SarahJane
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Posts posted by SarahJane
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I've posted messages on the Oprah Show Facebook page & have already had one mom contact me for more info. Have a few others who "liked" my post. I put a message on the Oprah Show web site too. I hope that those who need the help get the help.
I plan to watch & DVR this show.
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I'm not sure about your case and the cyst...is he currently showing PANDAS symptoms. If so, then maybe it is infected with the absence of any other factors. If he's out of exacerbation, then maybe not. Seems like there's another parent here that their child had a sinus cyst---hopefully they'll chime in with thoughts.
But we're on 250mg of ZITHROMAX (46lbs, 7-yr-old) post IVIg. I'm sure Dr. K would dose whatever drug based on the weight. I am under the impression that he's been using zith vs. aug, but I'm not sure about that. We've been on daily for 3 months now...will be on it for a year (tho' the dosage may eventually go to every other day).
Good luck!
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@tampicc...I just noticed we have the same number of posts listed on our posts above: 188
Now I'm 189.
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I just sent in our 3-month post-IVIg update. Overall, we have had very positive results. Did I have a list of lingering symptoms? You betcha. I also listed many things that do not seem to be issues right now & things that are much better.
The following symptoms have NOT appeared or were much decreased/rare: Rages, Separation Anxiety, Resisting Haircut, Long Delays in Responding/Detached(rare), Hitting/Kicking/Throwing Objects, Not Talking to Us in the Mornings(rare), Slamming Doors(rare), Tantrums(rare), Insomnia(decreased), Forced/Fake Laughter(decreased), Opposition(decreased), Laying Down in the Couch Cushions(decreased), Age Regression(decreased but still immature), Sleeping with Parents(decreased), Sensory Seeking Behavior(decreased).
Issues that linger: general immaturity, attention span, appetite/limited diet, insomnia(mostly gone but inconvenient when present), perfectionism, certain OCD manifestations ("even" compulsion, not being interrupted when he's talking, directing us, TV obsession(diminished), splash obsession, and probably others)
Positive news: homeschooling is going well, successful public outings, improved impulse control, plays with his toys(vs. watching TV/DVDs only), he wrote a book/story(this was a big deal...used to do this all the time but stopped back in April/May during 1st exacerbation), mostly sleeps in his own bed, usually in a good mood, can stop a tantrum(NO rages!), more patience/less frustration.
In reading the list of things that are gone/rare and the things that are better, there's no way to explain how different things are now than they were 4 months ago when we were dx'd. I know that PANDAS parents can understand the list a bit better tho'. And for everything on each list, there are items I overlooked (good & bad). We've had some "flipping back" issues and some days are better than others. BUT, my son seems to be healing, and that is definitely the best news. And of course, like a good PANDAS Mommy, I'm knocking on wood that this continues to be the case.
For his 7th birthday last week, I took my son to a movie & out to eat with 2 buddies(brothers). In talking to the buddies' mom, she kindly said she thought I was just sensitive to everything as I was noticing behaviors at the restaurant. Yep. I NOTICE EVERYTHING NOW. The reason is that I don't know if something is a one time blip or if it will come back to haunt me as the sign that something was wrong again. BUT...overall, he is doing well. I am looking forward to spring and getting him to parks & outside playdates (because for some reason I'm less scared of the outdoors than the indoors & the germs contained therein). C'mon Spring!!!
So...this is my positive news for the day. Sunshine and Hope to you all!
Sarah Jane
P.S. Now I'm off to get ready for our homeschool music lesson for today...the Justin Bieber movie. Never Say Never!
(The lyrics to that song are fairly fitting.) -
I would also ask your child if any other students were absent that day. Since you're in the ADHD forum, I'm not sure if you're child is PANDAS, but I found last year that when a certain child was absent, that my kid didn't get in trouble. This other kid was "bullying" my kid (my child was afraid of him), was usually in all colors of trouble himself, & had a lot of strep (we were undx'd at the time tho'). Could be tho', that if there are disturbances in the room that it could lend to more distractibility & less teacher tolerance for "attention" issues.
