beeskneesmommy

WORRIED DAD: So well written! Our DS was diagnosed at age 2.5, and we took him from Ped to Ped (10 in all), trying to get someone to treat the PANDAS, not just throw a 10 day run of ABX at the Strep+. We even took him to a Neuropsychiatrist at DUKE Children's Hosp. in NC who examined him and said: "It is very suggestive of PANDAS, particularly with the symptoms subsiding when ABX are administered". Then he sent us away with nothing and told us to come back in 6 months. It seemed to me that the docs we saw were either poorly educated, arrogant, or just plain lazy. I worked in the MH field for many years and it was most certainly my responsibility to refer my patients to specialists if I did not have the education/skills to treat their particular MH issues. And I did - even though it may have taken me some digging to find a referral source. IT WAS MY JOB! Also, I cared enough about my patients to make sure that they had appropriate follow-up if I was unable to provide what they needed! This should be the norm for all. I find it disgusting that many doctors will not take the responsibility to at least refer their patients and to educate themselves.

Kim - YAY!!! Excellent news and I wish you and your family lots of good stuff for the future!

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Thanks everyone. DS actually does pretty well a lot of the time when he is not having PANDAS symptoms. I have to remember that he is a boy and he is close to 5. That, in itself, is a big cause for pushing the limits and testing the boundaries. I think I probably wouldn't feel so guilty about it if he did not have PANDAS! I never want to waste a second of the 'well' times by losing my patience, because as we all know, 'well' can turn to sick very fast. I appreciate your kind words and support!

JAG, Ha-ha! I am the last of the baby boomers. My son was born when I was 42! Just goes to show that 1st time parents are 1st time parents - the age of the mom doesn't mean we make any less mistakes!! Thanks for suffering thru my "vent". It's been a long road and my husband works crazy, long hours so I am essentially alone in handling PANDAS - drive with DS to the specialists out of state alone and frankly, make most of the decisions without help. I guess I get overwhelmed sometimes! Anyway, after my post, I took DS to the pool to meet up with a bunch of moms and kids and we had a wonderful, relaxing day. As my DS likes to say: we "put it in the stone crusher" (loves anything related to construction) and we are "having a fresh start".

I am so sleep deprived and angry with myself. I just yelled at my son and I have left him on the step for a time out so I can cool off! He has been doing really well on the new abx protocol - looking great, but cheeky, rude, entitled and disrespectful...often! I think he has been pampered so much for so long due to being sick, that now that he is doing well, these behaviors are part o his norm! We don't spank, but discipline aside from me blowing up seems to be worthless. I am trying to get him out the door to go swimming and when I came down the stairs, he was throwing his shoes up at me. When I asked him why, he said that he wanted to make me trip and fall down the stairs. He says weird and icky things like this often, when he is having a PANDAS flare-up, but I am not seeing PANDAS right now. I guess I am expecting too much from him? His comments made me see red! I am not nearly as good of a mother as I would like to be....

My DS, turning 5 in Sept., had many, many Strep+ tests that coincided with PANDAS flare-ups for a year and a half prior to getting a T & A last Aug., 2010. He was also atypical for Strep symptoms, rather, I would bring him in for a Strep test when the PANDAS symptoms emerged. D/t the medical necessity concerning heart, etc., the ped decided we should remove them. here's where it got tricky. He was Strep+ prior to the T & A and although I asked if we should do some abx to kill off the Strep first, (ped x 2 and ENT x 1) they did not seem concerned. I followed their lead and that was a big mistake! Make sure that your kiddo has a sterilizing round (or 2) of abx before and after the surgery! My son had a hugely acute episode post surgery (it was his first) and it has been a year's journey for recovery. He is getting better in the big pic, but the first few months were really frightening. Overall, I think that the lack of active Strep has been a positive thing, but we could have done this in a much safer way, possibly avoiding the large, crisis oriented symptoms. The PANDAS did not go away after the T & A, rather, the titers stayed extremely elevated for 10 months. I am glad that they are removed because although he is sensitive to Strep around him, he had pockets in his tonsils that were harbouring it. Thus, he really didn't have recurring Strep, but it just plain lived in there, activating toward the end, every 2 weeks. I would not say that the flare-ups have reduced, in fact, they became much more frequent at first. So, I think that in our case, the T & A caused further probs., but likely because it was done while DS was active with Strep. Our PANDAS doc says that there are some kids who do respond better and slowly pull out of PANDAS after T & A (these are kids with straight Strep:PANDAS and with no other diagnosis, like DS). However, she cautions that this is not the case with all kids with PANDAS (wish it were that simple)!! Although it has been 2 steps forward and 1 step back, DS is recovering and getting better with each passing month.

