browneyesmom

hehe Vickie... being a nurse, I'm just dying to know how you know about food being stuck in tonsils! ... but I'd never press you to share more than you want. My DD11 had t & a in August 2009 due to constantly recurring strep infections that were difficult to eradicate (she was sick much of 4th grade)... and of course, PANDAS. She improved for several months - until she caught strep again in spring 2010. I don't believe she has cleared it since - definitely not since early August 2010. I did have our ENT check her about a month ago, just to be sure they had not grown back - they had not. As Vickie noted, the strep can hide in the crypts, deep in tonsils/adenoids. In my daughter's case, I think her inability to clear it is likely due to her low Immunoglobulin levels. It is a lot to consider... and I would say factors worth considering are how often they get strep, how severe the PANDAS becomes, how well you are able to control it and resume good quality of life... and how long that takes.... vs. the decision to have the surgery. I see the same thing here with the OCD hyper-focus on things... big meltdown if we remove the object of her obsession. Stephanie... what is OLE? I hope that you and your kids are both feeling much better soon!

Now that things are a bit calmer, wanted to update that she woke this morning her happy, bubbly self. Glad to eat a good breakfast, glad to help with things around the house... remained that way for a few hours. She's not quite as upbeat right now and I thought she might be heading into another episode a little while ago. So, I tried something different this time - gave her meds immediately - the Ibuprofen and the Diphenhydramine (Benadryl... kind of a lower dose), had her eat, she is reading a book and so far, she remains stable, at least ... :~) Thank you again, all of you, for your help and support last night - I can't tell you how I appreciate your input & support. Blessings!

Thank you, thenmama! I did email Dr. L and we are not so far from her office either. I'm certainly open to her seeing both, if possible, at this point... and I also hope that the specialists will consult with our docs here to help get them up to speed on this condition... I'll do what I can, if they do not.

Thanks Vickie! I have at times described it like she is a child possessed. When it is over, if she remembers or does not and we try to re-connect the memory loss for her, she is very upset that she could possibly have behaved the way we tell her. Sometimes, I wonder if trying to re-capture that is helpful or harmful... obviously, we don't want the disassociation to continue... I just want her well again and to have a normal life... like we all do.

I am realizing more every day that I have really been out of the loop in not remaining on this forum! What does Lyme disease have to do with this condition? I must have missed the information about that. I already emailed Dr. Latimer, but will see if I can reach Dr. Bouboulis next. Thank you very much for your responses!

I realize this has probably already been posted and I apologize for the likely duplicate post, but I am totally drained at this point and very hard to focus... don't know when today's nearly day long flare-up episode may become extreme again. Has anyone here worked with Dr. Elizabeth Latimer in Bethesda, MD? If so, I need to know if she is familiar enough and current enough on the research to treat my DD11 who was diagnosed about 2 years ago. From when I was on here more regularly a year or so ago, I seem to remember people had seen her... maybe EAMom? I don't remember who else... I am looking for a doctor who will be able to tell US what to do to help her get well, not one I have to bring up to speed on PANDAS myself. If we have to travel a bit to see one, so be it - we have to help her! Thank you!

Oh my... Dr. Elizabeth Latimer??? She is in Bethesda, MD!!! Does she really treat PANDAS patients successfully and is she current on research??? My ex (her dad) was opposed to taking her out of state anywhere for a while, but I think he is onboard with just getting her well at this point - I'm going to post right now for feedback on her! Thank you, THANK YOU!!!

... and thank you for the cyber hug... I'll take all of those right now!

We are home now, but she went right into another episode as we got close to home. She seems to be coming out of it somewhat, but was crawling around on the floor, teasing the dog, untying hubby's shoelaces & mine, and then went into a state where she was crawling on the floor with an almost silent scream at times & other times, stopping as if she was hallucinating again and dropping into a fetal position. Finally took meds... sigh... a very long day and possibly night. She is sitting calmly now, watching a movie, but still seems in this sort of toddler stage of discovering everything anew and being rather non-responsive or one word answers. Yes, the strep test was positive. Anyone surprised??? I'm not. The ER doc seemed to be b/c she has no tonsils or adenoids. I tried to tell her that because of her immune deficiency, she can't clear the strep, even with antibiotics... for months now. All she knew about PANDAS is that it has something to do with strep... a med student was there who is studying to be a pediatrician and she knew a little about it... good to know they are teaching it in med school. At least she was exposed to a patient with it and got to discuss with our ped, so I hope she and the ER doc both learn more. But anyway... Augmentin back up to 500 mg TID, so total of 1500 mg daily, even though I asked for 2000 mg daily. At this point, I am so totally drained. Next plan is to find a PED Immunologist and/or Neurologist who specializes in PANDAS... not one who has treated a case or two - I want one to end this nightmare and restore my dau's life! Beth Maloney sent us a list of docs recently - has been so awful here lately, that I have not had a chance to review the list - I'll try to do so now and see if I can find anyone... thank you again!!

Ok, so sorry about that little rant - I'm done now. I just mentioned Yeast to the RN, so she will tell her doc.

That is BID standard daily dose - up to TID prn if needed with Ibu.

