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Posts posted by eljomom

  1. Well, I am pretty sure I've lost some friends here on the forum. I actually wish I had never posted what I did. I have a LOT to lose here. I have a generally functioning, pretty happy little girl, who happens to have a ton of tics and some ocd, etc....which I am fairly certain is linked to illness. There are parents on here who's kids have one tic and some ocd, and the child is debilitated. IF my daughter were debilitated, it would be a no brainer. I realize there is also a lot to gain, but to lose her happiness, joy and functioning, possibly give her something to affect her down the road from sharing blood products, psychosis from steroids.....so I am in a fine balancing act with this. I have been following the premier pandas specialist's lead (no, haven't pulled tonsils, I admit), which I found out about from here. I am trying to ignore tics, as this doctor told us visit after visit (5 in all so far), have asked to up the very low dose of zithromax, and been told not to, that it's high enough, went to Inf. Disease we were sent to, ENT we were sent to, I have asked to test dh and I for carriage and was told adults aren't carriers...this doc is all we have right now. and now people are upset with me for following the pandas specialists lead and not the forums. I come here for information, feedback on what has/has not worked with different cases, etc. I know I am probably pathological myself at this point, and a shrink is probably in order. I don't feel I am a "special case"---I feel WE ALL ARE SPECIAL CASES! I am working on getting the ball$ to ask for money to get a second opinion. I don't have the cash for an LLMD.........


    Please forgive me for ruffling feathers here.....for not taking well-intentioned advice. I appreciate all of your input so much. I really do.

  2. Gosh---I am truly sorry to offend everyone. Again, the Post article seemed VERY clear cut to me!!! Kid had had strep. Kid goes bonkers. Kid gets better. Kid gets sick again. Kid takes 4 weeks of antibiotics, and gets well. Well, after a circle of craziness before trying the antibiotics.


    YES, I think my kids are predisposed to an autoimmune reaction to infection. HOWEVER.....we do not have the clear cut "FLAIR" that everyone seems to have here. We started with the germs a few years ago. Then added the tics 18 months ago...just a few to start. Then we added a bunch more, with some handwriting issues. NEVER DO THEY STOP. This is what makes me wonder. There is never periods of "subsiding" of symptoms. Just "always there" and "worse."


    I do make my husband come to appts. He's the one who says "she's happy"---because he doesn't pay attention to the tics, or the tapping or huffing, or any of it. She's just a pain in the a$$ sometimes, quirky...yes, he's still on that path. The tics will just go away. Lots of kids have tics......Ugh, I can't even go there right now.


    I have tried to video, but she is too onto me, even if i pretend to text and use my cell.....

  3. Thank you beesknees....I don't mean to frustrate everyone. Gosh. Again, if we were "clear cut" case, I would have jumped ship long ago and set sail. I do hope people will continue to share opinions here and not take offense if their suggestions are not taken. Again, we are all in the same pot of stew (our kids are having neuropsych issues), but some of us are potatoes, some are meat, some are carrots. They all have the same symptoms, but can have very different causes, courses, and treatments.


    Beesknees....I made an appt. at a local immuno (husband can't really argue with that.....no travel per se, we've hit our in-network deductible, so no cost (well, still need to check that). do you have the list of what dr. b tested for? I would like to bring it to this immuno, and maybe get the ball rolling. Who knows, if he even knows a lick about pandas, but if something shows up, then maybe dh will be willing to pursue an apt. with dr. b.....



    2 things:


    1) I quote you: "I know if I go to Dr. B or Dr. K, they will offer IVIG. So I don't go, because I don't want the "one size fits all" treatment protocol".


    I have had a consult with Dr. K and and we are currently in Dr. B's care. They are very different in their choices and approach, as well as their belief system re: PANDAS. Dr. B at no time jumped directly to, or pushed IVig. To the contrary with us, he immediately ordered thorough testing for my son and his well laid plan was to try an abx combo first, then consider steroids if there was no change, then "discuss" the idea of IVig as a last resort. The testing and the results of the abx protocol says the rest for now.


    2) I quote you: "Also wanted to say that, given our family history, what are the chances this would really be Lyme"?


