erase/rewrite senario) forced him to think about the words and or numbers) just a theory in my head and I am a bit tired so it might make no sense to anyone but me.... also is there a way to vote 2 x's on poll... for another child?

You and your son are in my prayers... We are still struggling here too.... good days that remind me of what it should be.... It is such an emotional rollercoaster. I pray that your son and all of our children find the peace and wellness that they all deserve. I say many prayers to St. Jude as well (the patron of desperate and hopeless cases <"St. Jude, you witnessed the healing power of our Lord Jesus. You saw his compassion for the sick and dying. You yourself touched the sick, shared the sorrows of the mournful, and encouraged the despairing. You received this authority and healing power to work wonders, to cure the incurable, to make people whole. We ask you to intercede with our brother, Jesus, to send his saving grace to heal the sickness and suffering of _________________________________, to uplift his/her despondent spirits, and to instill hope in his/her hearts. Amen."> Hugs Steph

Just an update.... last night my DD said "something feels different with my body today... I had such a good happy day" and she really did! there were no meltdowns no rages very minimal OCD things... she even went to be happy.... so maybe the medicine is helping in the fight.... I am starting to look at PANDAS like a war... mayb yesterday er body won a battle (with the help of the antibiotics) but the war and the daily battles still ensue as today was a rocky day.... but there were no rages and still minimal OCD and it seemed to be the "just right or just so" that lead to meltdowns from frustration... so maybe a little progress is being made... I am going to look for Buster's charting system so I have something concrete to refer back to....

We added 100mg augmentin to DD7 to the 250mg zithromax this week. She was exposed to strep approx 2 weeks ago and has been ramping up since... the thing that bugs me the most is the meltdowns and rages.... I have heard that it can take a very long time for them to go away and sometimes not until IVIG or PEX. then others it comes faster... She did respond to steroid in Feb so we know there is a chance for success with the IVIG or PEX Just curious as to what others have experienced on augmentin and/or the combo

I am going to start paying attention to my DD and DS's hands and how they look in conjunction with their symptoms... It could be seen as an OCD overwashing rash.... but when there is no washing or no overwashing there must be another cause.... I wonder how many other PANDAS kids have this red hand thing going on - with my kids it definitely coincides with a ramp up... Is it possible that it could be similar to an allergic reaction... for example the PANDAS child is exposed to strep and then gets the symptoms and on the hands the skin gets a form of allergic dermatitis? ~ Simplygina - we are still on the augmentin - I want to give it a chance to work - I am going to start another post to see how long for progress with rages as it seems many of her other symptoms are going away

I should have put in my last reply that on the hand-washing thing I ma nt sure if it tied with the frequency... as my daughters is also red/chapped/chaffed looking.. and this time around I am not noticing an increase in the hand washing... (but she has had handwashing / germ related OCD in the past).... also my DS10 also gets the same look to his hands when he is having symptoms! It is an interesting symptom... it made sense to me when she was washing her hands all the time... but now that she seems to be washing on a normal basis I can't figure out the redness... could it be an inflammatory reaction of the skin... like a pseudo-psoriasis?

As far as the red hand thing... for her it appears on the top of hand (not palms) and goes from approx knuckles to wrists... I have always seen it as sign that things are ramping up... she starts washing her hands a lot and I have to start watching frequency... sometimes she mentions germs but so far we have not heard about them this time around... it is bizzare how many similarities the kids have... I am hoping the antibiotics are going to take care of the rage / meltdown part soon! We did have a good morning!

My DD7 started yelling this week that she can"feel the pressure" and she cant take it much longer. Her symptoms have been up and down since Jan - but we have definitely seen progress and then lots of backsliding and then progress... and then - well you know the pattern.... Here is a brief background of meds since Feb 10 For the last 2 weeks the meltdowns have become more frequent and the anger/rage has returned. We did a 10 day steroid burst and started zith. beginning Feb 13 - we saw some big gains - most of the OCD was gone- the meltdowns became less frequent and the full blown rages were gone.... this honeymoon a few weeks - by the beginning of March we dropped back to prof. dose of zith (2days per week) things started ramping up gain (and I got word of confirmed strep in class... and she has been fighting off colds/allergies? since the snow melted) so went back on full zith last week and this week added 1000 mg of augmentin per day... This week she has really struggled with behavior... she has gotten warnings in school (which is rare for her as she tries very hard to hold it together at school and then falls apart at home) she has had a lot of meltdown, age inappropriate behaviors, rages, vision fogginess, headaches, stomach aches, OCD stuff is still on the low side but I did notice tonight her hands are getting that 'tell-tale red/raw look" again.... so.... does anyone have any idea what this 'pressure is" - she says it during meltdowns and rages... last night she said she felt like she needed to kick or hit or tear or something - but she just laid on the floor and kicked and yelled (this was after she attempted to destroy the kitchen) .... and today after her eye doctor appointment she had the same thing happen - she got very angry about going to school late... tries grabbing the steering wheel - unbuckled, moved around the van - tried to bite my shoulder (luckily it was cold this morning so I had on a sweater) - and in the middle of the fit she started to the talk about the pressure... not sure what to make of this

