Help! What is WRONG with my son?!?

[Anonymous]

Hi there. I am new here, I have been looking all over the internet to try and find some answers and I stumbled along this site. Hopefully someonoe will have some suggestions as to what is going on with my son, Ashton. He is almost three months old…

Okay, to start, here is kinda a run down of his history… I know this is a lot of information, but there is a lot to his story and I’m hoping that if someone reads it all and has been in any similar situation they can help!

They day he was born his belly was bloated and he took quite some time to pass his first meconioum. He was not intersted at all in eating. They did an xray of his belly and took blood and decided that he was really gassy and it was just air. He finally had a bowel movement, ate a little (he was on Similac Advance), and after a normal 2 day stay, they discharged us….

We got home and in 24 hours he only drank like 2-3 ozs. He would not eat and was very lethargic. He was also jaundice. I took him to the emergency room the day after we were discharged and they decided (after running tests, taking blood, doing a spinal tap, etc. ) that he would stay under the bili blanket/lights for 24 hours and that he had a strep infection in his blood. We stayed in the hospital for 15 days while he recieved IV anti-biotics for the sepsis. The doctor switched Ashton to Similac Isomil Soy. He had xrays on his tummy. An ultra sound on his brain. He drank barium and got the test for reflux and decided he didnt have it. They drew blood twice a day and did urine and stool cultures. They did every test you could imagine. During that time in the hospital he had horrible diarrhea which they contributed to the antibioitics. He had lost some weight but by the end of his 15 days he was back at birth weight and had started to eat around 2 ozs a feeding, so they sent us home…

We get back home again and I notice that he is really fussy and uncomfortable all the time. His belly is still HUGE, he grunts all the time, he squirms and arches his back at feedings and he never ever seems full. So off to the doc we go. Turns out he has lost some more weight. And he had microscopic blood in his stool. He also still has diarrhea, which this time im told is because the antibiotics killed all the good bacteria and because we keep swithching formulas to find the right one. She has Ashton drink pedialyte for 12 hours, then starts him on Nutramigen. She sends us to get blood drawn and for more xrays. They test for parasites, bacteria, etc. And she consults with a Ped GI specialist at the childrens hospital. The next day they admit him to the children’s hospital that is a couple hours away from my home. After going through more tests, xrays, ultrasounds, blood and stool coultures and a 3 day stay, they decide that he does have reflux and start him on Zantac and they are thinking he has a milk protein allergy so they switch him to alimentum Ready to feed and send us on our way.

We continue to go to the doctor once or twice a week now. We do weight checks and check his stool for blood. He is not gaining weight, not getting better, still had runny stool and the blood is still present. So she decides to send us back to the far away GI specialist. The GI doc ups his dose of zantac and switches him to necoate formula. At this point he is 2 1/2 months old and we are still going to the doctor once or twice a week, but he is NOT getting any better. Still runny, bloody poop, not gaining enough weight, etc. So they decide to admit him to the children’s hospital again for a colonoscopy with the GI specialist. The day before we are to take the couple hour trip we see his normal doctor again and OMG! finally gained a pound in a week and no blood in the stool, so they cancel the colonoscopy!

My issue now…. He will be three months old next week, and he is NOT better!! This has been going on TOO long. Ashton still has diarrhea. His belly seems more bloated than before. He looks like those children on TV that have swollen bellies because they are malnourished. He doesn’t spit up often, but you can hear the acidy gurgling in his throat that makes him uncomfortable. He still is NEVER satisfied, hardly even waiting 2 whole hours to eat. He would eat all day long if id give it to him. And his poor tummy you can hear rumble from across the room, and you can hear/feel the fluids gushing around.

I know this is a lot of information to take in, and I appreciate anyone taking the time to read it but I felt the need to include as much as I could…DOES ANYONE HAVE ANY IDEAS/SUGGESTIONS/SIMILAR SITUATIONS??! We are going back to the doctor mondayI don’t know what else to do for my poor baby….

[Anonymous]

Hi & welcome! Sorry you are going through this, but glad you found us. I hope we can help.

A few things enter my mind:

1. Neocate can def take a while to heal and repair GI issues. Especially in a baby who is severely intolerant to milk and soy. It can take a month (longer in some cases) to clear out all of those bad proteins. They really build up in the system. Maybe more time on the Neocate is the answer.

2. I know in some rare cases, babies cannot even tolerate elemental formulas. For some, it is a corn intolerance or allergy. In that case, I think a special goat’s milk formula is used. I’d def seek advice from an allergist or nutritionist if you have not seen one yet. They might be able to help connect the dots.

