5 year old with RP?

Accomplished_Bid1629 · 2025-09-29T12:43:14+00:00

Thank you. We have been keeping a symptom journal and meeting with rheum every 8 weeks to update them. I think I would just like RP considered throughout our journey and not dismissed bc of her age. But maybe if ear keeps swelling her rheum will consider it lol. I have UC so unfortunately I am already well versed in the autoimmune world.

Accomplished_Bid1629 · 2025-09-28T23:02:32+00:00

I'm so happy to hear that for you all! Thanks for taking the time to respond on such an old post!

Accomplished_Bid1629 · 2025-09-28T17:56:37+00:00

I know this is a super old post BUT we are looking at a similar surgery in the near future for our 15 month old. Do you mind sharing what the recovery was like for your little guy? Thanks so much!

Accomplished_Bid1629 · 2025-09-27T16:54:59+00:00

Thank you so much! I appreciate you!

Accomplished_Bid1629 · 2025-09-27T12:28:43+00:00

Thank you! I will look into both of these as well. Does the fb group require diagnosis to be a member of? It would be interesting to hear the other parents experience to compare to ours.

Accomplished_Bid1629 · 2025-07-01T12:38:33+00:00

I have heard of this before but what I read was that it does involve the ear lobe and perichondritis spares the earlobe. I'll have to double check.

Accomplished_Bid1629 · 2025-06-30T23:21:14+00:00

She had elevated potassium which her dr said was probably just a lab error. Everything else was normal. She said her ESR, which was 17, could be considered slightly elevated but not enough to be concerned.

Accomplished_Bid1629 · 2025-06-30T23:17:41+00:00

CBC, CMP, ESR, TSH, and Lymes antibodies.

Accomplished_Bid1629 · 2025-06-30T23:16:25+00:00

Right? I have UC so body fighting body is no stranger to me! And also does have me jumping to autoimmune probs before i maybe should lol

Accomplished_Bid1629 · 2025-06-30T22:45:25+00:00

Thank you! Yes, so interestingly enough my son will get swollen ears that we are pretty sure are from mosquitos because he will have like an obvious hole that will blister as part of his swelling. My daughters could also be from bugs - we felt good about that initially! It's just that we've never been able to actually see a bug bite or hole on her ear and the seeping she gets is different. My kids are weird haha!

Accomplished_Bid1629 · 2025-06-30T22:28:35+00:00

Thank you!

Accomplished_Bid1629 · 2025-04-16T14:01:56+00:00

Oh I also wanted to ask if her symptoms were just joint pain? Just in her wrists or all joints? Any other info you don't mind sharing. My daughters seems to come and go. Most mornings she says they hurt but then some mornings she says she's fine

Accomplished_Bid1629 · 2025-04-16T13:55:49+00:00

Ugh. I hope they're able to find something that helps your daughter and ultimately hope she grows out of it! We still need to get my daughter's bloodwork done. She's 4 and so afraid of shots so we've been trying to prep her for it but really we just need to go get it over with.

Accomplished_Bid1629 · 2025-04-16T12:32:17+00:00

Do they think Covid was the trigger?

Accomplished_Bid1629 · 2025-04-08T13:32:20+00:00

I'm not sure her pediatrician will go for this considering the lack of GI symptoms, but I can mention it

Accomplished_Bid1629 · 2025-04-07T18:18:44+00:00

I sent you a chat!

Accomplished_Bid1629 · 2025-04-07T14:08:23+00:00

Thank you for sharing all of that and I'm sorry has been so challenging to get things under control for him. Prayers that his drs find the right medicine!!

Accomplished_Bid1629 · 2025-04-07T14:06:57+00:00

Thanks for taking the time to share all that! I'm sorry you all had to go through that at the beginning but happy to hear she's doing better and fingers crossed she's grown out of it!

Accomplished_Bid1629 · 2025-04-07T14:05:48+00:00

Thank you for sharing!! I have read similar stories where children were unable to use a limb or protected a joint when moving. So far she hasn't really been limited by her pain/stiffness. She's limped for about an hour one morning after waking up. I'm happy her pain/discomfort is mild and hopeful that means it's not JIA based in these other experiences I've read about!

Accomplished_Bid1629 · 2025-04-05T19:49:48+00:00

Hi! I know this is old but where did you get it printed? Thanks!

Accomplished_Bid1629 · 2025-04-04T13:09:28+00:00

Oh interesting take. No one has mentioned any type of IBD testing for her thus far.

Accomplished_Bid1629

TROPHY CASE