T_Anna Posted February 21, 2013 Report Share Posted February 21, 2013 DS 14.5 had his IVIG a week ago Thursday and Friday. Procedure went fine. He seems a bit more "awake" cognitively and was showing a real sense of humor (honestly, I don't remember him being very funny). However, he still wont take a shower, change his clothes (it will be a month on Monday) or go out of the house. He invites a couple of friends over, but is not so open to people who want to visit him. His feet stick out of his socks and his hair is crazy, he doesn't smell bad, but it's starting to change. By the way, he seems totally fine when he is "up" lately, just looks like Tom Hanks in Castaway. For those who have had an unwashed child. How long can it continue? How much do you expose your child to visitors? This morning I cleaned up some clutter which included a sports bag of his with 2 half used Poland Spring water bottle. He flipped out! All out rage, which we haven't really seen. Later I found the two empty water bottles shoved in the cabinet under the sink. I looked at a few post IVIG posts and some say they began to see real results at 10 week, anyone see anything earlier in a teen? Any input, advice, is welcome. I realize we are living a pretty HUGE flare, but what's the longest it can last? We are on Doxycycline, Azithromycin and still 25 mg of Luvox. I would add more abx if I could figure out which. Oh, and since I'm venting, I'm tired of well meaning advice from the non PANDAS familiar. For example: Are you sure you gave CBT enough of a try? My brother in law is a pediatrician and says it has a lot of results. If you read this far, thanks. T.Anna DS14.5 Link to comment Share on other sites More sharing options...
pandakid11 Posted February 21, 2013 Report Share Posted February 21, 2013 Hi I think the water actually hurts them because of sensory issues. Try using a bucket with wash cloth. We are battling same issue. It hurts, no matter how gentle the shower is. Bizarre stuff, I know. Good luck. Link to comment Share on other sites More sharing options...
tpotter Posted February 21, 2013 Report Share Posted February 21, 2013 Yeah...I know pediatricians who even deny their own kids have PANS...even in full-on flair, and even when given NIMH and IOCDF info! Thank goodness for all us parents! Link to comment Share on other sites More sharing options...
Mayzoo Posted February 21, 2013 Report Share Posted February 21, 2013 My kiddo has the same issues. She says the water scares her. I give her a choice between bath or shower when we must go full water clean. The choice seems to help her slightly. We usually use a wash cloth bath throughout the week and wash her hair once a week in the sink rather than a full out shower/bath. Then again mine is just 11 and has special needs including SID. Link to comment Share on other sites More sharing options...
ChrissyD Posted February 21, 2013 Report Share Posted February 21, 2013 Dumb question but would he go swmming in a pool? Maybe you could book a hotel with an indoor pool? My son has IVIG last Thursday & Friday as well, go figure. No improvement yet but a lot of old behaviors are resurfacing and definitely more rage/anxiety. I'm praying its just the beginning of his healing. I'm hoping the same for your son T.Anna. Link to comment Share on other sites More sharing options...
nicklemama Posted February 22, 2013 Report Share Posted February 22, 2013 In my experience with IVIG twice, it takes many weeks to start seeing results. In DS's case, then you see a pretty rapid improvement, stalling for many weeks, then more slow improvement. Link to comment Share on other sites More sharing options...
Mayzoo Posted February 22, 2013 Report Share Posted February 22, 2013 Dumb question but would he go swmming in a pool? Maybe you could book a hotel with an indoor pool? My son has IVIG last Thursday & Friday as well, go figure. No improvement yet but a lot of old behaviors are resurfacing and definitely more rage/anxiety. I'm praying its just the beginning of his healing. I'm hoping the same for your son T.Anna. Not a dumb question IMO. We are unconventional, but in our 18' round pool that kiddo usually loves, we wash her hair in there if the need absolutely arises. I am certain most would think this is nuts or a really bad idea, but if it works with less trauma to her and less drama for me, I will do in a heart beat. Convention be darned if I can make my child's life a bit easier. She already has sooooo many difficulties she faces each and every day, I will do what I can to make all our lives a bit easier and less traumatic. Link to comment Share on other sites More sharing options...
ChrissyD Posted February 22, 2013 Report Share Posted February 22, 2013 Thanks for sharing your experience w IVIG Nickelmama. The waiting is so hard, especially after so many months of this flare. Mayzoo we've done some off-the-wall things for our son's well-being and peace of mind. Bathing in a pool is the least of it. Probably the only people who would understand are all of you. ;-). Link to comment Share on other sites More sharing options...
T_Anna Posted February 22, 2013 Author Report Share Posted February 22, 2013 Thanks everyone. I love the pool idea, but besides going to Dr. T's he hasn't left the house in a month. ChrissyD -here's to speedy recoveries for our boys. T.Anna DS 14.5 Link to comment Share on other sites More sharing options...
Mary M Posted February 23, 2013 Report Share Posted February 23, 2013 My dd was among the "unwashables". Improvement is slow post IVIg but it comes...the suggestion above about going somewhere with a swimming pool...it worked for my dd. She wouldn't bath or shower but a pool was perfectly acceptable...we chose salt water pools as chlorine can be an issue for my children. Link to comment Share on other sites More sharing options...
dcmom Posted February 23, 2013 Report Share Posted February 23, 2013 Hey T. Anna- sorry you are going through this- we had some difficulty with showering- but it did not get that bad- was not our main issue. I do, however suggest CBT- specifically ERP. I have two pandas daughters who we treat medically fairly aggressively (abx, steroids, iv steroids and pex), however I will say we have had flare ups where afterward the ocd just sticks. In other words, I can see them coming out of the worst- very much back to themselves, but one or two of the ocd issues is very entrenched, and not minor. We have found high quality (USF), tough, ERP to be the best medicine for the "stuck" ocd. In other words, my dd had a major flare where everything went to &*%$- then she had IV solumedral- and came back to us- personality returned, enthusiasm returned, happiness returned, some ocd disappeared- however she still would not go to school due to ocd- which was really tough on her. We wasted time trying to figure it out, then went to the ocd program at usf and bam- she got over it. So- she needed BOTH the medical intervention and the psych intervention. Not sure if this is where you are- but just wanted you to take another look at ERP- oh and- I won't go on a rant here- but you need a psych who takes action and gets results- and NOT a psych who wants to do a lot of "talking". Good luck! I have heard healing after IVG can continue for a full year! Link to comment Share on other sites More sharing options...
Mayzoo Posted February 23, 2013 Report Share Posted February 23, 2013 Thanks everyone. I love the pool idea, but besides going to Dr. T's he hasn't left the house in a month. ChrissyD -here's to speedy recoveries for our boys. T.Anna DS 14.5 Well, maybe this can help till you this issue under control with other methods: Home made waterless shampoo A google search to no rinse body rinses: My link Link to comment Share on other sites More sharing options...
cobbiemommy Posted February 24, 2013 Report Share Posted February 24, 2013 Showering and brushing his teeth were two of my son's issues as well. He still won't shower in the "kids" bathroom because some of his sister's hair (very long and curly) might be in there. The first IVIg and treatment for Bartonella helped a lot. Hang in there... Cobbie Link to comment Share on other sites More sharing options...
dut Posted February 24, 2013 Report Share Posted February 24, 2013 You can buy rinseless soap and shampoos, if he could/would tolerate those. Would he be up for a haircut/buzzcut? Link to comment Share on other sites More sharing options...
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