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Swedo made a mention about possible language regression on the Coffee Klatch talk last week. The question was I think asking if a speech delay could be a PANDAS symptom (which she didn't seem to think so, but I know my son had a delay & we think early onset PANDAS but anyway...). I wrote down "language regression" & "immune response." I don't know if there is any research per se to back this up, but maybe someone else remembers better what she said.
I will also say that at times my son(7) does have this issue...is more descriptive at times than others. Sometimes he'll make statements that I know what he means because I'm around him 24/7, but others would have absolutely no idea what he was talking about. Or he'll talk around an idea, & I'll help him flesh it out a bit. (I might check out that book JAG10...thanks!)
I would also recommend doing your own private speech evaluation if you can. For one thing, you can maybe get it done quicker. It also takes it out of the school system who may have high requirements for speech needs & an already crowded schedule. Seems an outside view would be harder to refute. They should use your report...our district used ours when ds was in public preschool for speech for a year. It also lets you say that you checked it out as an issue if it proves to be a non-issue that they will not let rest.
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Right now we are daily zith at 250mg. We may go to every other day eventually, but ds seems to do well with daily. I owe Dr. K an update, so we'll see what he says (he mentioned we may consider every other day at 12 weeks). I'm cool keeping it every day & actually prefer it for peace of mind. (IVIg is stressful as far as hoping it will work & avoiding any exposure to any illnesses/infections.) We do a probiotic too, but I'm not sure we need it (not hurting tho'). He's also on a multi-vitamin & fish oil.
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Dr K.
Yes, I didn't think about the med paranoia being PANDAS. You're probably right. DS is on zithromax for a year. (Tho' the IV is going to be stressful. Was for our son too...think it is in general. We thought they were gonna have to sedate him to get it in there, but Dr. K & 2 nurses were able to get it done. After that, it was no big deal, & they leave the HepLock in overnight so you don't have to go thru it twice.)
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We did IVIg one month after formal dx. I had dx'd it myself for son by then as this was a 2nd strep exacerbation. Had found PANDAS during the 1st strep exacerbation about 3 months into it, but local dr didn't think that was it. Didn't think it was PANDAS with the 2nd exacerbation either, but now she's our ex-dr.
The 2nd exacerbation (Sept '10) was a lot worse than the 1st (Jan '10) & mostly debilitated him (and us) with the strange symptoms (OCD, rages, age regression, tantrums, insomnia, vocal tics, ADHD, etc...). During the 1st one, he was still functioning & going to school (was in trouble all the time tho' since we were undx'd). We are 3 months post-IVIg, & it did wonders for our now 7-yr-old (bday was this past Sat). Still more healing to come (some lingering issues), but he's in a much better place than he was back in Nov when we did the treatment. Just know that even with IVIg, your dd would be on abx for a year...so she'll still need to learn to take meds.All that said, I do think we had early onset, but it's impossible to pinpoint when it hit. He was exposed to strep just before he turned 2, but it was after his 1st ear infection at 2.5 that drs started questioning ASD possibilities. (No dx...not autistic.) We just had glitches along the way during toddlerhood, but they would clear up & leave us feeling like we were crazy. After having tonsils out, we had 1.5 years of hardly any illness. Strep brought a MAJOR change in behavior one month later, which lingered for 4 months & starting getting a bit better just in time to get strep again.
Good luck making your decision.
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Hey Emerson, it's nice to hear a lilt in your cyber-voice. I'm happy you had a happy birthday. I hope that it was just the first day of a very happy year. Sometimes solace finds YOU when you really need it, hence the verse. Here's to many future smile-filled days.
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You probably already know, but the UTI could be from a form of strep. Investigating the possibility of PANDAS for ds might be a good idea. If you're going to be there anyway, why not get Dr. L's opinion. She already mentioned it once. Good luck! Hope the kiddos feel better soon.
