bgbarnes

Wow! I have so much to learn- I never really thought we had OCD stuff but more and more reading these posts I am learning that the little things that I just dealt with just might be OCD from PANDAS....my son at least is feeling comfortable talking to me about it....this week he has asked for something to hold in the car- he says it makes him feel better....not sure what that is about but I it was something new.... Brandy

Thanks everyone! DS is 7 almost 8...so here's hoping to outgrow the aggression!! It is so nice to go to a place where I can get ideas or know I am not alone! The Dr was shocked at the allergy test results due to his elevated ige and his nose was inflamed and gave us a nasal spray and I have been giving him Claratin ever since. Should I give him something else? Our Dr that did the allergy test is a Dan dr but did the traditional test. He basically said- let's wait for the Cunningham test before we move forward....so it looks like next week dictates our next move. Thanks for letting me get it off my chest- I just want to hold him and apologize over and over again for not being calm- I lost it......but we have talked several times and we are good-I just want to hold my baby and FIX his pain! Brandy

My ds had an allergy test on Tuesday- basically nothing showed up as reactive- mild trees, grass and dogs- even though is ige is elevated. However every Spring something changes in my son and he becomes a MASSIVE behavior problem..... Then for the past few days-definitely feeling the PANDAS ramp up- has been in the principals office for physically hurting kids 2 out of the past 3 days. The first one on Wednesday- he SWEARS he did not do- the teacher saw his arm on her and 3 other kids saw it. He supposedly dug his nails into her arm- he does this- I have scars... Wednesday night-when I saw him step on his sisters foot I asked him why he did it- he said because I stepped on the other one and I felt weird if I did not do the other ( I don't know much about OCD- but this did raise some flags- however I might just be super paranoid)....Wednesday he also he hit his sister with a stick- even though he knows that is not allowed and sort of had a similar answer- he did it because he had to.... Today he bent a kids hand back at field day and insists it was an accident. I tried to get him to write an apology letter- then all ###### broke lose... had a MAJOR meltdown- I did not handle well either- his mouth really gets to me last night wet his bed, he is overly emotional, defiant, tried to bite me etc- could the allergy test invoked a flare up of some sort? He is on day 8 of Omnicef but I am not seeing any major results like I did last time.....My Dr waited a month with frozen blood before sending it to Cunningham-he forgot to run ASO titers etc...so I don't even know where we stand with all of this right now..... they won't be able to run the Cunningham until next week- it got there too late last week and they didn't do one this week.....I am so frustrated and feel like a Horrible MOM- I did not handle his meltdown at all. I feel guilty because his Dad picked him up for the weekend( we are divorced) and I am honestly relieved that I don't have to deal with it for a while but then I feel horrible at the same time and want to take care of my little boy. I am a mess.... Brandy

Another piece of the puzzle- WOW! My son has not sleep well- EVER- I slept with him for years just to get some sleep. IT was not until he was 6 1/2-7 that he slept though the night without waking me up more than he wakes me up-I think he has just figured out how to put him self back to sleep or he reads- something. When exacerbated- he wakes me up- a lot. Needless to say when my friends babies were sleeping though the night- I might have been a little jealous! Good to know it is common.....More shall be revealed! Brandy

prayers your way for an amazing healing for your son and family!! Then get your well deserved SLEEP!!!

Congratulations!! You should be very proud!!!

I am from Texas too! We live in Plano- I also plan on taking action this summer in treatment- I am basically self employed and at this point have only enrolled the kids in a 1/2 day program through the school for the first month- have not made plans after that- however I will be honest I desperately need my sanity and my "work" time- so I am figuring that out. we are waiting for our Cunningham results to decide what to do....If we go out of state we plan on seeing Dr L too. Since our Dr FORGOT to run all those tests that Dr K wanted ASO titer etc... ( we were one of the ones from Texas emailing him when we first found out- thought we sounded like PANDAS too) I am not sure we should run them since he is not in exacerbation- However I should probably get a baseline anyway- just so annoyed about it. Good Luck! Brandy

I would think there could be an allergy to something that was not tested?? Susan We prick tested 84 things and then went back with more intense 12 shots of most common allergens....I am curious- doing a little research online( LOVE the internet) that inflammation can cause elevated ige...

DS has an elevated ige so we did an allergy test- he has a very mild reaction to grass and dogs but the Dr said he did not think these mild reactions could cause the level of elevated ige that he has....He said a virus could cause an elevated ige- anyone know about this? Since he forgot to take the ASO titers- AUUUGHHH!! He says he wants to see something from the Cunningham test after the lack of reaction to the allergy tests- certain antibodies.....Any ideas on what that would be? He mentioned IVIG again-so we shall see! Brandy

I hate it too! I also hate my constant fear and paranoia about it now.....

