colleendonny

In Whitman, at the library, from 6-8 tonight. It's a new location, so I figured I would mention it here in case some of you would like to join?

I have talked to him via e-mail. I have his email address at home. I will send it to you. He writer back usually within a few hours.

My DD5 is PANS. She also has IgG for ehrlichiosis and a few IND on Lyme. She also has been exposed to RMSF and typhus. I had Dr.B , the PANDAS doc, check my DS, who is almost 3. Through his lab, band 41 IgG , came back present. TBI's were negative. His C3D immune complex was high and so were his asialo ganglioslides. I think these are the major things Dr. B looks for in PANS. The only thing "off" with DS is emotional lability, but he is still only 2 and I think he is relatively well behaved for his age. And he had overnight stuttering which lasted a few days.Seemed to get better on Augmentin, or maybe it was coincidence. He also previously was very sensitive to light and has on and off dilated pupils. From what I read lots of kids have IgG for band 41 when dealing with PANDAS. I am going to do IgeneX as well. Any insight on band 41 IgG?

I remember a steroid taper helping my DD's throat clearing tic.

Melissa, it should work now. Thanks

He did tests for my kids when we asked

I would love the info!!!

Ditto, Kara! Tiffani- I hope Drew is doing well with the IVIg. Keep us posted!

Thanks for the tips everyone. We did try the Advil. To me, I didn't see much improvement with it... Since starting the Azithromycin on top of the Augmentin on Thursday, just yesterday, 5 days later, we are definitely seeing much more improvements. It did seem to get worse before it got better though. Today, she didn't mention any of the intrusive thoughts, and just had a few minor confessions. At Dr. B's office on Wednesday, we did draw some more blood. We did test for Lyme and Co through Igenex a while back. She has a few IND bands for Lyme. SHe is IgG posistive for ehrlichiosis and had exposure to RMSF and Typhus. RMSF and Typhus antibodies are no longer being seen. Ehrlichiosis titers have yet to go down.Mycoplasma and strep were negatives on all tests thus far, but we did retest for MycoP last week but I have yet to receive the results. Nancy- I have not tested her for H.Pylori or the deficiencies. I will ask Dr. B to test for these at our follow- up appointment. Thanks for your advice. We do have Up and Down the Worry Hill and What to do When Your Brain Gets Stuck. She does like to read these books when she flares. We saw a new therapist who gave us some good tips. We are going to have her picture her thoughts as something. Maybe annts, and stomp on them. With distraction during a flare, the thoughts seems to lessen a lot. But is it so hard to constantly keep her occupied with an almost 3 yr old and a 1 year old. We have been going to the park a lot and playing outside. It has helped to keep her mind off things. And the past few days at the playground, she has been so sociable and making friends so easily. Again, thanks all for your tips. They certainly help us

Excuse my typos. I seem to always post from my phone

DD5 is currently in a flair and she is being haunted by thoughts that no 5 year old should have. She is confessing all of these thoughts to me. She is also currently having some sensory issues and thinking that she is doing things that she is not doing. What am I supposed to say to these things? Her therapist is telling me to tell her to think of other things, which only slightly works for a small period of time. She has been on full strength Augmentin since December. And azithromycin from January until April. Then she started with this flair the first week of June and it been at its worst this past week. We added in Azithromycin starting Thursday. I have also used Advil on and off. So, of this is a symptom that your child has, do you have any ideas for me? In regards as to what to say to her? Or any way to lessen these thoughts? I just feel terrible that her mind is racing like this.

Thanks for info on the mold checking. This is something that will he on ky list of things to do. I do think we have some in the attic... Laura, Thanks for your ideas on Lucy. I will definitely bring this up to Dr. M. I'm sure I will have to set up a new patient appointment for her. What you are saying definitely does make sense. I'm wondering if I could get my pediatrician to order the pyroluria test for me rather than waiting until August to see Dr. M. I Kay have to reschedule our appointment too, because I just realized it is DD's first day of kindergarten. It will certainly be difficult getting a urine catch on a 1 year old. I will be off to do some research tonight. My head is spinning!