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HAPPY BIRTHDAY EMERSON! Hope you have a TERRIFIC day & a WONDERFUL 16th year on this planet!
SJ
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In the article, it's mentioned that the strep doesn't cause any problems for the family...that's not the case with your family. And it's a case of child being a carrier not giving strep to adults...adults are not as susceptible to strep as kids are (tho' some do still get it). I am behind you 100% in doing what YOU know is best for your children. That really should be enough response for your family members. I'd maybe write a list of symptoms your children experience with exposure to these relatives, and see if they choose to put them thru that. If they do, then I'd keep them away based on that answer alone.
And as far as why they can go to school, it could be that they're lucky enough to be in classes without any strep carriers & where the other kids mostly stay healthy. (Wondering if they're at public or private school.) Anyway, you know best and know PANDAS better than they do because you are directly affected. Maybe print out some more PANDAS stuff to give them (as I'm assuming you've been trying to educate them & have already given them some materials). Whew. -
How did they do the dx? Is it because he has/had recent strep? I wondered since protein in urine is a sign of it per the articles I posted the other day. What I read said that it usually clears on its own.
I don't know if it suggests higher propensity for PANDAS since it's a clinical dx, BUT it is an interesting issue. I do wonder if this post-strep glomerulonephritis is a reason for urinary frequency in PANDAS. Makes sense to me...but I'm not a doctor...just a VERY curious mom.
The proximity of these kids is also interesting since it's probably certain strains of strep that cause PANDAS. IF they already have a genetic predisposition & then get the same strain...makes sense. OR do certain strains lead to this post strep kidney condition? Hmmmm.Articles
http://www.nmihi.com...trep-throat.htm In talking about strep throat, it says "Involvement of the kidneys may be accompanied by high blood pressure or fluid retention (edema) the presence of blood or high levels of protein in the urine." Interesting! (bolding mine)
This link http://www.doctorslo...opic-14769.html says "One of the most common reasons to have blood and protein in the urine is a condition called post-streptococcal glomerulonephritis. This is a condition where the kidneys are damaged by the antibody complexes that form in response to a strep infection of the skin or throat."
Here's more about it: http://www.livestron...is-in-children/
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I'm glad that your visit went so well.
Sounds like you will have a very thorough workup & get some more definitive answers. And it seems you may get some answers even outside of PANDAS-PITAND behaviors. Hope there's lots of relief for your family soon. -
OMG...I almost forgot! How'd that happen when PANDAS dominates everything?! LOL!
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Yesterday, I was talking to my son & had given him 7 more pieces of popcorn (he turns 7 on Sat)...he asked for one extra piece & I didn't think anything about it. Then a few minutes later he says "I'm the kind of person who does things in two's." Whoa! I had him clarify & it turns out he wants to do things in even numbers. Said he'd been doing it for a long time, but when I asked if he was doing this last spring, he acted like I was crazy to think it had been that long. I have no idea when it started but he thinks he was doing it before we went to Chicago for IVIg in Nov. So WOW! We were at Target when he told me, so I was trying to get him to talk about it while he was being chatty about it, but not in an overt way. We've quizzed him a bit about it, but at 7 it's hard not to lead him to answers. It does seem like it's a real thing. Not that I would think he'd make it up, but I'm trying to be sure that he's not heard it somewhere or on a cartoon. I don't remember seeing any OCD characters on any shows tho'. He also didn't want to tell me too much about it since he thought I might want to start doing it too if he did. And tonight he told my husband that if he does have to do something to an odd number that his tongue is rubbery & his stomach feels wobbly...he actually quoted a little something from a character in his Grumpy Bunny books about feeling like he had caterpillars for breakfast...I knew what he meant. He has a splash obsession and did tell us that if he sees a splash on a show/DVD that he has to watch it 4 times. That's pretty specific. And it explains why he gets mad (and then I do too usually) when I tell him one more splash in the bathtub & he does more than just one. If he's on an even splash & I say one more, then the 1 is an odd AND it puts him on an odd number of splashes. Also sometimes I'll say 3 more splashes, but if he's on odd then that keeps him on odd & 3 is also odd. I'm supposing here, but it does make sense. I'm going to see it everywhere now, even if it's not that, so I have to be careful. I counted & we have 7 stairs but sometimes he jumps from about the 4th stair down...could OCD or he could just like to jump.
