Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 She has had the test done while both on and off the diet. The first time was back in January. She was about 3 weeks old. We believed the seizures were causing her to vomit. Ph probe was negative for reflux. She then had it again in October when she was hospitalized with pneumonia. At that time she had been on the diet for almost 3 months (she started the official diet 8/9 but has always has limited carbs due to her metabolic/mito issues.) Still not showing reflux. Now she vomits at least 1/2 of her bottles daily. I have tried everything you can possibly imagine. She has been completely med free since 11/1. The only thing she was on then was 30mg Phenobarbital so I am sure it isn't AED related. She will see a pediatric GI in January but we are hoping to get a sooner appointment. I guess she would have to vomit all her food instead of at least half for 3 months in order to get an earlier appointment. Her ketones are fine, CO level fine, etc, etc. It's another mystery. Another sign her " disease is progressing, " but as of yet no one can tell exactly what that disease is. ---- Original Message ----- From: Bill Barber To: ketogenic Sent: Monday, December 06, 2004 11:39 AM Subject: Re: Re: vomitting , Was this test done while she was on the diet or before? Bill Shapiro wrote: > Hannah has had the test done twice. Once while she was hospitalized > and it was monitored by the hospital staff and once when we took her > home (after the tube was placed at the hospital) and had a small > monitor attached to it. The test is a 24 hour esophageal pH > monitoring study that measures the duration and frequency of acid > reflux ( stomach contents coming back up into the esophagus). It > measures the effectiveness of the esophagus in clearing the specific > symptoms of the child. This study looks at the amount of reflux in a > 24 hour period, compared to the upper GI, which only evaluates reflux > over a 5 minute period in one situation. (Which is good for our kids > who tend to need a longer period of time to test properly. > > Once the pH probe is placed your child will be allowed to resume > eating normally (except of course no reflux meds).Your child can not > eat or drink any foods/liquids that are acidic or the test results > will not be reliable. They ask you to keep a diary of food/liquid > intake and instances of throwing up or spitting up. > > Results are pretty quick, within the second day of the probe. It is > pretty noninvasive. > > I strongly recommend requesting the test if your child is suffering > from reflux. " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 , Why not try to absorb the punches? Reduce the calories to 1/2, i.e. give only 1/2 the bottles you are giving now. And space them out more, instead of 4 times a day, try 8 times. Do that for 1 or 2 days and see how it goes. If better, then increase calories to 2/3 for 3 or 4 days and re-evaluate. What things have you tried? Bill Shapiro wrote: > She has had the test done while both on and off the diet. The first > time was back in January. She was about 3 weeks old. We believed the > seizures were causing her to vomit. Ph probe was negative for reflux. > She then had it again in October when she was hospitalized with > pneumonia. At that time she had been on the diet for almost 3 months > (she started the official diet 8/9 but has always has limited carbs > due to her metabolic/mito issues.) Still not showing reflux. Now she > vomits at least 1/2 of her bottles daily. I have tried everything you > can possibly imagine. She has been completely med free since 11/1. > The only thing she was on then was 30mg Phenobarbital so I am sure it > isn't AED related. She will see a pediatric GI in January but we are > hoping to get a sooner appointment. I guess she would have to vomit > all her food instead of at least half for 3 months in order to get an > earlier appointment. Her ketones are fine, CO level fine, etc, etc. > It's another mystery. Another sign her " disease is progressing, " but > as of yet no one can tell exactly what that disease is. ---- Original > Message ----- From: Bill Barber To: ketogenic Sent: > Monday, December 06, 2004 11:39 AM Subject: Re: Re: > vomitting > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 tried that, tried every reflux precaution imaginable, tried diluting formula with water, tried changing oils (even MCT because the digestive chain is shorter) I think one of the problems may be that Hannah isn't digesting her food. Sometimes she throws up mid bottle, other times it is 4 hours after she has eaten. She will have ingested 4 ounces 4 hours prior and vomit 5 1/2 ounces! I had her levels checked (carnitine, ketones, pyruvate, etc) She tests well, everything comes up normal. Re: Re: > vomitting > " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2004 Report Share Posted December 6, 2004 The only other thing is constipation. Otherwise, ketones too high. I believe the MCT is not good for some people's digestion. Better would be canola oil or safflower oil or maybe cream. What is the ratio? Bill Shapiro wrote: > tried that, tried every reflux precaution imaginable, tried diluting > formula with water, tried changing oils (even MCT because the > digestive chain is shorter) I think one of the problems may be that > Hannah isn't digesting her food. Sometimes she throws up mid bottle, > other times it is 4 hours after she has eaten. She will have ingested > 4 ounces 4 hours prior and vomit 5 1/2 ounces! I had her levels > checked (carnitine, ketones, pyruvate, etc) She tests well, > everything comes up normal. Re: Re: >> vomitting >> > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > resort! " > > List is for parent to parent support only. It is important to get > medical advice from a professional keto team! Subscribe: > ketogenic-subscribe Unsubscribe: > ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 She is on a 4:1 ratio. We are currently using canola oil. Past 2 days have been better...yesturday no throwing u at all but her seizures during the night were awful! Her ketones are good though. I think she may be teething. Re: Re: >> vomitting >> > > > > " The Ketogenic Diet....a realistic treatment option, NOT just a last > resort! " > > List is for parent to parent support only. It is important to get > medical advice from a professional keto team! Subscribe: > ketogenic-subscribe Unsubscribe: > ketogenic-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Is your daughter under 1 year old? If so, that is unusually high ratio, 3:1 would be more normal for a young child. If you are