browneyesmom

THANK YOU for this update! I am so glad there is more research in the works! New onset... meaning, how recent? No steroids prior meaning... how recently? What if it's been months?

Hi norcalmom, Yes, of course it is always prudent to go with the minimum effective dosage. Perhaps you missed my original post on this thread where I noted I am uncertain of IVIG indications for PANDAS kids and am seeking research on it? You may not be familiar with my child's hx, but she indeed does have an immune deficiency and we have tried everything else the last couple of years. She's been unable to clear a strep infection since last spring (regardless of which antibiotic or dosage) and is extremely ill at this point - has not been in school and rarely ever to do homebound... not to mention all the other ongoing issues she has, bless her heart. We do need to find a way to stop the relentless attacks on her brain, while hoping it is still reversible in her case. At this point, I am seeking research data as I never jump into any treatment for her without doing the homework. Can you please point me to the references on which you base your recommendations? Thanks!

lol! No David! - what an awesome book - she is much older than the probably intended audience for this book, but I may have to get it for her anyway! I have been wondering about writing a children's book for a while & sometimes, my DD11 and I talk about it. I think it would be so helpful for them to understand what is happening to them, that they are not alone & perhaps reduce some of the fear for them.

Nancy... when you write "LD" - you noted that twice in your last post - does the first one mean "Low-Dose" and the second one mean "Lyme Disease"... or did you mean something altogether different? Thanks!

Thanks for all the feedback. I left it up to DD11 to decide if she wanted to leave in the line or get stuck again the next day. What upset me about that is she had to have that access in her arm overnight and wound up not having an infusion the next day... which could have been avoided had the orders been checked before we left. .. I'm searching for research that indicates a higher dose is indicated for PANDAS kids, but not getting too far yet. If anyone has any information on research, I'd so appreciate the information. She's not having the best day today so far & Dr. B appt is still a couple weeks from now...

Oh gosh, Stephanie... thought I just read things were a little better today. Now I'm so tired I'm not sure which you posted first. I wish I could offer some info on the meds, but just do not know enough about that with the co-existing conditions. I'm so sorry things are so difficult lately. I hope you'll be able to get some rest.

We spent all day down there today & she did not get an infusion - we were told (on arrival) she got the full dose yesterday. After I went to medical records to get copies of all her records, I learned that she actually got 1g/kg of Gamunex each day (two days in a row), so given her weight, she actually got 32.5g each day for a total of 65g over two days when she was inpatient at Christmas. Yesterday, she got 400 mg/kg, which came up to 12 g. She has a deficiency of IgA & IgG & after a couple discussions with our Immunologist, he indicated he could not find any research about the amount to give to kids who have PANDAS. Thus, he was not comfortable giving more than that amount. The infusion she got yesterday was less than 1/5 the amount she got when inpatient 3 weeks ago. Hmm... I really do not know what protocol is for PANDAS kids. So, my question is this: What dosages have others who get IVIG every 21-28 days been getting and if there is any research anyone knows about for it's indications in PANDAS kids, can anyone direct me to the research so I can forward to our Immunologist? As for our day today and what happened... they told us yesterday she would have the rest of the infusion today and left in her IV access. It was bothering her last night and I told her I could D/C it if it was too uncomfortable and they could just stick her again when we got there. She wanted to try to get through it and she did, but it was not pleasant for her. Confusion abounded in many areas (way too much to get into here) & Mommy was not too happy, but for now, I guess that we just have to pray this will hold her long enough to see Dr. B in a couple of weeks. Also, that hospital's health care doctors & other staff will soon be educated about her condition as a result of the discussion I had with two nurse managers. So, not a completely wasted day if that comes out of it & they are better able to care for her and other children. I've been telling my husband that I feel God calling me to educate others and increase awareness of this condition... not exactly the way I would have done it, but I guess He made sure it got done! lol ;~)

Hey Stephanie, got your email. Risperdal worked in 15-20 minutes for my DD11. I have not seen a single rage since she started taking it about a week and a half ago. I definitely can be used prn, but I would check with a doc on his case to ensure you are using the right dosage. I'm so glad today was calmer for you. Best, Denise