For the most part IVIg has been good to us. We are in a MUCH better place now than before. Still some kinks and things that will throw us for a loop (like revealing OCD, but I'd rather know than not know...wonder if he'll reveal any others). We've had the flipping of the pages back, but it has been more positive days than negative ones now. I hope we can just get thru flu & strep season. And since undx'd PANDAS hit around the end of Jan, we're coming up on some days that stand out to us (1st public rage, 1st time being called to school, etc...). He's still pretty immature, but that's better some days. Still has anger issues now & then and a few other things. There's still more healing to go. It gets hard now to tell what's PANDAS, what's regular "7" year old, and what's general brattiness...and what's just our PTSD/stress blowing something out of proportion.
So...I had no idea he had this type of counting OCD. Glad he's talking about it tho'. Thanked him for sharing & told him that he can share anything like that with us whenever he wants. Since he's not a teenager yet, I'm hoping he will keep talking.
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I don't know if it's common, BUT I got a flash & Googled "strep in urine, protein."
I found this link: http://www.nmihi.com/s/strep-throat.htm In talking about strep throat, it says "Involvement of the kidneys may be accompanied by high blood pressure or fluid retention (edema) the presence of blood or high levels of protein in the urine." Interesting! (bolding mine)
This link http://www.doctorslounge.com/nephrology/forums/backup/topic-14769.html says "One of the most common reasons to have blood and protein in the urine is a condition called post-streptococcal glomerulonephritis. This is a condition where the kidneys are damaged by the antibody complexes that form in response to a strep infection of the skin or throat."
Here's more about it: http://www.livestrong.com/article/161901-acute-post-streptococcal-glomerulonephritis-in-children/
I think I'm going to throw another thank you out to the universe that our new ped happens to do pediatric nephrology. Will ask him about this at our next appt. Seems like there'd be more out there about this & that there's a high possibility the frequent urination that's the anecdotal symptom caused by the edema, eh?
Colleenrn, this should give you some resources to ask questions. Tho' orthostatic proteinuria could be there too. It also reminds me that I too had protein in my urine during a sports physical when I thought I'd run track my junior year of high school. The dr misread & told me I had diabetes & I broke down crying...the nurse corrected him. Hmmmmm. I ended up quitting track after a week...was too tired & chose speech team instead since there was no running...plus the whole "you have diabetes" trauma freaked me out & kinda ruined the mood. I never went to the dr growing up, so maybe I'd had strep...can't remember & coulda been asymptomatic since my son is. Wow.
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Last year, my kindergartener lost outside recess completely on 5/5 with a month left of school. (One of my son's things was to not want to come inside...per the teacher at a meeting, she lost "days and days of instruction time because of it and she was DONE dealing with him...DONE!".) There was no discussion with me that it was going to happen. Apparently they'd been threatening him with it for a while. I couldn't get it reinstated as the principal was 100% behind the decision...when I emailed her about trying to get it back for him, she asked me if I was going to be there when he refused to come inside. I did eventually try calling the board but got the runaround there too & knew we wouldn't be back & chose to let it go. I will revisit it all eventually when I feel I can talk to someone there vs. screaming. We were undx'd at the time, but we were in constant contact about behavior. It was appalling to me that they'd take away outdoor recess from a kindergartener.
Sorry. Had an anger flashback. I hope that you are able to work this out for your little fella. Why do they have to make it even harder for our kids when it's hard enough for them already?! Boggles the mind! GOOD LUCK! Check the school handbook and the district web site. I'd found an obscure page that said they couldn't keep kids from recess as a punishment or require physical exercise as punishment. Of course, when I mentioned this to the guy at the board, he had an excuse as to why it was okay for the school to make kids "walk the wall" during recess when they were in trouble. Grrrrrrr. GO GET 'EM!
