eljomom

Hi Wilma- I have been reading your posts and following along, sending prayers your way. I am so, so sorry for your daughter and YOU...the mommy who feels the pain on a level that noone else does.....probably not even your daughter. That being said, I wanted to just say that while steroids may be a wonder drug for some pandas kids, they are known to have side effects that include behavioral issues, sleep issues, even psychosis. I know this just from having 4 kids, friends who have kids, are RN's, friends who are doctors, etc.....just basically personal experience. You give a kid steroids, and you could easily see tantrums (in younger kids), anger, trouble sleeping, moodiness, and even psychosis (this part was told to me by the neurologist at Washington Children's Hospital we saw....who does believe pandas exists.....he said he'd give his kid IVIG before steroids). From all that I've read here, steroids on occasion (rarely) have an effect that is very positive AND SUSTAINS. I know one doc uses it as "diagnostic" to show if IVIG will likely work. I personally think this COULD have some merit......IF YOUR KID IS NOT ONE WHO GETS THE "NORMAL" BAD SIDE EFFECTS OF STEROIDS....WHICH.....HERE WE GO........ARE VERY SIMILAR TO SOME PANDAS SYMPTOMS!!!!!! Maybe the rage, sleep, etc. would all be a bit better, but they are now outweighed by the rage, sleep, etc. issues from the steroids. Since you can see some improvement, but your daughter is still struggling with rage, sleep issues, etc.....I would just have to think that some of that is just the steroids getting in the way of some of the positives you might be truly seeing from the steroids. Not sure if that made any sense??? I also don't think taking your dd off the Bactrim or other antibiotics for "sleep issues" is logical. She is on steroids and antibiotics. Steroids are KNOWN to cause sleep issues. Antibiotics, not so much. It will be interesting to see how she does as you taper off the steroids and potentially LOSE some of the steroid-induced side effects. Just all personal thoughts and opinions here......

DD7's CD57 was from Igenex. And it was really HIGH! Is there something not-so-reliable about Igenex's CD 57? Also, what is Specialty Labs? Do you need dr.'s order like Igenex?

Priscilla---what do you mean "positive for chronic infection"? What test is that? Thanks!

I don't know the answer to this, but wondering if it is standard procedure to send things to pathology, etc.? Really would love to know if/what was in dd's adenoids 2 years ago. Still has her tonsils.

Are all of you who tested positive (esp. years later) testing positive only on Igenex? Susan, what lab tested your kids?

Posted this on Lyme forum, but thought I'd post here too. WAnting to bury my head in the sand with the realization that out of my 4 kids, all have some ocd type behaviors now!!!!!!!!!! My ds12, who is constitutionally delayed (now in the 5th percentile for height, last year bone age was 2 years behind) bites his cheek, nails, and I saw him touching things with both hands recently. He said when he does something with one side, he has to do it with the other. My other three girls said they do the same thing. DD 14 bites her cheek, evens up when scratching, etc. DS 12, DD9 and DD7 all still wet the bed. I did till I was older too, but not as frequent. You all know about dd7..... But dd9 has been a concern for a long time (you will read below why), and I'm just now wondering if there is a pandas link. Here's what I posted on Lyme forum: "I am usually on the pandas forum regarding my dd7. She had a couple positive bands on Igenex, but was considered negative. One time I spoke with Dr. Harris (owner of Igenex) and he said he would not do further testing. A few months ago spoke with him again, and he suggested another western blot, co-infections, etc. Weird. First time I spoke to him he recommended a specific doc here in VA, saying "Dr. ______ knows his Lyme." Next conversation, I bring that docs name up and he says "not really sure he knows his Lyme." Anyhoooo.....I am just disillusioned about the whole Lyme thing. Needless to say, another one of my kids (dd9) has had headaches for over 3 years. Her ped. dismisses it as migraines. This past well-check (where he said she has had headache complaints at her 6, 7, 8, & now 9 year well-checks, so it's likely not something really bad with her brain), he suggested trying some caffeine. Ugh. Anyhow, she also sometimes gets random chest pain, and is more prone to tummy aches. I always thought it was anxiety. She used to get separation anxiety pretty bad, and has an occasional transient tic (throat clearing), but also has some ocd-type stuff going on.....evening up when touching stuff. So, my husband, who is skeptic of pandas, ocd, lyme, etc. actually said the other day "Maybe we should test her for Lyme." So my question is, having had this for over 3 years, would anything likely show up on a western blot???" Thanks!

