AnonymousInactive
The endoscopies can not come soon enough.
Despite getting Prevacid bumped up to 30mg/day, Evan is now fussing during feedings & pulling off the breast frequently. He never did this even when his reflux was unmedicated. Feedings are getting exhausting.
He was sleeping very well @ night as long as he was in bed w/ me. Last 3 nights he’s barely slept – restless & uncomfortable most of the night – not really into nursing, etc.
Still has blood in his stool (the most I’ve ever seen 2 nights ago). I will say though his diapers & gas aren’t super stinky anymore… some even smell sweet-ish (like a breastmilk diaper).
I wouldn’t be suprised if it’s esophageal thrush… that would cause reflux-like pain right?!…even if he wasn’t refluxing stomach acid (b/c of the Prevacid). Drs. don’t want to treat unless dx – which won’t be until endoscopy next week.
I just want my little guy to feel better…
Oh, & I’m so getting tired of eating 6 things…but don’t want to jump ship until there’s a baseline (no blood in diapers) to work from.
AnonymousInactive
YAYYY! My dd did GREAT on Goodstart after I was done breastfeeding her.
AnonymousInactive
UPDATE: First for the reflux issues, after starting Prevacid, we had a couple of very good days, followed by a couple of very bad ones. DD2 has been very fussy with eating (acting like she is starving but then only feeding for 5 minutes before starting to scream and cry; very gassy; refluxing for a couple of hours after a feeding day/night). Just when you think you have turned a corner… I have been avoiding the major allergens to play it safe. Yesterday, I accidentally ate a product with hidden soy. I am discovering how many items have soy. I also had a little bit of cheese that I was unable to pick out of a salad. I have eaten yogurt in the past without any problem so dairy may be OK.
We have an appointment with a pediatric GI doctor on August 14th. I have also found a pediatrician who has her own practice. She is pro-breast feeding and has a very good reputation. She is a parent with children in DS and DD1’s grades, so I know we will be in good hands.
As for the thrush, the infectious disease doctor confirmed that I have a systemic, resistant case of thrush. I have 3 new prescriptions, plus gentian violet, grapefruit seed extract and probiotics.
Between the allergy elimination (i.e. dairy, soy, nuts, shellfish), normal BF elimination (i.e. broccoli, garlic, spicy foods, etc.) and Candida diet protocol (no sugars, carbs, fruits, mushrooms, etc.), my diet is restricted to the point that I can only eat lean organic meat and most vegetables. I recently read that commercially raised meats with antibiotics will make the infection worse which makes it difficult to eat restaurant food. I have lost too much weight and I am weak, exhausted and discouraged.
My head hurts from trying to figure out what to do (that and the hours of a crying baby). Sigh.
AnonymousInactive
Gina, do you remember Sue? I think it was her second that had TONS of allergies, and I don’t remember what they ended up on for Taylor? Does anyone else? I will try to do a search but she sounds a lot like Madelyn as far as the allergies go.
I don’t think she ended up breastfeeding, so I’m not sure there is any help there, but I know she reacted to TONS of formulas, including the Neocate…
Let me see if I can PM her…
AnonymousInactive
Thank you, ladies, for taking the time to write!!! I appreciate each of your experiences. I started looking at the MARCI kids website and will need a little time to digest the info…but it looks like a valuable source!
We’re trying to get DS to take some solids…rice cereal mixed with BM and prune juice is what our Dr recommended to counteract any constipation. But, I can’t seem to get enough in him for the prune juice to have any effect. Technically, he isn’t constipated yet…he hasn’t had a bm yet today, which is unusual. But, I think that’s making him uncomfy.
I read on the MARCI site that you shouldn’t give antacids and a PPI (prevacid in solutab form) because there is an enteric coating on the prevacid that is dissolved by the antacid…then the PPI is inactivated. So, I can’t do that. It would have been nice to test it before we put him on Prevacid though…I agree with you there.
Recently I just started using both breasts for each feeding session since he seems to only want to eat every 3-4 hours. Previously, when he wasn’t such a pain to feed, I would use only one boob. His poop isn’t green or foamy…but I do feel a huge letdown and he sometimes pulls off right after I LD. I try to squirt some of the gushing milk onto a burpcloth. He will usually go back on ok after that.
We have had a couple of awesome nights and a few really really horrible ones. They seem to alternate.
Does the Prevacid have a little effect this soon, or do I really need to wait the full two weeks before I can officially say that it works??
I plan to spend lots of time lurking around here….thank you again for the replies…I’m just about losing my mind with lack of sleep….hope and pray this works for us!
hugs,
Brenna
AnonymousInactive
I agree that she probably needs a higher dose of meds. Also, what is she eating? Are you breastfeeding? Have you tried cutting any foods out of your diet to see if she is bothered by them?? Or is she on formula? what kind?