So, I posted before about my daughter, who just turned 1 last week. She started doing things with her eyes back in March. We thought it may have been a seizure disorder, but she had a 24 hour EEG, and there were no abnormalities. Although, she never did the blinking spells while on the EEG... She does this thing where it looks like her eyes roll back quickly, and then she does this forceful blink that lasts about 2-3 seconds . When she was hospitalized after doing 6 episodes of that in 6 hours, she was on Cefdinir for an ear infection. Wasn't sure if maybe this was the way she dealt with the ear infection pain. Then she started with the episodes on May 31st, a Sunday. I brought her in Monday and she had aan ear infection. We did Cefdinir and when the epsiodes didn't stop, we did Azithromycin for 2 days. Her ears cleared up, but she still was doing many of these episodes. Probably aboy 40x per day. We have one neuro who wants a brain MRI, which I may set up. (Although I would like to try anoyther EEG first). Another neuro thinks it is a sleep disorder and referred to CHB sleep clinic. That appointment is in July. I brought her to a pediatric opthamologist. Her eyes are in good condition. Her optic nerve is normal. We had a Dr. B follow up on Wednesday. I brought Lucy and showed him the videos. He thinks it can be early PANDAS, resulting in a tic... So she is on day three of Azithromycin. The eye movements have lessened. (Which I guess doesn't rule out or diagnose PANS/ PANDAS). I may opt for the blood work to be done on her as well at our follow up in August. I wish I knew how to post a video on here from my phone... Also, does anyone here know about mold and the best way to test for it? We have a house that is 112 years old. But we did completely gut it back in 2006.

I would have your pharmacy fax a refill request to his fax. The email address nurses@advanced-allergy. Did you ever go to a follow up after December? They may want you to do a phone consult. Which would cost @125. Or maybe more labs to see what infection is going on.

We had an appointment today for our kids. And we bought his CD! It's a Christmas album and the proceeds go to charity. On the other hand, he does thinks the seizure like episodes that I posted about before about my daughter who just turned 1, may indeed be a tic that she does with her eyes. Just another thing we need to worry about...

Thanks for your replies. We are just going to keep an eye out for it.

We are on our way to see Dr. B. I am looking over my son's labs. He will be 3 in July. His IgM is 44, with the reference range being 43-207. So, while his is in "normal" range, it is still 2 points from low. What do you do for children with a low IgM? Is the only option IVIg? Can this number change to go into more of a normal range on its own?

Oh no What abx is he on currently? Are you going to start seeing an LLMD for him? Hugs

Laura, what does Yasko think it is relevant to? Lyme, Pandas? I don't believe DD was tested for it but when I brought DS to Dr. B, his was a high ratio. But the two alone were in normal range.

My DD, Kayleigh, graduated preschool today It has been a wild ride since October, but she is doing well and is so excited to be a kindergarter Hope you all have a wonderful summer with your children.

I think they go to lunch by 1. Not.sure if the lab does. I think the lab closes between 4-5.

I'm not sure how he is with other doctors. He does work with my LLMD, (not my case imparticular), but I know they do communicate on occasion. And its not Dr. J either. I think that because he is so extremely busy, it might not happen. But then again, he may. Sounds like you have a great team for your kids!

I would bring your daughters records as well. He may want to test for something that has yet to be tested. I am familiar with your sons journey, but forget if he has been tested for Lyme and TBI's... Although strep seems like the biggest obstacle, have you tested through IgeneX? He may suggest that and I believe he has the kits right there. It He is great, very knowledgable, but expect him to be a bit short and give quick answers. I would also bring any records for yourself and husband if you have had any land lately. If you appointment is for late afternoon, make sure the lab doesn't close before you have had blood drawn. I have seen that happen before. Good luck! We will be there on Wednesday. You are seeing Dr. B right? I know he is taking a vacation around this time. I hope they wouldn't have you travel from FL to see a PA for the first time.

That was a good article. The rally was great and I felt honored to be there at the end of his journey. And Laura and Kara, it was great meeting you

We see Dr. Bouboulis too. We travel about 4 hours each way to see him. I think from now on though, we will do phone consults. I do not see Dr. T, but I have great things about communication from him, but also things that are not so great. It shouldn't matter if they are in a flare up or not. It's mostly a clinical diagnosis, and some blood tests can back it up.