    I have a huge family hx of Strep, Scarlett, Rheumatic, some OCD as well. It is believed that I also had Strep:PANDAS as a kid. I have to say that I really questioned the idea that Lyme could be present, especially since we moved here from Denver. I was floored when the tests returned as +. However, it is not a question of EITHER Strep:PANDAS OR Lyme, but BOTH. My son clearly has Strep:PANDAS, as evidenced by his obvious history. However, his inability to recover is due to the Bartonella and Lyme thrown into the mix (likely both from the same tick bite). Now that Dr. B has tested and discovered this (rather than starting IVig immediately, which he would not do), my son is recovering beautifully because the right abx are being administered to the presenting infections.


    I feel really frustrated that we are all trying to provide some ideas and that they are being rejected. I hear you when you say you don't want to make it worse with various treatments, etc. however, TESTING seems to be what you are after. Therefore, GO TO A PANDAS PRACTITIONER THAT WILL ORDER ALL OF THE NECESSARY TESTS. There are some - that is why we made the trip to Dr. B. We knew he would test and that's what he did. Plain and simple. So, if this is what you want, go and get it!

  4. I made an appointment with a local immunologist. Maybe he will run some of the tests to rule things out? Wouldn't it be wonderful if we could get local docs to communicate with pandas specialists and learn/share ideas and info? So I'm taking a leap. Don't know if this doctor will even know about Pandas. I got his name from our ped. Looks like he did some time at NIH, so maybe he's at least heard of pandas through Swedo being at NIMH.


    Anyhow, I was wondering if someone who has recently seen Dr. B has a copy of what he orders on labs at first visits? The full battery. Hoping I can bring it to this immuno, and he will respect is since it is coming from a reputable fellow physician. I can't imagine Dr. B would have it a secret....they can't be trying to monopolize the pandas scene, right? :wacko:


    Anyhow, would be grateful if anyone could share the list. Will clear box in case you want to PM me (and i can send e-mail).


  5. P.Mom....now I've clearly offended you....that was not my intention. I am sorry if you took it that way. I do understand your baseball anology....but we are not all walking in the same shoes. Our case is more complicated and less clear-cut than many on here...that's all. And I also have another roadblock that I don't mention on here much......my husband (not "blaming"....but...) is VERY VERY VERY VERY against anything aggressive. So my "hands are tied" truly here. He has said at appointments that he doesn't want to "do anything over the top"---so unless someone somewhere....be it a parent on this forum, or a doctor, or god-forbid she goes downhill.....can convince him otherwise, I am "paralyzed" in more ways that me just not "getting off the pot" so to speak. So I come here, in some ways, hoping for the golden egg I can present to him. Someone who knows something, or find a doctor who will tell it like it is to him......that one nugget of information someone earlier posted.....that might change his thinking.


    Geez....the baseball thing...,,it was an analogy! Best wishes to you and yours , Eljomom.

  6. Aaah--okay, thanks momofgirls....I think something you said may have just let me see the forest through the trees. "It's the response that is genetic not the infection." So my father-in-law definitely had an autoimmune response to strep (his mother died in childbirth while delivering his younger brother, so noone knows his symptoms, and he has been dead almost 40 years). Maybe my brother has Tourette's and OCD because of a response to an infection? But still has Tourette's? Ugh...I thought I had it there for a minute, but I think I see what you are saying. I do think there is infection here.... 2 of my girls who share a room, and are together all day every day (homeschool) are on a very similar tic/ocd profile the past few months (albeit, my older one is not seeing a doctor....yet). Seems to be more of a "contageous" infection if you ask me.


    Also wanted to say that, given our family history, what are the chances this would really be Lyme? We've got TS/OCD AND RF.....so the chance it would be Lyme?? And my 9 year old ticcing/touching/tapping worse same time as my "pandas" dd?


    I think you are missing a very key point with your line of thinking as quoted above. Most parents on this forum, despite differential diagnosis of lyme, pandas, tourettes, OCD, and RF etc...would agree that each of the discussed illnesses have some sort of underlying immune disfunction triggered by infection. For some it's strep, some it's much more including lyme. You keep talking about your family history of tourettes and OCD versus pandas. It's the response that is genetic not the infection. So yes you could have Lyme disease causing your tourettes. Do you really think they are all so different? Do you really think it's one or the other? What are the chances Lyme is a factor? Highly! I am just suggesting that an infection, especially a combination of ugly chronic ones are causing what you know as tourettes.