I am usually on the pandas forum regarding my dd7. She had a couple positive bands on Igenex, but was considered negative. One time I spoke with Dr. Harris (owner of Igenex) and he said he would not do further testing. A few months ago spoke with him again, and he suggested another western blot, co-infections, etc. Weird. First time I spoke to him he recommended a specific doc here in VA, saying "Dr. ______ knows his Lyme." Next conversation, I bring that docs name up and he says "not really sure he knows his Lyme." Anyhoooo.....I am just disillusioned about the whole Lyme thing. Needless to say, another one of my kids (dd9) has had headaches for over 3 years. Her ped. dismisses it as migraines. This past well-check (where he said she has had headache complaints at her 6, 7, 8, & now 9 year well-checks, so it's likely not something really bad with her brain), he suggested trying some caffeine. Ugh. Anyhow, she also sometimes gets random chest pain, and is more prone to tummy aches. I always thought it was anxiety. She used to get separation anxiety pretty bad, and has an occasional transient tic (throat clearing), but also has some ocd-type stuff going on.....evening up when touching stuff. So, my husband, who is skeptic of pandas, ocd, lyme, etc. actually said the other day "Maybe we should test her for Lyme." So my question is, having had this for over 3 years, would anything likely show up on a western blot??? Thanks!

Hope I'm not beating a dead horse here, but why are Igenex tests more sensitive? Does that possibly make them more sensitive in the sense that they are picking up cross-reactive things? Like some viruses that are known to also trigger positive bands on Lyme tests?

Thanks for all the great advice! Well, as would have it with the crazy mentality of a pandas kid...she FREAKED OUT about the cream. I mean freaked out, like I was asking her to pour some battery acid on her arms before the blood draw. I tried to tell her it was just like lotion. Nope. That it would make it not hurt. Nope...said she'd rather have it hurt. Then I said "hard way or easy way"---she knows I will wrestle her down if need be, so she let me put it on, crying and screaming the whole time. After I got it on, the plastic felt bad, the unsticky tape felt bad, it hurt, etc. I then saw the post about tops of socks, and that was great, although when we walked in, she said everyone was going to stare at her. I do get her a little prize if she cooperates, and I told her I don't mind crying if something hurts, but that carrying on when something doesn't hurt (like the cream) will NOT mean she gets a prize. So we go in, get called back, sits on my lap in the chair. Doesn't like the rubber thing they tie around the arm (neither do I for that matter!). She does not flinch when they put the needle in. Even watched the blood fill the vials. I kept saying how cool it was , awesome, etc. Done. Off she went on her merry way to get the stuffed weiner dog she had had her eyes on for a while

Thank you! Just remembered I think the ped said to put saran/plastic wrap over it (which of course I don't have....)....nor do I have a big bandaid. HOw about a plastic baggie over it? Apply a thick gob of Emla cream, don't rub it in. Cover it with a really large band-aid and try not to smush the cream out the sides. You could do both arms to be on the safe side. 1 hour is recommended, but 30 minutes works pretty well too. Try to cover at least 2 inches, and cover the vein if you can see it.

Nothing like waiting till the last minute.....I've had orders for some bloodwork for 3 months. Have sat on it because in my gut I know it's another dead end (just like being sent to Infectious Disease....but I digress...). Anyhow, going today to get it done because we have appt. next week with ordering doctor. A pediatrician I saw a few weeks ago for a possible ped. change gave me an rx for a numbing cream, but I can't remember how to to apply it. Someone said 30 minutes before, but I read 1 hour before. Also, how much? Both arms in case one doesn't work? DD is 7 and about 48 pounds. Apt. for blood draw is at 2. Thanks!

I would contact your pandas specialist....if they are supposedly your child's "treating doctor." Let them know what is going on, and ask that they contact the psychiatrist who is suggesting the hospitalization IMMEDIATELY, and that they be part of directing your daughter's course....BOTH the psych. and pandas specialist should be working together. You are currently being ACTIVELY TREATED for pandas, correct? With steroids, antibiotics, by Dr. B? Then he should be part of this treatment plan. If he can't work with another doctor on this, well, I just have my reservations about that ... a whole different animal.

Thank you!! Yes - according to Dr. Troufexis, one of the immune markers they looked at was specific to skin infections - but specifically strep. I don't remember which one it is though...I'll email her and ask.

Lynn777--Just want to say I am so there with you! Only thing with us is that I think we "missed strep" for over 2 years, therefore untreated, so the abx don't eliminate tics. She still has some tics, hair rubbing, but ocd is milder as is separation anxiety and writing is better. I have the exact fears though...will this get worse if I do nothing, will it get worse if I do more, what's enough, what's too little, what's too much? I am interested in what test you had to find out about intolerance to Gluten/Dairy? I have not gone this route, but am considering it. Just still not sure what test to do. Dedee....what supps are you using for your son? Thanks!

ariel95---did Dr. Murphy's office run some sort of test to determine this? "Dr. Muprhy's office even noted how strong he is AGAINST strep infections of the skin -" I would be intersted in this too, as 3 months of impetigo (supposed staph) was going on when my daughter tanked last summer.

When we saw the I.D. doc at Georgetown (I know, not a big pandas person), she said Clindamycin is what is needed for carrier or hard to treat strep. Also, some people just have higher titers....that is their norm. She also ordered a protocol (which we haven't done) for the whole family...in case there was strep carriage, but also said that if someone is a carrier, they are just going to carry it again when they are exposed to strep again, and that strep is everywhere. Anyhow, the protocol was for entire family to take daily bleach baths (or for adults, hibiclens showers) for a week. Also for that week, twice daily gargle with a prescription gargle. Also twice daily swabbing nostrils with mupirocin ointment. Then the next week, cut down. Pretty sure it was something like that....i have it written down somewhere.

