Posted By Posting
Feb 19, 2009
johnniesnewmommy
Where to start?
My 7 month old foster son has been sick since he was 6 wks old. Hospitalized twice with pneumonia and once more with collapsed lungs because of pneumonia. I switched his formula to Nutramigen when I thought it was due to a milk allergy and desperate to try anything. The dr has had him on reflux precautions for about 4 months now. Thickening his formula- sitting upright for 30 mn after feeding. Elevating his bed (although I can't keep him on the elevated part). He also takes Zantac twice daily along with breathing meds. He is only in the 7th percentile of weight for his age. He had an upper GI today to rule out reflux and with only 1/2 an ounce of solution he aspirated into his lungs. They said its definitely a reflux problem. Now I don't know where to start or what to do. Please help - any suggestions would be appreciated. Im tired of him being sick.
Feb 19, 2009
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
What are you using to thicken his feeds and what consistency are you making them? It may be that you may need to thicken them even more (to possibly honey consistency rather than nectar). I would call the GI right away and get some advice.
Feb 19, 2009
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
If you're not using it already, a lot of the moms on here have had good luck with Simply Thick. It is odorless and tasteless and does not fill the tummy like rice cereal has a tendency to do. Hang in there!
Feb 19, 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
did he aspirate on swallow, or did it reflux up into his lungs?
Feb 19, 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

I see you already thicken... Move up to a PPI like Prevacid or Prilosec instead of or in addition to Zantac.Have you tried something like Reglan or Erythromycin to help the tummy empty faster to prevent reflux and help lessen aspiration risk

But if your little one is aspirating on swallow instead of refluxing it up that is a whole different ballgame and reflux treatment will not help.Has a modified barium swallow study been done, if not it needs to be done, along with a bronchoscopy to check for aspiration damage. What breathing meds are you doing,is he seeing a ped pulmonologist??My son aspirates both ways.

Feb 19, 2009
johnniesnewmommy
Rice cereal
I was told to use 1 scoop of rice cereal per 1 scoop of formula to thicken it. It is coming back up from his stomach into his lungs. Where can you find simply thick?
Feb 19, 2009
johnniesnewmommy
no specialists yet
I have been begging to see a lung specialist or immune specialist or anyone who might be able to figure out what was wrong- but he is a foster child and so they dont like to give referrals out unless there is a diagnosis first. This is the first test that has told us anything. His doctor has thought about putting in a feeding tube but I wasn't concerned with the weight as much as the breathing problems. He is on albuterol every 3-4 hours and pulmicort.
Feb 19, 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.
First of all, you'll get great advice here...everyone here has been and dealt with at least PART of what you are dealing with. My son doens't aspirate, but he vomits 6-7 times per day. I have tried rice cereal, but it made the vomiting and reflux worse for my son. I just ordered Thick it (which is about the same idea as Simply thick. It thickens without adding the bulk that rice cereal does...and if your son has any ind of allergy to rice cereal then you'll avoid that as well. My son is on Prevacid, Reglan and Elecare (a SUPER hypoallergenic formula)...I hope your son grows out of this quickly. I would put off talk of a gtube until you can get into a specialist. My son also uses pulmicort and albuterol as the reflux makes him sound liek he ALWAYS has a cold. Good luck...there are no dumb questions...ask away!
Feb 19, 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

Well, maybe now that they know he aspirates his reflux they will send him on to a pulmonologist, that is who he will need to see, as well as a pediatric gastroenterologist, they can work together to treat reflux and the aspiration of it...A bronchoscopy needs to be performed, my son has had quite a few, they provide valuable information.Also the swallow study,probably some motility testing like a gastric emptying scan need to be performed.

As far as putting in a feeding tube like a gtube or ng tube alone to help with the breathing, it wont help if he isnt aspirating on swallow, and it will only make his actual reflux worse and may cause more weight loss because of increased vomiting..there is a possibility that a GJ tube could help with the reflux aspiration, it is a feeding tube that bypasses the stomach and feeds into the jejunum, but the child could still potentially aspirate stomach contents, and GJ tubes have their drawbacks because the child would have to be on continuous drip and have to be placed at the hospital.There is a surgery called fundoplication, but it is reserved for use only in life threatening complications of reflux and frequently fails,has many potential serious complications like nerve damage,dumping syndrome,slippage of the wrap etc..My son had it done and it caused him severe problems and he still aspirates reflux despite an intact fundo, this is commonly the case.

I would really try to get him started on some reglan or erthromycin asap..What mg pulmicort is he on, maybe he needs a larger dose, is he taking it every day, once or twice a day?