Tam - thank you, but no blue here - we are dye and preservative free. S&S - How interesting! This is good, right? Darn, I skipped his probiotic today. SO hard to time it between food intake and abx 3 x day with a little guy!

Dr. Latimer in Bethesda.

OK, sorry for this one but do probiotics cause greeish poop? My son does not let any veggies (especially not green) cross his lips. Why is his poop turning green when there have been no changes in diet?? Should I be alarmed?

OK, but not quite sure what you are saying. I should keep on with the probiotics and not drop them right away? I dropped them after a few days last time because of these symptoms, but I wasn't sure if the probiotics were the culprit then (still not, as the waters are always muddy with PANDAS and he is on a new-for the last 3 weeks-med protocol with very aggressive abx for a little guy). Can't give him diflucan, I think, he is just 4....

My son was doing pretty well but I started probiotics yesterday and there has been a resurgence of hyperactivity that I have not seen for quite a while. He started having urinary frequency again and I see him bending down to touch the floor ritualistically. He was calm and fine all afternoon and then about 1 hour after the probiotics, the high activity started. I started yesterday on "Yum-Yum dolphilus" which has L. acidophilus, L. plantarum, B. bifidum and B. lactis. Any thoughts? Thanks!!

OK then, call me obsessed also. There is NOTHING more important to me than getting my little boy thru this and PANDAS free. Yes, I lose lots of sleep when he has a flare-up and I have had many broken hearts over the last year. It has become an all-encompassing part of my life to help my son because I am his mother and it is my job. There is no way that we would have gotten this far if I had not become strategically dedicated to finding answers, finding help and wiping this illness out. Certainly no medical professionals were going to help me here! And you know what? We fall back often, but in the overall picture, starting from his acute episode last Fall, we are winning. Big. Take care of yourself, try to rest and find personal time and do what you have to do to fight the good fight. I will continue to maintain that my son will be fully recovered, sooner, rather than later. I wish this for all of our beautiful kids.

Dr. James Biddle, Asheville NC and Dr. Cormac O'Donovan, Winston Salem NC Thanks!

Philamom, thanks! I just went to Whole Foods and bought something called "Yum Yum" that is refridgerated chewables. My son is almost 5 and cannot take pills yet. He is picky galore about food so I know he would buck the granules. He is currently on a major regimen of abx: Augmentin AM, Azith mid day and Augmentin PM. I am going to slip the probiotic into him in the afternoon, 2 hours after the Azith and prior to dinner and then Augmentin. Boy oh boy - I think I need one of those watches with an alarm at this point! Kath

My son has awful allergies (to what)? His blood and scratch allergy tests contradict each other and he didn't react at all for the histamine control on the scratch test. This left the allergist scratching his head! He has awful reactions to typical insect bites - major unusual swelling and knots (always has) and he cannot take ANTHING for it. All OTC allergy meds including Benedryl push him to a PANDAS flare-up. I would love to have my questions answered. We are seeing Dr. B but got so busy with other stuff on our first meeting that we barely touched on this. I have a phone consult with him on the 22nd and I will try to address this if there is enough time and it fits the already intense agenda. -Kath

Hello: Has anyone heard of or had treatemtn with Dr. James Biddle in Asheville, NC or Dr. Cormac O'Donovan in Winston-Salem NC? Thanks, Kath

Thank you - will do tomorrow. Any problem causing decreased absorption of Azith or Augmentin? I had to make sure to curb any calcium and vites into a certain schedule whne DS was on Cephdinir d/t this concern. I know that there are some things in vites that decrease absorption of Azith also, so I give them at night and Azith mid day...

