KAS

Hello everybody! Long story very short, we're going in for IvIg with Dr K soon as well, and we have UHC. I am just starting into figuring out how to do this and if anyone has had success with UHC covering (or partially covering) IvIg with Dr K, I would very much love to hear it! We're starting the steroid burst in the morning and are hopeful and curious to see its effects. Once I come up for air, I'll post what we've been going through the past half year. Hugs to all you mamas and papas out there!!

I have come up for air! Thank you for your replies. In response: dcmom: I am having a hard time finding out exactly what each doc thinks in terms of PANDAS and their treatments. Their nurses are pretty vague for the most part, saying "the doctor would be happy to discuss those options" with you or whatever. I wish there was more of an ability with a specialist to do a quick q/a session prior to deciding if it is worth your time going to them. I know...dream on! The immuno in Omaha has our daughter (60 pounds, 7 y.o.) alternating every three weeks between 250 mg erythromycin and 500 mg amoxicillin. I think they are both proving themselves effective, but again...it takes her a good 1.5 weeks to build up an effective dose in her system, so she is symptomatic about half the time. I asked the immunologist if there was a name for this alternating antibiotic protocol, and he referred to it as "the UCLA protocol." Thanks for your insight on the docs and their treatment choices...stay tuned!! momto2pandas: Thank you so much for pointing out the "who's driving the bus" question. I will keep that in mind and point-blank ask the immunologist (if it sounds like his treatments are what we are hoping for) if he is willing to take us on in this manner. I have decided to put the pediatric neuro appt off until after the immunologist appointment since they are not in cahoots (ped neuro and immuno) and I am not getting much from his staff in terms of what he does with PANDAS patients, and after reading familyof4's comment on her experiences with his office. I agree that the psych symptoms resolve with proper PHYSIOLOGICAL treatment, not PSYCHO-PHARMACEUTICAL treatment, and heck, if our daughter ever needs some counseling, a plain old psychologist trained in this area should suffice, so I am going to give the immunologist (Gelfand) a chance to justify why we need the psychiatrist appt, and if it doesn't sound logical to me, I will be canceling this appointment. It's crazy how I'm having to strategize these specialist appointments. Thanks for your comments!! Elizabeth: Dr Kelsey's office told you it wouldn't be a good fit...wow! The likelihood that we'll be going to that appointment is lessening even more. Thanks for your input on this. And yes, we need some good PANDAS docs in town for sure!! familyof4: How discouraging, that a doc listed on the Saving Sammy facebook page is not interested in seeing PANDAS patients! I didn't get this message from Dr Bernard's staff, but they wouldn't throw me a bone at all when I prodded about what treatments he considers. Ugh. I called to postpone this appt and they said to call back in a couple of weeks to see if the new schedule is out. I really just want to get in to this immunologist, Gelfand, and see what his ideas are, and go from there. Heather, please private message me if you ever want to get in touch by phone or meet up sometime. We should start a Denver support group (or rather, share-your-resources-and-experiences group)...who's in??? So based on the feedback, looks like two of the four docs I mentioned have some pretty fundamental strikes against them based on others' experiences with their staff. I'm going with the immunologist/rheumatologist double-punch appointment day for now. I also will be taking our daughter to the pediatrician tomorrow b/c of three days of a fever. Her teacher said strep is running around the school. SWEET! Hopefully the new pediatrician will woman-up and join our cause; she said she has another patient with PANDAS and is interested and willing to learn more about it, so hopefully that is truly the case. Because of this forum, the snippets of info I have been learning through the years, and the confidence I am gaining in asking questions of medical professionals...I have hope that our daughter and your kiddos will lead as healthy and "normal" a life as possible. Stay tuned! And thanks for your support! Sara

