Deleted
Posts: 0
Apr 26, 2024 5:49:17 GMT
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Post by Deleted on Feb 10, 2015 22:28:23 GMT
It's awesome that you and your DH trusted your gut, and advocated for your daughter. It's also kind of amazing that people here actually knew about PANDAS and were able to suggest that you look into it. So glad you are getting some answers and that you're all in such good hands. I'll keep you and your family in my thoughts. Hope you'll keep us updated periodically.
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Post by Miss Ang on Feb 10, 2015 22:39:32 GMT
I so glad you're getting the help needed! Been thinking of you! Please keep us posted when you can.
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tincin
Drama Llama
Posts: 5,363
Jul 25, 2014 4:55:32 GMT
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Post by tincin on Feb 10, 2015 22:39:58 GMT
I have never heard of PANDAS but the posters on this site share a wealth of information. I am glad you are getting answers and hopefully a solution. Good luck.
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Post by beebee on Feb 10, 2015 23:01:00 GMT
Thank you for update #3.
Please, pretty please post or even write me about the treatment. My daughter is 13yo and still battling this. She developed it in 1st grade after a strep infection. We have periods were she is in remission and then she gets sick and things flare. We have been to doctors all over the states looking for help and we now have a doctor near us that helps, but I would love to hear what they are thinking and doing up at Stanford. Stanford seems to be at the leading edge of treatment.
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Jili
Pearl Clutcher
SLPea
Posts: 4,363
Jun 26, 2014 1:26:48 GMT
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Post by Jili on Feb 10, 2015 23:02:56 GMT
I'm glad you were able to get a diagnosis--at least now you know how to move forward with a medical team that knows how to manage/treat. Lots of good wishes going out to your dd and your family.
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Post by littlefish on Feb 10, 2015 23:58:24 GMT
I am SO glad you finally have some answers and direction. Praying for quick healing and continued wisdom for you and the doctors!
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Post by dulcemama on Feb 11, 2015 0:24:05 GMT
Thank you so much for the update. While I'm sad that you are going through this, I'm glad you now know what you're dealing with. If you ever want to talk about it or need a sounding board, please feel free to PM me. Best of luck as you go forward with treatment. My thoughts continue to be with you.
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TankTop
Pearl Clutcher
Refupea #1,871
Posts: 4,767
Location: On the couch...
Jun 28, 2014 1:52:46 GMT
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Post by TankTop on Feb 11, 2015 0:33:58 GMT
I am so glad you have an answer and a plan!
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heatherx
Shy Member
Posts: 31
Jul 20, 2014 22:15:15 GMT
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Post by heatherx on May 14, 2015 4:56:06 GMT
Update
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Deleted
Posts: 0
Apr 26, 2024 5:49:17 GMT
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Post by Deleted on May 14, 2015 5:18:27 GMT
I am so glad to read the good update. You have all been through so much! I will continue to have you and your family in my thoughts. Sending lots of hugs and many, many positive thoughts. I can't wait for the update where she can say "I love you" again. I have faith that it will happen
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oldcrow
Pearl Clutcher
Posts: 3,828
Location: Ontario,Canada
Jun 26, 2014 12:25:29 GMT
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Post by oldcrow on May 14, 2015 6:05:50 GMT
I am so glad heatherx that things are moving in the right direction. I hope she continues to improve to the point of being her old self once again.
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Post by coffeetalk on May 14, 2015 13:12:29 GMT
Such good news that your daughter has a great medical team in place and that she is improving. Hugs to you and you family as she continues to heal.
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gloryjoy
Pearl Clutcher
Posts: 3,332
Jun 26, 2014 12:35:32 GMT
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Post by gloryjoy on May 14, 2015 13:16:12 GMT
Thank you for your update. Happy that things are getting better for you daughter.
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Post by beebee on May 14, 2015 13:47:05 GMT
Is there any chance you will share the treatment? I am wondering if she got IVIG or they gave antibiotics or anything else. We have been doing Augmentin for a long time but my DD is not at 100 percent by any means. I know IVIG is a miracle sometimes and other times it causes things to go down. This is why I have hesitated in going this route.
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Post by mikklynn on May 14, 2015 13:54:46 GMT
Thank you for the update. I am so happy you found the diagnosis and she is improving.
I've never heard of PANDAS/PANS, so thank you for the PSA for all of us.
I'll keep your sweet girl in my prayers.
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Deleted
Posts: 0
Apr 26, 2024 5:49:17 GMT
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Post by Deleted on May 14, 2015 14:34:56 GMT
Thanks for the update! I am glad to hear that there is a least some progression in the treatment. It is a scary place to be as a mom and I am so glad you found a good group of medical professionals quickly!
