My son was diagnosed with CIDP in August 2021 at the age of 14. Thankfully his monthly infusions have helped him tremendously, but this really is such a rare and scary disease. I’m hopeful for the future but I don’t know if there will ever be a time when he doesn’t need these infusions.
My son is 11 he was diagnosed with CIDP in August of 2021. This so rare in Pediatric patients he has been through so much the last 15 months. I would love to connect. This is the only story I have seen. How is Ryder today? ❤
My son was diagnosed with gbs in Sept 2022 after a stomach virus … they sent him on his way clear bill of health - only for him to get sick again and have to be hospitalized for gbs again - & now he’s diagnosed CIDP my poor baby wants to play basketball with his friends - and he has such bad reactions to the IViG why are children getting these inflammatory disorders
I had to stop the video at 1:38 to say it is infuriating to hear that Medical professionals told these parents that THEIR CHILD that they know more than anyone is telling these adults that he’s faking it or milking it. I don’t know the outcome of this story but I do know that my Uncle just went through an ordeal that left him in the hospital fighting for the last 4 weeks. We lost him on Thursday 3/9/23. He was only 65. A very young 65. He’d just hiked the Tetons out west. IHe will be very missed. 💔
It's a funny word. In the states they spell it "Pediatrics" and in the UK they spell it "Paediatrics." Since we're Canadian, we tend to share more commonalities in spelling with the British than the Americans, but at the same time we share so much of our culture with the States that both spellings are accurate and accepted here. We tried to share it with both audiences by using both spellings within the hashtags so hopefully people can find it, regardless of where they live :)
@@gbs-cidpcanada5886 I'm Canadian too, and that may be true for Eastern provinces; however, anything West of Ontario, that's not the case. Pediatric is easier to search for, because Google spells it that way, and it is more commonly used in North America.
@@TheDLB626 thanks for the advice :) I just looked up "pediatric CIDP" and our video came up as the first hit. Maybe it's because of the hashtags or maybe TH-cam has a way of linking regional differences in spelling? In the end, all we care about is that other families who are affected by CIDP are able to find this video when they are in need, and hopefully it helps them feel a little less alone.
My son was diagnosed with CIDP in August 2021 at the age of 14. Thankfully his monthly infusions have helped him tremendously, but this really is such a rare and scary disease. I’m hopeful for the future but I don’t know if there will ever be a time when he doesn’t need these infusions.
My son is 11 he was diagnosed with CIDP in August of 2021. This so rare in Pediatric patients he has been through so much the last 15 months. I would love to connect. This is the only story I have seen. How is Ryder today? ❤
How is your son doing now? My daughter was also diagnosed with CIDP. She is 9 years old. I would love to connect
My daughter is 9 years old and she was diagnosed with CIDP at the beginning of the year. I would love to connect with others. Thanks
Liz
Sweet boy, strong family.
Yes, it is quite the story
Such a strong little boy xx Please keep us updated.
My son was diagnosed with gbs in Sept 2022 after a stomach virus … they sent him on his way clear bill of health - only for him to get sick again and have to be hospitalized for gbs again - & now he’s diagnosed CIDP my poor baby wants to play basketball with his friends - and he has such bad reactions to the IViG why are children getting these inflammatory disorders
I had to stop the video at 1:38 to say it is infuriating to hear that Medical professionals told these parents that THEIR CHILD that they know more than anyone is telling these adults that he’s faking it or milking it. I don’t know the outcome of this story but I do know that my Uncle just went through an ordeal that left him in the hospital fighting for the last 4 weeks. We lost him on Thursday 3/9/23. He was only 65. A very young 65. He’d just hiked the Tetons out west. IHe will be very missed. 💔
It doesn't help, that pediatric is spelt wrong.
It's a funny word. In the states they spell it "Pediatrics" and in the UK they spell it "Paediatrics." Since we're Canadian, we tend to share more commonalities in spelling with the British than the Americans, but at the same time we share so much of our culture with the States that both spellings are accurate and accepted here. We tried to share it with both audiences by using both spellings within the hashtags so hopefully people can find it, regardless of where they live :)
@@gbs-cidpcanada5886 I'm Canadian too, and that may be true for Eastern provinces; however, anything West of Ontario, that's not the case. Pediatric is easier to search for, because Google spells it that way, and it is more commonly used in North America.
@@TheDLB626 thanks for the advice :) I just looked up "pediatric CIDP" and our video came up as the first hit. Maybe it's because of the hashtags or maybe TH-cam has a way of linking regional differences in spelling? In the end, all we care about is that other families who are affected by CIDP are able to find this video when they are in need, and hopefully it helps them feel a little less alone.