Hello all! I have five minutes to kick this post out, so here goes. We moved back to Denver from Nebraska this past month and our daughter who has finally recently been diagnosed with PANDAS has now all sorts of appointments scheduled with specialists. If anyone has any thoughts on the specialties (necessary, unnecessary) and/or specific docs, please let me know! Our immunologist in Omaha, Dr Kobayashi, has referred us to National Jewish here in Denver, to see Dr Gelfand. After a phone call for her history, etc, he has "accepted" our daughter. However, his scheduler says he also wants her to be seen concurrently by a rheumatologist (Dr Dragone?) and a psychiatrist (Dr Kelsay). He will also be doing skin allergy testing at her appointment. Two days before we are scheduled to see the new immunologist (Gelfand) and rheumatologist (Dragone), we are scheduled to see a pediatric neurologist, which Dr Kobayashi had said we should set up. She is set to see Tim Bernard (pediatric neurologist) who I found on one of hte PANDAS sites I believe. Thoughts? Suggestions? I hate to run her through any unnecessary tests and appointments if it doesn't need to be. Sorry, I have a visitor now and cannot think straight! Antibiotics are working for her, but Kobayashi has her alternating between two (each for 3 weeks) and it takes her about a week and a half for her body to adjust and her tics and hyperactivity/etc to level out after we switch each time, so basically, half the time she is doing well, half the time not. Okay I will write more soon. It's been crazy with the move and all that goes along with that. Hope you are all well. Elizabeth, I so need to call you up soon!!! Doug, thanks for your call. Sam...hope you are doing well!! Talk soon!!! Sara

Kelly, thank you! I am benefiting from your wisdom and experience for sure. Curious...what are your sons' ages? ALso, PenVk...what does that entail, and what is your regimen? Do you try to avoid all dietary Omega 6 (nuts, eggs, poultry, whole grain breads, etc)? Did you have food allergy tests performed? And if you have school-aged children, what do you tell their teachers...do you have them look out for symptoms or just say to ignore any weird habits or to let you know if the child is irritable? I have already requested our preschool to not use hand sanitizer when she was licking her hands so much, and she'll begin Kindergarten in the fall. Any follow-up on these questions by anyone would be appreciated! Thanks, Sara

Alright, thanks. That helps me piece things together. A couple of more questions for you all: 1) Do you find yourself avoiding situations (play dates, certain places) where your child might catch a bug? Such as, you know a friend's kid is sick, so do you re-schedule a visit with them? Are you careful to limit exposure to siblings when they are ill? It's so hard when we have a 3 year-old running around with the 5 year old all the time! 2) In-between break-outs, do you continue all of the measures, such as strict diet, probiotics, this Epsom salt thing (what does that regimen entail???), etc, or can you slack on it some? I am guessing you keep it up to keep the immune system at its peak to avoid the infections altogether. 3) Do you give your child Min-Chex or that Natural Calm Kids stuff? 4) Did I read somewhere to just give the Omega 3 and purposefully not the Omega 6? If so, why? 5) Do your kids have a hard time getting to sleep, only to wake late, telling you all of their dreams in detail? My daughter is doing that now, and I did it throughout my childhood!!! 6) What studies have you seen that show the effects of long-term antibiotic use? I know I used some for my complexion as a teen-ager, for a few years. Hmm... 7) Do you follow the advice of "don't acknowledge the tics when you see them because they only make it worse?" 8) Do you try not to bring your child with you during consults with your pediatrician, or at least when you are discussing your major concerns, so the child doesn't know how concerned you are about this condition, adding to their own stress about it? I am hoping to bring my husband and keep him and the kids out of the room when I do go in to discuss this with the pediatrician, then bring her in later???? THANK YOU ALL SO MUCH! Our daughter is having a better day today (pretty much no OCD tendencies that are noticeable, and less of the licking!!!!). Of course I don't know if it's due to the infection being extinguished, the diet changes I started yesterday (iron drops, probiotics, more natural foods and no milk...she actually liked the Rice milk this morning in her cereal!). Unfortunately the fish oil has strawberry essence in it...her one known food allergy. I'll go exchange that today. You are all truly Godsends to me at this time. Hugs from Denver!!!! Sara

woops

So the Keflex worked for the rash; if we get the ASO strep titers done and it shows she has strep, are you saying then, that some other antibiotic might help with these OCD/tic symptoms, even if she doesn't have the sore throat? Just still trying to piece this all together. THANKS! Sara

She is saying it's better now. A week ago when we went in for the skin rash, I had him check her throat, and his visual scan of it was alright, as it is now, but I should have had a strep test done, huh? At this point, wouldn't it be gone due to the Cephalexin? Thanks,Sara

Great, thanks so much! I appreciate the time it took to look this up for me. I've got my sister-in-law (PA) so hopefully she can find out more about this, and I'll of course do some researching as well. It seems there's always something to be researching. What did people do before the internet??? LIsten to their PCP and just suffer and wonder? Sara