Mati's Mom- how did you find out your ds strep was in his gut- I suspect that is where my son's is and I don't know how to prove it. Thanks Brandy

I got it- the immunologist who FORGOT to do 1/2 the blood work called it in- I asked for Omnicef because he did REALLY well on it last time. 500 gm a day and he is about 70 lbs.....He is still running about a 99 fever which may not sound like much but he NEVER RUNS fever and generally runs about 96.8-97. He had a great day at school and has been fine at home but I am not taking any chances.... I did get the pediatrician to write a note for the school saying that he suspected PANDAS-sent it off to the B***H principal. Who when I told her ds was home yesterday responded with hmmm of course....It makes me mad- it is my right as as parent to decide to hold my kid back and she is making me jump through hoops- I have resented her taking my attention off of getting my son well- and I don't like her and she is violating my civil rights. I decided to hold my ds back because he is so young and missed so much school. He has such anxiety over writing/spelling (last night the real meltdown was about absolutely refusing to spell his words before his quiz today) and 3rd grade is writing intensive- I want to take a year to figure this PANDAS thing out- if we have to leave town for IVIG- I don't want to worry about school. IF he is exacerbated i won't send him to school- no one wins and I just think we need time to beat thins thing and heal.... DS is academically gifted in most areas and the school is REALLY resisting it- But he is also one of the youngest in the class and in our school district almost everyone holds back summer birthdays- so kids are a year older than my ds. Keeping my fingers crossed we caught it fast enough! Brandy

Since the Dr's office FORGOT to run his titers when we were in there the first time....maybe this is a good time to check....we are not on antibiotic- Dr was waiting to see Cunninghams test- but oh yea- they did not send it for a month! I am too new to this and have not graduated to in your face with the Dr Mom yet.....So I am going to start with a phone call to immunologist first for a script. I have SOOOOOOOOOOOO much to do at work right now- I have to get an entire office ready to move by the 28th....how the Heck am I going to do that when I can't get a full day in the office? BRandy

Behavior is going down a bad spiral- pretty out of control yesterday-vacillated between wanting to be touched and not. Defiant, argumentative, loud, repetitive in his words, easily in tears, highly emotional over the littlest thing, meltdown over homework....let him sleep in- he said he body hurt all over this am....let him rest- he stayed with maid and I went to work...Came home early after noon- had a low grade fever- had a major meltdown over homework- refused to do his spelling, before I put him to bed early- yes I changed his alarm clock to trick him.....told me 27 times no about something- what escapes me at this point b/c I was keeping track of how many times he said it. Then he said that he could not go to sleep without reading the other books at least 10.....I think if I hear there is not point one more time I am going to scream today....Got him in an Epsom salt bath and calmed him down....Snuggled him and I think he is probably asleep now. Looks like I am antibiotic shopping tomorrow. I want to cry and scream right now Brandy

I think we are all living with the same man! My DH is pretty convinced (I think ) about Pandas but when I got the test back to remove dairy-he went nuts and so defensive wanted to know where I got my info etc... funny what they pick up on. I am the researcher, nurse and I work ( supposedly) etc....What I can say is since I am divorced and I am remarried- this is not my husbands biological child and with the exception of the removal of dairy he has been very supportive as long as I do all the research. I gave him Dr Bock's book to understand why it might be more than one issue that we have to deal with....he is actually reading it!! Now my kids Dad just does what I say for his health and does not argue which his a real blessing!! Brandy

So I got an immense amount of information today.... Lyme- negative- Good news! Metabolic panel- little small things mostly malabsorption and bacterial dysbiosis but just a little over normal ige 253 so we are doing allergy test next week We found out last week his Casein peptide was 5.46 so we cut out dairy Here is the big one- neurotransmitters- almost all of them are elevated and the Dopamine is really high ( he seems most conserned about he Dopamine, Seratonin and the Glutamate) Dopamine is off the chart high 514 Seratonin 244.2- elevated Epinephrine 13.7 elevated Norepinephrine 73.7 elevated Gylcine 1,501 elevated Taurine 508 optimal GABA 6.7 Elevated Glutamate 68.8 elevated PEA 52.3 optimal Histamine 22.2 Elevated Creatinine 54 ( looks to be inside reference range does to say elevated or optimal next to it) Any experience, or ideas about this? Is this PANDAS related or something else....my head hurts at this point. Brandy

