browneyesmom

Things have been really hectic in our lives the last few months and especially the last few weeks, so I have not been on here to post for a while. Many of you will remember our horrific winter when we had to call 911 five times in a 2 week period around Christmas because she was so ill. I worried that we might not get her back that time. She wound up hospitalized for several days and received her first (of several) high dose IVIG infusion. She is probably about 85% at this point. She was on home-bound education the rest of the school year, except the last few days, which was so important as we look toward next year in hopes she will be back for at least a modified schedule, if not a normal one. I will be attending (and exhibiting to raise PANDAS Awareness) the IOCDF Conference this year in San Diego and wondered if anyone here might be attending as well. Here is the link with information about the schedule: http://www.ocfoundation.org/uploadedFiles/MainContent/Our_Programs/Conference/2011%20Conference%20Reg%20Brochure%20%28web%20version%29.pdf - they have quite a selection of talks, including an entire track for Kids/Teens, one for Parents/Families, several for Healthcare Professionals, etc. and this link is about attending the conference itself (also has links to discounted hotels, air fare, etc.): http://www.ocfoundation.org/Conference.aspx Please post if you'll be attending - I'd love to meet some of you there!

Oh, thank goodness! This is very good news, Wilma and I so hope it continues!!

Great newsletter; thanks!

So sorry you're dealing with all of this, Wilma! I too, would want to know what the plan is. Who would be her attending while there? I'd call to ask that question and then ask their position on PANDAS. I do this routinely now with any new doc. I've called psych hospitals as well and asked the same question and kept her at home safely b/c they did not know a thing about it. IF you ever feel she (or you) is unsafe at home (including nights when you are asleep and she is not), I would take her straight to the ER for immediate help. I can't remember where you live.... do you still have my email address at home? Easier to reach me that way... I'll pm it to you. We do have a psych on our team (we've seen him twice for this in the last 2-3 years) who does believe in PANDAS and last time we saw him (although she was still having explosive rages at the time and the neuro had just pulled her off some psych meds), he added.... nothing. Prayers for you and her as you work through this.

What happened at the appointment? I hope you got some good answers! Hugs ♥

More (((((HUGS))))) from here Emerson and I really hope you slept well last night and are still feeling better today! How long will you be reducing the Celexa before discontinuing it? I certainly hope you've been able to get clear input from the psych by now. Feel better soon... and I think Sarah had a great suggestion about school, if you can get support for that... or possibly home-bound for a while, if you need it.

DD 11's results: IgM Result: All negative except: **41 kDa = Ind IgG Result: All negative except: **31 kDa = Ind **39 kDa = Ind **41 kDa = ++

Our Ped called me today and we discussed possibly starting her on Doxy for the Ehrlichiosis. Has anyone ever successfully treated it with other meds, such as Biaxin? How long does it take to clear it? Are there any other meds and/or supplements used for this? TIA!!

The IgG titers are generally what would help to qualify you for IVIG... my daughter had deficient Pneumococcal in 2006, but improved and has held it after Pneumovax; however, her IgG levels remained significantly low when checked in fall 2010. This is why I suspect she may very well have LD, actually. She is unable to mount an immune response to strep (which we *know* she has had for well over a year now - rapids) and her ISO and DNASE titers never spike... thus, it seems to reason that the same could apply for other infectious processes. We're following up for further evaluation to make a more clear determination.

Similar, eh? Hmm... that concerns me, but I you know appreciate the input... just more evidence I need to pursue this and confirm one way or the other. Frankly, I want to discuss the risks (if any) of treating her even if she does not have LD... seems to me (with what little I know at this point in my exhausted state of shock that she is positive for Ehrlichiosis), that the risk is higher if we do NOT treat. I hope you're starting to feel better by now!

Hi Nancy... all respectful opinions are welcome; thanks! I'm gathering information at this point and keeping an open mind on all fronts.... the important thing is to get her well again! She has a significant IgG deficiency as well, so it could potentially be that her body just can't mount a response to the Lyme, if she has it. She has been receiving IVIG infusions and shows clear improvement with them, so I don't see us pulling that.

I gave her dose 8 of the Rocephin this morning; she has 6 days to go. Ped called me first thing this morning to discuss... it is possible she was bitten by a tick and I just never saw it - he said they usually fall off the host within 48 hours. We are going to try to hold on pulling the PICC until we have more information. He sent me to an ID who we are seeing on Monday... had an opening, fortunately! Thanks for the link, Wendy... printing that for him. Very interesting about the titers, Susan... my thinking has been along those lines due to my daughter's IgG deficiency... I suspect she just can't mount a response to the Lyme, if she has it.

Thank you for the responses! For all the reasons noted, I'm not completely persuaded that the Lyme is indeed negative myself, which is why I'm posting on both forums and will be calling an LLMD today for an appointment for further analysis. She does have a significant IgG deficiency also, which docs have been telling me is the reason she is unable to clear the strep infections for so long. This explanation does make sense to me as her immune system would not be strong enough to fight off the infection even with all the antibiotics; HOWEVER, I just don't feel fully confident in what I see on her Igenex (even with what little I know about Lyme and related illnesses at this point). Also, I know Lyme and Strep can bind causing more difficulty eradicating it. Further, because of her history of known positive strep infections (rapids); yet, her titers never rise... I'm even more unconvinced... and of course, determined to fight this to this finish and re-claim my child! Question: Is it possible to have Ehrlichiosis from a tick bite in which LD was not carried by that tick? I've just started reading about it and in my sleepy stupor last night, thought I saw something about that. Another Question: How does the prognosis look for this stuff? Are kids treated for LD getting better or do they never fully recover?