Will keep praying!
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Post by craftsbycarolyn on May 14, 2015 15:18:10 GMT
Glad you found an answer and she is getting the help she needs.
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Post by jeremysgirl on May 14, 2015 17:18:10 GMT
I am so glad to read your update. It is awesome that she is starting to respond to treatment.
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valincal
Drama Llama
Southern Alberta
Posts: 5,623
Jun 27, 2014 2:21:22 GMT
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Post by valincal on May 14, 2015 19:33:33 GMT
Such good news. Glad you're seeing improvement with your little one. Take care.
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Post by littlefish on May 14, 2015 22:30:03 GMT
I'm SO glad she's been doing so well! Praying for continued recovery! Thanks for the update.
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heatherx
Shy Member
Posts: 31
Jul 20, 2014 22:15:15 GMT
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Post by heatherx on May 15, 2015 3:55:13 GMT
Thank you for update #3. Please, pretty please post or even write me about the treatment. My daughter is 13yo and still battling this. She developed it in 1st grade after a strep infection. We have periods were she is in remission and then she gets sick and things flare. We have been to doctors all over the states looking for help and we now have a doctor near us that helps, but I would love to hear what they are thinking and doing up at Stanford. Stanford seems to be at the leading edge of treatment. For us they are doing prophylaxis amoxicillin of 250 mg/day. That is after doing 2 times that amount for several weeks to deal with any infection that may have been present. We will be doing this for at least 2 more years and possibly many more after that. Lexi handles it fine and has no stomach issues, which is fantastic! She also takes ibuprofen 3 times a day to control the inflammation in her brain. These 2 meds have helped tremendously. She went from being so exhausted that she couldn't handle school anymore to being back full time and running around the park for an hour or two every night. We are lucky that this was her first flare. We haven't had a discussion about IVIG or anything else because she is responding so well right now. We cross our fingers every day that she doesn't get sick again and the antibiotics continue to do their job to prevent it. Please find the "PANDAS-Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep" Group on Facebook. They can help you locate doctors in your area and have the most amazing advice. They know everything from specific labs to get bloodwork done to who to see and who to avoid.
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Post by calgaryscrapper on Apr 3, 2024 5:10:11 GMT
Bringing this thread forward for beaglemom
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Post by beaglemom on Apr 3, 2024 5:30:57 GMT
Thank you for update #3. Please, pretty please post or even write me about the treatment. My daughter is 13yo and still battling this. She developed it in 1st grade after a strep infection. We have periods were she is in remission and then she gets sick and things flare. We have been to doctors all over the states looking for help and we now have a doctor near us that helps, but I would love to hear what they are thinking and doing up at Stanford. Stanford seems to be at the leading edge of treatment. For us they are doing prophylaxis amoxicillin of 250 mg/day. That is after doing 2 times that amount for several weeks to deal with any infection that may have been present. We will be doing this for at least 2 more years and possibly many more after that. Lexi handles it fine and has no stomach issues, which is fantastic! She also takes ibuprofen 3 times a day to control the inflammation in her brain. These 2 meds have helped tremendously. She went from being so exhausted that she couldn't handle school anymore to being back full time and running around the park for an hour or two every night. We are lucky that this was her first flare. We haven't had a discussion about IVIG or anything else because she is responding so well right now. We cross our fingers every day that she doesn't get sick again and the antibiotics continue to do their job to prevent it. Please find the "PANDAS-Pediatric Autoimmune Neuropsychiatric Disease Associated with Strep" Group on Facebook. They can help you locate doctors in your area and have the most amazing advice. They know everything from specific labs to get bloodwork done to who to see and who to avoid. I just wanted to check in with you. We are just starting down the path of trying to figure out what is going on with our 11 year old son and PANS/PANDA is something that we are looking into. We have a referral to the clinic at Stanford and are pursing therapy and researching anything and everything to try to help our son. We have a friend whose child was treated by the Stanford clinic and she says they saved her family. Just looking for any advice or support you might be able to give. Thank you!!
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Post by librarylady on Apr 3, 2024 19:05:33 GMT
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Post by workingclassdog on Apr 4, 2024 13:30:26 GMT
I'm so sorry I think I missed this the first time around. Sounds like you are on the right track. Hang in there and I pray you get "I love you" back SOON...
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nurselinda
New Member
Posts: 4
Jul 1, 2014 2:57:52 GMT
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Post by nurselinda on Apr 4, 2024 18:31:30 GMT
There is a mother on instagram Iheart2plan that has extensive experience with a daughter about your daughters age that has suffered from Pandas her son also had a less severe case. She would be a great person to connect with. She is very passionate about sharing their extensive experience.
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