JAG10

I saw this statement in another post- I think somebody had said their doc told them this. Does this hold any water? I mean, is this really what IVIG does, and how do they know this? I thought that they didn't know how/why IVIG seems to help. I also think this is true unless it is false by the omission of "until there is another immune challenge that again triggers the production of said errant antibodies." IMO, 'completely normal immune function' is misleading. If that were true, we'd all be one and done.

Here is a post from 7 years ago with BioChat Q&A. Demio is on this thread. http://www.latitudes.org/forums/index.php?showtopic=1341&hl=o&st=60

I asked for this. Was told no problem. Never got anything. Called the lab (was it Quest? Can't remember) and was told that they had my results but needed permission from the doctor, so I should call doc office and have them give permission and then no problem, I can get labs from them. Called Dr. B's office and was given runaround. Then went to 2nd appt and PA told me no problem again - I asked her to note it in my file that it was okay for me to have my lab results faxed, still can't get them sent to me. Really making me mad. The lab is not Quest, but that is our lab in PA. Needing the docs permission, must be a CT law because we do not need that in PA. There has got to be a standard form of release that should be signed at each draw and let the lab take care of it. All the business they are getting, it should be no problem. I think we should just collectively express the need. Then if you have questions, make a consult.

I think as parents, we should ask Dr B to establish a policy where we are offered the release form for the lab to automatically send us results and thus take the burden off the office. We all want them, we've all got "the binder(s)" That would be best for everyone, no?

Has anyone had success having Dr B's in-house lab send them results directly? I always request them from Quest, but these are drawn at the time the IV is being inserted by the nurses in his office and there is no opportunity to fill out papers for that request. Also, each state's laws are different regarding lab results. Some require you to get a copy directly from the ordering physician. I'm not sure about the law in CT.... Does anyone know? If so, that's a great idea DCmom. I'll call tomorrow and see if I can find out. I owe them a co-pay I haven't paid out of annoyance for not knowing the dang results yet!

My girls are also patients and I don't want to bash either. For many, there would be no care for their children without Dr. B, they simply cannot afford to work with a specialist who cannot obtain insurance coverage. Perhaps that is a large part of why they are overwhelmed. I was looking at another doctor's website and came across this policy. I really think Dr. B should consider it. What about email correspondence? You may find that email is the best way to contact us. Every few months you will receive an invoice for the doctor’s time spent on email, at the doctor’s discretion. If these are brief or infrequent emails, there will be no charge. Email contact with the physicians is a non-covered service under insurance company policy. These fees will be directly billed to the patient and the fees are recognized by the patient as their responsibility. You should not submit invoices for email correspondence to your insurance provider. If you are brief and infrequent, emails are a courtesy. If you are "verbose", you will pay. If you have a hard time judging your own brevity, you will get billed once and learn. Back to your questions/concerns. As far as the dentist goes, my girls are on treatment dose abx two days before and two days after all dental work. I'm not sure what the abnormal lab result is, but if you post or PM me, I might be able to shed some light. I'm guessing the PA left a message about the med/dose question? Yeah, that's why I prefer email. Everyone can get to it when they are ready and have it in writing. I can empathize with some of your concerns. As a "new" patient, you shouldn't have to deal with that. Some of us have been seeing him for awhile and need to politely pipe up about how the quality of care is changing and give the parents' perspective of reasonable suggestions. I personally would automatically like a copy of all lab results sent to me, every single draw. If that means for that option, I need to pay a nominal correspondence fee, sobeit. But it is not fair or reasonable to tell patients to make a $125 appt to get lab results.

I guess that depends. We don't see Dr. K anymore, we have a local doc and a pandas doc within driving distance now. If I have access to the abx they need I usually do it myself after all this time. If it doesn't work and they need an abx change, I take them to the local doc usually. I think each doc is different, Dr K liked parents to run these issues by him by email I suspect because of proximity for follow-up care and as a way for him to keep data. If your child is reacting to a virus or allergies, then you have to try the ibuprofen route first and possibly prednisone. You have to do what you are comfortable doing. Before we had the correct pandas/pans dx, we tried tons of psych meds with a psychiatrist. She would tell us how we needed to adjust doses, ect. So I think that experience, years on end, got us used to being the "physician's assistant."

When we first consulted with Dr B, Nov 2010, he ran certain bloodwork on the whole family including ASO and anti-DNAse B. Neither dh nor I had been sick in recent memory. Both of us had elevated ASO, but not DNAse B. Both girls had elevated ASO and higher DNAse B and acted like it. I think they brought strep in the house and we reacted to it on a cellular level, but never got ill. I don't know where I got this impression, but I've had it for 2 years now....that elevated anti-DNAse B is more indicative of pandas/pans than elevated ASO. Obviously some have no titer rise and that doesn't exclude pandas, but my girls' symptoms have always correlated to the height of the DNAse B titer. In fact, dd12 recently had a strep infection (asymptomatic) where the ASO was higher than the DNAse B and her behavioral symptoms were so mild I wasn't even sure it was anything until we had the blood tests, so that's interesting to me. I'd bet you if it had been the other way around, I would have had no doubt what was going on!!!!

