Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 I am a mom of 7 months old twins. Both of the girls have feeding issues and were diagnosed with severe reflux. I am not sure at all that this is the correct diagnosis since non of the reflux related drugs evert worked for us. Recently our GI said that this is probably severe food allergies... Basically, he doesn't really know what it is or how to treat it. One of the girls is doing much worse than the other. She has been having diarrhea for over 2 months now and there is a lot of mucus and occasionally blood in her stools. She also was recently diagnosed with developmental delays (she is not doing ant babbling yet and is on the low side with her cognitive skills). I am obviously very worried and would appreciate any advice. We tried any formula imaginable and nothing has worked so far. She has been on Alimentum for a few months and was also on Neocate short term - nothing seems to work for her. The doctors don't know what to do. It seems that her system can not really tolerate any commercial formula at this point. Please, please, please does anyone know a recipe for a home made formula that might help? In the " Breaking the Vicious Cycle " book there is a recipe for baby formula but it contains honey which you are not supposed to give before they are 1 y/o. Does anyone have any experience with this home-made formula? Other any other good tested recipes to try? I would be very greatful for any feedback. Thank you so much for your help, Vera Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 I think that if you pressure cook the honey for 10 minutes that it can be used by infants, but please please please double check this before using it in your babies formula. Carolyn mom to dd, age 10, SCD 5 weeks > > > I am a mom of 7 months old twins. Both of the girls have feeding > issues and were diagnosed with severe reflux. I am not sure at all > that this is the correct diagnosis since non of the reflux related > drugs evert worked for us. Recently our GI said that this is > probably severe food allergies... Basically, he doesn't really know > what it is or how to treat it. One of the girls is doing much worse > than the other. She has been having diarrhea for over 2 months now > and there is a lot of mucus and occasionally blood in her stools. > She also was recently diagnosed with developmental delays (she is > not doing ant babbling yet and is on the low side with her cognitive > skills). I am obviously very worried and would appreciate any > advice. We tried any formula imaginable and nothing has worked so > far. She has been on Alimentum for a few months and was also on > Neocate short term - nothing seems to work for her. The doctors > don't know what to do. It seems that her system can not really > tolerate any commercial formula at this point. Please, please, > please does anyone know a recipe for a home made formula that might > help? In the " Breaking the Vicious Cycle " book there is a recipe for > baby formula but it contains honey which you are not supposed to > give before they are 1 y/o. Does anyone have any experience with > this home-made formula? Other any other good tested recipes to try? > I would be very greatful for any feedback. > Thank you so much for your help, > Vera > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Hi Vera, I am so glad that you found out about SCD when your children are so young! Pamela Ferro RN is the DAN practitioner who has worked with SCD for the longest time;she is considered to be the expert on SCD for children with all types of problems. Her friend developed a baby formula for SCD using the goat yogurt. I think that you should try to see Pamela Ferro or have a phone consult with her. I have a lot of hope for your daughters because Pam has helped many parents get miraculous results with SCD. Pam Ferro RN Hopewell Associates 2 Brandt Island Rd. PO Box 1747 Mattapoisett, MA 02739 ph: fax: Mimi > It seems that her system can not really > tolerate any commercial formula at this point. Please, please, > please does anyone know a recipe for a home made formula that might > help? In the " Breaking the Vicious Cycle " book there is a recipe for > baby formula but it contains honey which you are not supposed to > give before they are 1 y/o. Does anyone have any experience with > this home-made formula? Other any other good tested recipes to try? > I would be very greatful for any feedback. > Thank you so much for your help, > Vera > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 I'm putting on my allergy-group moderator hat here, not my SCD hat, I hope listmates will forgive my brief violation of list rules to try and help this child. Has the child been evaluated for Eosinophilic Esophagitis (or the other eosinophilic conditions)? It can mimic reflux and long-term, the un-addressed condition results in what looks like severe food allergy symptoms - the child ends up tolerating no foods, with severe GI symptoms - bleeding and mucousy stools. Most ped. GIs