  7. dcmom---I appreciate the time you have given me. Please understand when i say this, that I am not angry with you, but just trying to explain my situation is VERY different from many on here. You have a "classic" case of pandas. Major exacerbation after known illness....debilitating, antibiotics help, immunemodulating helps more. You don't have tics. You have ocd. You don't have a family history of BOTH Tourette's/OCD AND Rheumatic Fever.......complicating things. Yes, I have a child who is "happy" in the sense that she has happiness in her days, WHILE she is ticcing ALL THE TIME, tapping, evening up, etc....but yes, she has happiness each day. She also has unhappiness every day too....when she gets frustrated, it's not just "miffed" but it's an unreasonable response. But this has been going on for years. I DON'T have clear cut beginning point with all of this....just the hindsight that I had a kid who was always sick, who was a pain in the a$$, clothing bugged her, germaphobe...but never a clear-cut pattern with relation to illness. Until the big tic-fest started after the high fever....which has never left. I have been told that TS can be like this too. So my case is different. I don't want to pull the trigger until I am certain, or more certain, that i should even BE trying to modulate my dd's immune system. I know if I go to Dr. B or Dr. K, they will offer IVIG. So I don't go, because I don't want the "one size fits all" treatment protocol.


    I'm sorry if it's seeming like one big pity party. I want NO PITY....none whatsoever.


    Maybe this isn't the place for me, if me not jumping into the deep end and calling it "going down swinging" makes me pitiful. I put all my eggs and $$$ in one basket with the so-called TOP pandas doctor, and we have ONLY been offered rabbit trails. The one time steroids were mentioned, I simply asked if we should test for Lyme first, and was told, yes, of course. I am tired of being the one thinking of those things. Steroids have not been offered since, only this or that specialist, and tonsillectomy. So if immune-modulating is the key, why the tonsillectomy for a kid with no strep, and small tonsils? This is not protocol of the other specialists, so.....anyhow, forget it....NONE of us (that I know of) are doctors here, we are just parents plugging whatever worked for our kids....which is great...it gives options. But I am NOT sure, still, that this is even pandas at this point....with no letup in symptoms.


    I understand if nobody responds to my posts anymore....I know I have used up my fair share on this forum.

  8. P.Mom...see my reply to ....gosh, I don't even know who's post above, about the difference between stepping up to the plate and swinging in baseball, and swinging on my daughter's life.....she could get WORSE from treatment.....and I'd never let that die.....I am not taking offense...I can see why you would say what you did, honestly. There are just too many things that would be easy enough to look at, and rule out, and I would feel more comfortable taking a plunge. But I can't get answers, certain testing, such as the stinkin' c3D....or EBV, for crying out loud....

    So, next step is where to go next. Clearly, after asking out pandas doc if we can change to high dose zithromax, or something, and cannot get a reply, I am done.


    Eljpmpm......really..you are ready to give up without even REALLY trying? Come on! You did antibiotics.....that is it. There are several other PANDAS treatments you have not touched. Some where even suggested to you and you won't do them. I will put it like this......when my boys play baseball and they step up to the plate.....we always tell them....."if you are going to go down ( strike out)....go down swinging.". Eljpmpm.....time to get off the pity train....time to quit finding excuses and blaming others....time to quit being afraid to try. Time to step up to the plateand start swinging........if you are going to go down.....go down swinging.... don't go down watchingthe ball go by. Your daughter deserves it. Sorry if this upsets you or anyone else.....but someone has to light a fire under your $$$!

  9. Thanks Kayanne-

    I think the problem I am having is that I am still not convinced there is NOT active infection going on in some way....but Dr. L won't test for anything but lyme, myco p and strep. I'm not, and have not been, comfortable just saying "well, titers are normal, so there's no active infection" nor am I okay with NOT testing for viruses, etc....even though we may not "give anti-virals." The more we know, the easier it is to make the right decision.


    I agree that this is an immune-mediated, but feel that steroids are a temporary band-aid, while IVIG or PEX may somehow reset the immune system? I may be totally off here on this one. We wanted to wait on steriods for Lyme testing, and wanted to rule out other active infections before starting steroids (which I think isn't unreasonable) and she sent us to infectious disease, which was a waste of time, money, and emotions...thinking we may get somewhere. Since then, Dr. L has been on the strep trail...removing tonsils is her "treatment du jour" it seems lately from postings on here and speaking to a few other parents. I am not comfortable putting all my eggs in that basket, when I feel that strep quite possibly may have had very little play here with dd. So no steroids for us, no IVIG, no PEX. My daughter appears "happy" (meaning not freaking out) in the office for the 2 minute look-over, and so we just slog along. Trying to "ignore the tics."