going from throwing up half the food to not throwing up at all that will be a tremendous change in calories and could well throw off the diet and give more seizures. What are your menus? What medications are you using? You have a lot of work to do on the diet, I am sorry to say. We had a similar start and eventually everything settled down. Bill Shapiro wrote: > She is on a 4:1 ratio. We are currently using canola oil. Past 2 days > have been better...yesturday no throwing u at all but her seizures > during the night were awful! Her ketones are good though. I think she > may be teething. Re: Re: vomitting >>> >> >> >> >> " The Ketogenic Diet....a realistic treatment option, NOT just a >> last resort! " >> >> List is for parent to parent support only. It is important to get >> medical advice from a professional keto team! Subscribe: >> ketogenic-subscribe Unsubscribe: >> ketogenic-unsubscribe >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 Hannah is still only on liquids. Her current formula is: 297g RCF (Ross Carbohydrate Free Formula) 185g water 8g stage 2 gerber bananas 34g canola oil. makes about 17 ounces for a 24 hour supply. She is 11 months but has always been on some form of the diet (since 3 days old!) due to her inability to metabolize carbs. She was originally on 2.5:1 then when we started the " official diet " in August she went to 4:1, no ketones, so it was uped to 4.5:1 and has slowly been brought back down. Even with the high ratio, her carbs are still extremely low....1.19g carbs/day. Too many carbs and she goes into lactic acidosis. She has been on keppra and phenobarb but has been weened from both. So med free and there is still about a 75% decrease in seizure activity....she was having 250-300 per day all summer! I checked her ketones with her last diaper and they were low. I agree it is a calorie issue since she went from throwning up everything to now keeping it in. It is definately a lot of tweeking. Re: Re: vomitting >>> >> >> >> >> " The Ketogenic Diet....a realistic treatment option, NOT just a >> last resort! " >> >> List is for parent to parent support only. It is important to get >> medical advice from a professional keto team! Subscribe: >> ketogenic-subscribe Unsubscribe: >> ketogenic-unsubscribe >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2004 Report Share Posted December 8, 2004 , I don't know your entire situation. Anyway, my thoughts are; bananas might be constipating?, Or bananas are causing vomiting somehow? Try something else? Did the vomiting start with the bananas? Bananas are high in carbohydrate so you can get a lot of carbs in without too much volume. Are you using bananas to lower the cost? That amount of water seems very low. In the example in Dr. Freeman's book, the fluid is calculated at 511 cc per day and that is with 33% more RCF concentrate (and there are errors in the book calculations). He suggests 100 cc per kg of body weight then subtracts the fluids in the formula (actually he subtracts the fat and protein as well and that is the mistake). The low fluids will contribute to constipation. It just seems quite low. Are you getting lots of urine output? Can constant dehydration cause vomiting? I would worry that it would make any acidosis worse. Are you giving extra fluids at other than meal times? If bananas are 15.26 gm carb per 100 grams, you are giving 1.3 gm carb in the bananas. From the RCF, you are getting 11.9 gm protein, and 21.4 gm fat. From the canola oil, you are getting 33.0 gm of fat. That gives 54.4 gm of fat, 11.9 gm protein and 1.3 gm of carb. That gives a ratio of 4.1:1 which is what you said you were on. Calories are 542.4. Is she very active? Those calories don't seem either too high or too low, but a lot depends on the metabolism and activity. My only other thought is to reduce calories and maybe ratio until the vomiting is under control. Safflower oil might be easier on the digestion than canola oil. I think that is what is used in microlipid. Do you shake up the formula well when you use it? Do you divide it up when you make a day's worth or do you take some out each feeding? It might be separating on you during the day and the ratio and calories are changing a lot. What vitamins and minerals are you giving? Hope this helps and doesn't confuse you more. Bill Shapiro wrote: > Hannah is still only on liquids. Her current formula is: 297g RCF > (Ross Carbohydrate Free Formula) 185g water 8g stage 2 gerber bananas > 34g canola oil. makes about 17 ounces for a 24 hour supply. She is > 11 months but has always been on some form of the diet (since 3 days > old!) due to her inability to metabolize carbs. She was originally on > 2.5:1 then when we started the " official diet " in August she went to > 4:1, no ketones, so it was uped to 4.5:1 and has slowly been brought > back down. Even with the high ratio, her carbs are still extremely > low....1.19g carbs/day. Too many carbs and she goes into lactic > acidosis. She has been on keppra and phenobarb but has been weened > from both. So med free and there is still about a 75% decrease in > seizure activity....she was having 250-300 per day all summer! I > checked her ketones with her last diaper and they were low. I agree > it is a calorie issue since she went from throwning up everything to > now keeping it in. It is definately a lot of tweeking. ----- Original > Message ----- From: Bill Barber To: ketogenic Sent: > Wednesday, December 08, 2004 11:37 AM Subject: Re: Re: > vomitting (Bill) > > > Is your daughter under 1 year old? If so, that is unusually high > ratio, 3:1 would be more normal for a young child. If you are going > from throwing up half the food to not throwing up at all that will be > a tremendous change in calories and could well throw off the diet and > give more seizures. > > What are your menus? What medications are you using? > > You have a lot of work to do on the diet, I am sorry to say. We had a > similar start and eventually everything settled down. > > Bill > > Shapiro wrote: >> She is on a 4:1 ratio. We are currently using canola oil. Past 2 >> days have been better...yesturday no throwing u at all but her >> seizures during the night were awful! Her ketones are good though. >> I think she may be teething. Re: Re: >>>> vomitting >>>> >>> >>> >>> >>> " The Ketogenic Diet....a realistic treatment option, NOT just a >>> last resort! " >>> >>> List is for parent to parent support only. It is important to get >>> medical advice from a professional keto team! Subscribe: >>> ketogenic-subscribe Unsubscribe: >>> ketogenic-unsubscribe >>> >>> >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.