Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 - I agree with . I will forward under separate cover the Dr. H explanation on ketones and feeding at night. Do NOT use cornstarch at this age. DO give him far more bottles. At his age, going that long without food is amazing for any child, let alone RSS. From reading Dr. H's posts, I am guessing she would say that at his age, he should still be fed no more than 4-5 hours apart. It is hard on your sleep, but in the long-term, far better. Most of the families I have spoken with in my 4-month tenure have RSS children WITHOUT cognitive difficulties. Some may have learning disabilities, but I can not tell you whether or not it is at any higher proportion than the general population has learning disabilities. But many scientists published do feel that there is a link between untreated nighttime hypoglycemia (even in diabetic children, not just RSS) and later development of learning disabilities. Speech articulation problems occur often in RSS kids due to the oral muscle issues. A RSS child who nursed without problem, and babbled young may not have later speech articulation issues. My RSS daughter, however, could not breastfeed even with help from a lactation nurse, and never babbled as an infant. And has always eaten well but with very tiny, slowly chewed foods, using what looks like only her front teeth (strange?). And she has always been cognitively bright, testing 18-24 months ahead, but WAY behind in articulation (at one point, 12 months behind). Please, please - since the convention is still more than 3 weeks ahead, go ahead and try giving Colin more food during the evening and night. One hint for nighttime feeds, keep the room dark - it supposedly helps in not interrupting their idea of day/night. RSS-Support wrote: > - > I am sure some of the more experienced parents will > respond but I will try to give my two cents. First, > let me say that's it is great Colin seems to be doing > well cognitively! I don't think RSS necessarily > CAUSES learning disabilities. Dr Harbison ( and many > of us agree) feels an infant/toddler who has repeated > bouts of hypoglycemia can later have dev. delays. > Hopefully someone will attach her letter which > explains it in detail so I won't even try. > > If I were you I would definitely feed him a bottle at > least two additional times between 5pm and 10 am. The > sweaty head is only ONE sign of hypoglycemia but if > you suspect it you can check his urines for evidence > of ketones. My son, Dominic, has a sweaty ahead a lot > but I check his urine every other morning and he has > never had the ketones. > I hope this helps. If you wouldn't mind, can you list > some of the high calorie foods you are using or the > clinic suggested? This would be helpful to me as I am > always trying new foods to give Dom a variety. Good > luck! > > F. (mother to Dominic, 221 months, 15 lbs, > RSS) > > --- jebarker@... wrote: > > Colin does have reflux and is on prilosec to control > > the vomiting. He > > projectile vomits 1-2 times a day which is why 20 > > oz. is not a whole > > lot for him. He takes enfamil AR mixed 1/3 stronger > > with added > > microlipids. We just started solids a few weeks ago > > and are adding > > lipids and now butter. The feeding clinic told us to > > offer custards > > and anything high-cal. > > > > I have a few questions for you all. Why does RSS > > cause learning > > disabilities? And what are they? I understand they > > have speech > > problems which are closely tied with not eating and > > the lack of > > muscle development. At 6-1/2 mo. he seems fine > > cognitively and ahead > > of his twin in many respects. > > > > Colin does have a sweaty head which is the sign for > > hypoglycemia. > > When do you start the cornstarch at night? I worry > > because Colin > > usually takes his last bottle around 5pm and it can > > be as late as > > 10am the next day before I get food in him again. > > > > We are attending the conference so I'm looking > > forward to learning a > > lot and meeting many of you and your kids. Do you > > have any tips for > > me on flying? This is my first time with a baby and > > I'm a little > > nervous about take off and landing considering he > > won't eat while > > awake. He doesn't take a pacifier either. I don't > > know how I'm going > > to keep him occupied for the flight either since he > > is such a hyper > > kid. We're flying direct from Portland, OR to > > Chicago. Should be fun!! > > > > Thanks for your information, > > > > > > > > Mom to Colin (RSS) and Hayden, b/g twins, 12/6/00 > > > > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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