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Help! When does the pain end for the baby? I've been in tears...
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Anonymous
| I just want to aay that you are doing a great job! Continue to take care fo yourself as well!! |
Anonymous
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Hi OP, another well-wisher here. I have seen the speech language pathologists at the Language Experience in Chevy Chase MD work with a young child around 4 years old on a swallowing disorder. They are not only great at what they do, they have hearts of gold (as do SLP's in general.) I am not sure if they are experienced with newborns, but I think it is worth a call to see if they are or if they might recommend someone. Best wishes...you are in the thoughts and prayers of many other DCUMs.
Language Experience 5530 Wisconsin Avenue Chevy Chase, MD 20815-4300 (301) 654-1666 |
Anonymous
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A PP recommended the Marcikids website for info; I'd second that. It is filled with moms of kids with a variety of reflux and other very serious feeding issues, and they may have some suggestions on treatments as well as practitioners. I'd suggest copying your posts here to that website and seeing what parents of kids with similar challenges have found to be helpful. I had a much less severe set of concerns but learned a ton from reading the posts there.
I'll also echo some of the PPs' hopeful notes. My second child had horrific reflux and literally screamed all day and night for his first few months. He just turned one, and when I watch some of the old videos from his early months I can hardly recognize this scrawny baby, barely able to react to anything, in the fat sociable toddler he is today. He's off prevacid and after a lot of PT is a perfectly normal 1yo. I wouldn't have believed it a year ago, but it's amazing what the right treatment and the magical powers of maturation can do. I hope you see small signs of progress every day and will keep your family in my thoughts as will so many other DCUMs. |
Anonymous
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I agree that Children's Hospital is not great. If it's not a classic case of reflux that can be treated with meds, they don't know what to do.
Did you have the swallow study done? Check out this sight for info on dysphagia: http://www.childrenshospital.org/az/Site815/mainpageS815P0.html It can mimic the symptoms of reflux. You may want to try adding Simply Thick to his formula to see if it helps. http://www.simplythick.com/ My DD was not helped by the folks at Children's. I took it upon myself to add Simply Thick to her formula because I thought she had a swallowing issue and it helped. Still took a long time for her to relearn to eat, but it did help. We used the nectar consistency. I would also try to get into Kennedy Krieger and I agree the Marcikids website is helpful. Also, I know Zegrid works for a lot of people but when we tried it it made her oral aversion worse because it tasted awful and we had to force it down her throat. If you are using the liquid Prevacid you need to switch immediately to the solutab. It is easily dissolved in water and can be syringed into his mouth. Good luck to you. |
Anonymous
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OP here again.
Just a quick reply, as I have only 10 minutes before the older son wakes up... - I already called the Breastfeeding Center in mid January. Pat did not have any advice on a specific SLP unfortunately. - KK does not work with children under 1 years old. They might have SLPs that I can talk to, but their program is not for infants as young as mine. - DS has not done any genetic testing. This is something we can consider. - Modified barium swallow (MBS) study and Upper GI were unremarkable. Although I don't necessarily believe the MBS results necessarily since the test only captures a moment in time and it could be that at that time DS was not aspirating. Not sure if they will agree to doing a second MBS. - Endoscopy and biopsy was done while we were at the hospital. Results showed that the inflammation was not significant. According to the GI, this means that he was healing. My husband thinks that it could be the other way where it actually might indicate that the inflammation could be beginning. That said, the only way to verify who is right is to do another endoscopy which we don't know if we're willing to do. - We have not done the bath feeding. It's something to consider. - We have not done simply thick. Can I buy this at a local store or does it have to be ordered online? Three weeks ago, I had asked the SLP at Children's and she doesn't want us to do it yet. She is not very responsive in general and takes forever to reply to emails and phone calls so I think we'll proceed on our own. I brought her non-responsiveness to our GI at Children's but he shrugged and said I should email her again, which I have. - We have not tried switching medication. This is something I will bring up to the GI, although I think it will be dismissed. - We bought the solutab version. DS gagged and wanted nothing to do with it. I think it made him orally even more averse. We can't push it down his feeding tube as it will clog up. So now we are back to the suspension version. However, we get smaller refills that lasts two weeks in hope that it will stay stable. - I have tried switching to Elecare for 4 days, mixing half breastmilk half formula. DS wants nothing to do with it. At least with breastmilk, he would sometimes nibble on it while asleep. For now, I would love to talk to the mom whose child was on the feeding tube to get a feed back on her weaning technique. If you could, can you please email me at nomoretube@gmail.com. Thanks again. |
Anonymous
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You can buy Simply Thick online at:
http://www.simplythick.com/gestalt/go.cfm?objectid=BC054A75-8764-4A45-AA18F05680CFB682 If you click on the "Where to Purchase" link on the right side of the page you may find some local places in Virginia to buy but I would call first. |
Anonymous