aren't sufficiently aware of or experienced with this subtle diagnosis to handle it. You will need to go to Cincinnatti Children's Hospital, or if you're lucky enough to be in a major metro area or near a university teaching hospital you may find a Ped. GI who has seen a case or two. But it will require you to evaluate the doctor's expertise in this condition - how many children has he handled with this condition? Dr. Putnam at Cincinnatti will consult with other doctors in cases where it is suspected. I would NOT give this child any formula that contains milk, nuts, or corn, due to the allergy history. I would not use honey or other sugars. This rules out all the SCD formulas, unfortunately. Usually with babies who are this allergic, there are a few underlying allergies that have been severely aggravated due to continued exposure, with the result that the intestines are very inflamed, and the child is reacting to all foods. The best thing is to identify the key allergens and totally eliminate them, allowing the inflammation to calm and heal. The usual suspect is milk - it is the most common infant allergen, followed by soy. All the formulas this child has been on contain both in some form. Since the child reacts to Neocate, though, which is milk-free, there is a good chance it she also has a corn allergy, which complicates the picture. I would start with a trial of Alimentum RTF, give it 3-5 days. If she gets worse, then switch to a trial of amino acid modules in a base of the most allergy-safe food, which is probably a puree of avocado and water. If she tolerates that, give it for 3-4 weeks to allow her to heal a bit, then experiment with introducing some multivitamins and minerals to her formula. Coconut is more allergenic but can be tried, and squash puree would need to have oils added - say olive or safflower (avoid canola and sunflower). At some point it's worth trying to introduce a pureed low-allergen meat (lamb is very well- tolerated in allergy kids) to get some much-needed iron into her diet. You will need to find a nutritionist who is competent to help with all the nutritional issues, and that is a hard thing to do. Cincinatti will be your best resource for that too. EE usually is handled by putting the child on an elemental formula - even a feeding tube if the esophagus has become severe injured. It needs the time to heal. I really don't know how it is handled when the child doesn't tolerate an elemental formula (my child doesnt' have EE but was truly allergic to all formulas due to inestinal dysbiosis, and I eventually relactated and undertook a radically restricted diet to make my breastmilk hypoallergenic, so I know more about that than I do about EE, unfortunately). I do know some moms who have issues more similar to your child, if you'd like to contact them for additional suggestions I can put you in touch with them - just email me. This is a difficult situation, and I will help to the best of my ability. I can't say there's a perfect solution, but temporarily getting nutrition into the child and lessen the intestinal inflammation to buy some time while trying to find a capable doctor seems like the best way to go, in my opinion. Please feel free to email me. Suzanne, Tom ASD 3.6, SCD 70 days, almost weaned! > > > I am a mom of 7 months old twins. Both of the girls have feeding > issues and were diagnosed with severe reflux. I am not sure at all > that this is the correct diagnosis since non of the reflux related > drugs evert worked for us. Recently our GI said that this is > probably severe food allergies... Basically, he doesn't really know > what it is or how to treat it. One of the girls is doing much worse > than the other. She has been having diarrhea for over 2 months now > and there is a lot of mucus and occasionally blood in her stools. > She also was recently diagnosed with developmental delays (she is > not doing ant babbling yet and is on the low side with her cognitive > skills). I am obviously very worried and would appreciate any > advice. We tried any formula imaginable and nothing has worked so > far. She has been on Alimentum for a few months and was also on > Neocate short term - nothing seems to work for her. The doctors > don't know what to do. It seems that her system can not really > tolerate any commercial formula at this point. Please, please, > please does anyone know a recipe for a home made formula that might > help? In the " Breaking the Vicious Cycle " book there is a recipe for > baby formula but it contains honey which you are not supposed to > give before they are 1 y/o. Does anyone have any experience with > this home-made formula? Other any other good tested recipes to try? > I would be very greatful for any feedback. > Thank you so much for your help, > Vera > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 I just wanted to add - the recommendation for Pamela Ferro is a good one, but I would avoid any goat-milk formula for a child with a cow's milk allergy. A series of reliable clinical