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It's a delicate balance, eh? You don't want to damage his relationship with the teacher. BUT there are issues that you need resolved for your peace of mind. Request another 504 meeting...you can have them more than once a year. OR just do a parent conference & request that the counselor &/or psychologist attend maybe...or request a one-on-one meeting with the principal. School has to work for you too...not just your kid. Maybe bring in articles for them to read or get a note from your dr. I'm sure others will have better advice for you. I ditched public school after one year of undx'd PANDAS because it was so bad. Good luck!
P.S. Maybe he could do some of the homework at school somehow. And surely she can either send you a note with the homework assignments or at least make sure he's got them on the correct date. That seems like a logical accomodation whether there's a 504 plan or not. Whew.
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I didn't see Dr. L (saw Dr. K), so someone else will have to cover if there's anything else specific you should do for the appt with her. But it sounds like you've done a lot!
I know the nice thing about talking to one of the experts is that they totally get it. They'll ask YOU questions to help them sort thru the info. They can read the symptoms and see PANDAS if it's there. It's really why those of us who suffered thru trying to talk to local docs will scream at newbies to get themselves to an expert asap if they can. You're lucky in that your local ped didn't dismiss PANDAS. I'll be thinking of you & your dd this week and hoping there's good weather for your travels. Hope things clear up for your ds too. -
Me: "I'm thinking this is really something big...I mean big like his brain...BIG."
Principal: "It's something." <with a bit of an eye roll>
(Conversation I had while I carried my kicking/screaming/struggling kindergartner out of the school after he'd refused to come in from recess...the principal carried my purse & his backpack. I'd been called to just come talk to him & get him inside but I wasn't about to leave him there for the rest of the day. He was calm when I got there out on the playground with the principal holding him. Was calm while I talked to him & held him. Agreed to go down the slide one more time & then we'd leave, but then FREAKED OUT again when I tried to leave with him. This was not the only time I'd been called to the school. We were undx'd at the time & hadn't heard of PANDAS...I was thinking tumor. He did end up with an anxiety dx, which was aggravated intensely by the school--I'm sure you can imagine. We eventually stopped punishing him at home because he was in so much trouble all the time at school. We homeschool now.)
"We just need to pray about it." (School nurse after I'd been called to the school for Jesse after a different meltdown. We were still undx'd.)
"It's not PANDAS because he's had negative strep tests." (Ex-Ped explaining why my son did not have PANDAS. I had finally found PANDAS on the Internet when I connected his Dec strep to the behavior change that began in Jan...this was May. We visited the dr EIGHT times from March-May to discuss behavior changes & to check for strep after exposures at school. She'd said the behavior change would have had to have happened within a month of strep...I was like EXACTLY!, but to her, it wasn't PANDAS.)
"We have PANDAS patients (twins) who get an eye twitch when exposed to strep, but it goes away as soon as they get antibiotics." (Ex-Ped explaining why my son didn't have PANDAS when I brought my asymptomatic son for a strep test because he'd had cough and then began a vocal tic, breathing tic, obsessions, compulsions, rages, tantrums, defiance...just no sore throat or fever. And of course, the swab was negative, BUT...the culture grew, & they called me on Sat to tell me he did have strep! Got abx at this visit by about breaking down & asking her to run titers. We hadn't seen her for 3 months because the summer went well after I got him out of school. He got sick at end of Aug & this was mid-Sept when the rages came back & I took him to dr. I should say I'm not knocking the kids who just get eye twitches with PANDAS tho'...not at all...just figure there's more to it than an eye twitch or there will be someday maybe.)
"His rapid strep today was negative. However we will send for an ASA and an anti D Nase testing to see if he has had a recent infection. I do not think this is a classic PANDAS presentation. Mom is just very frustrated with behavior right now....He looks pretty good to me here in the room today." (Ex-Ped in notes from the above visit before she knew he was positive for strep.)