Stephanie, I forgot to mention about the IVIG she got. I had taken her to our Immunologist in October for testing as she had low pneumoccocal titers a few years ago. She tested deficient for IgA & IgG and he ordered Ig for her. That started a process of being approved at home for Sub Q as my initial understanding was that it was the same as getting the IVIG - I later learned it's a much smaller dose. We did 2 weeks at home and she was getting increasingly sicker - more rages & as you've read, lasted hours. The day she was due for her 3rd weekly infusion, we wound up in the ER again. They did not do the IVIG there, but they did transfer us to a children's hospital (further away & under the care of a pediatric neurologist we'd seen about a year and a half ago) that did. The first day, they ran oodles of tests and the next night, they did the first hdIVIG, second one the following night - 1 gram each night for a total of 2 grams. That is where we are going now (yesterday and again today) for her 2nd set of IVIG infusions - receiving 0.5 grams each day this time, for a total of 1 gram. We see Dr. B on Jan 26 (I was able to move it up a little, thank goodness!) and I anticipate we will know more about her future infusions after that. I don't know if being already approved for the SubQ Ig made a difference in her case. Her neurologist told me it would never be enough & she needs IVIG to get better. Looking back, I wonder if the SubQ gave her just enough boost to make her sicker as the IVIG is clearly helping... slowly, but it is.

Oh gosh... no kidding! We have not made it to church in weeks! ... and as for the last one... you mean parents actually work and still care for their children?? I'm am in awe!!!

Thanks Kim! I found it and posted. It must have been started during my hiatus for those few months when she got better after the t/a, before she caught what I refer to as the never-ending strep infection in spring 2010.

You might be a PANDAS/PITAND parent if.... 1) you spend more time researching auto-immune neuro-biological conditions and how to resolve them than sleeping. 2) you've become germ-phobic about your children! 3) you define a "good" day as one without a rage or other unsafe event. 4) you know more than your child's doctor about their medical condition. 5) baths/showers have become optional some days... yes, for both you and your child. 6) you *know* your child is in there amidst the chaos and will do nearly anything to rescue them and help them reclaim their health and their life! 7) you know more about other PANDAS/PITAND parents and their children than your own extended family. 8) you have ever had to restrain your child from putting hands covered in zinc oxide in her mouth because she was trying to eat it... and oh yes, how it got all over her hands (and her new slacks) is a whole other story!

Oh gosh!! lol... In answer to your first post - yes. Not actual cursing words as she doesn't know any; however, she will say things in episode that she would NEVER say, no way! She is horrified the times she has remembered some of the episodes and it's heart-wrenching. She will say things like, "LIAR!!!" or "I'm going to kill you" in that deep, guttural voice that is not at all like her own. As for your most recent post on this thread... lol... thank you for the chuckle and I have often thought recently that we need to start a thread here that "You might be a PANDAS/PITAND parent if... ahhh... the life we lead. Sometimes, I have to laugh too... it's either that or cry.

My daughter just told me that she is dizzy, but her head & throat (from strep throat) feel a little better!!! She noticed she felt a little better right after today's IVIG infusion. Yay!!! :'~)))))) Wow... last few days, she was getting so much sicker before this round of infusions. I know we have a long way to go with this still, but it is so good to see glimmers of her returning here and there, every few weeks!! ♥♥♥

I was hoping you would chime in, I was following your posts with horror Thank you for the feedback regarding the meds, it really helps me to understand. I do think that he reacts negatively to the ativan. There was a time when it did help about 6 months ago, but this time I gave him a lot more and I just think it made him worse. Tonight we decided to forgo the ativan and the rage only lasted about 1.5 hours rather than 4 like last night. I have some risperdal here, maybe I should start it, but I think I will check with his pandas doc in the am. Wow, that is amazing that they started IVIG right there at the hospital! Stephanie... I am so glad this one resolved faster! My heart broke when I saw your post. I too, had those rages with her that lasted hours and I actually started to think she might really overpower me - so strong she is, in the midst of them! She is 65-70 lbs and they only have her on 0.25 mg of Risperdal, twice daily. We are able to increase to 0.5 mg, if needed, but so far, it has not been necessary. Inbox me anytime if I can help. I'm so sorry things are so tenuous there right now. I so hope you are all able to get some rest this evening, although I know it is so difficult to sleep when so concerned, which just decreases our strength further. Please let us know what the docs say in the morning. We have another IVIG tomorrow, so may not be able to get online until late, but I will be watching for your updates. Big hugs

