browneyesmom

lol @ HT's Mom... I could never cope otherwise - God and humor carry me through this! When you see me posting wacky things, it means the stress in my house is sky high! Great posts everyone... thanks for making me chuckle at the wackiness that has become all of our lives on a very stressful evening.

It has been a week since we got home. I had trouble reaching our pediatrician for the LFT order (those and her porphyrins are elevated) and I wanted to just have to do one stick for all the labs. So, I missed it for this week and will have to go early next week. Dr. B said that due to her Ig deficiencies, she is unable to produce high titers to the strep... I suspect it is also the reason she can't produce a fever. He has her on Omnicef BID. I'm going to have to withdraw from my class for this semester. I can't complete any of it with her here all day & sometimes doing homebound. That's hard for me as I thought I'd be a nurse practitioner by now and can't complete this silly BSN, but... sigh... it's just going to have to wait.

Just asked her if she is having any physical symptoms: "My head hurts, my throat hurts and I feel like I am going to vomit." Sigh... those are her classic strep s/s and they never have cleared since last spring.

ugh... I am so flippin' out of it lately!!! What is wrong with me?!?! It just hit me that the 'sinus inflammation & congestion' that showed on her MRI at Christmas when she was inpatient... may well have been strep!! AAaarrrrggghhhh!!!! How could I miss that??? Ugh... I don't know if the antibiotic she's been taking since (Omnicef @ 250 mg BID) will cover that or not. Guess I better call pediatrician or Dr. B in the morning... again. :/

"... *JUST* dealing with... " ???? Ugh!

I'm just having a day today! I need to connect, vent and laugh over the wackiness that has become my life. Let's start a "Top Stupid Comments" thread... can be from parents without a PANDAS/PITAND child, doubting doctors, helpful friends, judging family members... whatever! Go for it - let 'er rip! From an ER doc in a Children's hospital (that claims they are on the cutting edge of diagnosis & treatment): "Have you considered that this might be a psychiatric issues?" Well, duh... explain to me why it resolves soon after the strep infections and why it returns with strep infections? From a school nurse: "She's just going through a phase as a pre-teen." Ha!! I'm not exaggerating when I say "rage"; something is very wrong with my child. From a teacher: "At nine years old, she should be old enough to remember to wash her own hands without being reminded." Ugh... have you not heard anything I said? She is sick, she has an inflammation in her brain (remember the brain, where memories are stored?) due to an auto-immune condition and can not remember. If she gets sick, we're not talking a typical week long cold for this child. From a teacher: "No, I will not check her planner to be sure she has her assignments noted; she will need to call a friend if she doesn't get them." Thanks... just add more stress to her evenings. All I'm asking is to be sure things are organized at school; I'll take it from there. From her father: "She's playing you; there is nothing wrong with her." Ahhh... priceless. "She needs more discipline and she would not have these episodes." Oh, I see... let's spank her for having encephalitis in her basal ganglia? Yeah, right... I'm sure that will help - not! From her father: "These episodes never happen at my house; there must be a trigger at your house." (spoken to me as well as in front of various doctors.) From a counselor & numerous teachers: "Why can't you get her here on time?" bahahahaha Ok, I'm getting punchy now... someone else have a shot.

Ok, so I've had a rough day today with DD11 having a hard time. She is exactly 5 weeks and 5 days from her first HD IVIG infusion in the hospital at Christmas. Today was not pretty. She was moody & emotional all day today & much of yesterday too, btw. She kept getting "stuck" on things and had a major rage this evening where she tried to violently attack my husband while I was making dinner. She was screaming at him that he is a liar, to stop pushing her (he wasn't - he was, in fact, extremely calm, loving and patient with her), pulling hair, trying to bit, hit, kick, scratch... did I miss anything? That lasted for about 10 minutes... yes, I know that is not long compared to her 2 hour rages just before Christmas, but my resources are more drained now. Following that, she hid under the kitchen table and screamed for about 5 minutes, then went back to the family room, in the corner and curled in a fetal position, screaming. Then she laid on the floor screaming and crying for another 5 minutes or so. As that settled, I picked her up and carried her (stiff and starting to thrash now, as well as screaming when I lifted her) to the kitchen and sat her on my lap and held her - her hair was all over her face & stuck from the crying. She slowly started calming. She got out of my lap and crawled onto the floor. For the next 45 mins or so, she crawled around on the floor, mostly following the dog. I finally got her to eat, but she remained in a very regressed state. She cuddled with the dog, then as suddenly as it began, she suddenly snapped out of it and spoke. My husband had just completed a phone call and she said, "Who was that?", in a perfectly normal voice, perfectly normal tone, etc. Last week, she refused to take a bath for 5 days straight... said she couldn't get wet. She didn't want to discuss the reason, but I know what it is. Last night & two nights ago, with much encouragement, she did bathe. Tonight after her episode ended, I told her she needed to go take a bath and get ready for bed, fully anticipating it might lead to a mess. She got up and went right upstairs, then within a couple of minutes, called down to me about where to take her bath - she is in the tub now. It's like we're on a roller coaster. Is this time frame about right for "turning back the pages"? If so, how long does this last? What might I expect in coming days, weeks, months? We return to Dr. B's infusion center in 3 weeks for her next one.