I took my DD7 to her ophthalmologist this morning because she has been saying on an off for approx 1 month that her eyes are foggy... on Tuesday she was crying that her head was hurting so bad (I had given her mortin approx an hour prior) and she was pointing to an area just above her left eye - and she was saying her eyes were foggy.... on top of this she was have a rocky day behavior wise.... frequent meltdowns and age inappropriate behaviors.... The Dr today found nothing.... ran loads of eye tests.... she had the pupil dialtion test about a month ago when she had her annual check up (she has amblyopia) he said they look great - no swelling and no explanation of what was happening.... and of course he goes on to tell me that he knows of no autoimmunie disorders that cause transient eye problems.... where the symptoms would come and go so quicky - but he did say he would do some research and I of course promised to give him all the information I had on PANDAS.... He did send us home with a graph/chart with dot in center that she has to look at each day/covering each eye to see if she is every missing part of the pic (we are supposed to do this for 3 months! and then go back!) It is my belief that this is just another symptom... it comes and goes like the other and varies in intensity and frequency....

I agree... I would be furious! - Although I am the 1st to admit it doesnt take much these days to push me to the "mad as H" level. I know how you feel about not wanting to cause 'trouble' in the classroom' for your child. However, if she has already discussed your child with another adult once she may do it again... it is unacceptable to discuss your child's behavior with anyone aside from school administrators and you. For crying out loud - they wont even tell you the names of the kids that are out sick, who hit your child in daycare/ where the bite mark came from... who pushed.... ... WHYwould a teacher think it is OK to talk about another students actions/behaviors?! I would send a formal level to the administration and then follow up with a phone call requesting a meeting - but I would also let them know that you have concerns for your son becoming the scapegoat.... That is very sucky

That is a beautiful poem - and a reminder that as mothers we really are crusaders. Our children are our cause.... This is a great reminder to keep up the fight... the cause is priceless and worth every sacrifice...

I understand your concern... I worry the same way about me DS (almost10).... when he in an exasperation or his symptoms flare he has a ing for stuffed animals- he carries them all over the house (not just one or 2.... approx 12 of them!) and he will ask for stuffed animals that I gave away (he thinks they are stored somewhere_ 3 years ago! 2 years ago he had an episode where he LOVED fisher price little people... he would take his brothers Little people and hide them in his room - set them on his dresser... you name it.... He is doing much better these days and have seem most of the regressive behavior diminish... It is interesting though... when they age regress in play I also see it in the 'whole child" emotionally/cognitively.... I hope she continues to get better

Pacific Mama - WOW!!!! and thank you for the list of symptoms ~ after reading through it I am considering the test for myself too... Also a few other questions.., my DD7 tested high on the Lyme Ab IGG/IGM and positive on the IGG band P41.... test Western Blot testing refered to the Cleveland Clinic Lab.... per Dr. T we are going to repeat the tes tin approx 1 month ... am I reading the information correctly - that we should request a specific lab to run the results - like Igenx.... if so how do you have recommendations on how to make sure the correct lab runs the test?

I hope things are beginning to improve for your son. My DD7 and DS9 both tested neg for mycoplasma ... just got the results back 2 days ago. DD was .71 (<.91 ISR)... DS was .41 on same scale.... they both had high IGE numbers (the unit that measures allergies/allergic reactions)... My kids also do not register high titers w/active strep infections... they do elevate just not much.... maybe a connection? maybe not? My kids have been on Zith since 2/13/10 and my daughter is improving... saw great improvements on steroid (5day) on days 2-5.... lots of gains on the antibiotic.... I remain forever hopeful and forever thankful for Dr. T and those like him! I hope the PetScan goes well - thinking of you Steph

