Along this journey there have been quite a few ups and downs and bumps in the road. It has been a long road and we’ve got a wee bit longer to go, but the sun is finally begining to shine on the horizon.
The most repeatative bumps are feeds. They go great for a day or two then have to be stopped because she isn’t tolerating them.
Like I’ve said many times a parent knows their child better than any doctor ever could. So I had to laugh when one doc said there was nothing wrong with my princess and that she was just a fussy baby. After getting over the initial shock of that comment I asked the doc to explain to me why every time the feeding pump sends more food through the g-tube into my daughters tummy, she cries in pain. However within an hour after stopping feeds completely she goes back to being her happy content self.
Needless to say – they couldn’t.
Another GI test was done on Friday, this time they put the solution through the g-tube to follow the exact path her food has been taking. Within 10 minutes the doctor monitoring the x-ray found the problem causing all my daughters discomfort – probably since she’s been born.
The Coles Notes verson: when food goes in the stomach it then goes through the duodenum and makes its way through the small intestine then large with a progressive wave of contraction and relaxation until the contests are forced our of your system. The contraction and relaxation is called Peristalsis. My little ladybugs tummy can’t do this so food just keeps building up in her tummy causing discomfort until it everutally and very slowly gets forced through.
Fussy baby my a**!
According to the GI specialist there are three causes for the absence of Peristalsis.
1. Caused by the surgery – ruled out
2. Part of NYDS (not yet diagnosed syndrome)
3. Sevre milk protein allergy
There are three treatments
1. Erythromycin (2 weeks on 3 weeks off)
2. A stronger med than the one she is on now for digestion (can’t recall the name – but could cause neurological side effects and was taken off the market 10 years ago. However is apparently is still available in certain cases.
3. Neocate Formula for infants with sevre milk/soy/food protein allergies or intolerances.
Yesterday, for what I pray will be the only time, my princess started up on feeds again. This time at a very low rate and with the special formula.
I truly hope that the cause is only (used loosely) a milk protein allergy and the new formula helps everything get back on track.
One day at a time.
Milstone Celebration: My little ladybug got her first tooth (on the top) on September 8/10 and the second looks like it will be here in the next few days. I love milestones!
I wanted to thank everyone – family, friends, friends of friends, and especially the families that know exactly what I’m going through, for being so supportive through out everything. This blog has become my release and my way of connecting with everyone on a whole new level. I’m very grateful for all the on-going support. Thank you. x0x0
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You are absolutely right to trust your keen Mommy instincts.
Hey sis, I didn’t know which comment to add. :).
I’m so glad I went with my instincts and kept pushing for the tests.
I can’t believe how much much you’ve all had to go through – and for that doctor to say she’s just a fussy baby….give me a break! I’m proud of you for fighting for what you know/knew was right and (as was so accurately mentioned in the above comment) trusting your instincts. Hang in there Poppet…and don’t forget to draw on some of the love and support and energy from those around (physically and emotionally/mentally) you. I think of you often and am in awe of your strength and wonderful attitude.
Love and miss you and send you all boundless love and energy!!!
Way to go, sticking up for Amira! You are so right, mothers have the best instincts and we have to follow them. There are many dr’s who understand that and trust the mothers and then there are those “others”.
I was speaking to one of Katetlyn’s old pediatricians after I got that email from you about that med. He said the name of that one off the market but I can’t remember, starts with “cir “. He said that there are 2 other meds that can be used before trying it, one was domperidone which I seen one of the other CDG moms said their child used and I THINK Katelyn was one for awhile too. He explained the ‘cir’ one to me so now I understand your hesitation to use it.
I’m really not that far from you, if there is ever anything I can do for you or you just need to talk or vent, please feel free to contact me anytime. Sometimes its nice to have someone that can relate to your situation. 519-825-7703, I’m just a phone call away!
keep well!