Raising A Child with JA Connect Group

Hi Yehudis, 

Welcome to the group. I recently posted a message, we're combing 3 groups into one, we look forward to you joining our future discussions. Hope you can gain some insight from the facilitators and other parents on your sons JAS. My duaghter was diagnosed in 2016 with SJIA at 2, she's currently 11, there is hope!! Look forward to seeing you on future meetings. 

v/r

Vanessa 

Hi. I haven't been active on this group. I just logged in to check this out and am glad to see your message. My son is 10 years old as well and diagnosed in January with JAS as well! Our world has been turned on its head completely. It's been a journey. He's been in so much pain, been out of school for most of this school year. He started Hyrimoz (Biosimilar to Humira) in January and he's finally been feeling somewhat better the past few weeks. According to my doctors the side effects of Biologics are really not what they used to be thought of in the past and the benefit definitely outweighs the risks. My mom has AS as well and is stubborn about taking Biologics. She lives in severe chronic pain every day. It's not a life and it's not worth it. Sending so much love and compassion ❤️ 

Hi Adyson, 

My name is Angelica and I'm one of the facilitators of this group. A diagnosis will rock your world. I won't try and say it doesn't. My daugher was diagnosed a month before her 3rd birthday with Juvenile Idopathic Arthritis. Trust me I understand as a mama where we can't tollerate seeing our kids in pain. We did a couple of rounds of steriod injections and then 9 months after diagnosis we started medication. My advice is don't go down a rabbit hole looking at all the side effects. It will eat you. We have been on Methotrexate, Humira and Enbrel. Now my daughter is 10 and she is 6 months off her medication and so far has been flare free. We still aren't considered in remission but are on that path. I'd invite you to join our meeting on Tuesday May 20th so we can get a chance to chat. Although our diagnosisis are all different sometimes we can connect and talk because as parents we are in the same boat of wanting what is best for our kiddos. 

Also feel free to contact me directly at [email protected]. 

Angelica

Oh! And she was put on folic acid tablets daily when we started the methotrexate. We mix it in with a tablespoon of applesauce and she's never had issues with it. 

Hi Michelle! Just joined the group so you may have already started by now. My daughter was diagnosed last April at 2 yrs old. In her left knee and right ring finger. We did steroid injections in May last year. Within a few weeks that wore off and her swelling and limping started back quickly. We started methotrexate around October last year. It's helped a ton and she has had no side effects. We were able to do the oral version rather than the shot for her. Our insurance changed this year and she went without it for a good 6 weeks or so. Saw her symptoms come back pretty quickly. Finally got her pre-approval done with insurance and she's been back on it again for a little over a month. Already seeing improvement again and no side effects. She's never had any sickness or nausea from it either. 

Hi all! My daughter is now 5, but we started methotrexate at 2.5 after steroid injections failed. 
She ultimately failed methotrexate as well & we added Humira. 
She is currently taking Humira & Methotrexate. 

I give zofran 30 minutes prior to methotrexate injection & do the injection right before bed. We have had to lower her dose because she wasn't eating the day after injections due to the nausea. But she has had no issues on the lower dose! I also let her pick out bandaids she liked to make it more fun. We do celebrations for 50, 100, 150, and 200 injections with cake and presents as well. 

I was TERRIFIED to start methotrexate & it still makes me nervous some days & worry if I'm doing the right thing. But seeing your kiddo be able to run and play again is one of the best feelings in the world! 
Prayers you are all doing well & your kiddos are doing better! 

Hi Michelle and Alex! Like you guys, my son was diagnosed last year with JIA at 3 yrs old. It's been incredibly tough and an emotional roller coaster for the whole family. We did two rounds of steroid shots in both knees and ankles but it wore off both times within 3-4 weeks unfortunately. So we are seriously considering Methotrexate, but I am very weary of it considering the side effects as well. I hate the thought of him being on serious medication like that. Have either of your children started it yet? I will let you know how things go if we decide to put our son on it for a little while. 

Hi Michelle, I'm in a similar position as you. My daughter recently turned 3 and her knee swelling has returned 4 months after steroid injections and we're thinking about Methotrexate. Would be interested to hear your experience if she started it. <3

5pm PT for February 15th

Hi Robin - I realize your post is a couple years old at this point but I just joined the group today. I'm looking for someone my almost 10 year old daughter could connect with that understands what living with JIA is like. Hope your daughter is in a good spot :) 

Hi we have a 5th grader daughter with arthritis too who may be going thru similar stuff as yours. Hope to connect.

Hi Dasha,

My 7 year old daughter has JIA and we're interested in connecting with other families as well. 

Hi Kathleen,

My 7 year old daughter has sJIA. Sending you lots of strength and support on this journey. 

Hi Kathleen!