AnonymousInactive
Hi everyone,
I’ve posted a few times about my daughter Lucy, who is now 10 weeks old. We’ve been on Prevacid now for 11 days, though I wasn’t giving her the full dose the first two days (my doc told us to split the 15mg solutab into 4ths, which I did until many of you suggested I visit marci-kids.com; now I’m giving her 7.5 in the morning and 7.5 in the late afternoon). So far, we haven’t seen any huge improvements in her crying, although her feeds are a bit easier (not as much screaming in the middle of the bottle, she can finish 3 or 4 ounces, although she does often start crying at the end of the feed, when we are trying to burp her).
Anyway, she has cried, screamed, and generally seemed unhappy since day 1 in the hospital. We’ve had quite a journey (an emergency c-section, unsuccessful latch-on/breastfeeding, her fussiness). She is also just a “strange” baby: she doesn’t like being held, so we have to walk/bounce her around if she’s in our arms, and frankly, she prefers the swing or the bouncer seat to my holding her. She is now at the point where she will occassionally have a good 10-15 minutes of being smiley and happy in her bouncer, but then she will start to cry. And once she starts crying… well, usually nothing soothes her except swaddling and putting her down for a nap. She hates the stroller, the carseat, the sling…it’s rreally frustrating!
I know I’m kind of rambling, but I’m just curious about other people’s experiences with difficult babies: do you think it was the reflux, the “4th trimester,” the baby’s personality? I know she’s very sensitive and alert, and perhaps that’s why the reflux bothers her, whereas other, more “typical” babies (like my friends all seems to have!) aren’t bothered by it. I’m just starting to worry that she’s still going to be like this at 5 or 6 months… and that I’m going to lose my mind!
Thanks for any advice, support, etc.!
Robin
Mom to Lucy, 5/11/08, 15 mg Prevacid
AnonymousInactive
Gina,
unfortunatly I have an HMO and they don’t cover Neocate at all, but I have had great luck buying on ebay…in fact I have been getting it for cheaper than if I was using the Alimentum RTF (I was before) so that is just how I have been looking at it. I agree with the unknowns, and I wanted to give up breastfeeding so many times, but it was the ONLY thing that consitantly gave McKenzie comfort. My goal was to make it 6 months and I am two weeks away from that…I still don’t know what I am going to do, but I am just glad I am close to my goal. However, I did feel the same as you about the formula. I was sad to have to supplement, but McKenzie started sleeping through the night and got herself on a schedule of eating every three hours and was satisfied, vs. before eating almost every hour and still being hungry. Keep us posted on how it goes. 🙂
AnonymousInactive
thank you for the replies! let’s see…
she took the full-strength bottle great, so we’ll see how it goes. i’m still pumping, but feel okay about not totally breastfeeding, especially if she’ll feel better. and we are doing the RTF b/c it does not contain corn. thank you so much for that!
as for the herbs, i’ve tried many. they were all very effective for my milk supply but madelyn does not tolerate them. within about four or five days after i start them, she becomes a mess and can’t sleep. i’ve tried fenugreek, blessed thistle, goat’s rue, just to name a few. all with the same sad result. this poor little thing can’t tolerate much.
boy, i’m PRAYING we don’t have to go the neocate/elecare route. i’m very fearful of the insurance company making it a big issue and not covering the cost if we have to go that way. have you had any of those issues, emily? what worries me is she appears to tolerate things until they build up in her system then we have the same situation we are in today. i don’t want to sit back and sigh, thinking we’ve got this licked and then ten days later get hit with a tidal wave! oy! 
mentally, the diet is so very hard and i give tons of props to you mothers who are successfully doing it. for my health, mentally and physically, i hope that formula is the way to go. there are always so many unknowns….
never thought i’d be here again! wow! 
thanks again! enjoy the rest of your weekend.
trigrl2008-07-20 14:47:35
AnonymousInactive
You sound just like me…I have been on a pretty restriced diet since McKenzie was about a month old. I am still breastfeeding, but I had to supplement with because with this restricted diet my body just didn’t produce either enough milk (although she was peeing and pooping) or rich enough milk…I am not sure which. We tried Alimentum and it was fine for about 10 days and then like your daughter McKenzie got super fussy..so I switched to Neocate. It has been MUCH better in terms of the fussiness. I am not sure about Medelyn because from what I think I have read on this website, Neocate is corn based (others can chime in if I am totally off the wall) but I know McKenzie couldn’t even handle the Alimentum, even though the protiens are broken down, she needed something even more elemental than that. Good luck!
