Friday, October 2, 2009

Update on Yusef's Infantile Spasms

It occured to me that I never really gave an update on Yusef's progress on his meds. I'm happy to say that the second med we started seems to have done the trick and he's been seizure free for the last several weeks. He's on Kepra 3 times a day and Zonegram twice a day.

I have noticed that he seems to be a tad more sleepy since this all started and he hasn't progressed at all developmentally. From what I've learned from other mom's this is to be expected and often happens with the IS. In fact, I think it's safe to say, he's even regressed on a lot of his gross motor milestones. He won't roll over like he was before, and rarely ever smiles. He seems to avoid social contact and sometimes refuses to even look at us and interacts rarely. Our therapist seems to think it's a sensory thing caused from the seizures and meds. However, just the other night I was thrilled when I got several sweet smiles out of him!

We've got an appointment Monday with the neurologist and a follow-up EEG--I'll definitely bounce it off of him and see what he says.

Hopefully we'll be actually be able to make it to the appointment since big sis Somaya is fairly ill and might have to be admitted into the hospital for IV anitbiotics. She's suffering from a UTI that doesn't seem to be responding to the meds. Her pedi thinks there is a good possibility it's turned into a kidney infection in which case she'll have to be admitted. We do have vesicoureteral reflux in the females in our family. It's essentially what happens when the urine backs back up from the bladder up the ureter and into the kidney. It can cause chronic infections. Zainah and I both had it. Somaya has never been screened for it since she's never had a UTI before. Right now we're just waiting to see if her fever returns tonight and if it does we're to take her to the ER. Her last dose of ibuprofen was at 2:00 and it's now 6:30 so we'll see what happens here in the next few hours.

Oh yeah, our buddy walk is tomorrow and unless Somaya makes some type of miraculous recovery, I doubt we'll be able to go. I'm really bummed about this. I was so excited. It seems as if every time our local DS chapter has some big event, one of the kids is sick or there's something else going on. Sigh. I dunno, maybe Somaya will be okay. That's what I'm praying for right now--and my sanity--it's been a rough couple of days...

6 comments:

Adrienne said...

Glad to hear Yusef's seizures have stopped. Sorry to hear about your daughter- I hope she gets better soon!! You need a break, don't you? Hang in there!

Sonia said...

Thanks for the update on Yusef! There is another mom on the babycenter board and on facebook who's daughter has IS. She has always been a wealth of knowledge, let me know if you'd like her info, or maybe you already do :)

Seems like we have more in common! VUR was present in both my oldest and middle child. My oldest has 60% and 30% left/right kidney damage from it. The middle child has none. However, both have been corrected by injection of Deflux. Lillian was also tested, but does not have it. We thought she did, because she also had a UTI, but it was just a fluke. But where they get it from we don't know, because neither myself nor my husband know if either one of us has it.

Stephanie said...

Adrienne--Hi and yes I need a break, but hey that' what your in for when you have kids I guess ;)
Sonia--I believe you're talking about lchipman? Yes, I've been put in touch with her and have chatted with her on FB. She's wonderful...

Salma said...

I've been looking for an update...I am very happy to hear that things have calmed down. You are always in my prayers.

You have a lovely family, mashallah...you're a great mom.

nk said...

Salaams. Ive recently discovered your blog and love it! I have a sister with Down Syndrome, but she's already 24 years old. I can tell many stories about her, but im sure u're well aware of how special they are.. I make du'ah for ur son Insha-Allah.

Carrie said...

How stressful! I'm glad to hear Yusef's seizures have stopped and that you got some smiles out of him. Those little smiles are a mom's payday! I hope your daughter is feeling better by now. I'll be thinking of you guys!