studies has proeved very convincingly that nearly all CMA (Cow Milk Allergy) individuals do not tolerate goat milk - the proteins are nearly identical. The percentage of CMA babies who tolerate goats milk is only about 2%-8% (the percentages differ from study to study, but all are within the same range of statistical error). I repeat: Goat milk is NOT a safe option for a milk allergy baby. Suzanne > > > > > > I am a mom of 7 months old twins. Both of the girls have feeding > > issues and were diagnosed with severe reflux. I am not sure at all > > that this is the correct diagnosis since non of the reflux related > > drugs evert worked for us. Recently our GI said that this is > > probably severe food allergies... Basically, he doesn't really > know > > what it is or how to treat it. One of the girls is doing much > worse > > than the other. She has been having diarrhea for over 2 months now > > and there is a lot of mucus and occasionally blood in her stools. > > She also was recently diagnosed with developmental delays (she is > > not doing ant babbling yet and is on the low side with her > cognitive > > skills). I am obviously very worried and would appreciate any > > advice. We tried any formula imaginable and nothing has worked so > > far. She has been on Alimentum for a few months and was also on > > Neocate short term - nothing seems to work for her. The doctors > > don't know what to do. It seems that her system can not really > > tolerate any commercial formula at this point. Please, please, > > please does anyone know a recipe for a home made formula that > might > > help? In the " Breaking the Vicious Cycle " book there is a recipe > for > > baby formula but it contains honey which you are not supposed to > > give before they are 1 y/o. Does anyone have any experience with > > this home-made formula? Other any other good tested recipes to try? > > I would be very greatful for any feedback. > > Thank you so much for your help, > > Vera > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 i second another reply on absolutely no more vaccines reflux is often a sign of intestinal yeast which would tie with thier age and the allergies so i would exclude honey, nuts to........ digestive enzymes would be a major help if tolerated www.houstonni.com. if you email them, devin houston phd will reply if you ask for advice candex and north american herb and spice oreganol will help with yeast and also the organol helps with bacteria fish oil should help seal the gut and reduce allergenic crossing by partly digested peptides medicine does not really reach effectively into children and especially young children because the development is still occuring, that is, the house is still being built........... difficult to repair plumbing when its in the process of being laid down if you see what i mean and a lot of the remedies are cruel even for adults and a child still has a life to live....... http://health.groups.yahoo.com/group/who_knows/ which deals with scd and supplements and extensions to scd in areas that elaine was working on and other areas > > > I am a mom of 7 months old twins. Both of the girls have feeding > issues and were diagnosed with severe reflux. I am not sure at all > that this is the correct diagnosis since non of the reflux related > drugs evert worked for us. Recently our GI said that this is > probably severe food allergies... Basically, he doesn't really know > what it is or how to treat it. One of the girls is doing much worse > than the other. She has been having diarrhea for over 2 months now > and there is a lot of mucus and occasionally blood in her stools. > She also was recently diagnosed with developmental delays (she is > not doing ant babbling yet and is on the low side with her cognitive > skills). I am obviously very worried and would appreciate any > advice. We tried any formula imaginable and nothing has worked so > far. She has been on Alimentum for a few months and was also on > Neocate short term - nothing seems to work for her. The doctors > don't know what to do. It seems that her system can not really > tolerate any commercial formula at this point. Please, please, > please does anyone know a recipe for a home made formula that might > help? In the " Breaking the Vicious Cycle " book there is a recipe for > baby formula but it contains honey which you are not supposed to > give before they are 1 y/o. Does anyone have any experience with > this home-made formula? Other any other good tested recipes to try? > I would be very greatful for any feedback. > Thank you so much for your help, > Vera > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 also.. if your kids need antibiotics for any reason, insist on an INJECTABLE antibiotic. oral antibiotics will destroy any gains you may be making in healing the gut. andrew wrote: i second another reply on absolutely no more vaccines reflux is often a sign of intestinal yeast which would tie with thier age and the allergies so i would exclude honey, nuts to........ digestive