GI issues - long day - and what to expect next?

GuitaristsGirl · June 2011

(Sorry this turned into a novel. . . )

So, I've said that DD's stomach issues are getting better (she's on Alimentum, Zantac, and Prevacid) - and they are!! At least, she doesn't seem *quite* so gassy/ crampy, and the crazy lose-her-mind screaming is usually reserved for 7:00 - 10:00 p.m. The dx was cow's milk intolerance, soy intolerance, colic and reflux.

Anywho. Starting a few weeks ago she started spitting up/ vomiting (she didn't before, just gas)- only once every few days, but it was like a volcano erupted - she violently emptied the entire contents of her stomach. I say violently because of the force - it didn't seem to hurt her.

It picked up in frequency and, as of a week ago, this sometimes happens several times a day. The spit up/ vomit seriously flies out 2-3 feet. So, I had a happy baby! But we were both constantly soaked in stinky spitup

I started feeding her extra slowly, holding her upright after every 1/2 ounce, etc. But it kept happening, and we got worried about her nutrition and dehydration (her wet diapers also decreased).

The pedi asked us to come in today, and she's lost 3 ounces in the past week (not a ton, but not good). Due to the projectile nature of her vomit, and from feeling her belly, etc., he became concerned about pyloric stenosis and immediately sent us to the Childrens' Hospital for an ultrasound of her stomach.

Luckily, the ultrasound came back fine!! But I'm still having a pitty party because I'm so emotionally exhausted! Had it not come back fine she would have had to have surgery in the next few days - I just sat in the waiting area of the hospital, all by myself, holding my sweet girl in a little ball, with tears in my eyes at the thought of my tiny baby under the knife!

So, that's good news, for sure. But my pedi says he's out of ideas (oh, other than Neocate, he wrote a prescription for Neocate), and is sending us to a specialist at Vanderbilt. This week. So, while I *was* just happy that my baby was happier (despite the projectile spit up), now I'm worried because my pedi seems worried. . . he says he wouldn't be worried, except there is no reason that this should be worsening rather than getting better. Which makes sense.

Anyway, so very sorry for the length of this. Like I said, it's a bit of a vent/ pity party, too. The reason I'm writing is this:

Does anyone know what I can expect from the specialist? What will he want to do? What comes next?

The journey thus far has been similar to that of many posters I've read about (Zantac, then Prevacid, etc.), but now I feel like we're in uncharted territory, although I've no doubt many here have been down this road too and I just didn't pay attention before. . .

Thanks for "listening".

ETA: If some of you have already shared this part of your story with me - I'm really sorry. It't not that I didn't pay attention and value that - I guess I just didn't absorb it enough because I really never thought it'd come to this, kwim?

AlissaCell701 · June 2011

Ugh, I just wrote out this big long post and it got erased from some reason. Stupid computer..

Anyway, I just wanted to say that we had some similar issues that you have with your DD. We had to see a Pedi GI and had to have the same test done and also an Upper GI and Think or thin Liquids test..(which I would also suggest to the specialist that they do)..Everything came back fine with the test and we were just diagnosed with severe reflux..

One of the things the pedi GI told us that works well is Mylanta (ask your doc first thought) we would do .5mls every 4 hrs and this REALLY helped is tummy and the reflux from buring him. I know that OrangeSmoke was also told the same thing..we were also put on Karafate (sp?) which my husband also takes for his acid reflux and ulcers. This also helped ALOT. Jake was also on liquid Previcid which worked sooo much better then the tablets..

I also put his crib matteres at an angle (with books) and put a towel underneath his legs in his infant carrier..

I know it's terrible to see you little baby having to get all these test done..it breaks my heart every time Jake has to have something done..Thank god it's not alot..Hopefully this will pass, it did with us when Jake turned 6/7mnths..all of a suddon one day stopped spitting up/vomiting all together..Hope that helps..

naflmj · June 2011

We also dealt with this for about the first year of G's life...we had the same test and it came back negative. We worked with a pedi GI, I cut all dairy and gluten out of my diet, and eventually changed DS to Prilosec which worked much better than other meds. He also had every test under the sun, and aside from the different food intolerance everything came back normal and pointed to severe reflux.

DS is still small but has developed normally otherwise. The GI and pediatric Growth and Nutrition Team have been life savers. At 11 months he switched to EleCare Vanilla (same as NeoCate) and has since grown out of his intolerance and is on WCM. I know it is rough but you will get through this. Just advocate for your LO and it will all work out.

Temp893722312503334 · June 2011

We have also been working with a pedi GI Dr. at the University of Chicago. Our first appointment was a lot of parent interview then the Dr. feeling his belly etc. Our issues did not include the vomiting though so I think you may have to have a scope done so that they can see her GI tract a little better.

I'm hoping for your sake that the allergy is just a little more severe then orginally thought and that neocate is what will be next.

I'll be thinking of you!

BTW, if you do have to start neocate, let me know, I have two canisters that the Dr. gave me and we've been lucky to avoid it thus far.

Mrs.Kiltlifter · June 2011

DD has severe reflux with pretty severe gastrointestinal pain. We did the Alimentum and Neocate route but milk intolerance didn't appear to be the culprit. When she was on Alimentum she had projectile vomiting. It was gross. She was happier but literally lost most of her bottle. Neocate was no different. I am convinced there is an allergen in their some where. Once she went back on sensitive formula the projectile stopped. You might want to try Enfamil's version, nutramagin.

j11skate · June 2011

I'm so sorry you're dealing with this. It's rough. I feel like we went through every medicine and formula there was! My dd wouldn't drink the Nutrimigen or the Alimentium. She wouldn't even touch it. What she would drink and what seemed to work best was Enfamil Prosobee. While she still spit up ALL the time (I'm talking, we always have a bib on except in the tub or pool), she tolerated the soy formula and her pain stopped. We actually were able to stop all medicine while being on the soy. Now that dd is 9 months, she spits up maybe 4-5 times a day which is much better than before. The doctors said it would get better with time and it did. You just have to keep trying to find what formula/medicine works best for your baby. I felt like it was a puzzle piece. Although I didn't solve the puzzle (hence the spitting up still) I feel like dd's pain was gone and she was happy, healthy and growing so I was happy!

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