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Kirubha Balakumar
  • Female
  • Bayonne, NJ
  • United States
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Kirubha Balakumar's Discussions

IV port for exon 51

Started this discussion. Last reply by Kirubha Balakumar Jul 4. 3 Replies

Has anyone gotten IV port in the chest for Exondys 51 weekly infusion? how was the procedure? were there any issues after the surgery?

 

Kirubha Balakumar's Page

Latest Activity

Kirubha Balakumar replied to sulthana shaik's discussion Exon 45 skipping/ exon 51 skipping, Help to make a hard decision !!.PLEASE HELP.
"Only dehydration. But we're managing with lots of Water. Haven't done any kidney tests yet."
Sep 25
Kirubha Balakumar replied to sulthana shaik's discussion Exon 45 skipping/ exon 51 skipping, Help to make a hard decision !!.PLEASE HELP.
"My son is 4.9 years old and we started exon 51 two months back. We didn't do muscle biopsy only blood test. He started steroids 4 months back."
Sep 25
Kirubha Balakumar replied to sulthana shaik's discussion Exon 45 skipping/ exon 51 skipping, Help to make a hard decision !!.PLEASE HELP.
"We were not in trials. We started exon 51 2 months back. We do see a lot of difference since we started on exon 51. At 4 years old he had trouble climbing even a toy slide. But now he is climbing the slide in park in reverse. No falling anymore and…"
Sep 25
Kirubha Balakumar replied to Kirubha Balakumar's discussion IV port for exon 51
"thank you. do you see improvements after being on exon 51?"
Jul 4
Eleanor Carter replied to Kirubha Balakumar's discussion IV port for exon 51
"My son has had his port 1 1/2 years and we have not had any issues. In fact, he no longer feels the infusion needle each week."
Jul 2
Catherine Lake replied to Kirubha Balakumar's discussion IV port for exon 51
"My son has had his port for a little over a year (he was in the trial).  It's been relatively smooth.  It freaked him out at first (he'd just gotten used to arm pokes) but infusions are no big deal now.  He does…"
Jun 2
Kirubha Balakumar posted a discussion

IV port for exon 51

Has anyone gotten IV port in the chest for Exondys 51 weekly infusion? how was the procedure? were there any issues after the surgery?
May 3
Kirubha Balakumar is now a member of PPMD Community
Apr 7

Profile Information

About me:
mom with dmd kid
Name(s) of child(ren)/individual(s) with Duchenne:
midhun
Age(s) of child(ren)/individual(s) with Duchenne:
4-6
City:
Bayonne
State:
NJ

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