Thanks for the input, Priscilla! We live on the east coast and I'd be interested to learn more about that, as well.

Oh, forgot to mention.... if it started on her bottom area and seems to be coming form there... she probably needs to be checked for strep in that area. Some kids do have strep in other locations and that is one of them.

Sandpaper rash that blanches on palpation is a classic sign of scarlet fever, which is a rash that develops in response to strep toxins. Does she have it on her torso? How is she doing now on the Zith? Any PANDAS symptoms? No worries about asking a lot of questions... we all do from time to time... this forum is an excellent source of information!

Hi HT Mom & welcome to the forum... I had the exact same thought about both boys having PANDAS, with one presenting with a more mild case. Dr. Latimer in Bethesda MD is a neurologist who handles PANDAS cases. I don't know if she is taking new patients. I need to call her myself - we're in Williamsburg. We just got back from seeing Dr. Bouboulis last week. He is an Immunologist in Darien, CT who handles PANDAS cases. Both docs are excellent from what I understand, although may have slightly different approaches. Dr. B did order labs on the rest of the family for strep titers as well as co-existing infections. I'm anxious to see what he finds there.

Emerson... yeah, what they said... vent whatever you want. We certainly know that sometimes you just need to get it out. Did that throat infection clear yet or not? I know the culture came back negative, but we left town to see Dr. B about that time and I don't remember if you got treatment for it or not. If not, please go back to see a doctor who knows how to help you get better... and personally, I'd like to know the outcome of that and if it's helping, so please update when you can. Thinking of you... ♥

As severe as my daughter has been these last several weeks, I couldn't even bring myself to read this thread for most of today as this is my greatest fear in this... what if I don't get her back? Dr. B thinks she has had it going back to at least early elementary school (5-6 years old), but she was not even diagnosed until her first extreme exacerbation in Jan 2009, two years ago. Since then, she has endured months of not being well - both then before the T/A in August 2009 and this time, since she caught strep again in spring 2010. I actually feel a little better after reading it. I don't see any references on her page. "It is theorized... " By whom? Her? "... recovery of damaged brain tissues *may* not be complete." Find us some cases where that has happened Ms. Cohen; don't post fear statements to get business. Honestly, it makes me angry that she has that on the web as none of us need more worry about this. I want to share that we saw dramatic improvement after her IVIG infusion at Christmas and improvement again last week when she had it at Dr. B's center. She has CVID (and other co-existing conditions... we're testing for others), so until we get her immune system functioning better, I'm trying to be patient. I totally understand your worry and indecision about what to do at this point... it's often such a tough call for treatment and so many other areas of their lives. Maybe if you take a step back... sometimes I try to project myself 10-20 years into the future and look back on the situation and ask myself, "How will I wish I had handled that?" I hope things improve soon at your house. Sorry you ran across that... consider the source.

Emerson, you've been in my thoughts since your most recent illness. I hope you won't feel any need to 'put on a happy face' for us... you are such a valued member of this forum and need support too. I hope the sun is shining for you tomorrow... literally and figuratively. Hugs ♥

YESSSSSSSSSS!!!!!!!!!!!!!!! Amen sister; I am so happy for you!!!!!

Hey everyone... my step-daughter is currently studying Bio-Medical Sciences in grad school that is affiliated with a medical school. She mentioned my DD11's condition to one of her professors, who showed an interest in it and I understood she was going to check into people doing research on it. I was in the airport at the time, so I may have misunderstood her, but... just in case we wind up with an "in" here, I intend to make full use of it!! I am working on an email to her atm and wanted to check with all of you about areas we MOST need research right now. Here is what I have so far: The areas we most need research right now are in proving the association of auto-immunity attacking the basal ganglia following strep infection (or other/co-infections, such as myco or Lyme) as well as demonstrating effectiveness of IVIG for PANDAS kids. While it is being used with excellent success in many cases, many insurance companies do not cover it at this time because it is considered "experimental". It costs over $ 10,000 (for the infusion alone, not counting any travel), so many parents face a very difficult situation with their children. Same thing goes for long-term antibiotic use... although not as expensive. I'd welcome input as we pull together to help our children. Thanks!

