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  Fact Checker
Posts: 16575
   
Location: Displaced Iowegian | Has anybody heard from IRunOnFaith (Tessa)? She hasn't posted since November and that is very unusual! |
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 A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | Been wondering where she is myself.. |
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Extreme Veteran
Posts: 380
| Hopefully it's just been a busy Holiday season for her. Anyone in here know her personally? Maybe they can chime in? |
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 Miss Laundry Misshap
Posts: 5271
| I hope her daughter is doing ok. That's always a major concern in the colder winter months. |
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Fact Checker
Posts: 16575
Location: Displaced Iowegian | Nateracer - 2017-12-20 2:42 PM I hope her daughter is doing ok. That's always a major concern in the colder winter months.
That was my concern too! |
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Go Get Em!
Posts: 13503
Location: OH. IO | PRAYERS THEY ARE OK.IT REALLY ISNT LIKE HER TO NOT BE HERE:((( |
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 My Heart Be Happy
Posts: 9159
Location: Arkansas | I pmed her last night because I was worried about her and her daughter since we hadn't heard from them in awhile. No reply yet. . . . Hopefully she's just Christmas busy.
Edited by Chandler's Mom 2017-12-20 9:01 PM
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Fact Checker
Posts: 16575
Location: Displaced Iowegian | Chandler's Mom - 2017-12-20 8:55 PM I pmed her last night because I was worried about her and her daughter since we hadn't heard from them in awhile. No reply yet. . . . Hopefully she's just Christmas busy.
I had Pm'd her too with no answer ....... |
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Go Get Em!
Posts: 13503
Location: OH. IO | Prayers she checks in soon. |
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 Witty Enough
Posts: 2954
Location: CTX | Looks like she logged in yesterday afternoon for the last time, so hopefully she is just busy and will check in with us soon. |
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My Heart Be Happy
Posts: 9159
Location: Arkansas | cranky B4 10am - 2017-12-21 11:07 AM
Looks like she logged in yesterday afternoon for the last time, so hopefully she is just busy and will check in with us soon.
Praying she sees this and let's us know she's ok. . . |
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Fact Checker
Posts: 16575
Location: Displaced Iowegian | Chandler's Mom - 2017-12-21 7:36 PM cranky B4 10am - 2017-12-21 11:07 AM Looks like she logged in yesterday afternoon for the last time, so hopefully she is just busy and will check in with us soon. Praying she sees this and let's us know she's ok. . .
I am bumping this back up until we find an answer ...... |
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 Expert
Posts: 3815
Location: The best kept secret in TX | Thank you to everyone who has missed me... Your friendship means the world to me. I've missed you guys as well.
Things at work have been terribly hectic so I haven't had any time to breathe... Or log on... I'm sorry...
Izzy is good butshe's had LOTS of pain associated with her Scleroderma but other than that she is healthy and happy. Recently she has woken up and said her hair was "too tight" and lays back down and cries. A little lotion on her head and all is well. .... But Last week we had to leave the Target store because her legs were hurting/swelling so bad she had a meltdown in the cart. I videoed her meltdown so that I could show her doctor and cried the whole time.
She was Screaming and crying laying down in the cart holfing both knees. We left our cart in the middle of the aisle and escaped without too much of a fuss. I'm sure the people of Target thought we belonged at the Walmart store with her screaming... Put some heat on her knees in the car and gave her a sucker. Took about 30 min but the swelling went down.
We did manage to find her some gloves and mittens that fit this year and we found some 4T wool socks (She wears 2T) that were way too big. They come up to her knees but they're warm. LOL. We've stocked up on hot hands and make games out of wearing hats and scarves and mittens. Her favorite dinosaur and stuffed hound dog even have a hat for the cold LOL.
Back around the first of the month we got our results back from our second round of blood tests.... We were hoping to use the results to help us get a definitive answer and official written diagnosis as to what we were dealing with rather than a doctor saying this is what she has but we cannot formally diagnose without test result x y or z... Test results were done by blood test by ANA and were CONCLUSIVE that absolutely NOTHING was wrong with her....