enzymes would be a major help if tolerated www.houstonni.com. if you email them, devin houston phd will reply if you ask for advice candex and north american herb and spice oreganol will help with yeast and also the organol helps with bacteria fish oil should help seal the gut and reduce allergenic crossing by partly digested peptides medicine does not really reach effectively into children and especially young children because the development is still occuring, that is, the house is still being built........... difficult to repair plumbing when its in the process of being laid down if you see what i mean and a lot of the remedies are cruel even for adults and a child still has a life to live....... http://health.groups.yahoo.com/group/who_knows/ which deals with scd and supplements and extensions to scd in areas that elaine was working on and other areas > > > I am a mom of 7 months old twins. Both of the girls have feeding > issues and were diagnosed with severe reflux. I am not sure at all > that this is the correct diagnosis since non of the reflux related > drugs evert worked for us. Recently our GI said that this is > probably severe food allergies... Basically, he doesn't really know > what it is or how to treat it. One of the girls is doing much worse > than the other. She has been having diarrhea for over 2 months now > and there is a lot of mucus and occasionally blood in her stools. > She also was recently diagnosed with developmental delays (she is > not doing ant babbling yet and is on the low side with her cognitive > skills). I am obviously very worried and would appreciate any > advice. We tried any formula imaginable and nothing has worked so > far. She has been on Alimentum for a few months and was also on > Neocate short term - nothing seems to work for her. The doctors > don't know what to do. It seems that her system can not really > tolerate any commercial formula at this point. Please, please, > please does anyone know a recipe for a home made formula that might > help? In the " Breaking the Vicious Cycle " book there is a recipe for > baby formula but it contains honey which you are not supposed to > give before they are 1 y/o. Does anyone have any experience with > this home-made formula? Other any other good tested recipes to try? > I would be very greatful for any feedback. > Thank you so much for your help, > Vera > For information on the Specific Carbohydrate Diet, please read the book _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following websites: http://www.breakingtheviciouscycle.info and http://www.pecanbread.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 My oldest son had severe food allergies as an infant. Because I was breast feeding I was able to eliminate foods that caused problems. His symptoms included blood in the stools - and I hate to say this but it will not go away until you eliminate the offending foods. If your child is not tolerating any formulas, you might want to consider trying very very fresh raw goat milk (commercial formulas are void of natural enzymes, which just make what you are dealing with an uphill battle - whereas raw goat milk is very similar to human milk and will contain natural enzymes) or consider working with a lactation consultant to see if you can force yourself to lactate. You can then control what goes in your body and therefore control what goes in your baby's body. I know it's possible to force lactation (though not easy), unless you have physical reasons for not breast feeding that would prohibit this... but it it definitely the easiest and most digestable form of food for the baby. I'd suggest getting donated breast milk but there's no way to control what the donor is eating... but it might be worth a shot. Enzymes in the formulas might help but I truly don't know. I remember it was H*ll going through this and I really really feel for you - I definitely have been there, though the breast feeding gave me more options. Robbie Re: Desperate, need advice >I think that if you pressure cook the honey for 10 minutes that it can be >used by infants, > but please please please double check this before using it in your babies > formula. > > Carolyn > mom to dd, age 10, SCD 5 weeks > > >> >> >> I am a mom of 7 months old twins. Both of the girls have feeding >> issues and were diagnosed with severe reflux. I am not sure at all >> that this is the correct diagnosis since non of the reflux related >> drugs evert worked for us. Recently our GI said that this is >> probably severe food allergies... Basically, he doesn't really know >> what it is or how to treat it. One of the girls is doing much worse >> than the other. She has been having diarrhea for over 2 months now >> and there is a lot of mucus and occasionally blood in her stools. >> She also was recently diagnosed with developmental delays (she is >> not doing ant babbling yet and is on the low side with her cognitive >> skills). I am obviously very worried and would appreciate any >> advice. We tried any formula