My Son’s Diagnosis (Nathan's Story) What’s GRIN2B

[@bethmathews7472]

Hi! My daughter has just been diagnosed with GRIN2B. Our children has had a similar experience with developing it seems. She is our second child, and doesn't seem to have seizures thus far. She is 2.5 years old and we just got the genetics test results last Friday. We are still figuring all of this out for sure. I did learn a few things from this video so thank you. She is also G tube, she got it Dec 2022, but got a NG tube Oct 2021. She was born in 2020, also has GI issues we're trying to figure out. It's nice to know when you aren't alone! ❤️

[@JeffandMolly]

Our bees are the same age. You definitely aren’t alone. Have you joined the parent support group on Facebook? There’s some support on there. You can ask questions to see if anyone else has been experiencing the same issues. Sometimes doctors aren’t much help because they don’t know much about the disorder. So it’s nice to be able to ask other parents then you can bring up what other parents have said to the doctors. You are alway welcome to reach out to me. I’m learning along the way just like every other parent. 💛

[@bethmathews7472]

@Jeff and Molly I haven't heard back if I'm accepted into the Facebook group. Not sure if I skipped a step or not! Thank you! We have been totally feeling out every step feeling a bit alone for sure! Fighting doctors and therapists along the way just wanting them to listen to me and my daughter! I know there are others like my daughter but your son is the first I've ever seen and never in person! That's funny that your bee's are the same age! Lol

[@JeffandMolly]

I think it’s takes a few to get accepted to the Facebook group but you should get accepted. Maybe you can try applying again if it lets you. His therapist have been good luckily I’ve like most of his therapist. For us it has been doctors and insurance/DME providers giving us most of our issues. You will see a lot more when you get accepted to the group. You could also post your variant to see if anyone else has it.

[@bethmathews7472]

Sorry I'm learning fast here! When you said bee's I thought you meant insects. I'm gathering that our GRIN2B kids are bee's, although I'm not sure why! Lol That is very cool they are the same age! Her Birthday is in August. I did get accepted into the fb group today! I emailed a few people and got sent the registry form finally! I'm so glad ya'll have like all of your therapists! We had a speach therapist that wasn't perffesonal enough! Lol And a feeding therapist that I kinda got into a fight with. That whole team, medical (NP, Nutrition and feeding therapist) wouldn't listen to me and Madison. As you know our kids may not respond the same way as other kids. And that didn't go well, I was blamed for her not eating. Then NP wrote some nasty things about me on the portal, I think accidentally. Lol The GI was great, just not great at trying to find the root cause of anything 🙄. So now we have 3 GI's, a different Nutritionist, neurologist, geneticist, ENT, and therapists. 3 different hospitals, it gets busy! Lol But because we had enough after a year, we now finally have answers! Oh don't get me started on DME drama! Lol It's a fun journey we're on. Now that I'm on the fb group I have so many questions now! I need settle my swirling head! Lol

[@rebeccahester3975]

My son was just diagnosed with the grin2b as well. We found out Friday.

[@JeffandMolly]

It is definitely a hard emotional time getting the diagnosis. Make sure to join the parent support facebook group. Since not a lot of doctors know about GRIN2B it’s been very help for me to ask questions about similar situations and bring them up to my son’s doctor.