Oh thank you!! This cracked me up and made me laugh out loud! How wonderful to reduce the tension of the night after I get my little guy into bed!!

I would like to do Culturelle and/or Floraster. My son is almost 5 and 40 lbs. Do these have kids dosages and if not, can you advise me? Thanks!

Kim - it is horrible, what happened to your son and your family. I simply do not understand the arrogance of a doc who REFUSES to draw blood or dig deeper, when it's hardly even an extra effort to do so. The absolute arrogance of the pediatric community over here (including a specialist at Duke Children's (Neuropsychiatrist) has blown my mind! Thank God for the docs who have the ego strength to stick their necks out and work toward answers and cure! Many, many positive wishes to you and your kiddo!

Well, heck yeah and great point! I would theorize that if kids weren't treated at all, those who might "outgrow" it would have a much decreased chance of doing so. Interesting that you bring me full circle. I have been very angry at the medical community here because they really threw my little boy to the wolves. He was 1st diagnosed at age 2.5 because of eye tics along with Strep, that subsided when given abx (the 1st of many such symptoms that increased in severity throughout the next half of his life). I now remember that the diagnosing doc (a mother herself) looked at me quizically when I expressed a lot of worry over these neurological symptoms and said "lots of kids have tics - they are very common and most kids outgrow them". I think she was simplifying PANDAS in that it was just a few eye tics in relation to Strep - not really getting the whole autoimmune picture. Boy, did the "little" eye tics ever progress and what a mess we find ourselves in. I bet she isn't losing any sleep like I am over this! In addition, my great hope is that my son will "outgrow" this, meaning, his often debilitating symptoms will decrease to the point of being highly functional...perhaps disappear if we are lucky. If I thought it was sure fire or simple I would not be so aggressively treating him. I think the treatment along with growth gives him a better chance of making it. I do not for a minute, take it for granted that this will easily subside and there are many nights that i lie awake worrying about his future - wondering if he will have severe problem into adulthood and who will be there for him when I am not. Now I see how I may have been misunderstood and appeared to have simplified my thought process. This is a frightening, severe and dangerous disorder that has me feeling truly frantic, many days out of each month. So sorry if my words belied the true impact that I feel this dosorder has - I just cannot bear to entertain the idea that we won't beat this.

JAG I use the term loosely to refer to other diagnosis that may be present. It's hard to see if one illness has subsided when it is coupled with another - muddies the waters, so to speak. TPOTTER I want to be sure that it is understood that I did not take the stance that ALL kids "outgrow" PANDAS, but I have spoken with several big gun specialists who have reported that "some" kids outgrow PANDAS, particularly if it is their only diagnosis and if the PANDAS is mild to middle of the road, rather than severe. The way that you are using the term "outgrow" takes it to a higher level than what I have been addressing. I speak of it as being symptom free, whereas you seem to be addressing genetic predisposition. I DO think there is genetic predisposition as evidenced by the plethora of kids who have a family history of Strep, Scarlet Fever, Rheumatic Fever, etc., including my kiddo.

Pandas16: I understand your position and that it is personal. However, I would not call myself "naive". Rather, pretty highly educated and intelligent. "Outgrow" may be a poor word to utilize, but as kids grow up into adults, the brain changes immensely, causing different responses than in pre-adolescence. The brain does not complete its growth until about age 25-26. You may not feel that your experience demonstrates this occurrence (and it does occur, in many, but not all kids), but those of us with little children are working hard to get them to this point in their lives. There is also a difference in prognosis between PANDAS diagnosis only, and kids with comorbidity.

Hi: I keep reading about probiotics. Sometimes I read that they are great and other times I read that they worsen symptoms. Can you all help me with this? My son has been on aggressive abx treatement for 1 solid year and prior to that, multiple 10 day runs to zap Strep prior to his tonsillectomy. I have used these refrigerated chewables from Whole Foods called "Yum Yum" before, but only when my son had diarrhea. No real daily protocol. My son is 40 lbs and about to turn 5. Any suggestions? Thanks!