AnonymousInactive
okay, this question has probably been asked a million times, so sorry to repeat…
as you can see by my signature, madelyn has many many intolerances. i am maxed out emotionally, losing weight due to diet restrictions and stress, etc. i would like to try some alimentum with madelyn, but am concerned. we tried one other day, only for that day, and while she was great that day, she was very fussy the next day. i was tired of having a fussy infant on formula and try to keep my milk in at the same time (in the event she didn’t tolerate the formula) so we elected to go back to breastfeeding and i would just really toe the line with my diet and deal with the restrictions. this past week i took some blessed thistle to help increase my milk supply, which worked great but madelyn had a reaction to it, as she seems to with pretty much anything. she is fussy, rashy and won’t sleep. her reflux, however mild, kicked into high gear. now that it’s been about 30 hrs since i took the herb, she’s much better but my milk supply is going down. long story made a little shorter, i’m ready for a change. i would love to try alimentum again, but don’t know how long to give it. my dh agrees we need to stick with something and give it some time, and i agree as well, but i’m concerned. how long? i am looking for a miracle, as we all are. i would love for one thing to not be a question when she’s having a bad day, i.e. was it something i ate/took? thanks so much for everything! have a great day!
AnonymousInactive
kevieb wrote:
i am assuming that you are saying that the thrush infection that appears to be limited to you is on your breasts, since you are breastfeeding? if that is the case, you and your child both need to be treated at the same time—even if your baby is not showing any obvious symptoms. if you are having this much trouble with yeast, there is a good chance your baby is, also—–don’t believe your doc if he says esophageal thrush is rare—two of my kids have had it with no obvious symptoms in their mouth.
we had this same scenario a few years back and i asked if sylvia could have thrush without it being obvious. family doc said no—ped gi said, yes, it could be in her esophagus. (i couldn’t get both of us treated at the same time because of docs on vacation) we treated her for esophageal thrush and she started to sleep, eat and gain weight. i quit nursing, but she was 16 months old at the time and i wasn’t being treated yet.
just my opinion, but i would not quit nursing yet and would insist on both you and your baby being treated with a good course of diflucan—not the crappy nystatin.
call the ped gi’s office and ask to be put on a cancelation list, it might get you in sooner.
Very interesting re. the esophageal thrush. I have repeatedly asked if the infection on my breasts could be causing/complicating her reflux and was advised no, because there was no visible infection in her mouth. Thrush started with my breasts about 1 day post discharge. I have taken Diflucan for a total of 4 weeks. At about 3.5 weeks into by Diflucan treatment, the thrush spread to my mouth. My 6 year old daughter may also now have it in her mouth too (white tongue/sore throat), notwithstanding my herculean efforts to sanitize. Since it appears to be a resistant strain, they swabbed my mouth to determine the strain and sensitivity to particular medication. Once we have the results, we can hopefully find a medication that can treat me, DD1 and DD2. DD2 has received Nystatin and 2 courses of gentian violet. I am due to repeat GV again, which may give DD2 some relief if it is a complicating factor. I have an appointment with a specialist for me on Monday (after weeks of waiting). I am happy to hear that the pediatric GI doctor will be able to help DD2 with our thrush issue. Unfortunately, my OB, GP and the pediatrician’s office have been unable to come up with alternative solutions once the first line treatments failed us. I will definitely ask to be put on a cancellation list, or otherwise call in as needed to see if there are any cancellations. This has gone on far too long!
How did you get rid of thrush anyhow? I have been trying GSE, GV, Diflucan, probiotics, APNO and Motherearth Thrush cream without success.
AnonymousInactive
What they saw was spasming of the duodenum. My pedi consulted a pedi GI specialist (we don’t have one in my town) and he said it was most likely a protein allergy/intolerance that caused it. I have wondered about celiac myself but have read that it usually starts after exposure to gluten directly. There’s not much info about breastfeeding and celiac. I am on the elimination diet so I don’t know if she’ll react to gluten. Perhaps I should eat some flour.
Do you have any more information about spasms in the duodenum?
AnonymousInactive
i am assuming that you are saying that the thrush infection that appears to be limited to you is on your breasts, since you are breastfeeding? if that is the case, you and your child both need to be treated at the same time—even if your baby is not showing any obvious symptoms. if you are having this much trouble with yeast, there is a good chance your baby is, also—–don’t believe your doc if he says esophageal thrush is rare—two of my kids have had it with no obvious symptoms in their mouth.
we had this same scenario a few years back and i asked if sylvia could have thrush without it being obvious. family doc said no—ped gi said, yes, it could be in her esophagus. (i couldn’t get both of us treated at the same time because of docs on vacation) we treated her for esophageal thrush and she started to sleep, eat and gain weight. i quit nursing, but she was 16 months old at the time and i wasn’t being treated yet.
just my opinion, but i would not quit nursing yet and would insist on both you and your baby being treated with a good course of diflucan—not the crappy nystatin.
call the ped gi’s office and ask to be put on a cancelation list, it might get you in sooner.