3. Has an endoscopy been done? Sometimes babies have EE (eosinophilic esophagitis). Even with an EE diagnosis, I think an elemental diet like Neocate only is used to treat it, but if it is bad, they might add in motelukast drugs (singulair & the likes) to help it as well. You might google this disorder and see if your baby fits any of the description.

Your baby may or may not have these things, they are just ideas that popped into my mind. I really hope that it is something as simple as needing more time on Neocate.

Also, if your baby seems to be in pain from reflux (my son had silent reflux on top of severe MSPI) it might be worthwhile to try and get your baby on a PPI drug (prevacid, prilosec, nexium or zegerid). Many many moms on this site had no luck with zantac (including us) as it is a weight sensitive drug and only an acid reducer. A PPI will heal erosions on the esophagus and keep the acid under control 24/7 by blocking the pumps that produce the acid. PPI’s must be given on an empty stomach and followed up with a meal 30-60 mins later to activate the drug. We had GREAT success with PPI drugs.

Hang in there! You’ve been through a lot!!

[hellbennt]

hi & welcome!

I have a LOT to say & (most of) it’s here:

J

Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

Jill has said a lot of what I would!

I’d also like to add (aside from the link I gave above – whcih really will help you!) that http://www.marci-kids.com will show you the latest GERd & PPI research- I would work on getting a PROPER dose of PPI…

in the MEANTIME, I’d increase the zantac dose to the maximum for weight: Zantac dosing- my/other’s question: https://www.infantreflux.org/forum/forum_posts.asp?TID=9539&PID=82914#82914

AND I’d check out all about using probiotics:

Probiotics, brands used: https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

so glad you found us!

~laura

[Anonymous]

Jill covered it all from my standpoint. You could also try giving some cherry mylanta supreme before a feeding to see if he does better.But it can cause diarrhea and well you are already dealing with that so you decide if you want to try it. If it helps then you have a pretty good idea that the Zantac isn’t working and you probably need a PPI. The mylanta is only a short term fix but you could try and see if it works. It may not cause diarrhea but for some little ones it does. So glad you found this site.

[Anonymous]

Thanks for the replies…

I did glance over the intro before posting. It has a lot of helpful information.

I do think that I am going to talk to his doctor about upping his dose of zantac. Like way up! He gets .6 mL 3 times a day… that’s just a little more than 1.5 mLs a day…there is def room to go up… or just switching to something more all together… for babies with all these sensitivities to stuff, they can’t tolerate the formula with the added rice starch for thickness to treat reflux, isn’t there another answer?

Also, the EE could be possible. That was a very good idea. He gurgles and chokes a lot. He acts like he doesn’t know how to latch on to a nipple well, that could be difficulty swallowing… Should I ask for an endoscopy?

Let’s see, I forgot to mention that he recieved a 10 day dose of probiotics after he was discharged from the hospital for the septic infection. That should have taken care of that problem.

He has been on Similac Advance, Isomil, Nutramigen, Alimentum powder, Alimentum Ready to Feed (because of the possible corn allergy in the powder) and now Neocate. And he has been on neocate for 30-something days now… the blood in the stool is gone, but none of the other symptoms. Why is his belly SO bloated? Why is it so rumbly? In all the searching on the internet, I don’t see anyone else complain of THOSE symptons… insatible hunger, very distended belly, constant gurgling in there…

Sometimes you have to take charge when the doctors just aren’t solving the problem. The things that we have tried aren’t working, so I wan’t to know…what ELSE could it be? What havent we tried? They canceled the colonoscopy because of one test that came back negative for blood in stool when his life before that had tested positive. Should I ask them to do it anyways?

And with all the discomfort/pain, etc and not absorbing nutirents and gaining weight in the first few months, will that really affect them in the long run physically and develpmentally?

[Anonymous]

I’m so sorry to hear of everything you and your little guy have gone through! Glad that you’re on Neocate now, definately stick with it and I would avoid thickening with cereal since he definately seems to have intolerance issues. It would also be best to avoid solids for some time until his gut has a chance to heal and mature.

I agree completely with the previous suggestions of increasing the Zantac dose or switching to a PPI medication if necessary. This should hopefully help with the reflux pain.