Auto immune diseases are tricky... sometimes they show up and sometimes they dont on blood tests depending on lots of different factors including time of day, what time of ear it is what month it is, and so on and so forth (Bear correct me if I am misinformed). Because the tests were clean the doctor we have been seeing has "released" us from her care stating that there is nothing medically wrong with her as far as Rheumatology is concerned... She said that if we wanted another appointment we would need another refferal... I am now on the search again for a doctor. The doctors we have been directed to have all wanted test results that confirm diagnosis before they see her... Her test said she was healthy as a horse... I am torn between laying in a fetal position and crying for 18 years until she can see an adult doctor or continue putting her through the pain of getting blood drawn all for test results to be inconclusive or clean...
So for now we take it day by day. Deal with each symptom hour by hour and continue doing our own thing.
She is VERY excited for Christmas and has informed me that Santa was going to bring her Books and probably dinosaurs, but mostly books. So far Santa has gotten her a chair ofr reading, a new bookshelf, and a few dinosaurs and books.
If I don't get a chance to get back on: Merry Christmas to NJJ, Chandler's Mom, Southtxponygirl, jake16, sloride, nateracer, and CrankB410AM. You guys are the best!  |
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A Somebody to Everybody
Posts: 41354
Location: Under The Big Sky Of Texas | IRunOnFaith - 2017-12-22 3:01 PM Thank you to everyone who has missed me... Your friendship means the world to me. I've missed you guys as well.
Things at work have been terribly hectic so I haven't had any time to breathe... Or log on... I'm sorry...
Izzy is good butshe's had LOTS of pain associated with her Scleroderma but other than that she is healthy and happy. Recently she has woken up and said her hair was "too tight" and lays back down and cries. A little lotion on her head and all is well. .... But Last week we had to leave the Target store because her legs were hurting/swelling so bad she had a meltdown in the cart. I videoed her meltdown so that I could show her doctor and cried the whole time.
She was Screaming and crying laying down in the cart holfing both knees. We left our cart in the middle of the aisle and escaped without too much of a fuss. I'm sure the people of Target thought we belonged at the Walmart store with her screaming... Put some heat on her knees in the car and gave her a sucker. Took about 30 min but the swelling went down.
We did manage to find her some gloves and mittens that fit this year and we found some 4T wool socks (She wears 2T) that were way too big. They come up to her knees but they're warm. LOL. We've stocked up on hot hands and make games out of wearing hats and scarves and mittens. Her favorite dinosaur and stuffed hound dog even have a hat for the cold LOL.
Back around the first of the month we got our results back from our second round of blood tests.... We were hoping to use the results to help us get a definitive answer and official written diagnosis as to what we were dealing with rather than a doctor saying this is what she has but we cannot formally diagnose without test result x y or z... Test results were done by blood test by ANA and were CONCLUSIVE that absolutely NOTHING was wrong with her....
Auto immune diseases are tricky... sometimes they show up and sometimes they dont on blood tests depending on lots of different factors including time of day, what time of ear it is what month it is, and so on and so forth (Bear correct me if I am misinformed). Because the tests were clean the doctor we have been seeing has "released" us from her care stating that there is nothing medically wrong with her as far as Rheumatology is concerned... She said that if we wanted another appointment we would need another refferal... I am now on the search again for a doctor. The doctors we have been directed to have all wanted test results that confirm diagnosis before they see her... Her test said she was healthy as a horse... I am torn between laying in a fetal position and crying for 18 years until she can see an adult doctor or continue putting her through the pain of getting blood drawn all for test results to be inconclusive or clean...
So for now we take it day by day. Deal with each symptom hour by hour and continue doing our own thing.
She is VERY excited for Christmas and has informed me that Santa was going to bring her Books and probably dinosaurs, but mostly books. So far Santa has gotten her a chair ofr reading, a new bookshelf, and a few dinosaurs and books.
If I don't get a chance to get back on: Merry Christmas to NJJ, Chandler's Mom, Southtxponygirl, jake16, sloride, nateracer, and CrankB410AM. You guys are the best!
Glad that you checked in, was thinking about getting a Posse together and track you down..
Sorry to hear that Izzy is having melt downs, poor baby its so hard on the parents when things are not going the way we expect them to and our babys are in pain, sending her prayers.. Yes Auto immune diseases are tricky you never know when its going to kick your butt, I hate it..you just go from day to day with it.. I hate that Izzy's doctor is taking her disease so lighty. Prayers that you find a Doctor that can help your little one as soon as possible.  |
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 Extreme Veteran
Posts: 460
| So sorry to hear about your little one...hugs and prayers...and some cookies and wine for Santa ;] |
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Fact Checker
Posts: 16575
Location: Displaced Iowegian | Roxie is right....we had the posse rounded up and ready to go looking .... LOL ..... I am soooooo sad that your sweet child is not doing well ..... keep on those Drs. though until you have exhausted everyone of them....no child, her age, can be healthy as a horse and having those problems..... Merry Christmas to you and your family too and praying for a Happy (and Healthy) New Year for your family! |
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Go Get Em!
