matis_mom

I was excited to get an order for a CT scan for ds's sinuses. Now I'm a bit worried about the radiation part. Is there a potential risk to this? I probably outweighs the potential benefits, but I am also wondering is there a gentler way to check for sinus infections.

What is the code for WB anyway? We really like our local Labcorp, but they have messed things up for us before...

I don't have any answers for you, but I just wanted to say I too was so disapointed so find out all along each times my kids were checked out for Lymes at the pediatrician, they did not do a WB! We are currently all on abx but after we are done I will everyone else tested again. We'll be seeing Dr. Beals this coming Tuesday for ds. I hear he is top of the line so I'm very hopeful. Remind me again of how many children, who has PANDAS/Lymes, etc? Did any of your kids have IVIG or plasmapheresis? We just found out about the Lyme a week before PEX, so we are postponing it till further notice.

I had posted about it originally. I did try it for a while and I cannot say that it hurt or helped our situation. I think disinfecting the house regularly is a good idea, and you also have to make sure the kids' skin is in good shape. But if your kids are having recurrent strep, I would look into getting everyone checked for Lyme Disease, as it seems to be our case. I posted an interesting article about this recently. If you google "lyme disease strep", you'll see what I mean. I did not find any specific research but many posts from people talking about recurrent strep, strep that would not clear (that is my case at the moment), etc. Please, please, please, do not discard this possibility if your family keeps getting strep. My kids kept getting it (mostly WITHOUT symptoms) and now we are at the point where even the pediatrician, after a year of me going in over and over and the kids always having something (strep, ear infections, impetigo), has finally agreed to prescribe antibiotics for everyone for 30 days. We had tried before doing everyone for 10 days, but it came back. Even though our pediatrician does not know much about Lyme, she agreed with my own dr's theory that it's probably Lyme. Even though it's not anything to be happy about, I am hoping with the right treatment we will be able to end this crazy cycle!

I googled "lyme disease strep" and I found this article. I'm pasting the relavant paragraphs, but follow the link if you wan the full article. I think this may be the key of our kids' problems with strep. I wonder what exactly the mean at the end when they mention the "treatment altered form"... anyone??? http://www.encyclomedia.com/lyme_disease.html Sleeper: One of the sleeping antigens that is very hard to measure is streptococcus. It has been well established that the toxins from streptococci, as well as those from mycoplasmas, have an affinity for joints. We have found in the course of taking comprehensive histories of our patients that a tremendous number of them have had severe troubles with their sinuses or their tonsils or their ears, or have had scarlet fever or rheumatic fever-all streptococcal conditions. Strep is an organism that is very susceptible to penicillin, which is why rheumatic fever and scarlet fever are no longer the terrible menaces they were a generation ago. But even after it has been knocked out as a source of infection, streptococcus hangs on for years-in tonsils, around teeth, and in other hiding places-not causing infection, but serving as another source of antigen, or toxin, with that demonstrated specificity for joints. In treating rheumatoid arthritis, when a physician gets to the point with tetracycline therapy that the mycoplasmas have been substantially reduced and further progress appears to be limited, it makes sense to probe the possibility that streptococcus is complicating the process. If a titer of streptococcal antibodies indicates that their levels are elevated, then both the mycoplasma and the strep can be treated at the same time, continuing tetracycline for the former and using ampicillin for the latter. Nothing about rheumatoid arthritis is simple, and it doesn't necessarily stop there; the streptococcus often alters its form, which further compounds the problem. Treatment of the strep then takes one kind of medication, and treatment of the altered form requires yet another.

I had put ds on a very restrictive diet awaiting results and he did seem to feel better on it. So we got results back today. He is allergic to: Milk, cheese, yogurt (all dairy I guess) Wheat Gluten Most fish Peanuts Chicken The chicken kind of surprised me, but it's easy to avoid. At least he is fine with eggs, oats, rice, all fruits and vegetables, and some of the nuts (we've been using almond flour a lot) I'm wondering if others have tested and found that changing the diet helps.

My PANSAS son reacted when her sister had impetigo. Impetigo could be staph or strep, and they can swab and test to see which. My daughter's cleared right away on Muciporicin ointment (it's a prescription cream), but she is not the PANDAS child, so that was ok, but if it's your PANDAS child and he is not on anything now, I would definitely insist on oral antibiotics (not sure which one would cover staph)

Great news! How encouraging. I hope and pray they will continue to make progress! How is your throat?

ASO: 377 Anti-DNASE b: 680 They are almost back up as high as they were initially in July 09! About the Lyme, it's not that he wasn't concerned, but he said the bands he shows are not all Lyme specific, so we wants us to do Igenex to confirm. But he was more concerned that the strep titers were that high after over a year on abx, with most of that time being on Augmentin XR.

That's the million dollar question! We are seeing an ID doctor today, and I faxed the results to Dr. L. When we got back yesterday we had a message that the consult at Georgetown is scheduled for Monday! I am going to call Dr. L today and tell her I want to wait at least until we get the Igenex results back. Maybe if ds was doing horrible, I would say let's just try and give him a break, but he is doing pretty well these days, so I feel we owe it to him to try the Lyme route before we do anything more invasive. Please, please all pray that we will figure this out!

Some people might say you are lucky, but I'd say your are BLESSED! So cool that you are able to document the infection, so cool that the ENT prescribed for you! It would probably be a good idea to journal symptoms and how they get worse w/infection, better w/abxs (hopefully?). And hey, you can't be in this forum until you've gotten the "oh you poor crazy thing" look about a dozen times! Just kidding! So happy for you.