Her specialist in CT called me today to discuss results of labs drawn in mid-February. Results: Lyme (Igenex - third Lyme test we've run) = Negative Myco P = Negative Ehrlichiosis = Positive for exposure, which he said is viewed as positive and needs treatment. He called in 250 mg BID of Biaxin for four weeks. My questions: I know Lyme and Strep can work together to prevent eradication of either. Is this also possible with Ehrlichiosis? If so, please let me know where I can find information on this to share with her docs - I've totally had it with the never-ending strep throat infections for over a year. Thanks!

Her specialist in CT called me today to discuss results of labs drawn in mid-February. Results: Lyme (Igenex - third Lyme test we've run) = Negative Myco P = Negative Ehrlichiosis = Positive for exposure, which he said is viewed as positive and needs treatment. He called in 250 mg BID of Biaxin for four weeks. My questions: I know Lyme and Strep can work together to prevent eradication of either. Is this also possible with Ehrlichiosis? If so, please let me know where I can find information on this to share with her docs - I've totally had it with the never-ending strep throat infections for over a year. Thanks!

Wow... found this very old thread while searching for another post and just read through it again... kind of amazing to remember where I was back then... so. totally. naive. I think I actually thought being a nurse was going to give my child a lead in beating this... That just shows how little I knew about PANDAS - the great equalizer! I must have posted this the day I brought him a list of her s/s and wrote on the paper while in the exam room "RF?" I'd made the connection to strep, but they don't teach PANDAS in nursing school... at least they didn't when I went. He shook his head, asked me to wait in the room, walked back inside soon after and handed me literature that would change our lives... information on PANDAS. He told me he thought she might have it. I'll never forget that appointment; I knew that was a turning point in our lives, but had no idea how much. Sadly, she has been sicker than ever the last few months; however, we have now established a good team of doctors working with us on her case, which is complicated... aren't they all? She has been on homebound ed since mid-December, has a 504 now and I'll work with her school (wonderful now, thankfully - elementary was not) on appropriate accommodations when it's time for her return. To all who responded to this thread and my early posts (and many others over time... around this past Christmas-time certainly included) when I was in such shock and desperation... thank you. You may never know what angels in the darkness you were to me.

Doc finally called me back today. She's negative for Lyme & Myco; positive for Ehrlichiosis. She already has a PICC running Rocephin 1 gram daily for 14 days because she hasn't cleared strep for over a year. He added Biaxin 250 mg BID for four weeks. Hopefully, this will clear up her infections and the IVIG for her immune deficiency will help restore her health.

Doc finally called me back today. She's negative for Lyme & Myco; positive for Ehrlichiosis. She already has a PICC running Rocephin 1 gram daily for 14 days because she hasn't cleared strep for over a year. He added Biaxin 250 mg BID for four weeks. Hopefully, this will clear up her infections and the IVIG for her immune deficiency will help restore her health.

PICC successfully placed Friday morning. Ped is running 1 gram Rocephin daily for 14 days. Home health will be here this morning to do their 24 hour check of the site, then we're on our own. Since she's not really cleared a strep infection in over a year, I'm really praying that this works for her and we can move out of the infection stage. I'm hoping that her IgG levels are sufficient now (she was diagnosed with a deficiency there last fall) that with IV Rocephin, she'll be able to clear it this time. Blog updated with more info. When we were first discussed this, we did discuss herx possibility and that Rocephin is used for LD as well. Still playing phone tag with Dr. B... hope to make contact early this coming week. Continuing to watch her closely for safety. She's with my ex this weekend, but will be home for the infusion this morning.

Thanks... Dr. B's nurse emailed me that they reviewed her labs today and he is going call me late this afternoon to discuss... hope to hear from him soon. The Igenex reads negative, but I am not completely convinced yet... we shall see.

Thanks... he ran another strep test - positive still, even on Augmentin 2000 mg daily. Hate strep! He did order Rocephin for 14 days; she'll have a PICC inserted first thing in the am at our children's hospital here. Working on strong probiotics as well. I make my own Kefir now, so she is receiving that daily.

Thank you; she's sleeping in our bed right now; DH on sofa at foot of bed. I woke and can't get back to sleep now. We see our Ped in the am, first thing.... he wants to do IV Rocephin, unless I know of something else that works better for PANDAS kids who can't eradicate strep. I'll ask about steroids also... given her immune deficiency, I'm not sure how they'll handle that.

Has anyone used IV antibiotics to successfuly kill strep infx in a child who is IgG deficient? She has not cleared strep in over a year and is having thoughts of sekf-harm, including suicide, up to 4 times daily. Ped wants to do Rocephin unless I know of another that has been effective for strep in PANDAS kids who also have CVID.... she's deficeint in IgG & has not really cleared the strep in over a year... sorry for typos... on phone and might wind up in hospital again. TIA

Yep... appt thing stunk... but, glad things have lifted a little for you and you are enjoying your mornings more. I truly hope it will improve well beyond this for you as you progress through this treatment! Oops... duplicate... just felt it was *really important* to make my point! hahaha jk