Feb 19, 2009
johnniesnewmommy
He is taking .25 of pulmicort 1 x daily. Im sure the doctor will prescribe Reglan next. I now she has talked about it in previous visits but didnt want to do it unless we really needed to. Can you get the Thick it or Simply Thick locally or does it need to be ordered online?
Feb 19, 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
Maybe see if the dr would let him go to .25 twice a day or even .5 twice a day on the Pulmicort to see if it helps with his breathing??You may want to see if your local drugstore can order it, otherwise you can order it online. I wouldnt do the Thick It(which can be bought in stores) because it is not hypoallergenic, Simply Thick is a better choice.
Feb 19, 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
http://www.simplythick.com/gestalt/go.cfm?objectid=BC054A75-8764-4A45-AA18F05680CFB682
Feb 19, 2009
johnniesnewmommy
I keep hearing people talk about using Erythromycin. It's an antibiotic so im not sure why it would be used on a long term basis. Is it a different medicine than what I think it is?
Feb 19, 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
It is the same med as the antibiotic. Erythromycin can have the effect of promoting better and faster gastrointestinal emptying, the same as reglan, but without the potentially serious side effects that Reglan occasionally has.Sometimes it helps, and sometimes not, same as with reglan.The dose of erythromycin dose treating reflux/DGE is much lower than needed to treat an antibiotic, a very low dose is taken multiple times daily. I would actually try the erythromycin first if i were you do to less of a risk of side effects. Two of my children are on erythromycin now as reglan did not work for them, one it seems to be helping, and the other not quite as much, and the other 2 are on reglan, and it helps them. They are all on enough meds to start a small pharmacy pharmacy lol..
Feb 20, 2009
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!
Many pharmacies have Simply Thick and ThickIt because it's used with dysphagia patients all the time. I know that our pharmacy has it (Medicap) and I've seen it at CVS before, though sometimes you have to ask for it.
Feb 20, 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.
My son tried Erythro and it didn't work for him at all...no effect. Reglan does work for him. There CAN be side effects, but they are pretty easy to spot and then the drug can be discontinued. My son (luckily) has no side effects and takes the highest dose for his weight 4 x's a day. Also the Reglan side effects tend to show up fairly quickly if you're going to see them. Just read up on it and be informed..don't be frightened to try it...it can be a lifesaver! Good luck!
Feb 21, 2009
lchang4
I'm so glad I found this forum. The NICU was holding one of my twins hostage (threatening to call CPS on me) if I didn't agree to a G tube and fundoplication. They think she had severe reflux because she refuse to drink her entire bottle every 3 hours (even though the pH probe test was normal, and that was all the test they did). When they tried Simply Thick on her, immediately she was taking her bottle. She was discharged for almost a month now and had choked on me at least 6 times. The last time lasted almost 20 seconds and I was about to do CPR and call 911. I decided that the milk was too thick/stick to the back of her throat. Also I think her suck got stronger now so that there's too much milk coming through the Y-cut Dr. Brown nipple. They said to use that because of the thickened milk. I thinned it out to 70% and used a regular flow Similac nipple. And it worked so far. She still choked a few times but at least hadn't turned blue and worked it out herself within 5 seconds. In my case, I think it's not reflux but more of a swallowing problem because she's not spitting up nor crying in pain when eating. She's gaining excellent weight. She's on reflux precautions just in case anyway. She's on Prilosec and I had stopped the Reglan. By the way, why is Reglan so bad? I think you should definitely have them figure out if it's reflux, swallow, or motility problem before you go to surgery. My NICU was so fixated that my secondary insurance was dropping out that they didn't order any other tests and kept their diagnosis of reflux because it's easier to just give the baby the surgery and leave. So, make sure those doctors don't cut corners due to insurance problems. Simply thick was a godsend for us but be careful of that choking hazard. By the way, how do we know if the baby is aspirating into the lungs without any medical tests?
Feb 22, 2009
johnniesnewmommy
sorry- i have been trying to respond but I couldn't get my password to work. Frustrating! They have run a hundred tests everything from complete immune disorders, blood tests xrays etc etc. They know he is aspirating because he did it during the upper GI with only 1/2 an ounce of chalky stuff in him. I am curious- since we did the test on Thursday he has been miserable. Screaming in pain- he is pooping but super thick sticky stools every diaper. Not usual for him at all he is usually super constipated. I don't know if he picked up a bug or its from the solution he had to drink. Any one else have that problem? And while im logged in can anyone suggest a bottle to use? I have been using Dr Browns for the last month because Dr suggested it- but it's a pain to wash and sterilize 5 pieces for every bottle. Yuck! I tried the playtex drop ins when he started with colic symptoms but it seams like they make the liners different now and it's really hard to squeeze out the air without busting the liner. Any thoughts?
Feb 22, 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
The weird stools are from the barium he drank for sure, it can thicken/even constipate really bad and cause fussiness from it
Feb 22, 2009
lchang4
I don't bother sterilizing the bottles and parts anymore. I have twins and one twin is on 25 calories fortifying breastmilk with Similac PM 60/40. The other twin is on 24 calories fortifying breastmilk with Enfamil Enfacare then thickened with Simply Thick. This pump, mix, then feed is extremely exhausting and there's just no way I can keep up with this 8 feedings a day if I have to sterilize everything too. By the way, I have to pump at least 30 minutes each time because of twins and my let down is so slow that sometimes it's taking 45 minutes. So, I just make sure to wash the parts well with hot soapy water. One of my twin uses Born Free glass bottles (also has many parts) and the other one, I use the Medela bottles that came with the pump. I have many sets of pumping parts so many bottles and it works well to distinguish the two babies' bottles. I use the Enfamil and Similac regular flow nipples from the NICU for the Medela bottles. Even though the nipples are suppose to be one time use, I wash them well and don't sterilize them so it's still good for one week. Then, I throw them away. Dr. Brown nipples would fit the Medela bottles.
Check with your
doctor first!