I got your email this morning too-I will definitely be there! Brandy

Love this board!! Glad we all have a place to vent- It definitely helped to go about my day without seething anger all day however I might have lashed at my brother saying thanks for contributing to the torture of my child......since he is VERY passive I knew he would not say anything back...it might not have been helpful but I sure felt better! Brandy

BRAVO!!! I just feel like screaming right now after yesterday...My SIL is a F*****G B***H!!! My Mother's Day sucked! When i said something about my ds stomach pains and we found out he can't digest milk proteins- she said my sisters stomach hurt her whole life and she is fine- first off her sister is NOT fine and I am a better mother than her parents are- MY SON CAN"T DIGEST MILK proteins. She says he can probably have some milk without it being a problem- when exactly did she get her M.D.? I don't even want to get into what she said about me petitioning to hold my kids back in school next year- Pandas Ds is academically gifted but missed too much school this year and we don't know what our year is going to look like with PANDAS treatment etc... we want a less stresssful year for him. - my dd is just too young and needs a little more time to mature even though she is REALLY tall. I know in my heart just like you said that it is the right thing for my children. They are both summer birthday and most parents in the district start their kids ( especially boys ) late to give them advantage so they are both in class with kids a full year older than them. Then when talking about PANDAS- she said my kids are just so healthy because they were in day care since they were 6 weeks old- first that is not even true ( my Mom watched her oldest until school got out and she went to daycare at 6 months...) not to my kids were in daycare exposed to everything too! We explained PANDAS is an autoimmune issue and that we know that my ds already had an autoimmune marker- he has some vitiligo and she just said well- my kids are healthy and we don't have any of those problems. But went on talking about how seriously ill her nephew is etc...like PANDAS isn't a big deal that we found out- she has not called or asked about it once since the diagnosis. here is the kicker- Yesterday one week into my kids being dairy free- the rest of the family started eating ice cream in front of my kids. My DD is really a dairy addict and a Dr muscled tested her and said she can't tolerate it either- I have had my suspicions but we will run the peptide test on her too- for confirmation. She was hysterical- did any of the adults stop eating the ice cream in front of her- NO they just kept on while she was crying at the table. I ran to whole foods grabbed every milk alternative ice cream there is and let the kids have an ice cream tasting party- I can't believe how insensitive they are...I am still sad, upset angry and just plain old pissed off about it. Sorry to hijack your post but I was going to vent at some point today too. Brandy

WE have something similar with my son- He loves his games- I just don't let him play any computer/ video during the week AT ALL. It REALLY helps. No TV until school work is done. I ahve tried to limit TV to 30 minutes a day but I have to admit I have been really bad about that lately b/c I have needed the down time. He gets pretty worked up over TV too. I al really tempted to remove the TV from my house all together but I know that will never happen. Don't know if it is a PANDAS thing but I definitely have to give him warning before it is time to get off. Sine his behavior during exacerbation is horrible he has never gotten to play on the computer/ video games while exacerbated- ( we also have not had a new exacerbation since we became aware of PANDAS a month ago) video games and computer games are a privilege not an inalienable right for my house. Brandy

You can have them draw blood and freeze it until the kit gets there if you really want the most accurate result at hte height of an exacerbation! Thinking of you and your family! Prayers are with you! Brandy

I was watching Grey's Anatomy last night when the teaser for the 10:00 news said Strep can cause side effects that your pediatrician may not even know about...I KNEW it was gong to be about PANDAS...sure enough Deb C ( you are darling by the way) and her daughter were on TV talking about PANDAS!!! I taped it and plan on using it when I talk to the school on Monday ( have a big conference regarding my ds)!! We were on the NEWS in Dallas!! Well done Deb C! Brandy

I don't have an answer for you ( because I am so new and still fumbling through everything ) but I am waiting to test my ds on the 12th because EVERY MARCH I know know we have had an exacerbation- now that I know we have PANDAS....I told my mom today- he is psychotically allergic to something environmental in March that runs through April. He had strep during those times this year but I have to think there is an environmental connection too. My family all agrees that we really won't know how my ds is doing with PANDAS until next March- that will be the true test! I will be definitely following this post to see what people suggest! Brandy

Mine got sent last week- so I am waiting too!! It will be our first time and I have NO idea what to expect! Brandy

Welcome-(I am pretty new here too and I have learned so much by this amazing group!!) I have not gone through the other posts but I am sure this has been said by others....You have found the right place. I am not an expert but it does sound like PANDAS to me. Find an expert or a PANDAS friendly Ped ASAP- we got lucky and it was my PED that diagnosed to start. My son's strep always gets diagnosed after a stomach ache never a sore throat! I hope you find a helpful doctor!! Welcome again! Brandy