Whoever coined the phrase "sleeping like a baby" has probably never met an infant like my Bambino. He rarely sleeps for three hours straight without waking up in a bout of itch. Me and Hubby take turns pacifying and comforting him a number of times each night. We'd be so exhausted in the morning. At least I could catch some shut-eye during the day. Hubby, though, sometimes have to resort to energy drinks in order to get through the entire work day. Sometimes I feel like I'm at the end of my rope. It is very taxing. More than anything else though, I am worried about the baby. The growth hormones are supposed to be doing their jobs while he's asleep. But what if if he rarely sleeps?
Not even Doxepine, a controlled substance that was prescribed to help him "sleep like a baby" doesn't do the trick. We now alternate between four different antihistamines that's supposed to make him drowsy. Sure, it makes him sleep - but not for more that a couple hours.
The itching is very, very bad. Sometimes, he'd still rub his wrists against anything rough even when he's asleep. Restless sleep. And then he'd wake up with red, sore and sometimes bleeding hands and scalp.
In my desire to help him get more sleep, he takes his naps in my arms because he would wake as soon as I put him down. This way, he gets up to three hours of nap time (if we're lucky). My arms would be numb and I would hold off any desire to go to the bathroom, and I would be unable to pick up any calls - but if he gets decent, quality sleep, then it is all worth it.
And every night, I pray that tonight will be better than the previous night.
July 2009
July 2009
About The Author
- Karen
- After almost a year trying to find answers, my baby boy was finally diagnosed with Netherton Syndrome in 2008. There are very limited information about this disorder in the Web and the ones available are mostly written in confusing medical jargon that perhaps only someone who has medical school background can comprehend. This space is my attempt to keep track of this rare genetic disorder by writing about our own experiences in managing his ailment. I hope to find other families who are in the same situation as us - there is strength in number.
Bambino Halloween
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4 comments:
Hey K!
I hope that every night is better than the next night for you as well.
BTW- since I saw your other post. maybe you can ask follow your heart, if they have any topicals for the itching. I tend to use Rescue Remedy on everything- a cut, an itch, and it usually helps. But perhaps they have something specifically for the itching.
See you at Zumba :)
HUGS!
Will do, thanks! I've also been meaning to check out Whole Foods for such.
Hi,
I've tried chatting w/you before, my 2 year old son has Nethertons as well. Have you tried Hydroxizine (Atarax) yet for the itching? Our little man is doing better w/the sleeping at night, but we also have been putting socks on his hands at night, otherwise we too would wake up to a bloody scalp and sheets. We even have to tape the socks to his pj's so that he isn't able to slip them off. Those little socks help immensly in preventing scratches and infections on his skin.
Wendy
Karen, you can reach me at wbreen@hotmail.com or you can also find me on facebook at Wendy Hutter Breen. I would love to talk to you about my little guy!
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