imaginable and nothing has worked so >> far. She has been on Alimentum for a few months and was also on >> Neocate short term - nothing seems to work for her. The doctors >> don't know what to do. It seems that her system can not really >> tolerate any commercial formula at this point. Please, please, >> please does anyone know a recipe for a home made formula that might >> help? In the " Breaking the Vicious Cycle " book there is a recipe for >> baby formula but it contains honey which you are not supposed to >> give before they are 1 y/o. Does anyone have any experience with >> this home-made formula? Other any other good tested recipes to try? >> I would be very greatful for any feedback. >> Thank you so much for your help, >> Vera >> > > > > > > > > For information on the Specific Carbohydrate Diet, please read the book > _Breaking the Vicious Cycle_ by Elaine Gottschall and read the following > websites: > http://www.breakingtheviciouscycle.info > and > http://www.pecanbread.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 I'm so sorry you and they are going through this. Twins are stressful enought without health and developmental issues. Please forgive me for stepping outside of the SCD box because I think this is a desperate situation that requires more than a SCD formula. At her age and state I do not believe SCD or SCD formulas would be safe/effective. I highly recommend that when you get to foods you start with SCD safe ones. But at this point I strongly believe your daughters need to be tested for something called Eosinophilic Esophagitis. It isn't as rare as once thought and the symptoms (which are allergy related) mimic reflux. With the other symptoms you mention I would think this is a probable diagnosis for your girls. You won't know until you do a scope though. SCD will be a great help eventually but this is a disease where initially your daughters are allergic to everything--including SCD safe food proteins. Cincinnati Children's hospital are the leaders and have a center for Eosinophilic disorders. However, they have a wait list to get in (long). You can't wait months as they need nutrition and healing now. What I would suggest is seeing a pediatric GI specialist to do testing if you can get in quickly. They will do a scope under anesthesia. It sounds terribly scary but it isn't and it is very quick (my son had it). You need this--you really do--and a good pediatric GI should recognize that and be able to do it (someone in a children's hospital for example). If one or both girls have Eosinophilic Disease you need to get to Cincinnati Chilrens if you can for treatment. If you are not able to do a scope or you want to try to heal it instead do an elemental formula (which would be the first line treatment anyway and I believe it is what your daughters need). Neocate has corn which some kids react to. Alimentum is not elemental and not suitable in your case. Try Elecare--lots of kids who fail neocate do well on Elecare--and give it time to work/heal. There is a site which has quite a few people with this situation called www.kidswithfoodallergies.com (I think that is is--it is POFAK--parents of kids with food allergies) and there is a yahoo board for Eosinophilic disorders also. I am so sorry and as far as SCD goes it will help you later but you need something more right now... le (mommy to two year old twins on SCD) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 le is absolutely right - EE is the probably diagnosis and should absolutely be ruled out via a scope (upper and lower is best as long as they're under). I agree that an immediate trial of Elecare is probably best, Neocate has the known corn problems (my son is allergic) though it's the one most GIs would start them on (they don't understand why the corn syrup solids creates problems for our kids). I would start the girls on Elecare right away, then get on the waiting list at Cincinnatti Childrens. I hear that Dr. Putnam is good about communicating via email with families who he can't see right away. While you're on the waiting list a tCoincinnati, try to find the most EE-experienced Ped. GI near you. This will be difficult, but you need to get on THEIR waitlist as soon as you can. All these guys have long waitlists, and in my opinion, if you have to wait, you might as well wait for the best doc. Very few local Ped. GIs are experienced enough with EE to be able to diagnose it. They don't know what to look for or where to look, since they don't see it enough, or they don't recognize it when they see it. I've been told that the eosinophils tend to hide in particular areas of the esophagus, and you have to know where to look to find them. Anyhow, the first thing to do is to help your girls as fast as possible, and Elecare (or try Neocate if Elecare fails) are the best, fastest things you can do for them - and it's the same thing that the Ped. GI would do with an EE diagnosis. Let us know how the girls do, okay? Suzanne 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.