Posts: 13503
Location: OH. IO | so now I will go unsaddle my bronk.was just getting together with the posse.SO GLAD YOU AND BABY ARE OK!!!!!!!!I PRAY SHE GETS MORE COMFORTABLE! |
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Witty Enough
Posts: 2954
Location: CTX | Thanks for letting us know, please give your baby a hug from us. And yourself too!!
And a Merry Christmas!! |
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 Shelter Dog Lover
Posts: 10277
| Please give your baby girl a hug for me, I pray for her to find relief, there is nothing worse than watching our children suffer. I hope Chrustmad puts a big smile on her face. |
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Addicted to Baseball
Location: Where the stars at night are big and bright, TX | I'm sorry to hear your sort of back to square one with the diagnosis. My daughter has Sydenham Chorea and while not painful, it was as frightening and maddening trying to get general practioners to listen to me because it's so rarely seen anymore. I don't want to piggy back your post and tell the story of our situation, but know that there are parents who have been through something similar and I'll pray fervently that you get the answers you need and she finds relief soon. |
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My Heart Be Happy
Posts: 9159
Location: Arkansas | I am so very glad you posted. . . . We were getting way worried about you and Izzy. I know you had mentioned AR Children's Hospital---would it be possible to just try it? I say that simply because it is supposed to be one of the top children's hospitals in America. And you bet your bippy if y'all were in LR, I'd be up there! My heart hurts for you as a momma having to watch Izzy suffer, so I pray God's merciful hand on her aches and pains, that they are alleviated along with your misery from seeing her go thru all that. Have a blessed Christmas with much love sent to all of you from Arkansas |
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 BHW Resident Surgeon
Posts: 25352
Location: Bastrop, Texas | I wish there was something I could say that would be definitely helpful, but I don’t know enough about Izzy, nor do I have any experience with this rare condition. I can make some general comments that might possibly be helpful, or somewhat encouraging.
It is not at all uncommon for these kids to linger for quite some time without fulfilling enough criteria to make a definitive diagnosis. Some kids develop a type of scleroderma with Raynaud’s phenomena after certain kinds of strep infection. In those cases, the good news is their disease is usually self limited and tends to burn out after a few years. I don’t know if she’s ever had a strep infection, but I’m throwing that out there for you. That would be a blessing.
The things that pose a threat to Izzy are more related to whether she has involvement of organs besides the skin, like the heart, lungs, or kidneys. If she doesn’t, that’s encouraging. For a lot of kids with this illness, the prognosis can be better than that for adults.
I don’t know if she is taking any “calcium channel blockers” but those are the gold standard drugs for kids with Raynaud’s. There are other options, if those fail. The key to managing these kids without meds is
to get set up with someone to review certain things with you, such as exercise (very important), skin creams, etc.... it sounds like you are on top of that.
By the way, last time you posted on here you mentioned how she likes to swim. Did you ever get her a good wet suit with gloves?
Those things can be real toasty and can possibly prevent her from experiencing painful Raynaud’s symptoms while swimming. You can get gloves made of the same material.....and some cool color schemes as well! Good wet suits aren’t cheap, but they are designed for divers to be under water for long periods of time in 30 degree water.
Like I said, I don’t know enough of the specifics about Izzy, but if you are frustrated because of a lack of a definite diagnosis, that is a pretty common problem....but that also might be a good sign.
Keep up the fight!
Edited by Bear 2017-12-23 8:59 AM
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 Neat Freak
Posts: 11216
Location: Wonderful Wyoming | I sure wish you could get this all figured out. I can't imagine. Prayers for a better 2018. Merry Christmas to your family. |
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Expert
Posts: 3815
Location: The best kept secret in TX | Thank you to everyone for the well wishes and the kind words.
We had a wonderful Christmas with Izzy. I've never seen her so excited for a toy (Foot Tall T-Rex).
Hope Everyone had a wonderful Christmas! |
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IRunOnFaith ???? Hasn't posted for awhile?