I am so sorry your son and your family are living this horrible ordeal - it breaks my heart and makes me want to scream all at the same time... We have rage/meltdown issues with my DD7 - many times thought about admitting - even went to the hospital 1x... I pray daily we never get to that point again - I pray that today will be a better day for your son and your family. You may not realize it now but you are remarkably strong - your determination to get your son well is apparent. You are on the right road.... you just hit a big ugly pothole! (the hospital) - Fight with the AMA - an attorney - whatever it takes... btw hospitals do not like bad press - I would call your local TV 'investigative reporter' - let them know that they left your child with PANDAS locked in a room to bang his head on an unpadded wall for an hour!!!! that should be enough to get anyones attention.... Lots of prayers and lots of hugs. Steph

Oh my, I am sorry that Strep has struck... again! I will be keeping you and Pixie in my prayers. I hope this is a bump in the road and she will be on her way to wellness again soon.

We have completed 2 rounds of NAET testing/treatments. So far my DD showed reactions to B vitamins and calcium! Soooo she was pretty much allergic to everything! we saw some improvement after the desensitizing but not a lot. We plan to continue with this treatment and will keep you posted on what we find. I thought I recently read in a post or a posted link about calcium or a derivative and the role it plays in illness/PANDAS..... my memory if very sketchy on this as I was reading late at night and now cant find it.... If you have any idea what I am babbling about will you please send me the link. Thanks!

Thank you for sharing such happy and encouraging news! Happy Birthday wishes to your son - what a wonderful way to start a milestone year!

That is a great point! I never made that correlation... seems so obvious now - this is EXACTLY what both my son and daughter do!!!! I have a 10 year old who loves reverts to preschooler - 1st grader..... and a 1st grader that acts like a 3year old...... all when in exasperation mode. I knew that were regressing but it does seem that they are regressing to that onset age~ very interesting!

Anyone familiar with the lyrics to this song? I heard it the radio today and it really hit home today... this song describes the 'never knowing when PANDAS will pop back into the picture' all too well.... if there is ever a TV campaign or radio campaign for PANDAS awareness I vote for this as the 'theme song" here is a link to the lyrics... http://www.lyrics007.com/Matchbox%2020%20L...l%20Lyrics.html I just cut and pasted it our of my browser so there is no guarantee that it will take you there but if not... google it...

This has really caught my interest. This past fall I went to the ER for chest pain.... ran all the 'heart related' tests.... My symptom.... sharp chest pain that took my breath away! even that day it came and went a few times... follow up with my normal Dr.... they did not check for MP.... I may go back and ask for the bloodwork..... we are waiting on labs on my son and daughter.... if they show + I am definitely having myself and the rest of our bunch tested.... I have not had that severity since November/early December.... but it really has me thinking as i do have joint pain esp in hips/pelvis.... and elbows.... More food for thought.... I am going to need to move from a plate to a platter!

Jules, I am mostly English, not sure where in England my ancestors are from? I will look into this. Lisa I am Polish/Hungarian/German/French ..... my husband is a European Mix as well - English - and he thinks German ?! (I will send his sisters a note!!! for a man w/a college degree I sometimes wonder if her really went to grade school and completed those family tree.... geneology charts - It seems I did one every year in grade school LOL!!!! so that makes my DD and DS a bit of a melting pot

Thank you everyone for all of your support - right now it means the world to me! We are working with Dr. T now and yesterday even in the midst of the chaos that was still echoing in my mind I felt some of the weight lifted from my shoulders - Thank you Dr. T! - I know there is hope. We will do some bloodwork this week (if the lab is open Monday we will do the draws then) she started on steroid boost and z-pak on Saturday. Today was another rocky and volatile day... but she 'seemed different' for a few hours this morning until close to lunch.... when she was "different' there was a calmness to her that we have not seen in a very long time. She was pleasant, helpful and patient - it is the moments like that which I miss the most - you know those moments that give a glimpse at what her life could be like.... SHOULD be like. I am hoping that it was a sign that that the meds are taking hold and beginning the fight against whatever it is that is trying to take over her mind.... on the question of the Omegas... yes, I did recently start them... I stopped - no dose yesterday for anyone in the family... no more until I understand this better... if I am reading the label right 16% of the omegas are from the Omega 6..... we have been considering going to a preventative medicine group near us for a blood work up... for the food allergist, metals, yeast, toxicity levels - the DAN - workup and protocols.... and to get advice on supplements.... on Tuesday we are taking her to do NAET testing for allergies as well (hopefully).... I will keep you updated on our progress. Thanks again for all the thoughts, prayers and 'virtual' hugs!