Gosh, thanks so very much for the responses... my head is kind of spinning... let me see what I can answer... We are in Virginia. She is past the episode now and her personality has returned. The reason we brought her though, IS because she was refusing the Ibuprofen & Benadryl. The Ibu is 300 mg BID - TID (prn). The Benadryl is for rough flares... we have an Rx for Valium, but have never used it - she refuses all meds when she is in a severe state. Oh, how I hate this! I want her life back, our life back, thinks back to normal!! I feel like I'm being a whiny baby today, but honestly, I'm exhausted and not sure how much longer my stam will hold with these constant daily flare-ups and my heart is breaking for my bright, happy child who has vanished and I KNOW she is in there! She just needs help! ... and YES, it is exhausting being the one to do all the research and all the care and all the note-taking for record keeping of how she is doing. I no longer work as a nurse due to having this full time patient at home... how those of you with 2-3 kids and more with this are able to manage this is truly stunning to me... you are truly heros!!! Thank you all again... and thanks for the IVIG input... I needed that and I will look into having her switched. If anyone has any link to research that supports that, I would so appreciate it as I know I'm going to need it. They are going to let her eat now, so my ex is on the way to the cafeteria to get her some food - nurse brought her a snack in the meantime - she has reactive hypoglycemia also, so I don't want her blood glucose to spike, then drop and she crashes yet again! Ugh...

Our hospital has wireless, so I'm able to connect while waiting for the doc to come see DD11, who had episode that we thought was resolving, but she suddenly got worse, grabbing the dog and yanking her paws, scratching, biting and kicking us if we came near her. Refused to take her meds; called 911 for help to transport her as she has tried to get out of moving vehicle in the past & was still so combative. Somewhat calming when they arrived; transported ok, a little more responsive as we got closer to hospital. By now, personality is returning. Has had 2 SCIg infusions for Immunoglobulin deficiency of IgA & IgG; was told it would be 3 before she achieves steady state, so that will be this Wednesday. Her Ped reduced her Augmentin dose from 500 mg TID to 500 mg QD a few days ago... not sure why - questioned it, but this is what we are going with for now... I strongly suspect the strep is getting worse on this prophylactic dose. Got as far as getting Dr.'s direct page number to consult with ER doc, who I'm confident is going to say she is not familiar with PANDAS.... We have been dealing with this in severe episodic form for the last 2 years; I want her well and for her to have her life back, instead of spending so much time dealing with all these episodes and can't even attend school at this point! This has got to stop!! I think we are going to have to check for a list of docs who are familiar with PANDAS, Immune deficiency and DO know how to help her... Any input while we are here waiting to be seen??? Thank you all so much!!

Ok, so my dd11 started SubQ Ig infusions at home 1.5 weeks ago - just had her second on Wednesday. She is unable to attend school at this point... Another poster suggested we switch to IVIG instead... I know this would be a whole other round of approvals, so I need to know if anyone has had ANY success with the SubQ Ig or not. Also, please direct me to any literature about this that I can share with our docs. Thank you!!

Oh yes... the odor... I meant to post that an Urgent Care doc here is the one who initially told me about that.... and I have smelled it also.

Thank you... I may try some variations of this with DD11.

Due to the snowstorm here, our child study meeting was canceled. She is now on Homebound instruction, which has not yet started due to same snowstorm. She's having episodes every day.

Oh, how awful! So sorry for the resistance you are getting from your doc!! I agree about going to an urgent care or something today with the other two and telling them that your dd4 just tested positive for strep and the other two are showing symptoms of the same. My dd11 had tonsils & adenoids removed August 2009 due to this. Just FYI: she usually does test positive as the swab is at the back of the upper palate; however, keep in mind that there is a 20% false negative with the rapid strep tests. Sheesh... strep is so contagious; any pediatrician should know that. Also, there are now 5 criteria, I was told by a couple of urgent care docs I saw myself this fall (3 episodes of it myself being around dd who never clears it! ugh!) that if one meets those criteria (and esp if they have been exposed!), there is an 85% chance it is strep throat. I hope your new doc is more responsive to the needs of your children.

Fantastic news, Amy!! Thank you so much for sharing this; it gives me hope... may things continue improving for your son, you and your family! Denise

Thank you for posting this information!! I have been away from this forum, obviously much too long. Will someone please help me with understanding these labs... or provide a link where I can learn more about these and how my child's situation fits into this? Thanks! Denise

Sorry for the inconvenience... I worked on this more today and have this final version now. The GREEN ribbon represents a healthy future life for the victims of PANDAS... The HANDS represent us walking alongside our children, holding their hands... (taken from a photo my husband took for this ribbon of my dau (PANDAS) and me, holding hands... she chose the one she liked the best) WHITE for their innocence... SAWTOOTH EDGES for the up and down nature of this condition and what it does to the lives of the children and their families. I edited above posts so the links are all working if anyone wants to use it. I posted various sizes on Photobucket so it is easier to use. Denise

Oh my... I have been away from this forum for too long! Can someone please tell me about Dr. Cunningham's "test" for PANDAS? I did not know one existed... or has she perhaps refined the DSO titers? WD, I don't know if you remember me as I have not posted in probably about a year, but I remember you. I'm so sorry to learn you are now facing a whole new set of issues, perhaps inter-related. I can't speak to the lyme testing; I'm sure there are others here who can help with that as Mary has. Denise

Oh goodness!! Bless your son and your family for all you have endured all these years! My daughter just had her second weekly infusion of SubQ Ig on Wednesday.... after the third one next week, she is anticipated to be at a steady state, at which time, all these endless antibiotics might start working! I so hope for your son that the IVIg is helpful for him... how well we know the oppositional behaviors brought on by this. I do not have any input at this time, other than to share what we are doing: Ibuprofen 300 mg two - three times daily Omega-orange daily ... in addition to regular meds of antibiotics... I mainly just wanted to wish you the best... please keep us posted!

That's an excellent video, even if it is a few years old - I've seen it a couple of times & it's very informative! Thanks for posting... oh, and btw, the first link does not work for me either, but the second link does take me to the page of speakers. If I try to open in a new window, it won't work, but if I click directly on Susan Swedo video, it opens fine. Thanks again!

Magnets!!! What a great idea!! Ahh... bumper stickers too! I hadn't even gotten that far!!! Thanks!! I am looking at CafePress right now to see what I can learn about getting that started... they have a wide variety of items on which it could be placed!