The swollen belly is very common in yeast overgrowth and inflammation of the gut. I strongly urge you to start probiotics again – 10 days likely wasn’t enough to re-colonize his gut with good bacteria after having such a long course of antibiotics at such a young age. After the bacteria in the gut is wiped out, yeast has plenty of opportunity to overgrow. I recommend a milk-free probiotic with multiple strains of bacteria, instead of just one. The best one I’ve found for infants is Ther-Biotic Infant Formula by Klaire labs, and I would continue to use it (or a similar multi-strain probiotic) daily for at least a couple months.

https://theapexstore.com/Klaire_Labs_Ther-Biotic_Infant.asp

If necessary, don’t hesitate to have a scope of some form done to really find out what his gut issues are. An endoscopy is best for upper GI issues (GERD/reflux, etc.) and a colonoscopy is best for lower GI issues (large intestine). Unfortunately, it is very difficult to examine the small intestine, but some GI’s are using a “pill cam” now which can assess the entire GI tract, from top to bottom.

I hope your little guy gets some relief soon!

[Anonymous]

I agree with what everyone has said – definitely about the PPI. Sounds to me (I am no dr) like the Zantac just isn’t cutting it anymore. Maybe time to move on to Prevacid, Prilosec or Nexium.

Also, I totally agree with Sheri’s probiotic suggestion. She has pointed me in the right direction for probiotics. I did some additional research today and found that it does really take like a month for the good bacteria to even itself back out, especially after a lot of antibiotics. It’s also important I have read, to get a good probiotic b/c the potency is very important. From the reviews I read, the one Sheri suggested is excellent.

Good luck and keep us posted!

[Anonymous]

Hi….I’m sorry you are going through all of this. It’s the worst! I read your post last week but haven’t had time to reply. But, I have been thinking of you a lot. I agree with everything everyone above me has posted. They have great advice. I did have a couple of other thoughts as well though…

It sounds to me that there might be an issue besides the reflux, one that perhaps is causing the reflux like symptoms. It has been described to me that when the digestive system starts the digestive process and has trouble moving the food down for any number of reasons, there will be added pressure put on the stomach. And because of the underdeveloped sphincter muscle, a baby will have “reflux”. This theory makes total sense as a normal baby’s digestive system doesn’t mature until 3-4 months, and the majority of babies reflux goes away at this time as well as well as the “coliky” symptoms.

I’m assuming they have tested for all the strange things that many doctors don’t think babies get like Giardia, C-Diff, etc? My first GI didn’t, even at my request. Turned out my son did have the actual toxins from C-Diff, which didn’t end up being the root of his problems, but it was one thing treated.

As far as the Neocate goes, as said above it may take some time. But, you should begin to see improvement within the first week. The fact that there is no longer any blood in the stool is an indicator that he’ll do well on Neocate.

Have they checked him for Hirschprungs? They either do a rectal biopsy or a barium enema to determine if there are ganglion cells in the colon. At about 8-12 weeks, the large intestine begins to develop ganglion cells, they start at the top and grow downward. Sometimes those nerve cells don’t develop all the way to the end. Instead of causing a “loose” colon, it causes the colon to be really tight. The more nerve cells missing, the tighter the colon is. Some babies never poop, but start vomiting green bile as well and partially digested food. Yuck! These kids have a very severe case. But some babies have a mild case, and their symptoms are different. Most babies with any kind of hirschprungs have very distended bellies. Babies should pass the menconium within the first day of giving birth, if not the second. If not, it is the first indication that that there may be a structural problem such as Hirshprungs. Although it is common for babies to be really constipated with Hirschprungs, it is also common for them to have diarrhea, as it is often the only stool that can get through. Often a balloon will form just above the constricted area where stool with any consistency will collect, which is a bad environment for all kinds of bacteria to grow. The fix for this is surgical, but according to our surgeon is really effective allowing kids to live totally normal lives. and Has your son ever passed any kind of normal consistency stool? The fact that your son’s belly is so distended would also indicate this.

I would push for the colonoscopy. That may be the only way to know for sure what is going on. There may be nothing, but that would either allow you to figure out what is wrong and therefore treat it, or rule out lots of important and possible diseases.

Good luck! I sympathize with you as I am going through an almost identical situation (my 3^rd battle with GI issues in my babies). Please let me know if you find anything out and I will do the same. Sorry this is soo long.

We all love you!

[hellbennt]

ok, one more thing- sorry to overwhelm you- I would go to a Speech Pathologist to check suck/swallow, since you mentioned it. I know it sounds funny, a Speech Pathologist for an infant who doesn’t speak! But they are the ones who look at suck/swallow & the muscles involved. perhaps ask for a Swallow Study, where they look at *how* your baby swallows and they look for aspiration of liquid into the lungs- they try various thickness of liquids to see how your baby swallows them.

many people have had sucess getting help from them.

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