Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 HI Carol and others asking about this :-) Its basically used to avoid the child going into a "fasting state" over night, as this can be difficult for their systems to handle. Your attempting to avoid any kind of metabollic instability, and being in a fasting state makes one ripe for metabollic changes. In my daughters case, she pretty quickly begins burning fat instead of Glucose at night, and this causes her to spill Ketones by morning most days. While its usually small enough numbers of them that they are not really doing her harm, its not SUPPOSED to happen that way and is something worth trying to avoid. Looks like he is saying that the cornstarch works to both maintain plasma amino acids levels and to keep the child from the adverse effects of burning free fatty acids. In other words, keeps a check on the metabollic system and can help to avoid some of the more common stressors. Hopefully e will see this as she has had her daughter on the corn starch and I know she has a good way to get it into her, but I cannot for the life of me remember what it was!!!! This is something we desperatly need to start with Madison too, so I'll be watching for others tricks of getting it into them. BIG hugs, Kass Carol DuPont wrote: O.K. this is what Kelley wrote in my son's evaluation... "Another frequently used mitochondrial therapy is cornstarch given at bedtime, which limits overnight fasting and thereby both maintains plasma amino acid levels for their mitochondrial anapluerotic function and reduces some of the mitochondria toxicity caused by the normal early morning rise in free fatty acid levels." Since I got the mito diagnosis a week ago, I have been trying to understand all the tests and language but it is difficult! If anyone can translate the above into layman's terms I would appreciate it! He did not mention how to get or how much cornstarch to give him... In the past, we have had cyclic vomiting. Thankfully we have not had an episode for 10 months. I wonder if this is something to do with that? Thanks! Carol Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 I do not have any experience with this but I have heard of many people doing it on the gtube list. I think it helps with dumping syndrome and does something with sugar regulation. Sorry I don't know more. Corn Starch at night? Does anyone give their child cornstarch in the evening? I just received a report with prescriptions for the mito cocktail from Dr. Kelley. In the report, he mentions giving Neal (8 y.o.) cornstarch at night! Sounds disgusting! How much and do I mix it with something? Any advice would be appreciated :)CarolPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 I've not heard about corn starch being a part of the cocktail. What is the benefit of it supposed to be? Possibly for relaxation?? If that is the case, I would be very interested in giving it a try with Trevor!! Please tell me more!! Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 O.K. this is what Kelley wrote in my son's evaluation... " Another frequently used mitochondrial therapy is cornstarch given at bedtime, which limits overnight fasting and thereby both maintains plasma amino acid levels for their mitochondrial anapluerotic function and reduces some of the mitochondria toxicity caused by the normal early morning rise in free fatty acid levels. " Since I got the mito diagnosis a week ago, I have been trying to understand all the tests and language but it is difficult! If anyone can translate the above into layman's terms I would appreciate it! He did not mention how to get or how much cornstarch to give him... In the past, we have had cyclic vomiting. Thankfully we have not had an episode for 10 months. I wonder if this is something to do with that? Thanks! Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Cornstarch at night is supposed to help with the blood sugar getting too low overnight. I guess cornstarch is slowly digested and therefore keeps some folks from having hypoglycemic episodes overnight if they are not pump fed. That's what I understand. Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV- 11 & 9-Both w/Leigh's Disease (?), MR (mild), g-tube, w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us! http://u2.lvcm.com/jscb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 In a message dated 08/16/2001 7:50:24 AM Eastern Daylight Time, kass@... writes: << This is something we desperatly need to start with Madison too, so I'll be watching for others tricks of getting it into them. >> I am interested in the " tricks " to get my daughter to take the corn starch as well. I know it can not be cooked; what has anyone tried to get this into their child? Thanks. