Posted By Posting
Oct 07, 2009
icoe
new to pager, intro, questions, etc....
Hi everyone. Here's my story (copied from profile)... Kaelyn is a breastfed baby, (July 27, 09) currently on Pepcid, which has seemed to ease her discomfort a bit and even helped a little with the spitting up, briefly. She has recently experienced a resurgence of symptoms and is having a very hard time keeping anything down. The only thing that seems to help is keeping her upright, and even that doesn't help much. She is two months + as I am writing this and is only a couple of ounces over her birth weight. We have been unable to set her down at all in the past few days as she keeps doing this "starfish" thing where she throws her arms and legs out straight, opens her eyes widely (as though she is scared) and turns red. At first we thought it was reflux pain causing her to do it, but I think she might actually be stopping breathing. I am going to ask the Dr. about getting an apnea monitor, and I am looking into the Tucker sling as well. My back hurts so badly from holding her all day and night, and we are just about at our wits end with exhaustion and worry. The Drs have put off doing any tests so far because of the invasiveness, but I am wondering if we might need to go ahead and do them. I just want her to feel better and be safe. I am sure that many of you can relate to that! Oh, and FYI I am a vegetarian and have been eliminating all dairy and soy since August. I know! What CAN I eat?!? Also, my brother has some GI issues, so I am wondering if there is a connection, but the doctors have never been able to give him any decent answers... and his did not seem to start until he was a preteen. My biggest question is: What worked the best for you? Is there anything you know now that you wish you knew at the beginning? I look forward to getting to know you. Best wishes for all of you and your precious little ones!
Oct 07, 2009
icoe
oh, and...
I was also wondering about thickening feeds. Our dr is recommending it but I read it can actually worsen silent reflux and cause more pain, plus lowering the immunities provided by breast milk. I am not sure if this is the most updated info though....
Oct 07, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
How and when are you giving meds??? What are the doses and what form does the med come in?? How long have you been using the current med?? What was suggested for thickening since you are BF, do they want you to pump and thicken??

Frankly, time was our best friend. That and hefty doses of a PPI and a motilty drug to move Jedd's GI system since it stood still some days.

As far as stopping breathing, how does her color look when that happens, does she turn a dusky/blue color, does she gasp, what about her skin around her eyes or her fingernails??? How do they look??? I'd keep a close close eye on this for sure.

I'm not sure why testing is not an option.....there are some pretty simple tests that are not invasive at all. You can do an upper GI and a Swallow study. The S.S. will show you if she is swallowing properly and IMHO probably should be done to check out that gasping issue for sure.

As far as what to eat??? I have NO idea, Jedd was tube fed formula.....I tried nursing and pretty much about drive us nuts trying to do it. Jedd's body was just too weak to suckle. :(

Oct 08, 2009
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
If the pepcid is not working well enough, I would ask to try a PPI(Proton Pump Inhibitor) like Prilosec or Prevacid. She sounds miserable and needs more help. Keep calling and pushing them. In my experience, our Pediatric GI would try the stronger meds before doing any tests to see if it helped. Maybe you could do that and put off an endoscopy until she is a year old. They are pretty easy tests, though, very low risk. My youngest has had 3 endoscopies since age 1. He was pretty miserable though until finally we got him on a PPI, but I had to ask for it, keep calling them, don't let them dismiss you as an over worried Mom like they did to me!
Oct 08, 2009
icoe
update
We went to the Dr today and there is a new pediatrician in the office w/ GI experience.... He put us on a PPI (though I'm not sure which one yet as they faxed the prescrip in and have yet to pick it up). He seemed confident that it should help with the "starfish" thing as well, to the extent that he wanted to wait on looking into an apnea monitor until we see how the medicine does. He also wants me to eliminate peanuts and eggs from my diet in addition to everything else I'm eliminating. Thankfully I am going to be working w/ a nutritionist to make sure we're eating OK. In the meantime I have ordered a tucker sling that should be here next week....
Oct 08, 2009
wenbomama
I am so sorry for what you have been through. Like icoe said, thickening the formula with rice cereal unfortunately worsen my son's condition, he basically stopped eating. I still don't know why. Tucker sling helps quite a bit I think.
Oct 09, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
If you haven't already been there, I highly recommend the Mother to Mother Forums at La Leache League (www.lli.org) for breastfeeding support, as there are many of there who have been breastfeeding children with reflux, food intolerance and apnea for a long time (2 1/2 years this month for us!).

I also highly recommend keeping a log of the "starfish" behavior you describe -- when it happens, any observations regarding gasping, choking or gagging in proximity to it, proximity to feeding, state of wakefulness/sleep, etc. This can be very helpful when it comes to talking with doctors down the road if things do not improve. I also recommend learning to check her pulse, and doing so periodically, so that you know what is normal for her and can tell if it is radically different, as an obstruction of the airway often has an associated rise in heart rate at the outset, and decrease if oxygen levels go low. If you feel concerned about her breathing during sleep, there are apnea monitors (like the angel care monitor) available OTC.

If you haven't already, I would also suggest experimenting with different slings, carriers and packs so that you can wear Kaelyn upright, or relatively so. It can be exhausting to hold a baby for extended periods of time, but wearing them can allow you to keep them close, upright and happy without forcing you to baby juggle. I suggest experimenting because babies with reflux can be pretty picky about how they are positioned in a pack.

I hope the new meds work well for your little one.!

Oct 09, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Honestly, if you are concerned about breathing then I would push for the apnea monitor. Worst case the thing will drive you insane with false alarms but it may provide you with peace of mind. :)
Oct 12, 2009
icoe
update...
Thank you all. You have given me a lot to think about. Quick update... the new ped called over the weekend and said he wants to see her today... that he has been studying her case and consulting w/ some other docs and wants to check out some more things and change some things. At least it seems like he is really looking at this seriously. The new meds seem to have helped a bit. She is spitting up less frequently and probably in smaller amounts. But she is still having some times where she is def really uncomfortable and she doesn't want to be horizontal at all. Also, she hates the new medicine so it is a nightmare trying to get it down her. I tasted it and it is very bitter, so no wonder! Poor little girl.... as if she didn't have it bad enough already.... :( Should know more this afternoon....
Oct 12, 2009
wenbomama
Oct 16, 2009
icoe
another update
It has been a realllly long week. Aside from me getting the stomach flue (yay!) we have been spending a lot of time at the doctors. On Monday we were put on new meds... Reglan in addition to the ppi (which is omniprazole??? sp? or something to that effect). Dr. also wanted to get a urine specimine to rule out any type of infection. They tried to do this with a catheter at the dr. office then said their catheters were too big, so they abandoned. It was nightmarish anyway. She screamed the whole time. Then they sent us to the hospital for an ultrasound, which showed normal. We went back to the dr. today and she gained an ounce. But she has been really cranky and odd, which we think is from the reglan, but could be the onset of stomach flu. The dr took her off the reglan and said if she's not acting normal by monday they will probably do a spinal culture, to be sure there is nothing going on w/ her brain stem. Then he sent us to the hospital for the catheter and blood tests and a barium swallow. The barium swallow looked normal. The ER and the nursery tried to do the catheter on her and both could not do it. So the dr said to send the smaller cath over w/ me and he would do it. So we get attempt number 4 on monday. It is so horrible having to watch my little girl go through this! And there is flu everywhere. I keep feeling like we are in one of those "outbreak" movies. I'm really scared that we are exposing her to germs that she may not be able to handle.
Check with your
doctor first!