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LIAM COUNT 32K

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15 years 1 week ago #623 by liam12
LIAM COUNT 32K was created by liam12
Hi Liam spent most night in hospital with a 2 hour nose bleed,count up to 32 with 3 days on predi,i feel sometimes its never ending,he had 4 blood noses yesterday,if he keeps having them they will gwt him to see an ENT specialist,has anyone else had to see one? thanks jenny :unsure:

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15 years 1 week ago #629 by dots
Replied by dots on topic Re:LIAM COUNT 32K
My son (9 in a few weeks) has nosebleeds fairly often, with two significant ones (four and five hours) that resulted in his needing iron supplements for three months. The right side was cauterized in the emergency room during the five-hour bleed, and that side hasn't bled since. It's been a year since then. His ENT and his hematologist (and my husband and I) all want to cauterize his left side, which we'll do after he relents and has his next IVIG infusion.

I'd get Liam to an ENT sooner rather than later so that the bleeds don't get worse. Four in one day is a lot; two hours is a long time.

Good luck.

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15 years 1 week ago #634 by liam12
Replied by liam12 on topic Re:LIAM COUNT 32K
thankyou so much for that info,the doctor didnt explain much about the ENT,and i must have been a bit tired because i just nodded and said ok,<long night.>liam is seeing his heamo on tuesday and i will definately be asking kim about it. thanks, jenny

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  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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15 years 1 week ago #637 by Angel85
Replied by Angel85 on topic Re:LIAM COUNT 32K
Wow, 32 is not too bad, thats good.

I have seen an ENT and I just thought I'd give you an honest opinion from someone who has had their nose cauterized more times then i can count when i was younger. I hated having it done and I was older then Liam when i started having it done, it is honestly worse then having blood taken or an IV put it. It is the worst feeling in the world and at his age, you will probally find it is hard to hold him down to have it done cause he will most likely try to fight it.

A two hour nose bleed and 4 in one day is a lot and probally does need to be looked at by an ENT, but i just thought i'd make you aware that it isn't a pleasent thing to be put through. I agree they did work for me for a while, but like the pred it too stopped working after a while, so i needed it done more times for the nose bleeds to stop.

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15 years 1 week ago #639 by liam12
Replied by liam12 on topic Re:LIAM COUNT 32K
thanks for your honesty,its given me something to think about

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15 years 1 week ago #642 by dots
Replied by dots on topic Re:LIAM COUNT 32K
Our son's docs are adamant about the cautery because of the two significant bleeds he had. The ENT will be doing it in hospital so that H can be sedated. They'll give him a little oral Versed (generic -- midazolam), then place the IV and do what's called "conscious sedation" so that he's asleep during the procedure. Most kids have it done in the doc's office, but not if there's sedation involved.

Cautery works for a lot of people; it doesn't work for everyone. I figure if we get at least a year without nosebleeds we're ahead of the game. Angel85, your perspective is quite important because you've had it done, and it wasn't entirely successful.

Jenny, make sure to ask the ENT and the hematologist about everything you can think of, including what happens if it doesn't work, and exactly how the procedure will be done. Angel's not kidding when she says it's unpleasant -- that's why we're sedating my kid.

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15 years 6 days ago #652 by lucidawn
Replied by lucidawn on topic Re:LIAM COUNT 32K
The most awesome thing about Versed is that it causes them to forget everything. Your son won't remember anything about the precedure. He'll remember right before he got the drug, and then he'll remember waking up. That's all! My son has had it many times for his heart surgeries and caths, and I've had it a few times too. Its like a nice relaxing sleep:). You kind of wake up wondering when its all gonna start.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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15 years 6 days ago #665 by Uhma
Replied by Uhma on topic Re:LIAM COUNT 32K
We saw an ENT for our 3 yr old son's nosebleeds. They offered to cauterize but also suggested vaseline swabbing in the nose, humidifier and daily saline rinse. It has been very effective. Before this regiment he became anemic from his nosebleeds but now we have occasional bleeds, no longer that 15 minutes. His counts are usually around 60k but he's had nosebleeds even with higher counts. Good luck!

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15 years 4 days ago #709 by liam12
Replied by liam12 on topic Re:LIAM COUNT 32K
thankyoy to every one for your feed back,its been a really big help, jenny :)

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