The nurses have a policy to return emails within 24-48 business hours. I used to be able to email a question and as long as I kept it concise, I got an answer. It seems lately the nurses are prone to directing any and all substantial questions to "make a phone consult appt with the PA." They did this to me once when I had just met with Dr. B and he had left forgetting to write down to have the PA write a script for a steroid taper. The PA was there the next day, but the nurses said I had to make an appt. I made the appt, aggravated, but the PA said the nurse should have gotten the script from them while I was there and she wasn't going to charge me for a 2 minute phone call. So, you will get an email response, but don't be surprised if it is "make an appt." And the policies are always changing. We are all grateful. But that doesn't mean we shouldn't express ourselves when these evolving policies rub us the wrong way.

What? Wait....you're not having the initial consult with the PA are you? IMO, they are much more reserved and end up running everything by him anyway. It is a little annoying to want brief lab results like 1-2, not 20 and the nurses tell you to make an appt with the PA (that's their policy.) I'm sorry, but I'm not paying $125 for "15 minutes" with a PA. I plan on discussing this with him next visit. He's doing labs in-house, I don't get a sent copy, I don't get phoned results and if I want to know what they are I need to make an appt with a PA at the MD price? Oh, and I got a bill for $48 difference between what my insurance paid and what their lab charged. Doctors should be well paid, but that a la carte feeling annoys me. I'm paying for the labs, I want a copy sent to me, then I'll make an appt if I have questions. grrrr It's been awhile, I'm sure they are learning as they go just like everyone else.

I don't know if someone else has already made this suggestion, but video of these episodes helps. Dr. B will take your word always, but having documented tape of these episodes is never a bad idea; video of completely normal and completely nuts is always great for putting a picture to the words you use to describe what is going on. Good luck today. Bribe? Have your own temper tantrum? IDK, just get him there. You'll get there.

I love the Voldemort idea!!! My girls would love that too. The way Dr. K explained it to me 2 years ago was like this....you are not looking for typical "sick" symptoms; you are looking for behaviors. He cautioned me not to overreact because they are children, but if you see behaviors declining 3 days, an increase or change in abx is warranted. My younger dd8 is milder and a charmer, gets away with a lot. I was, in some ways, jealous of those with ticcers because it is so obvious! But with my younger girl, my antennae goes up when 1) I'm repeating myself (sometimes yelling) a lot with her, 2) ADHD type behaviors increase and 3) Urinary frequency/accidents/holding it too long. Thank goodness for the urinary frequency because that is usually the symptom that convinces me I'm not imagining it or it's not me who is less patient. Her teacher has a good eye and emails me when she sees a decline too. Not to jinx you, but I have had a similar experience where a few days on the correct abx "rights our ship." Dd8 used to do the lip-licking thing too, which was another "tell", but I haven't seen that in awhile. It is a shift in thinking when you deal with asymptomatic kids; for you and whatever doc you are working with. My girls never swab/culture positive either. Rising titers are our "medical" confirmation, but it's not so easy to keep getting blood drawn (yet another obstacle.)

Yes, being asymptomatic is very frustrating! You rely heavy on observation and blood tests. Interestingly, my older dd did not show "sick" symptoms of Myco p until after being switched to the correct abx.

HelenJenn- I was also wondering if you switched to Ester C, perhaps you wouldn't need to give so much as it would be better absorbed?

We use chlorine. I remember when I first joined this board some people commenting that their children reacted to swimming pool chemicals and worrying about it. But I can honestly say I've never noticed any pandas reaction at all.

Sure, no problem. My girls are tall like me. My dd8 is 79lbs and took 250mg Biaxin twice daily. Dd12 is 142lbs, 5'8" and took 500mg twice daily. Even though they took the Biaxin XL, I still gave it twice a day so it wasn't too hard on the stomach. Dr. T can get you started on abx or the local doc. Dr. T can also make sure you have all the pertinent bloodwork done without hassle. Not sure of the law in Minnesota, but always ask the lab to send copies of results to you if it's allowed and start a binder. Was there anyone listed on the doctor list near you?

Here is a topic she posted http://www.latitudes.org/forums/index.php?showtopic=16415 Click on P. Mom and her profile will come up. Then click on Send a message on the left side. Sorry, there is a minimum character restriction on searches. This should work though.

Linda- try PMing PMom; she lives out that way. I'm outside Phila. -way too far. Sounds like your ped got cold feet, sorry! Do you know how to PM and search PMom under members?

That's why we are all here. Does your child have any symptoms? Coughing for a long time that won't go away? My one dd8 had no physical symptoms at all, just elevated IgM and behavioral decline. My dd12 got very sick with typical symptoms after starting the Biaxin. Do you have a doc you can call for a script?

Over 40kg (88lbs) is adult dosage which would be 875mg of Augmentin every 12 hours. The dosage sounds a little low.

