A distillation of need-to-knows and stand-out features from the BD Experience Survey, arranged in question order. Not all questions have been included here. Remember, for the full results, go here:
http://svy.mk/fg6rvo
http://svy.mk/fg6rvo
General & Background
- More than half of the survey subjects were 5 yrs of age or less.
- 84% of subjects have devices with balloon-type retainers.
- 67% use bolus feeding via syringe, with 12% of those employing gravity alone, ie not using the plunger.
- 40% of subjects have experienced a feeding device failure requiring a tube change (NOT including blockages or regular, scheduled changes) once or more in the last year. Many subjects had multiple such events.
- Of this 40%, 96% used balloon-retained devices (as opposed to 84% across the whole population), suggesting balloon-retained devices do in fact fail more regularly than other types.
- Only 17% reported a tube blockage more frequently than 6-monthly since incorporating BD into the diet. The figure prior to BD is around 10%.
- Most subjects (81.3%) also receive free water separate from feeds or meds at some point at least daily.
Symptom Specific Questions.
NOTE: These used a severity rating scale from 1 to 10, rating prior to incorporating BD as opposed to after incorporating BD. This gives a severity weighting average between 1 and 10. You really need to see the data as reported to get the full picture with this section.
Reflux:
Many subjects have at some point experienced severe reflux (>80%). On average, a significant improvement after BD reported, with the large majority reporting significant changes in less than 2 weeks. Majority (60%) report that improvements solely or mostly attributable to BD.
Gastroparesis:
Significant average improvement, 50% report improvements in < 2 weeks.
Aspiration:
Difficult one, as most who report improvements also attribute them to a combination af factors, such as stopping reflux, and also the placement of the tube (ceasing oral feeding).
Vomiting/Retching:
Very significant average improvement, with very fast results – 51% reporting significant change in < 1 week. Plus, 70% report the changes due solely or mainly to BD.
Diarrhea:
Very significant average improvement, with fast results: 60% reporting significant change in < 2 week. Plus, 83% report the changes due solely or mainly to BD.
Constipation:
Very mixed results with some noticeable average improvement, very variable time frame for any changes to occur. However, a majority report that what changes did occur solely or mainly due to BD (57%).
Infections (frequency of recurring infections):
Only 24% of subjects report experiencing periods of recurring infections, but those who did report a significant improvement in this after incorporating BD. These changes seemed to take much longer to notice/determine than other symptoms in this survey. No real significance on the question of whether BD is the main contributor to this either.
Chronic/recurring Lethargy/Fatigue:
Significant average improvement shown, with nearly half attributing the difference to BD. Variable time frame for results to show.
Sensitivity to Environmental Allergens:
Sample too small to extract meaningful data, but suggests little effect from BD.
Weight And Other Factors
- A very small percentage (2.8%) reported initial weight loss that did not seem to recover when incorporating BD. But then (respondents could select more than one)
- Initial weight loss followed by weight gain: 22%
- Sustained weight gain: 37%
- Stabilization of weight (ongoing): 47%
- 75% reported increased feed volume tolerance, and 69% also reported improved skin tone/colour.
- Around half of respondents reported 'always' measuring calories and nutritional factors when starting out with BD, with less than half of those respondents now carrying that on. In fact, half of all respondents now report 'never' or 'rarely' counting calories or measuring nutritional contents.
- 67% use a high-end blender, with the regular kitchen bench blender coming in next at 17% and a wide variety of devices after that (including no device at all, just using baby food jars etc.)
- 13.4% strain their blends, but only 5% using a high-end blender strain theirs. Interestingly, 20% of those using a high-end blender report a tube blockage once per 6 months or more (just slightly higher than the whole population at 17%), where the (admittedly small sample of) group that strain their blends report 0% for blockages 6-monthly or more.
- Most BD-ers seem to use relatively large percentages of whole and/or non-processed foods. 47% report 91-100% of their typical blends are such, with 82.2% using more than 50% whole or non-processed foods (does NOT include thinning liquids).
- More than half (53%) prepare a blend once or twice per day on average.
- Preparing BD does not, on average, take a huge amount of time with 88% saying it take less than 5 hours a week, and half of them reporting less than 2 hours.
- Only 21% of respondents did NOT use some leftovers or food prepared for the rest of the family also in their blends.
- On average BD takes just a little longer to feed and costs a little more to prepare than the subject's previous feeding regime. A significant percentage (20%) report that BD is 'far more expensive'.
- 58% of those starting BD had no one-on-one assistance from a medical or nutritional professional. But then, 42% did!
- Respondents tended to get their BD information from a very wide range of sources.
You really need to browse the comments to get a fuller picture of things, especially in this last section. I'd encourage you to take the time to do so, especially because it's actually very emotionally rewarding hearing other's anecdotes and stories, and it helps greatly to 'join the dots'. We might all be unique and individual, but sometimes learning more about our similarities is the best learning we can do!
Once again, thank you to all those who helped and took part.