    I also think maybe the people who benefit the most from steroids are those who receive them quickly after starting an "exacerbation." I can't believe for a minute they would be the golden egg, after years of symptoms in hindsight. We are CHRONIC....and that's the part that gives me pause....



    We've been at it for more than 2 years and things aren't perfect . . . yet. But they are night and day away from where he was at his worst 2 years ago, and he continues to make small but measurable gains, almost on a daily basis. Most importantly, though, today he's HAPPY again, and so DH and I are happy again. And relieved, and grateful, and cautiously optimistic, and knocking on wood with nearly every breath.


    MomWithOCDSon, You've hit the nail on the head here. In eclairuse's thread, the intention of the parents who posted was to stress the importance of early treatment in order to relieve the family's suffering SOONER. If you know about PANDAS very early on, then it has been my experience (and others) that relief can can come as early as the end of a 10 day course of antibiotics or a month of prednisone. Sadly, for those children who go a long time without a PANDAS (or even Lyme) diagnosis, the recovery is longer and more involved.


    Elijomom, this is what was being put forth in the other thread. I'm sure no one who has posted on that thread feels that giving up is what you should do.


    Obviously, this is all my conjecture from my experience with Dr. L -- but I just want to say that she believes that PANDAS is an AUTOIMMUNE disorder, triggered by infection. If there is no evidence of ACTIVE infection, she is not going to prescribe full-strength antibiotics. She told me this is "immune-mediated". It, therefore, makes sense that she will want to move on to immune therapies.


    Her first line of treatment is steroids. The first time she prescribed them to my daughter (and only 100mg of azith daily) she told us that if we don't see significant improvement by the end of the month, then we would need to consider moving on to the other heavier treatment such as PEX or IVIG. Now, this is just an assumption of mine, but I would venture to say that she tries everyone at steroids first. She's just not going to skip an important step in a treatment protocol. One that is cheap, and has a relatively good chance of actually being the only treatment needed. I think this protocol makes MUCH more sense than a doctor who will diagnose a child as having PANDAS, and insist that they go right into IVIG. Using, a cheaper less invasive treatment approach is acceptable in all kinds of diseases and disorders, why should PANDAS be a IVIG/PEX "only" treatment protocol?


    I'm curious if there is anyone who can report that she didn't try steroids first, but moved them right into the heavier treatments?


    I also want to point out that I think Momofgirls had an excellent observation, about your daughter's negative reaction to Augmentin possibly being Lyme.


    (((hugs))) and prayers

  10. thanks smarty---those are wise words. and you are so right, I've dug myself a hole at times. I may have jumped along the way, but then hear something that makes me think twice. I know my options are pretty much to a) do nothing...accept it like it is. that one is just not sitting well with me. Had it been a different type of onset, with different health history, maybe. B) push for steroids, IVIG, or PEx....which may help, or may not, or may make worse (from what I seem to be hearing more and more), or c) go the Lyme route, which I have serious reservations about. or d) take an alternative course, which often sounds like replacing one worry with another. Replacing brain inflammation for gut inflammation, strep for yeast, etc... It's all the possiblity of doing more harm than good...what is the long term risk of IVIG? on their immune system? blood product? PEX= could be death. Steroids, worsening, a band-aid, etc. I understand everything has risk, but this risk involves my BABY, her health, well-being and life. I would DIE if I tried something and made her worse. I already lose sleep for all the times I didn't take her in for sick visits, etc....