I'm so sorry, Stephanie. We have been there several times the last few weeks.... transporting DD11 to ER via ambulance. I can't speak for what they may or may not do but I can share about our experiences and feel free to check my older posts about our ER trips. I got some feedback here when they tried Ativan for her and it seemed to make her worse. Other parents posted that it could increase rages, a pediatric neurologist (not ours, but one in his practice) confirmed via the ER doc that the benzos like these can make it worse. They switched her to Risperdal instead and it has helped. I can't say that she does not have any episodes anymore; however, they are dramatically reduced & we are able to manage them at home. After our third time to the ER, they did admit her to the hospital and that is where they started her on IVIG infusions - a change from the SubQ infusions she'd started just a couple weeks earlier. I would suggest that you have phone numbers of any physicians who might be able to support you regarding PANDAS when you go. I gave phone numbers and asked them to consult... sometimes, called her regular docs too, to help connect them. I hope it goes well... please keep us posted. You'll be in my thoughts and prayers this evening.

Thanks! I will see if I can access it via my Pub Med account. if not, I'll in-box you, if you would not mind sending it to my email as an attachment. I want to take every opportunity I can to raise awareness for our children. Thanks again!

My understanding is that it depends on what they use. They have her on Gamunex and she is tolerating it fine so far, but every child is different. Thanks for all the responses. I guess as with a lot of this, we'll have to wait and see how she does, hoping for the best while keeping our eyes open.

Yes, of course you would! Regardless of what you 'know' is causing which issues... do not give it a second thought! The only way I would want someone to be concerned about that is if a child really did not need the pass for any reason. In this case, you truly need it and are not seeking to take advantage. Your child, you and your family have been through enough... we spend our sleepless nights searching for answers to help our children and their waking hours, trying to get them through the day - it's draining and stressful and we are not always very good about taking care of ourselves. People close to me have been reminding me recently that we must do this so we can be there for our kids... and I'm realizing they are right - we'll see how well I follow through! Ha! ;p Get the doctor's note, get the pass and have a wonderful break! Let us know how it goes - hope you all have a great time!

Thanks for responding, Peggy. Our Immunologist only first heard of PANDAS when I mentioned it to him myself at one of my own appts with him a couple years ago. He initially thought it was a psych issue, but no longer thinks that. Issue is that he has limited knowledge/experience in the area of PANDAS kids, so I'm concerned that he may be shooting low on her dosage and she may be in for a rough few more weeks before we see Dr. B. :/

Ok, so my DD11 had her first IVIG infusions 3 weeks ago while inpatient. The pediatric neurologist ordered 1g Thursday & 1g Friday, for a total of 2 grams over the two days. Today, we are back for her second set and she is getting 0.5g Gamunex (same med as before, but half the dose) today and again tomorrow - ordered by our Immunologist who found her IgA & IgG deficiencies. My question is.... do they usually cut the dose in half like this? What have other's experienced?

We are at the hospital right now getting part one of second IVIG infusion (3 weeks after first one) and her nurses want to know more about PANDAS. Has anyone found any good research articles for nurses? Thanks!!

Go to the link above, click for today's broadcast, select the one you want - Beth Maloney is currently at the top of the list... then click play on the small box at the top center of your screen - says "Blog Talk Radio". It was recorded & is still there is you missed the live version... I'm listening to it now.

Very well said. I suspect that part of the tension might be due to strep being more prevalent in the colder months and perhaps exacerbating things in our homes. Of course, every parent wants desperately to help their child reclaim their lives. However, I agree that this is a safe haven for so many of us and while I have not recently witnessed arguments, I have at times seen posts where people seem more intent on making a point rather than helping each other. It's also important to remember that every case & every child is different. What works for one does not necessarily work for the next... I hope that in time, we will all know wellness in our homes. In the meantime, I believe we have the capacity to channel our trials into positive energy to raise awareness & help our children.

So, I'm pressed for time this evening, Emerson, but this looks like a reference book? I think it's a great idea! Please let me know how I can help! ... and btw, you truly are an angel and a hero too. Blessings ♥