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Jul 22, 2008
nicholas'smom
Update from Nicholas's mom
Hi to all. Thank you all sooo much for all the responses. It is so nice to talk to others who have been through similar situations. Your advice is so appreciated. So, we saw the GI today (We have already seen the pedi pulmonologist). The GI opted to not do a ph probe as he said we already know Nicholas is refluxing and he would rather just be aggressive with the treatment than put him through another test that he wasn't sure would give him that much information. He upped the prevacid from 3ml to 4 and split it from once to twice a day. I am happy about this because I was concerned if he spit up after the one dose that he wouldn't get the prescribed dose and now we will have two shots and not only may it work better for him this way but I figure it doubles the odds of him keeping more of it down. He has also prescribed Reglan (which we will start tomorrow, as baby is asleep and dad is at pharmacy picking up now. Here are more questions for parents who tried/use the Reglan: did any of you have extreme fussiness?? My MD said about 10% of the time when he prescribes to infants, extreme fussiness occurs and they are unable to use it. Also: What did you notice for results?? How can you tell if it's helping?? I guess, again, just looking for less pain responses? How long before you noticed any relief??? We are already thickening his formula with rice cereal. Also, had no idea eczema was allergy related. Timing is funny too. I just noticed some on him yesterday. I have always had boughts of it-worse when I was a child. I got some aveeno baby products today. Am hoping they help. Any other suggestions for the eczema??For the parent who mentioned this, I can't remember the name of the formula (?) you mentioned, but I've never heard of it. Nicholas is on neutramagen, which is a hypoallergenic formula from Enfamil. Does this sound like the same kind of thing?? Regarding the Tucker sling, so far so good. Nicholas seemed uncomfortable last night, but I can't say it was the sling because he has slept well on it on other nights. I'll let you know how he does tonight. It definitely keeps him from spitting up as much (little to none found on sheet versus a lot before). The only issue seems to be one of comfort and him getting used to being on it-which seems to be going as good as can be expected. At this point, we can't put him on it until he is asleep, whereas before, we could put him in bed (sometimes) when we knew he was good and tired. Again, I think he just needs to get used to this. Anyway, I've rambled enough. Thanks again for all of your help. Oh, one more question. How do you post a picture with your profile-can't figure it out. Not the most computer savvy.
Jul 22, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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Hi there, elyse was on reglan for months, unfortunately for her the GI upped the dose every month because it never made a difference for her (that we could see). We also tried erythomyacin (does the same thing as reglan) without any results. Bethanocol also does the same thing. Our GI says reglan works the best in his experience. As far as fussiness, Elyse never once slept thru the night until after she was off of it, and we never knew it was from the reglan until we took her off it.

On formula....someone may have mentioned alimentum (another over the counter hypo formula) or she may have mentioned Neocate or EleCare. Elyse is on Elecare. These two have to be purchased from a pharmacy, ours is delivered by a home health agency and requires a prescription. Although, I think you can buy it online without a rx. These 2 are "super" hypoallergenic. We ahve the tucker sling too, and used it until she learned how to unstrap herself or wound up twisted around with her head going downhill. There is another tucker sling for older kids but we never got that one, she was ready for more freedom.

Jul 22, 2008
nicholas'smom
Coyle's mom
Seems I can't stop. To Coyle's mom-We live in southwest Florida-uggh-Want to move back to CT. What is hypertonia?? Is it like spasticity?? Nicholas can't sit still-is always writhing and flailing arms. Can't tell if it's pain symptom, something else or just him-but it's pretty constant.
Jul 22, 2008
nicholas'smom
Elyse's mom
Oh gosh, I hope it doesn't do that to him. I guess we will know if his sleep pattern changes. Technically, he sleeps through the night sometimes(as that is 6 straight hours). He has managed to do what I consider through the night (9-4 or 5) once or twice. Of course, I never sleep through because I keep checking on him because he seems "too quiet". Neurotic, I know.
Jul 22, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi there. I am so glad that you got some answers today about Nicholas. It is so frustrating, but it helps when you do finally get something to go on. Sebastian does well on the Aveeno oatmeal baby wash. We have used it since we stopped using just water when he was a lot younger. No problems. Fro his eczema, we do several. First, I COVER him in Aquaphor (but it cheaper at www.drugstore.com) twice a day. Second, when he gets a bad patch, I use regular-strength hydorcortizone on it twice a day. One percent will do nothing. When he is scaly from head to toe (like now...because I STOPPED using the Aveeno wash and tried Johnson's for three days) I use a prescription tub of a mix of Aquaphor and cortizone..and I cover him (except for his crotch and butt). You can use it several times a day.