Elevated IgM typically means active infection. Your kid's is 2.12 IgM? I would think yes, that is a current, active infection and Myco p has been going around. Biaxin XL took care of it in my girls. Several weeks until you get into the same doc that ordered the labs??? Somebody should be able to call you in a script without having to wait several weeks! Myco-p is a nasty bug. I wouldn't wait that long. Jill

I received a similar email from my dd8's 3rd grade teacher this Monday. I responded that I was not surprised because we had had trouble with her all last weekend. I know many people have discussed how OCD can look like ADHD, but I think it feeds into this narrow criteria twisting ADHD symptoms into OCD. My dd8 looks like this when something is brewing: urinary frequency and "holding it" too long, handwriting and numbers get sloppy, she pops up from the dinner table like a Jack-in-the-Box, her writing becomes disorganized and loses sequence, she has great difficulty transitioning between tasks, starting new tasks and staying on task, she starts taking little objects apart, appears driven to create stuff out of paper, trash, nature, you name it. We saw this developing the end of last week. I took her into doctor's office as her best friend was recently out for a week with strep. Rapid was negative and we should have the results from culture tomorrow. She was on Biaxin and doctor said we could switch her to Zith, but I'll wait until tomorrow. You can see some symptoms look OCD and some ADHD, but I think as parents we should push the conversation towards psychiatric symptoms that remit with immune-related treatments such as abx, steroids, IVIG. Those symptoms can be classic tics, classic OCD or ADHD. Don't you all think it's odd that anorexia gets identified separately? How is anorexia not a type of OCD too???? I guess the anorexia experts haven't caught on to the turf war yet.

Dr. B will give you a list of labs that you can have your child's local doctor order, but he won't write orders on a child he hasn't seen yet. We had the ped order the labs and I would recommend double checking those orders before going for the draw as at least 6 were "mis-ordered" as Peds are not familiar with some of them. As far as protocol, my dd12 had IVIG done with both docs you mentioned. It's complicated because even with prophylactic abx, it's hard to keep these kids healthy, then the cycle starts over. When my dd had her first IVIG in Chicago, she was 75% improved, but by the 11th week post, August 2010, she was exposed to strep, then school started and it happened again. I knew she would need more, and I couldn't afford to pay another $12-15K again. So we switched to Dr B and he got her approved for IVIG for an entire year. To me, the beauty/benefit of every 8 weeks is that my girl was able to stay healthy even after infection, so she would not backslide so far. She had IVIG for an entire year and goes again in 3 weeks. I think we are finally ready to stop. She gets infections, but quickly gets back to baseline with the correct abx for the particular infection which lately has been both Myco p and strep. Last year when I asked Dr B how would we know when we were done, he said when she gets an infection and responds typically sick with no behavioral changes. We are not there and honestly, I don't know when or if that will come. But I think we are ready to try and "manage" the condition with prompt abx and steroids if necessary.

I know we have all talked about symptomatic whack-a-mole before, but now I feel like I'm playing bacterial whack-a-mole It started in January; dd8 was + IgM for myco-p (not strep) and dd12 + strep, not myco-p. In the beginning of Feb, dd8 was struggling and was put on Biaxin for the myco-p which straightened her right out. that's a good thing! Dd12 was + strep, had IVIG 3rd week of Feb and was on treatment dose Augmentin. About 4 weeks later, she started struggling. So last Monday, I took her to her local doc and told him I didn't think the Augmentin was helping her. He switched her to Biaxin and within a couple days, she was greatly improved. Yay again!! That was a week ago, now dd8 is struggling again; sigh. We had a tough weekend with her and today I got 'the email' from her teacher. Her best friend was out the entire week before last with strep. Dd12 tells me this morning her throat is killing her, but behaviorly she is still going strong. Add into the mix I had walking pneumonia last week and was prescribed a zpak; same local doc treating us all. I thought with all in the house on some abx, we'd kick the germs to the curb; both girls on Biaxin, me on Zith and dh on doxy for his teeth. But some of the moles just won't die!!! Any advice? We are in PA, a ton of resistant strep flying around. I'm going to take dd8 into same doc tomorrow. Do I meekly suggest clindamycin? Do you think both girls need to be on something for both myco-p and resistant strep simultaneously so we don't keep passing back and forth? I'll try getting us swabbed, but we've never had luck with that before, just rising high titers. Advice greatly appreciated.

Ok, so she has been symptomatic of strep in the past, but this most recent episode, she has little brother to thank for pointing you in the right direction. I have two girls, one 12 and one 8, both pandas/pans reacting behaviorally to strep and myco-p. When you have a child who doesn't get "regular sick" it can be so tricky to know what is going on. You state your dd is never sick to which I say ditto, but it's really not true. It's just that you will have to train yourself to look for behavioral changes rather than coughs and fevers. Now everybody can have a bad day, but after a couple, you will need to be suspicious and play detective. You are in the wonderful position to know what is going on early and gratefully she is responding to abx in a perfect way. I hope it stays that way! Kudos to you for being so on the ball. It took me YEARS to figure this out with asymptomatic girls.