"It's not PANDAS because his titers aren't high enough....His symptoms would have cleared within 24-hours of being on an antibiotic if it were PANDAS." (Ex-Ped per phone call when I called back to talk about the positive culture & PANDAS. Got referred to neurologist about an hour away who I learned doesn't really believe in PANDAS but apparently treats other patients she has with it(?). Was also told <again> to call a psychiatrist for SSRIs. Those particular symptoms did clear within about 5-6 days after starting meds (just not in 24-hours), but they were of course followed by a bunch of other symptoms & then 2 months of &$#%@ until we got IVIg in Chicago. In her notes about this call she wrote, "His strep actually did grow overnight so he has an acute infection, just not a past infection. Mom is again very upset about this. Is really wanting this to be PANDAS." Like anyone would WANT it to be PANDAS. And wouldn't a current strep infection trump a past strep infection for PANDAS?! Plus, the only reason she ran titers was because she didn't think he was positive for strep, but he WAS positive for strep! Geez.)
"Based on history, I do not suspect this to be PANDAS. I suspect that illness in general is a stressor that may result in exacerbations of anxiety and behavior issues, but I don't see any clear association with strep infections infections in particular." (Our local 2nd opinion dr wrote this in the notes from our visit. Ummm...isn't that kind of the defition of PANDAS?! Illness exacerbates anxiety & behavior issues! And my son DID have very clear associations with strep, but apparently, I was the only one who could see it. The dr also went on to say that she felt my son was autistic/PDD-NOS due to his speech delay <that he had when he was 2 & cleared totally with therapy/age...he was 6 at this visit> & a few other issues that we pretty much attribute to early onset PANDAS now, especially since he'd been screened 3 times by drs qualified to dx autism & they said NO autism. This was all after I gave her a 2-inch binder full of medical records & a spreadsheet that not only documented the 2 dx'd strep cases he'd had within the past 9 months & the resulting behavior changes, but I also included a spreadsheet that documented every illness & behavior changes we'd noticed since he was 2.5 and had his first ear infection. Obviously, we chose not to move our care to this practice, despite the fact that the dr told me she did treat other PANDAS patients. Really?! She also missed an ear infection that was dx'd at an Urgent Treatment. Grrrrrr.
"PANDAS isn't his expertise." (Receptionist at my family doctor's office told me this when I called to explain our situation after being dx'd with PANDAS, & we were trying get my son a steroid burst for symptom relief. She didn't let me talk to the nurse or dr myself, but relayed my story. As you know from above, we'd silently fired our pediatrician. Then I silently fired this doctor. From this dr, I got referred to the local university pediatrics...when I called they said call an immunologist...immunologist said to call a neurologist. We finally got meds from our ENT, who got to see our usually sweet boy in full "autistic-like" rage at his office the day we had our visit.)
WHEW! Luckily, when we got our dx, Dr. K said he was 95-100% sure it was PANDAS because there was nothing else to explain all the symptoms & did IVIg. DS is at 11 weeks post-IVIg & while he's had some blips, he is so much better than he was & we are still hopeful.
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EEK! Knowing you just had IVIg & it's been pretty successful, I'd be very hesitant to get this shot. Check with your doctor. Maybe try to get a waiver. Why does the school say he has to have it right now?
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Hi! I know many of us sent Thanksgiving and/or Christmas cards to researchers & experts. Valentine's Day is around the corner. I know I for one LOVE
what they're doing for our kids. Figured I'd send them a "mushy" card to let them know I appreciate them. Just an idea that popped into my head, so I figured I'd capture it here (and share it) before it popped back out again.
what they're doing for our kids. Figured I'd send them a "mushy" card to let them know I appreciate them. Just an idea that popped into my head, so I figured I'd capture it here (and share it) before it popped back out again.
Almost 2 Years Later
in PANS / PANDAS (Lyme included)
Posted
Thank you very much for the happy news. Wishing you & your family continued healing and health!