Glad you have luck with the Tucker SLing! Sebastian hated it from day one, so I ended up just selling it on eBay.

Maybe the formula you are thinking of is Alimentum? It is basically the same as Nutramigen, although some kids do better on one than the other...or can't tolerate either, like my little man.

Thanks for the update!
Jul 22, 2008
stickybean
hi there... we tried reglan for 2 weeks. We only did half the dose the doc prescribed. Joslyn was a horrible sad mess! She cried all the time and did not seem right. She was only about 6 weeks old. We took her off of it after we noticed her personality change... as we also did not see a change in her silent reflux and her gasping. We have now decided to try no meds for Joslyn. After trying 3 different kinds of meds and we saw no change in her with the meds. I do hope your lo gets better and feels well soon! Good luck
Jul 22, 2008
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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sorry this will be short. Idon't have much time to respond but Q has been on reglan since she was a month old (max doses of reglan). It has made a difference. She has had no side effects. Before she had the reflux surgery, we didn't notice the difference much until they added the prevacid. After she had her surgery, we discontinued the Reglan, but she was having motility issues and so we started it back up again and she has been on it since. So it has helped. -Sarah
Jul 22, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Our experience with Reglan was awful, but there's a lot of kids who do so well on it. My lo stopped vomiting, but she was a she-demon on it - no sleep, screaming, and her eyes got stuck upward for about 10 min (I called the doc and they said to stop right away after that). But there's a lot of them who benefit greatly from it.

One thing I found with eczema from my nephews - naked time is great! My SIL used Aquaphor and hydrocortisone mixed to her MD's suggestions for the bad flare-ups, and was very careful about cotton clothing and fragrances.

Jul 22, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Hi! Can't help with the eczema or reglan questions, but did want to mention that if you're using the compounded Prevacid without any results, you may want to see if the doctor will put him on the Prevacid solutabs instead. The compounded Prevacid tends to lose it's potency after a couple of weeks (if you have a good compounding pharmacy, try to fill the prescription every two weeks). We loved the solutabs - much less work. Glad the appointment went well today.
Jul 22, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Hi again. Coy's eczema got much better when i put him on alimentum but he still gets flare up on occasion. We use hydrocortison also. I wash with Huggies sensitive or cetaphil. just recently i trialed johnsons shampoo and he's finally able to tolerate it! whooohooo. i jus tlove the smell on hsi hair, ya know. oh, and we use aveeno sometimes too when i get coupons.

hypertonia is high muscle tone or 'tightness' he's just 3 mo. right? do you mean sit still while sitting supported or he's always jerkign?
Jul 23, 2008
nicholas'smom
Thanks
Thanks again, everyone. Can't tell you how helpful you all are!! Melissa, as far as the Tucker sling, I may have jinxed it because he had a nother restless night last night. I think we may go without it tonight and see what happens. When you say regular strength hydrocortisone, what is that 10%? I will definitely go out and try to get the Aquaphor. Noticed that it was made by Eucerin, which is what I used on my eczema as a child. Hopefully, this means it will help him. Had no idea Johnson's baby shampoo could irritate like that. I have been using that(as I loved the way it smells) and will stop ASAP. It's more important my baby feel better, than smell yummy. How often are the eczema babies getting baths? I have heard it's not good to bath too often as it strips the skin of essential oils. Right now, I have been bathing Nicholas about twice a week. I have been washing his head a little more to get the spit up out of hair. From now on, I'll use the aveeno or try just water in between baths.Slimfast-you mean cotton clothing is good for them, right?? That's all he's been in so far. Halley's mom, our prevacid is compounded every two weeks. Our pharmacist has a cronically ill child and he seems to be really great so far with our needs for Nicholas. He double checks dosages if they seem too high, etc. Quinn's mom, seems you are the only one who has had luck with the reglan. I am very apprehensive about giving it to him. Not sure what we are going to do. Will think on it. Thanks again. Will keep you all posted!!! Hope you're little ones have a great day!
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