Vomiting

1. In our case it wasn't the formula but the internal mechanism. Couldn't hold down food. So had a nissan wrap or fondoplication. However, although it worked wonders, it did affect his being able to release air with burps. So he had a gastro button inserted that we used to release air several times a day. Even when we don't burp, humans continually release air from stomach via mouth. The mechanism that stops vomiting effectively therefore has it's downside. The gastro button came in handy for medicines and liquid feeding when poorly and not up to feeding via the mouth. We went for the nissan wrap, because failure to thrive in weight is common with MSS so vomiting out the food was very serious. It worked very well for us. I always say that each child is different but sharing our information with your medical team, gives them options to consider even if they rule them out.
   Meant to say, it started I think before his 4th birthday, but as I didnt have access to other MSS families, we assumed he was just sick all the time. He wasn't and he went hungry a few times and lost loads of weight. We initially gave him small portions, but often and he eventually had the wrap when aged about 8 or 9. We never stopped it. Every so often (years), the wrap needs to be tightended

(Parent of a son, died aged 18)

2. Our son is vomiting since infancy, so we switched from breastmilk to Similac Sensitive thinking food intolerance. Vomiting worsened after g-tube when he started growing and taking larger volumes. Switched to Pregestimil, got worse, so switched to Neocate. Still threw up 10-15x/day, but way more volume than typical baby spit up. Nissen done at 3 months old. It helped for sure, but he continued to throw up around it a few times a day. Vomiting got worse and worse, Nissen was still intact. Tried Pregestimil again, but that caused loose oily stools, so went back to Neocate and planned to ride it out. I asked our doctor if we could try frozen breastmilk again because I didn’t want to donate if it could possibly help - he said yes. Stopped the vomiting completely. Turned 1 and started adding purées, foods, Nourish, RFB to breastmilk. Once the frozen milk ran out, we blended full time per the advice from the MSS familygroup. We learned he couldn’t tolerate oils (specifically MCT/coconut) or more than 20g/fat per day. As long as we stayed at that, he did not throw up. Gallstone discovered in June, gallbladder removed, thought that might be his fat issue. Doctor wanted to try Kate Farms Peptide while in the hospital and he started throwing up violently again. Huge puddles as large as his body! He sort of tolerated Compleat, only threw up every few days. Moved back to home blends with less than 20g fat and back to no vomiting. Another stone discovered in October, GI wanted lower fat diet. Dietitian designed very specific recipes and we have been feeding them since. He has not thrown up in months. Once the second stone is removed, we will slowly work back up on fats to see what he tolerates.

(Parent of a 3 year old son)

3.  Oh yes!! It was every single time he had a tube feeding when he was on Pediasure. We used to keep towels and bucket close by at every feeding. He would throw up in his sleep when he was on a pump at night. It was constant. It wasn’t until we started blending real food and took him off dairy that he stopped.

(Parent of a 14 year old son)

4. He used to vomit 40+ times a day. We switched to complete pediatric and started famotidine and do gravity feeds - now maybe once a week.

(Parent of a son)

5. Our son averages 1 or 2 a day. He has a g-tube but no nissen. He's on nutren Jr with fiber and gets miralax daily. He's 10 years old. There are days where he won't spit-up at all and others where it's nearly every feeding, but most days it is only 1-2 times.

(Parent of a 10 year old son)

6.  Really for as long as I can remember.. she has always been on omeprezole since the NICU. She is down to twice a week, almost off it! She only vomits 1-2x/week now, usually at school so I think more nerves than reflux. We noticed a huge decrease in vomiting at 15 months, when we switched to Real Food Blends! It went from daily to weekly then.

(Parent of a 4 year old daughter)

7. Our son has always been fed via tube from 5 weeks old, when he had his first cardiac arrest. Initially he had a ng tube but he was fitted with a gastrostomy at 18 months old. He was fed solely on Nutricia Peptisorb from 7 months old (prior to this he was having my expressed milk with something added in it to help with weight gain).
He vomited with every single feed and lost so much weight. This went on for months and months, we tried different amounts of the feed, feeding at different times of day, but nothing worked. Eventually at about age 2 we moved to a blended diet with no dairy. This has really made a huge difference.
He is still very underweight and has weighed about 10kg for the last two years (he is 4 years old). So his weight is a big issue for us still. But the vomiting has completely stopped which has been life changing for him. Now we just need to work out how to get him to tolerate more feed and gain weight!

(Parent of a 4 year old son)

8. Our son tolerated breast milk initially and then formula. He also tolerated solid foods and was eating normal foods, with a supplement called Fortini, while he had his trachey. At age 3 he had trachey removed and everything went downhill. He stopped eating and was only taking the supplement. He vomited daily but mostly at night, several times a night. His team eventually decided on gastrostomy tube and although it took us some time to perfect it, he stopped vomiting. He was also put on to C-PAP at this time and he seemed to thrive. After 6 years like that he suddenly started vomiting blood and was hospitalised for 2 nights. He refused to tolerate the C-PAP after that and has had other episodes of what the hospital calls “coffee grind” vomit. We keep a medicine called Tranexamic acid in the house for these episodes and so can manage things at home. He is 13 years old now and tolerates only 1 litre of feed through his g-tube called Tentrini. He weighs approx 34Kg, still doesn’t tolerate the C-PAP and we have small vomits whenever he is stressed, e.g. going to hospital or GP. We have a team meeting very soon though to discuss lack of alternative to c-pap as his sats drop frequently to as low as 50% during the night. 

(Parent of a 13 year old son)

9. Our sons vomiting was reduced when we reduced the volume of g-tube feedings. We saw real improvement when the Occupational Therapist at School started a desensitizing program of brushing and joint compression. The thought was that he felt input (sight, sound, touch, etc.) differently than other people and the OT program would help this to improve. We did the same things at home and it did take time, but we finally saw a decrease in vomiting.

(Parent of a 35 year old son)

10.  Our daughter couldn't tolerate till she had the operation called Fundoplication. An operation to treat gastro-oesophageal reflux disease (GORD). It involves wrapping the top part of your stomach around your lower oesophagus (the tube that carries food from your mouth to your stomach).

(Parent of a 7 year old daughter)

10a.  Our daughter only vomited when she was learning to take her bottle as a baby. They gave her raditidine and motilium, only up to 3 months, until she learned how to suck.

(Parent of 8 year old daughter)