    I am hopeless. I am paralyzed.



    eljomom -- i certainly don't want to offend you -- i do feel your intense struggle -- however, i don't think your immediate problem is what to do with treatment for you daughter -- i think it's your frustration, confusion, hopelessness and feeling of being paralyzed. we can all share that -- maybe not to the same level, but the same feelings. the more you post asking for thoughts and opinions, the deeper hole you're digging b/c we all have our different stories, theories, successes and failures.


    aside from pandas, the past year has been difficult for us (not to the level of when a child is sick and you don't know what's going on -- i get that, i've lived it too) -- but with our house on the market for 14 mths, decisions about where to school, - return to private that had troubles, to homeschool, go to a sub-par public, my need (finanically and mentally) to go back to work, etc. then in june, the house sold and us w/o a house to move into -- so, do we stay with parents, buy quickly, spend too much, do something temporary with possibiltity of switching school mid year -- etc. all with huge questions about what is best for school phobic ds7.


    here's my advice:


    obviously, i don't know anything about your religious beliefs -- use whatever, God, higher power, etc. that is right for you.


    make one list of all the possible choices you have with investigating/treating/accepting as they are, your daughters symptoms.


    then -- make a daily list of the things you need to accomplish in your life that you can reasonably complete that day, on the right of the page or book, and be sure to check them off when you complete them. then, on the left, make a list of the things you cannot decide or accomplish on yor own and ask for help in direction for those things. be calm and confident that you will somehow be lead in a good direction. it may not be the ultimate direction that will give you all the answers -- but pay attention and i think you will see some direction.


    as rough as this pandas journey is, i have been amazed at times that a short conversation or chance meeting or tidbit of information has lead me somewhere that has been helpful.


    good luck!

  11. Philamom---thanks so much. That is very kind...I remember offering the same thing when I first started this forum for people traveling to Dr. L.....it would be nice to meet another family, rather than stare dreamily at all the people with kids who just flit from here to there, unphased, not ticcing, tapping, sniffing things..... :)

    I'm so sorry for your sadness! I can really sense the despair in your post. I suggest an appt. with Dr. B in CT. I think he would be good to help you figure this out.


    I'm opening up my house to you (Philly Suburb) if you would like to stop here or stay overnight. His office is another 3 hours north. SERIOUSLY! My daughter would love the company of your daughter. My daughter really looks forward to meeting other kids when shes at Dr. B's center. She loves everyone - kids with tics, compulsions, screamers - she doesn't mind - if you play with her she's happy.


    I would really consider another opinion!


    edit- I also would argue for an abx rotation or stronger dose. Zithromax at 100mg is too low.

  12. Christianmom---How are you testing mold?


    LLM -- Are either of your children's only symptom OCD? I was so surprised when my son's test came back positive as he really had no symptoms other than OCD and some hypoglycemia. Also, when I had him take the urine sample, I didn't know about not using the first morning urine, not exposing the sample to light, or adding 500 mg. of ascorbic as a preservative. So basically I made a lot of mistakes with the sample. Is that OK? I would think my mistakes would have made the test come back negative instead of positive. But it came back 30.5 which the tests notes as "extreme" positive. So with all my mistakes can I assume my son would have come back even higher had I done it correctly?


    Also, do you think having my naturopath guide the KPU treatment would work? I have an excellent naturopathic doctor who is very accessible to me. I know Dr. T would have to stay involved to order testing, but I would feel better if my naturopath was guiding the treatment as Dr. T is so hard to reach. And as much as I respect him, he doesn't seem to be up on natural things.


    Also was wondering, since KPU is positive for my son, should I and my other children be checked as I read it can be inherited through the mother. We are awaiting mold testing as I know mold (and lyme) are possible causes of KPU as well. Thank you so much!

  13. I have been reading all the recent posts about quickly treating pandas. I did not. I did not know of pandas when my dd started to not want to eat anything that someone had touched at around 4-5 years of age. Germaphobe. I did not know of pandas when my dd also had (has) major issues with clothing, shoes, socks, underwear, armpits of shirts, etc. I did not know to look at her MANY illnesses and correlate them with her ocd-ish stuff that I chalked up to quirks, difficult kid, youngest (ie., spoiled/babied...). When the 3 tics started, I did not know to link it to illness. When I didn't take her in for 104 fevers over the course of over 2 years, I did not know about pandas. When there was a one-day high fever, and within a week of it, an explosion of tics, head to toe, increased separation anxiety, more ocd, I thought we had a sudden onset of Tourette's. My brother has Tourette's. My father in law had rheumatic fever. I did not know of pandas.


