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Preemie with brain bleed colic and new odd behaviors ... HELP!

Hannah - posted on 04/22/2012 ( 2 moms have responded )

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My son is almost four months old, 2 months early, so his adjusted age is 2 months from what I understand. He stayed in the NICU for 3 weeks and was 3lb 5oz when he was born. About a month later he was diagnosed with a brain bleed (which they said was mild and had quit bleeding already) and is on seizure medication. When he reached his due date he started crying.... A LOT. Before that all he did was sleep. Anyways, starting about the end of march every second he is awake he is crying and screaming. He wants to be held ALL the time which I would love to do but I also have other things I have to do (like eat and shower). He sleeps fine at night because the medicine he is one knocks him out. But during the day he only sleeps maybe an hour total and that's only if he is being held. When he is put down on his back, he extends his arms like he wants to be held. Now, especially while feeding, he will flail his arms and kick is legs so much that he can hardly keep the bottle in his mouth, which upsets him even more. He doesn't seem to eat as much as he used to because of this and being so fussy when he eats. Sometimes he will gag when the nipple is put in his mouth. Also, he has random periods of really fast breathing. I don't know how to comfort him anymore and I'm about to have a breakdown because I can't seem to get any straight answers from the docs I've taken him to. I need some advice on all of these issues... PLEASE!!!... thanks..

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Caroline - posted on 07/04/2012

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296

My daughter was born 9 weeks premmie, weighed 3 pounds & 11 ounces, stayed in hospital 4 weeks, she had many challenges. She was not able to walk un-assisted, she needed support to sit up, drooled constantly, developmentally delayed, frequent body tremors, some seizure like episodes, kind of in a daze all the time, clenched left hand, choking on her food, speach problems, left side weakness etc. She was elevated on her toes when holding her to walk, she was splinted for a leg brace & they wanted to give her botox, but after researching botox and discovering how it’s made and there were no long term studies I decided against it. Her life was restricted & so was mine ...and it looked this way for the rest of her life ... & mine. I felt hopeless.

We were attending all sorts of treatments and therapies which cost a lot. A friend told me about some special wellness supplements from a particular company, she started taking them in her yogurt, after one week she was up walking un-assisted, it made an immense difference to her brain function, memory, balance, mood & cognition in a short space of time. She began to thrive. I was elated!

I am so grateful to the person that told me about this incredible technology. She now has a life now ….. and so do I. It’s now over 14 yrs later and she continues to take these special nutrients, she has attended normal public schools, she is almost 16, in a few weeks she begins driving lessons and has just started an after school casual job in a fast paced food takeaway. Now she is taller than me.
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Christie - posted on 04/25/2012

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I would ask about reflux! Put the head of his bed up by placeing something under the feet of crib or you can place blankets or pillows under the head of the mattress! Also durning the day keep him sitting up right never have him flat on his back! There is losec and Prevacid both great medications to help with reflux! Don't let them brush you off alot of preemies have reflux due to the feeding tubes they use on them or if there I intubated and just because things are not quite formed when there born
Good luck

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