That's funny-llm's Saw Dr. B today (drove 7 hours there, 7 hours back!). He wasn't too concerned about the Lyme results for now, but definitely wants us to do the Igenex, so we'll get that done on Monday. He is concerned to see his ASO and Anti-DNASE b are still high, and thinks we probably need to change antibiotics. He also gave us a script for a sinus scan since that's the only thing no one has checked out and maybe strep is hiding there. He was very nice and thorough, and it was doable with dh behind the wheel DS is so tired of this routine, though. He is so sick of getting blood drawn, spending hours in the car, hours waiting, hours hearing people say pretty scary things about him... But, he's a trooper I guess now it's back to the waiting game! How long does it take to get results back from Igenex? Do they send you a copy or do you have to get it from the doc?

You sound like me! Doctor no. 1 did not want to treat, even though we repeated titers 30 days apart and they were still above normal. Doctor No. 2 said, "you have it! I'll treat you." I'd be interesting to see how you react to treatment. I'm on my third antibiotic and still can't seem to get the redness and swelling to go down (what does your throat look like, btw?). Now it turns out I may have Lyme! Keep us posted.

Nothing scientific here either, but DS first clear OCD handwashing episode was when we were visiting my sister and her kids had pink eye. One of my nieces had to be hospitalized because her eye was bleeding, it was nasty! We were there for a month. All my nieces/nephew got it, but none of my kids did (unless they got it in the throat and I didn't realize?). I told my kids the best way to avoid getting it was to wash hands often... WRONG THING TO SAY! LOL! DS was literaly washing every five minutes. This was all before we knew about PANDAS, but I can see looking back how it was an early sign of it.

I am so sorry! It so hard to watch them suffer. Our son too experienced some relief writing down the thoughts that were causing him anguish. Have you tried steroids? Are you giving him anything for inflammation? About the school thing, yes, it's important, and it's high school, but really, in the whole scheme of things, is it such a big deal if he misses a year? What about homeschooling? Did you ever consider that? It's not easy, but there are many programs out there to make it pretty simple for mom (maybe take a look at k12, it's mostly on line and many states will pay for it.) Also, do you know if he has any food allergies. I put my son on a grain, sugar, and lactose-free diet, and he is doing much better, in spite of the fact that his siblings and I had strep last week. About Lyme... we had had ds tested several times last year. I was wondering if I should go ahead and do Igenex. Well, it turns out now, after a year on antibiotics his Western Blot (through Labcorp) is showing 4 bands positive. He did have 3 steroid tapers, the first one of which helped him tremendously, so even if you are still thinking he might have LD, I would try steroids to get him out of the whole he is in right now, I can't imagine things getting any worse! Keep us posted and stay hopeful, he will get better. He will.

We will be praying for you guys, and for your doctor too. Did you ever consult an infectious disease specialist? Maybe they can help you find a antibiotic protocol that works, or at least give your pediatrician something to hang on to.

Why is that? We had the same experience! I guess they just NNNNNEEEEED that Augmentin, huh?

Good job at catching it! Hope the fallout is mild. I've found whenever DS is on two abx, he seems to do his best. And yes, I think Keflex is a good choice. And, I just have to say this, did you check other family members??? Keep us posted.

For perfect brown rice, just make sure you put 1 part rice, a bit less than two parts water. If you can, saute the rice in oil or butter first, then add the water. Let it boil uncovered for about 10 minutes, then reduce and simmer covered for another 30 minutes. If you can use stock instead of water is even yummier. If you can use butter, add tons of it and salt to taste. It does take about 40 minutes to cook, but you can make a big batch and save it in individual servings.

When we all got the flu in feb 09, ds got it like everyone else, but he just could not shake it off. We all recovered but he was just not the same after that. Another thing is, I believe they tend to catch anything, especially strep in any form (throat, pink eye, etc). I would try to have him tested again. My son is only testing positive in some bands now, after a year on high dose antibiotics.

I got some validation today when the pediatrician called with PANDAS ds's results... not a positive by CDC criteria, but 4 bands present. ASO, Anti-DNASE B, and Mycoplasma IgG also high. I am hoping now she will run a WB on all the kids and see what we get.

Those are IgG For IgM they only test 41, 39, 23, all absent.

OK, for the llm's (lyme literate moms) out there, the following bands were present through Labcorp and while of full strengt abxs: 66, 41, 28, 18. High Mycoplasma IgG High Anti-DNASE b High ASO Low IgA 2 (and IgA 1 very close to the lower limit) Can't wait to see Dr. Bouboulis!

Talk about timing! But I am so thankful we found out before. I was really concerned if he had it and we did PEX, we would never get a positive result in the bloodwork. We already have an appointment lined up with Dr. Beals for next week I made this appointment weeks ago. God's timing is always so perfect!

The pediatrician just called to say she had the results for the tests Dr. B. had requested. She mentioned DS has 4 bands (5 needed acoording to CDC) positive for Lyme... I guess this is good news, because at least now we know for sure we are dealing with Lyme. But it raises a lot of questions about how to treat/where to go from here. Is plasmapheresis out of the question until Lyme is under control? We are seeing Dr. B on Wednesday, and a local ID specialist on Thursday. Oh, what a year this has been!