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Forum
-> Children's Health
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amother
Royalblue
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 Tue, May 22 2018, 10:41 am
My daughter actually had sclerotherapy this morning.
Davenning for the rest of you.
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amother
Copper
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Tue, May 22 2018, 1:01 pm
| Quote: | | Been thinking about you and your baby! How’s your baby doing? |
Hi, Thanks for asking.
MRI b'H showed improvement (surprisingly!). Was sure that will show it got worse (it had looked so much larger) She got the bleo & doxy so was kind of nerve-wracking 48 hrs. (with b'H only 1 little scar to show) besides that her swelling effected her breathing (even with the trach) so that was a whole 'nother story...
now- almost 2 wks later & the swelling is starting to go down. she is still not eating like usual so I hope there is no ulcer somewhere... we can't judge her pain as she has a very high tolerance & she is such a happy good kid.
So thats a shorter version of a long update lol!
we had a crazy story though, the day before she was scheduled for treatment she suddenly ran a fever. cbc was fine so apparently was a fluke (she has these sometimes) I was going crazy though not knowing if it will be canceled. till I didn't see her under effect of GA I was sure gonna lose my mind...
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amother
Copper
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Tue, May 22 2018, 1:10 pm
| amother wrote: | My daughter actually had sclerotherapy this morning.
Davenning for the rest of you. |
Hope she feels good & no pain... is she staying overnight?
We'll keep her in our Tefilos as well.
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amother
Royalblue
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Tue, May 22 2018, 4:34 pm
| amother wrote: | | Quote: | | Been thinking about you and your baby! How’s your baby doing? |
Hi, Thanks for asking.
MRI b'H showed improvement (surprisingly!). Was sure that will show it got worse (it had looked so much larger) She got the bleo & doxy so was kind of nerve-wracking 48 hrs. (with b'H only 1 little scar to show) besides that her swelling effected her breathing (even with the trach) so that was a whole 'nother story...
now- almost 2 wks later & the swelling is starting to go down. she is still not eating like usual so I hope there is no ulcer somewhere... we can't judge her pain as she has a very high tolerance & she is such a happy good kid.
So thats a shorter version of a long update lol!
we had a crazy story though, the day before she was scheduled for treatment she suddenly ran a fever. cbc was fine so apparently was a fluke (she has these sometimes) I was going crazy though not knowing if it will be canceled. till I didn't see her under effect of GA I was sure gonna lose my mind... |
Wow sounds like it's been a roller coaster ride.
Hope you are holding up and looking after yourself.
I found myself way more shattered at the end of today than she was. We are home BH.
Funnily enough, dd also has a very high pain tolerance. I could see she was really suffering today but she didn't complain at all. She is only 5.
I met a mother in hospital today who's adorable little daughter has been battling a rare form of the dreaded illness for over a year now, it really put things into perspective.
Thank you Hashem for big mercies and big miracles. (no way they can be called small).
Last edited by amother on Tue, May 22 2018, 4:35 pm; edited 1 time in total
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amother
Royalblue
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Tue, May 22 2018, 4:34 pm
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amother
Brunette
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Tue, May 22 2018, 4:44 pm
| amother wrote: | Wow sounds like it's been a roller coaster ride.
Hope you are holding up and looking after yourself.
I found myself way more shattered at the end of today than she was. We are home BH.
Funnily enough, dd also has a very high pain tolerance. I could see she was really suffering today but she didn't complain at all. She is only 5.
I met a mother in hospital today who's adorable little daughter has been battling a rare form of the dreaded illness for over a year now, it really put things into perspective.
Thank you Hashem for big mercies and big miracles. (no way they can be called small). |
Which doctor do you use?
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amother
Copper
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Thu, Jun 07 2018, 10:53 pm
Royalblue- how's your daughter? what is it now- 3 wks post treatment? can you see any changes yet?
Amothers Brunette & Grey- I remember hearing something about no birth control when you have a VM. true?
so embarrassed to call dr. & ask. I'm hoping if I take something that is safe for breastfeeding that it will taka not get into milk to effect baby...
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amother
Royalblue
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Fri, Jun 08 2018, 12:52 am
| amother wrote: | Royalblue- how's your daughter? what is it now- 3 wks post treatment? can you see any changes yet?
Amothers Brunette & Grey- I remember hearing something about no birth control when you have a VM. true?
so embarrassed to call dr. & ask. I'm hoping if I take something that is safe for breastfeeding that it will taka not get into milk to effect baby... |
My daughter's arm is still tender and she can't yet bend it all the way, but BH she's doing well.
People who have blood clotting issues cannot use hormonal bc. (mini pill/nursing pill is fine). People who have these issues are very often treated using the same treatment as for vm, but I do not believe that they have the same issues. In vm it's 'extra veins', in those with blood clotting issues its 'faulty veins'. I don't think people with vm can't use hormonal bc...
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amother
Copper
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Fri, Jun 08 2018, 6:03 am
| amother wrote: | My daughter's arm is still tender and she can't yet bend it all the way, but BH she's doing well.
People who have blood clotting issues cannot use hormonal bc. (mini pill/nursing pill is fine). People who have these issues are very often treated using the same treatment as for vm, but I do not believe that they have the same issues. In vm it's 'extra veins', in those with blood clotting issues its 'faulty veins'. I don't think people with vm can't use hormonal bc... |
Tender at injection site or entire vm area? oish  . hope it gets better real quick.
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amother
Copper
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Sun, Jun 17 2018, 6:44 pm
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Royalblue- how's DD? arm still tender? what is now for you- 4 weeks post treatment?
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amother
Royalblue
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Thu, Jun 21 2018, 1:51 pm
| amother wrote: | | Royalblue- how's DD? arm still tender? what is now for you- 4 weeks post treatment? |
BH no longer tender. She still can't bend it fully. We're doing some excercises to remedy that.
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amother
Copper
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Thu, Aug 30 2018, 8:06 pm
Hi,
Just checking in to see how everyone is doing?
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amother
Royalblue
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Fri, Aug 31 2018, 1:16 am
DD is BH fine. We're waiting for a check up appointment. Doctor said it should hopefully be okay at least until she's a teenager, when she might need sclero again.
We just have to keep davenning.
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amother
Copper
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Fri, Aug 31 2018, 8:30 am
| amother wrote: | DD is BH fine. We're waiting for a check up appointment. Doctor said it should hopefully be okay at least until she's a teenager, when she might need sclero again.
We just have to keep davenning. |
So happy to hear! we'll keep her in our tefilas.
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amother
Copper
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Wed, Jan 29 2020, 12:18 am
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Gold, brunette & gray- are any of you still on here?
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amother
Royalblue
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Wed, Jan 29 2020, 12:22 am
| amother [ Copper ] wrote: | | Gold, brunette & gray- are any of you still on here? |
I'm not gold, brunette or gray, but I'm still here. 
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amother
Royalblue
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Wed, Jan 29 2020, 12:38 am
| amother [ Copper ] wrote: | Hi to you too  & hows dd doing?
Reason I didn’t “call you out” is cuz you I know & was planning to pm later |
Lol.
We unfortunately had a big painful episode, over winter break. It has calmed BH and the compression sleeve seems to be doing its job.
We're gonna keep an eye on it, if it was a random one off we won't be doing sclero again so soon.
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