Posted By Posting
Feb 23, 2009
mommato3
New here and need suggestions
Hey! I am new to this board and so glad I found it. I have a 3 month old that suffers from GERD. He has dilated kidneys, micrognathia(recessed jaw), hypotonia, and the reflux. Feeding him with the recessed jaw has been very challenging in itself (he can not get milk out of a regular bottle) but the reflux is the worst. He was vomiting every bottle (almost all of it) and Dr did an Upper GI which showed significant reflux and he appeared to be lazy with emptying his stomach. Dr put him on Reglan .5 ml 4 times a day. This helped the projectile vomiting with no side effects. He still silent refluxed all the time and began showing great discomfort. It takes me an hour to feed him (due to GERD and jaw). Dr put him on 7.5 mg of Prevacid in addition to Reglan. He also ordered a swallow study b/c he was gagging on his bottle all the time. Swallow study showed nothing. He has had two spells though where he literally choked (scared me to death). I just got doc to boost his Prevacid to 15 mg. She told me to give it to him all at once but do you think I should split the dose? He is 13 lbs. We have tried rice cereal in bottle and that made things worse. He is currently enrolled in physical and speech therapy. The nutritionist just upped his formula to 24 calorie formula as he is 99th for his heighth and only 50th for his weight. He hasn't gained any weight in a couple of weeks. We've tried a lot of formulas and found Alimentum Ready to Feed works the best. Any other suggestion?? Mealtime is so stressful. He cries the minute I lean him back into my arms to feed him. Thank you so much. This is my third child and my other two have no other health issues. My oldest had severe food allergies as a toddler but is outgrown most of them. It is very encouraging to read all of your stories.
Feb 23, 2009
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
hugs to you! You have got your hands full!

13 lbs for 3 months is good! Joslyn still is not in the 50% and she is 10 months.