    After a few months of thinking my kid that I thought had a few transient tics had suddenly just taken a turn for the worse and developed Tourette's, I hit a link on pandas. I researched. I tried the pediatrician. I finally found one to test titers, 5 months later, and they were nonexistant. Not pandas, I was told. I found the forum. I had phone consult with dr. T. I had a 6 month wait for a neuro. at Childrens. I had a 3 month wait for Dr. L.


    We started abx with Dr. L, while waiting on Cunningham's tests. She as not certain about pandas. DD sits still in her office for 2 minutes she is seen. We get worse on Augmentin. Is this now NOT pandas? we wonder. or were we just too late? too late to have the wonderful relief of abx? We switch to zithromax....100 mg/day. Not even treatment dose. We ask about dosage at 3 consecutive appointments. We are told "it should be enough." We are told to NOT pay attention to the tics...they are the last thing to go, and they are no big deal...easy to treat with drugs. we tested Lyme. "negative" but a number of +s and IND"s. Many say "pursue Lyme." We are told by pandas doc to let it go, and if we see an LLMD, we would no longer be seen by this pandas doc. We question testing other infections, immune complexes, co-infections. "No point in it...won't be helpful," we are told. We are told we may try steroids, but then when we ask about testing other infections first, are sent to Infectious Disease. Wasted time. We ask why kids who are debilitated get a shot at "normalcy" with IVIG/PEX, etc., while kids who tic, head to toe, and have ocd, and can't draw anymore, but are "Happy" as our pandas doc has told us, do not get a chance to live without the symptoms. We are told to pull tonsils. No diagnosed strep. Tonsils are small. We are PITAND. We NEVER are symptom-free. We do not EVER have remission of symptoms since it all started. WE jump from these tics to those tics, these compulsions to those compulsions.


    I am hopeless. I am paralyzed. I don't know if it's just too late. Is it? Seriously here. Are we what Dr. Swedo calls "chronic" pandas? I wish she would reply to an e-mail. I wish our pandas doc would reply to a call or e-mail. I wish I didn't have to play doctor and lead. I wish I could clearly link dd's symptoms to specific illness. I wish I knew if she tics more from yeast, mold, allergies, hidden strep in tonsils.....yet we can't find out. I wish we had more money to go from doctor to doctor. I wish it wouldn't affect my child by doing so, making her think she's "abnormal." Is there any chance a steroid at this point in her illness (tics unremitting for over 18 months, ocd for who knows how long...started prior).


    I can't take it anymore. I stayed at AWANA tonight and watched her scratch her face...evenly on both sides, of course...then tap tap tap her face after every time she touches it. Smelling her fingers. Smelling everything. Blinking. Eye rolling. Scrunching nose. Hopping. Blowing on her hands. Dots all over her papers from tapping after every letter. The list goes on. But she appears "happy." So no treatment. Tourette's it is, I suppose. And OCD. How sad. So so sad.

  14. tpotter...with all due respect...Dr. L will NOT test for ANY of those things, with the exception of Lyme. Not even co-infections. This is one of the reasons we are considering a switch. After almost a year of asking to test for these things and being told they would not be helpful, we want to put the puzzle together too.


    tpotter...who do you see?? who has tested for all of that for your child?

  15. sww817---I have been wanting to post almost this exact same thing.....looking for a doctor---I agree with what you have said. We see Dr. Latimer and I feel EXACTLY the same way. I am the one managing things, as she is not responsive unless you are in the office. My personal opinion is that she should call her setup more of a "consultation" situation. No after hours care provided in any way. When you need a quick answer to a question, when things are scaring you, and you are not getting a response, it forces the mom to "play doctor," which I don't like to do.


    I also "feel like I am missing a piece of the puzzle" with Dr. Latimer. We are not a cut-and-dry PANDAS case with a debilitated child, so I don't know if she is geared for that. I think, from what I've heard, that if you are classic PANDAS and debilitated, you are in the best care. And "comprehensive" would be nice too.


    Sp please keep me in the loop too with any info. on Dr. Murphy.

  16. I just wonder if this has anything to do with pandas kids immune systems being in overdrive as it is....maybe they just keep churning and churning out antibodies? OR, maybe it's like strep, where the infection is cleared, but the antibodies continue to rise for a period of time aftere......like ASO vs. antiDNAseB (which I understand can remain elevated in school age kids....likely just from exposure....and in "normal kids" I would say elevated titers in response to even exposure is a "good" thing, right?

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