Kim, thank you. She has had low iron as a baby. ??? Do you have some web links to these studies? I would very much appreciate it! You may be onto something here! Sara

THANK YOU. I'm sure it gets easier to process after the initial realization kicks in, but I am going through teary times. I am already prone to tear up as I am awaiting hip scope surgery on myself and have been in such pain for 15 months now. I'm guessing that my daughter has been worrying about this, too....poor gal! I'm excited to get onto a healthier eating program (though we aren't doing too bad now...). I can't wait to get that book. Right now we are having issues with her wanting to be first, prettiest, best, when playing with her little sister (3 y.o.). Does anyone have advice on that, or sibling issues? Bless you all! Sara

Thanks, Faith. I was considering the hand/finger licking a tic...is that correct? She doesn't do eye blinks, did some throat clearing yesterday when she said her throat was hurting, and I don't think there has been sniffing. Just the licking and the putting her fingers in her mouth quickly, then looking at me each time to see if I noticed. I would say that no, the OCD has not improved with the Keflex...but probably gotten worse; what does this mean? I'm curious what happens once we stop the Keflex in a couple of days (10 day course). I'm also looking back and am certain that the night I gave her a peanut butter wrap for dinner, her finger licking and hyperactivity was terrible during story time before bed. Man. Hyperactivity plagues us at present... Thanks, Sara

Hello. I am about 2 days into this research, as our 5 year-old daughter has recently had issues with licking her hands/fingers, and I am starting to log some OCD behaviors; such as, this morning, she stirred her cereal 10 times "for it to taste better," and told me how she counted her bites from one to ten, then back to one, and then there was only three left, so I counted them to three." Last night (and past few nights) she has had a hard time going to sleep, stating: "I have a not-so-good feeling" or "something isn't just right." I know I am preaching to the choir here, but it is so disheartening to see my precious angel suffering, and to know that there is very little I can do (or can I???). Her finger/hand licking has been just over a week I believe, and they are beginning to get raw. Of course at first we told her, "Don't lick your hands...yuck!" Obviously this was not hte thing to do, as it exacerbated it and I came to realize she had no control over this. Why I am considering PANDAS? She has had skin infections since the very beginning, usually under her left arm. I believe it to be "hot tub folliculitis" as she gets it after she takes a bath, or after we go to a pool sometimes. She has always needed antibiotics to help her heal from these skin infections, so she has had quite a few over the years (I need to gather my info together it seems!). Um, so last week the hubby treated her with a bath, and two days later she got the infection. She began her licking at that time. We put her on Keflex (Cephalexin) and it helped with the rash pretty quickly (now resolved). It is the suspension, so she is most likely getting the red dye as well. I have been reviewing some of your posts and have gotten all sorts of ideas (overwhelming!) to go on. Yeah, so we are waiting for better health insurance to kick in on April 1, at which time we can go see our favorite pediatrician. I am hoping that he is able to direct us to the proper ???neurologist??? or ????infectious disease specialist???? or ???Immunologist???? based on these concerns and their proximity to the infection. What specific blood tests could I be requesting??? Also, for those of you with PANDAS kids, how often is your kid symptomatic following an infection/illness? Her Immunoglobulin G was low when I asked for her blood tests in December (asymptomatic, not fighting an infection then). I didn't have any ASO or whatever, checked. I ordered some of the books recommended on this site and others, the one about the diet elimination, the home/school environment, and OCD child....maybe some more, I don't recall. I unplugged our "screens." I threw away the Easter candy. I also started logging the behaviors. ANd I've researched. That is it so far. I am just physically and emotionally drained by all of this. I am a worrier and trying to just ask God for guidance and peace about it all. I prayed over my sleeping child last night after she finally fell asleep and plan to do so each night, for her well-being, and for her to have a sense of peace through this all. It is spring break for her preschool now, so I am hoping that she will transition back into preschool without separation anxieties (she has never ever had any separation anxiety before) and that her hand/finger licking isn't picked up by the little radars of other kids, and that her teachers are good about not drawing attention to this (I have already contacted them). Please lend me any advice at this stage, as to what specialists to involve (in Denver), and if you have any advice about school or activities or how we can comfort her at night. I am just crushed at what this might mean for her in the future but so want to go about it the right way. THank you all so much, and I do look forward to hearing your wise advice. Blessings, Sara