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Carol, We mixed the uncooked corn starch in a small amount Choch milk for our daughter and she drank it right down. The small amount assured us that she would drink it all. e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Hi, My child, Henry, has a fatty oxidation defect and has taken cornstarch in the past to keep his blood sugar up. We gave him a couple of tablespoons into a sugar-free koolaid (or Tang). He loved it! We discontinued it because too many calories were coming from the cornstarch (empty calories) and he was not eating enough nutritious foods. Betsy Furler Re: Corn Starch at night? > Cornstarch at night is supposed to help with the blood sugar getting too low > overnight. I guess cornstarch is slowly digested and therefore keeps some > folks from having hypoglycemic episodes overnight if they are not pump fed. > That's what I understand. > > Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV- > 11 & 9-Both w/Leigh's Disease (?), MR (mild), g-tube, > w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us! > http://u2.lvcm.com/jscb > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 To All those asking about how to administer the cornstarch~ We have not yet tried this with Wyatt yet; however, Dr. Cohen said to mix it with either a bedtime snack or drink. You have to experiment with the amount so as not to get it too thick, especially in a drink. It does not cause any problems for their systems if it is too thick, just more difficult to get down. If they will eat things like puddings, yogurts, applesauces, etc... it just takes on the flavor and color of what it is mixed with(I use it in blueberry pies to cut down on runniness) it thickens it so hence the need to adjust the amount for your needs.You have to mix it REALLY well. I imagine in a drink it would not take a whole lot to make it hard to get through a sippy cup. Hope this helps and I will keep everyone informed as to our expeience with it. Davena (mom to Wyatt 3yo. tomorrow,suspected ComplexI Deficiency,PDD-NOS, etc and Davena Kay 6yo. ,gifted and full of major attitude) Re: Corn Starch at night? O.K. this is what Kelley wrote in my son's evaluation..."Another frequently used mitochondrial therapy is cornstarch given atbedtime, which limits overnight fasting and thereby both maintains plasmaamino acid levels for their mitochondrial anapluerotic function and reducessome of the mitochondria toxicity caused by the normal early morning rise infree fatty acid levels."Since I got the mito diagnosis a week ago, I have been trying to understandall the tests and language but it is difficult! If anyone can translate theabove into layman's terms I would appreciate it! He did not mention how toget or how much cornstarch to give him...In the past, we have had cyclic vomiting. Thankfully we have not had anepisode for 10 months. I wonder if this is something to do with that?Thanks!CarolPlease contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2001 Report Share Posted August 16, 2001 Corn starch, if given raw, is a long term sugar and is used in children and adults who lack the ability to store glycogen. If they cannot store glycogen, the night time fast can be catastrophic for them, and result in extremely low blood sugars. This has been used for years for this type of disease and many of the metabolic docs that treat mitochondrial patients use it for the same type of thing in children who seem to lack sufficient stores, or the ability to tap those stores during night time fasts. The alternative to this is to place a feeding tube and use continuous feeds to help these patients get thru the night. It is a sugar, but when given raw or uncooked, and mixed in yogurt or pudding, or any other food, it becomes a slowly metabolized source of energy and sugar, allowing the patient to wake up without being in a deficit. Many patients with mito have a difficult time sustaining any degree of fast, and going to bed at night can cause significant worsening of symptoms if they are unable to maintain adequate blood sugar or energy. The corn starch helps them to tolerate that fast. Tapiaco does the same thing, it is just a little more course. The corn starch is a pretty tasteless powder, if anything it is sweet. It is not discernable if mixed in pudding or yogurt. But it is important to not cook it. If you cook pudding, then the corn starch must be added after the pudding is done. Both of my girls have used corn starch on and off for years. We used 2 - 3 tablespoons mixed in something. It was the only way my girls could get thru the night without having significant hypoglycemia the next day. There is also a snack bar on the market that is loaded with corn starch and sold for diabetics for the same reason - night time hypoglycemia. It is called Nite Bite Bar, and we have used that one as well. Hope this helps, Jeannine Quote Link to comment Share on other sites More sharing options...
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