Is that Cefdinir still unexpired? I'd sure email Dr. K about starting it. Please keep us posted & take care.

I am so sorry to read this! I have never used naturals, but I know some moms (Stephanie2) on the forum have for infection. Do you think she already has strep or is reacting to yours? Sending big hugs and praying the roads are clear enough in the morning for you to get the meds you both need!

hahaha airial9... I've wanted to do exactly the same with my DD11 for the doubters, who I'm pretty sure think I am either exaggerating or it's all a psych problem... my only change is that I want them to come to my house where she is more episodic and stick around long enough to see her improve on antibiotics... then, tell me it doesn't exist and just exactly what IS going on with her! WorriedDADNMOM, welcome to our forum and I'm very glad that you found us! The others have already given excellent advice. I want to add one thing that you most likely already know - you need a new pediatrician! I wish I knew one in the area, but we are on the east coast. Someone else here may be able to suggest someone who can help you. Also, I would encourage you not to be reluctant to travel to get medical care for your daughter. I resisted that initially, thinking our docs here (esp our pediatrician) would be able to manage her care. We just returned from seeing Dr. B in Connecticut, but my DD11 became so severely ill around Christmas that we had to call 911 5 times in 2 weeks and she was hospitalized for a few days in our children's hospital, where she received her first infusion of high dose IVIG. I wish we had not waited so long. Some children can be managed early with antibiotics. As Vickie noted, it's important to find the right one for your child's case (Penicillin often does not do the job long-term, but Augmentin, Azithromycin and even Omnicef have better success) and as Norcalmom noted, it's important to have her tested for co-infections.... and with the appropriate testing as some of the screens will miss things. You're in the right place - this is a great forum with a lot of valuable information. I wish you the best.

Grace... we used Acredo when she was doing the SubQ at home... turned out, of course, to not be nearly enough for what she needed and we're now doing HD IVIG with Dr. B; however, the Acredo nurse we were assigned was wonderful. We happened into that as that is who our insurance uses; I have no idea if they work with out of pocket situations, but it might be worth checking. Phasmid... in that letter... one might want to compare/contrast the costs of repeated hospital admissions and even institutionalization (not saying that is what you're planning to do) as I suspect they may wish to re-consider when faced with the options they might have to cover. I was fully prepared to do battle and gather research literature on it as well as tell them they could choose one or the other. Please keep us posted.

Sorry Wilma... not yet, but I have been looking into it when I can & just wanted to share the ribbon with all of you. There are also some picbadges of it available on Facebook. I've been so wrapped up in my DD11's situation that I don't have much time... you know how it is. I do plan to make that happen... it's just a matter of time and locating the right place to make them into buttons, magnets, shirts, etc. and having the funds go to support PANDAS/PITAND in some way. Until I get the ordering in place, please... feel free to use the link to post it and increase awareness and support research for our children! Thanks! Here is a pic of the updated ribbon, to include PITAND and link to where I have it posted on a public Photobucket page: http://s258.photobucket.com/albums/hh275/dgrubbs1/Causes/

We just returned from seeing Dr. B this week for DD11 and I specifically asked about probiotics to avoid C-diff issues. She's never had it, but of course, none of us want to add that to the list. We have had her on Culterelle for a long time and his nurse told us that is what he suggests. We started her on the pediatric Culterelle and at first, she liked the taste, but then decided she couldn't take it, so I switched her to the adult capsule & have somewhat better success getting her to take that one - he and the nurses both said the med refusal will improve (along with refusing baths, brushing teeth, hair, school, etc). He wants her to take the adult capsule twice daily.

We also have approval through Blue Cross of California, but it came with the help of docs (Immunologist here and Dr. and very wonderful office personnel in Dr. B's office. I was fully prepared to do battle and tell them they would be paying for longer term hospital admission if not approved, so take your pick, but didn't have to go down that road, thankfully. I'd be happy to provide more info if anyone wants it... just PM me as I'm really out of it right now from our trip, but I'll notice a PM and make time for anyone here needing help if I am able to assist.

Phasmid... I'm still reeling from our trip to see Dr. B and the related travel home, but I saw this while there and looked for it this morning to comment. I am too out of it to be clear on anyone's history other than my own DD11 right now, but wanted to let you know that we were able to get IVIG approved for her through Blue Cross of California. I don't know if this helps you, but hope it will assist in trying to help your child and that things are improving soon... LOVED your IVIG poem!!!

Oh, what beautiful, wonderful news... soooo happy for you both!!! ♥