many hugs

Feb 23, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Yes, 13 pounds does sound good for his age, but the growth pattern is what is important, if he is dropping off in percentiles.Brent started off huge weighing over 12 pounds at birth,though he was sick to begin with, and then plummeted down the charts the sicker he got and became FTT.The weight/height ratio is clearly off. You may find trying an elemental formula such as neocate and elecare helpful.Reglan or erythromycin may be very helpful for him as well, it strengthens the LES tone, and helps the stomach empty faster thereby decreasing reflux.I see he is on reglan- it is weight sensitive, so if he weighs more than he did when it was prescribed, it may need to be adjusted, you have to stay on top of the dose. I think you should split the prevacid dose, kids metabolize it faster.Is the upper GI the only testing that has been done? Huge hugs, anything I can help with, just let me know!
Feb 23, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
a lot of women on here will tell you that splitting the dose of Prev. helped alot. My son never had night issues, so I give it all in the morning which is when he is at his worst. I tried it both ways...I would suggest the same for you...good luck!
Feb 23, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Hi - regarding the recessed jaw, have you seen a craniofacial specialist about that? My son has micrognathia but he has a cleft palate to go along with it. Perhaps an ENT specialist can examine the baby's airway - kids with Micrognathia have smaller airways which can complicate breathing, especially if the baby is refluxing. Perhaps this could be related to the choking.
Feb 23, 2009
mommato3
Thanks for the responses. He was a 9 lb baby to start off with. The concern is the ratio for his height/weight and that he has dropped some in his weight percentiles and is currently not showing any signs of weight gain. I will split the dose. I am very blessed that he sleeps well at night so if on the split dose and still isn't doing well with his day feeds then maybe I will try all at once in the morning. I mentioned elemental formula to his ped last week (especially with my older son's food allergies) and she acted like very few children needed them. I think I will however push for that if things don't improve. I will also check on the Reglan dosage. My husband and I get nervous with the Reglan and the warnings of being on it more than 12 weeks but he hasn't shown any sympotms of anything. The upper GI and swallow study are the only tests that have been run so far. They are also going to run some oxygen stats while he feeds at the Dr next time I go in. His speech therapist recommended this. Many thanks!!
Feb 23, 2009
mommato3
Charlie's mom-Great to hear from you! My ped called the craniofacial surgeon about Holden and they told him to do the swallow study and then they would prob. want to see him. Well, the jaw is starting to grow out a little now so the ped doesn't think I need to see them right now, but I was thinking the exact thing about the airway being smaller. His speech therapist suggested they check his O2 stats to see if supplemental oxygen would help him while he ate. I never thought of an ENT specialist though. Would checking the O2 stats while he ate tell me about his airway? They said they can do that at the ped office. Holden didn't have the cleft but he also has a high arched palate. Do you use the Haberman Feeder or another type of special nipple?
Feb 23, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
as for the elemental formula...tons of kids are on it...including mine. He's on Elecare and has been for almost a year. If there is any possibility of an MSPI it's worth a try!
Feb 23, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
It is interesting...Charlie's cleft is the least of his issues, it is the reflux that is the cause of a lot of his problems. But I think they are complicated by his small airway. Charlie was diagnosed at birth with Pierre Robin Sequence which is the combination of micrognathia and cleft palate. We used a Haberman with a lot of success until he was about 8 months old. Unfortunatey by that point, the relfux and associated aspiration made it impossible for us to bottle feed so now he is entirely tube fed. On the 02 stats, they will definitely provide information about his breathing and if he has any issues because of the small airway. Charlie's baseline is 94/95 for 02 saturation when he is awake which is lower then is should be but his pulmonologist is not concerned. He does desat when he sleeps but does not have sleep apnea, thankfully. We did a sleep study a month ago and I am still waiting for them to propose steps to remedy this. It is great that your ped called the craniofacial surgeon. Even if he doesn't have a cleft it is a good idea for him to be on their radar screen. There is so much going on in their little mouths and airways that one little thing can have a big impact. I think it wouldn't hurt to see the craniofacial doc just to check in. They might send you to an ENT or Pulmonologist. By the way, Charlie is on Reglan with no side effects and after about a month I asked the GI about it and he said if they didn't kick in after a month they wouldn't appear later. He has been on it for 7 months. Good luck and I am happy to chat offline. Susie
Feb 23, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
I remember a while ago reading about a bottle called a Medla Special Needs bottle which is promoted as good for both reflux and abnormalities of the mouth (ie cleft pallet and recessed jaw). I found a website that has a couple different types of special needs feeders just incase you think *maybe* a bottle might be part of the issue.http://www.cleftline.org/publications/feeding_excerpt

also you might want to ask your dr about a medical thickener called Simpley Thick. This will do the same as rice cereal but will be easier on the tummy and bowels.

Alimentum Ready to feed is a good start, I have always read that the less milk protein and soy protein in a formula the better for reflux. also many reflux kiddos are milk and soy protein intolerant so having a hypoallergenic formula kills 2 birds with one stone

I personally have never found splitting to work for my daughter, it actually made things worse BUT it has worked for just about everybody else. It couldn't hurt to try, reflux is a horrible game of trial and error in the early months. but you will get through it! good luck!
Feb 24, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Didn't have time to read the other replies, so sorry if this is a repeat. In light of your mentioning that one child had food allergies at a younger age, I would just say to watch out for milk/soy allergies in this child. After a very long, long journey of vomiting, Prevacid, GI Dr.s, etc., we finally found that MOST of our son's "reflux" was due to food allergies. As soon as he went from Nutramagin to Neocate, his vomiting let way up & his behavior was much better. All the best, Ellen
Feb 24, 2009
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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I just skimmed through the replies but wanted to reiterate on the o2 providing valuable information. if he does have a smaller airway, with that and his mircognathia, it could pose more difficult for him to eat. along with his hypotonia. when recording his o2 sats while eating, you can see if he is dropping, which isn't good and maybe he does need a little o2 while eating only. As for his growth, dropping percentiles rapidly is not good. My daughter gained a great amount of weight at around your son's age and the reason for that was over-eating due to a burning esophagus. then she got a little older, and the vomitting was more and forceful that she started rapidly falling from the 75th weight percentile at 2-3 months to the 25th by 6 months old. and then she began loosing oz. and lbs. good luck to you! the ladies gave some great advise
Check with your
doctor first!