Need help again

[Halle's aunt]

Hi Everyone:

Halle has been really good for 3 1/2 week until now. She's not feeling good, she's had two clampdowns in the past couple of days. She'll smile a little then grimace like her stomach hurts. She's been sleeping more also. She's not running a temp. Could the clampdowns be caused by gas? Everytime the Doc's start talking about her coming home it seems as though something new happens. Halle has been at UNC NICU now for 10 months. Does anyone have any ideas? You all have helped so much with your suggestions.

Thanks

Sharon

[Melisande]

I don't know if I am of any help or not, but Donovan had/has breath holding spells where he holds his breath, clamps down and turns blue, black, dusky, whatever. They were really bad when he was little, but as he gets older, they are less and less. We always had to bag him, but it didn't really do any good. Now, he just breathes through them. None of the doctors can forsure give me an answer. They don't really know much about it. I haven't heard of very many cases of breath holding from birth, which is what Donovan has done. I know there is a lot of stuff about vagal nerve stimulation and gas or having a BM. (research) With Donovan's syndrome, they think it is related to CO2 levels. I don't know if that's helpful or not. Someone else may have some better information. Donovan did his spells no matter when or where he was. It was worse when he was/is sick, but otherwise, they've always remained constant and rather unpredictable.

[sandra]

Brian did that a lot when he was having a BM. Sometimes for no apparent reason. He even did this about 2 nights before he was released to come home. They were unpredictable, so once they knew he wasn't sick, we went home anyway with the knowledge of how to handle it. It did happen at home and we handled it. He has not done it again since he turned 1. Seemed like the magic number.

[Carriestockmal]

Sharon - my son had spells like you describe too. And they told me then that lots of babies do that for a variety of reasons. Later on we discovered that Jack had a condition called pulmonary hypertension - secondary. It was caused by how sick his lungs were and made worse by an operation he had to have. THey can't say for sure if the spells were caused by a pulmonary hypertension episode or not, but once he got his trach, and got on meds for pulmonary hypertension - they spells didn't happen anymore. Pulmonary hypertension sounds really scary at first, but it is treatable, and can even go away altogether like Jack's did and a few other kids on this board did.
Good luck and I hope you find the answer.

[TeraNicole]

Zachary does the same thing when his stomach hurts. He tenses up which makes the vent high pressure and passes gas and then he's fine. When he's got stomach cramps, its awful. Is it possible she has reflux issues??