I saw a post in my e-mail about Dr. T finding the answer......and now it's gone from the forum. I would really like to hear more about his findings, as well as comments from others. I didn't find anything offensive in the original post, so can't figure out why it would be deleted, other than the claim that Dr. T has "found THE answer." I would appreciate being able to read more on this.

I can see the excitement of realizing that 80-90% of PANDAS kids are p41+. However, from what I have read (and I am NOT an expert, so I say this with nothing but devil's advocacy...), it might be that 80-90% of the general population are p41+.

I just gave her a Culturelle.....skipped the abx tonight. someone on another forum said maybe it's constipation.....praying that's all it is....if only it could be so simple

DD7 has been on 100 mg. zithromax for 4 months, and 1 month augmentin before that. was giving probiotics every day till about a month ago....had read that some people were sensitive to them,etc...anyhow, tonight she said she had to poop (sorry...this will be graphic), but then got distracted, being very silly, and then said "I just pooped in my pants"--laughing of course. I looked and there were to tiny "rabbit drops" and a bunch of slimy blood-streaked mucous. I made her sit, and she just pooped a tiny bit more mucous. My oldest dd had c.difficile when she was 2 (interestingly NOT after taking abx), and it was horrible. 20+ bloody, mucousy poops a day, and horrible horrible stomach pain. I am very scared right now....seeing the streaks of blood. What now? I was afraid to give her her zith. tonight! I can't even imagine going down another medication rabbit trail, crapshooting, etc......sorry

I just looked in my two younger girls throats after my dd9 had some horrid breath. Both of them have what looks like just a little bit of white in some of the "creases" of the tonsils. Not "coating" in any way....just a little tiny bit of white in a couple of places. Any idea what this is? Almost like it could be a tiny bit of yeast?

That pretty much sums up my question Many tics, some ocd, but functioning and pretty happy most of the time (other than getting dressed, and a few of the ocd things). she's not 100% by any means, so will steroid get her there? or is it just temporary, and mainly used to get a severe exacerbation under control? Thanks! P.S. I would ditto this with the same question regarding IVIG!

SF Mom....can you elaborate on Band 58 being a viral indicator? WE were + Band 58 and 66, as well as 41 and 30,and IND Band 83-93, and 34. Does this mean your child had ACTIVE viral infections during Lyme testing? I suspect the Azithro alone wasn't enough and you had a regression or new exposure.... You then added Omnicef back in and she herx'd. Unfortunately, if the Lyme results weren't positive back in Sept when she was on combo'd antibiotics for some time I worry you'd only end up with the same result if tested for antibodies again. I'd try alternative testing with her of Dot Blot or Urine PCR. I don't know anything about this Dr. Hecht. Hopefully, someone in your area can make a recommendation that might get you in sooner than the Jones appointment. With that said, Azithro/Omnicef combo is good for treating Bartonella/Lyme and I'd not change that until you get her to someone qualified to evaluate her properly for Lyme/co-infections. She also needs a good viral panel done because of her response to band 58. There could be so much more at play than just strep. With my kids we have HHV6 and Coxsackies both common viruses that present issues with chronic Lyme. You would not be alone in your experience with hdIVIG. I have heard this happening with others that truly have a chronic infection and sometimes it is not until the third or fourth treatment. Again, its truly been a case by case basis.... I can not explain why its happening but our LLMD felt potential cytokine storm. Many of us are finding the further we are out from IVIG treatments the better our kids are doing. It can take some time for those TICs to resolve but they do eventually fade with proper treatment. Regardless of test results I think your daughter would be well served by an extended trail of combo'd antibiotics. BUT, it can take 6 to 9 months to see improvement and sometimes there needs to be antibiotic rotations involved during that time frame. Also are you doing anything for detox? We can all make some recommendations to help with symptoms if needed. Wishing you all the best. Her reaction to the recent rotations of antibiotics has to give you confidence this might be Lyme. -Wendy

Hi TAmmy- Saw your post on the pandas forum, but thought i'd reply here. I may get some rotten tomatoes thrown at me, but I would not worry about the tic. If it was crawling around still, then it likely hadn't embedded, and once it does, it usually does not just "drop off" until it is "full." That being said, I don't know if it could have just "bitten" your daughter and moved on. Do tics do that? I thought they needed to be embedded for a bit to transmit diseases. I would clean it off, maybe some neosporin on it...sounds kind of blase, but that's more than I would do, and my kids get tics (deer tics, and yours sounds like a dog tick) quite often. Probably going to regret not taking Lyme further, and might still pursue more testing once we have funds again

She had us do the Igenex after the regular (LabCorp) western blot was only 41+. Igenex was "negative" so it's a done deal to her, although some people here say the IND's on the IGenex might mean positive. We saw Barbey-Morel too, and she follows CDC guidelines only. JUST fyi...