| OP, my heart goes out to you and though I'm not a praying/religious type, last night I asked my 7 week old to send some good feeding vibes to your son. I just also wanted to say that I have a friend whose child was born with a variety of severe defects that required immediate surgery and put him on a feeding tube for over a year (cleft palate, esophagus not properly attached to stomach, various other physical issues that made feeding impossible from the start). He had very big physical and developmental challenges--more significant than your son's (I am assuming) and yet with good OT he did learn to eat, talk, etc, and is now a very happy, sociable child. He's still slight for his age, but otherwise is doing well and the trauma of that first year has affected his parents much more than it appears to have affected him. Kids are resilient. Anyway, I sincerely hope that things turn around for you ASAP and please know that we're all thinking of you and your family. |
Anonymous
| Did pat Shelley check under your babys tongue? She diagnosed my cousin's baby with a something "frenulum" (?) and recommended a dr who did a simple procedure to cut/fix it. Apparently it made it difficult for her son to suck and swallow and helped him improve greatly (he also appeared to have an oral aversion and was taking in very little). Interestingly, her ped and gi seemed not to know about this issue and had never considered it. |
Anonymous
Baby had been nursing fine for a month until reflux pain kicked in. This was clearly due to reflux pain. there's a good chance that pain is under control now (due to meds) and now the issue is severe oral aversion. This is a behavioral issue that is incredibly hard to overcome although it is possible in most cases with a great deal of time and patience and work. |
Anonymous
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OP, regarding Prevacid dose -
Baby can safely take up to 30 mg daily (approx 4.75 ml 2x day). I'd push with all my might to get him on this does if at all possible just to make sure you aren't dealing with any residual reflux pain while you work through his aversion and tube feeding issues. Also, keep on the 2.5 mls of Zantac as well. Mine did both until he was 6 months old. |
Anonymous
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My baby was also on that dose 10:53. Some doctors are not aggressive enough and don't get the pain under control.
OP, we found that baths by candlelight helped get the baby more willing to eat and eventually to latch. Express some milk so it is on your nipple, see if you can even get him to lick or nuzzle it. I'd caution that when trying something like the Haberman, go very slow with amounts, if you "overload" and it comes back up they are more likely to resist it. It is a slow process but don't give up. The more you can distract him from the fact that you are feeding him the better. Walk around, talk, sing. When my baby was a little older we'd read books or put her in front of the tv. I also had some luck with wearing her in a sling in only a diaper with me topless (it was summer, adjust as needed), lots of skin to skin contact is really soothing and having access to your nipple might help. Dreamfeeds are also likely to be one of your best bets, again, don't overdo re" amounts, just do as often as you can or as the baby seems to tolerate. Can you hire a sitter to spell you some during the day so that you can catch up on sleep you miss at night? I knew someone who actually did dreamfeeds in a warm tub, it really helped them get off the tube. I just wanted to confirm, up to 2 months he was nursing and gaining well? What have you eliminated from your diet at this point? One other tip, we did prevacid, zantac and 5 ml mylanta several times per day, if he resists the other meds or spits it out, he may be more willing to take the mylanta since it is sweet. Our doc said only the aluminum free cherry version, we used a house cvs brand. You can't overcome the aversion until the pain is well controlled. Hugs to all of you. You CAN do this OP, just work with him bit by bit. I'd also recommend that kidswithfoodallergies.org site. They will have ideas about which hypo formula might be more acceptable, how to flavor it with sugar, etc. |
Anonymous
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OP, I think that you are going to get more help from parents than from experts, sad but true. I hope some of the parents who have been in the trenches will reach out to you at your new address. We spent a lot of time trying to find a doctor who could help, they don't seem to like cases that don't demonstrate their authority/mastery. Or the parents of those cases.
Best of luck to you and your sweet baby. The fact that he is still at such a healthy weight and not FTT is a testament to what fantastic parents he has. One thing that hasn't been mentioned - if you don't know how to do it, see if you can get a session of baby massage with Pat Shelly. It is really relaxing for the baby and studies in India showed that babies massaged every day actually gained better on fewer calories. It is also thought to improve digestion. |
Anonymous
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OP here.
Thank you to the moms who have emailed me at the nomoretube@gmail.com account. I heard from one mom who wanted to suggest her Speech Therapist. I have responded back to your message and I am interested in getting her contact information. Can you post her information on here or email it to me? Thank you. |
Anonymous
| OP, I haven't read through the entire thread, but have you considered a G tube? A good friend of mine resisted it for months, but was so relieved when she made the switch from the NG tube - there's less tugging by the baby and less discomfort. There are infection risks, obviously, and it doesn't solve your concerns about dependency, but it might be a little less horrific than the NG tube. I know she wishes she'd done it much sooner, FWTW. |
Anonymous
| Thank you OP for the updates. I keep meaning to check every few weeks for a progress report and keep hoping that things are improving. I am so sorry that they are not. My thoughts and prayers go out to you. And I hope that some of the suggestions from other posts on DCUMs help you find an answer. Please keep us updated when you have time. And keep taking care of yourself as well as baby. |