Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 My youngest has ear infections all of the time in fact she had tubes put in her ears. Now my oldest had ear infections until she was 1 years old then after that she never had anymore. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 You are correct; She, Sara, is the very confused one! Love, n Rojas, who, of course, may be wrong, but I have cf and one of mine does and we live in sinus surgery or's and ENT offices! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 I think that you ought to tell the doc everything she said. making sure you tell him & ---remind him that this CF is new to you, & she isn't doing a very good job of helping you understand it better or feeling that you can do all that is necessary for your child. She should be making you feel like your in good hands at THAT clinic. He needs to teach her some patient " manners " or " how to's " in treating parents & patients with this disease. It is hard enough with her not doing her job of NURSING. you are doing well .Your agreeing proves your doing all in your power to help them help you with your son. I do hope you have better connection with him. I would simply let her know you are the MOTHER..You pay her salary, afterall.AND you want anything and all that is best for him. NOW I hold you in my best wishes. LOVE & HUGS, grandmomBEV VERY CONFUSED Hi everyone, I am getting information from my cf coordinator at our cf clinic that does not seem to go along with what others have experienced. First, Zach is having a lot of ear infections. I was told that cf kids really do not get many ear infections because their immune systems are so revved up that they can fight these infections off easily. I think she was politely telling me that his ear infections are not cf related, but I insisted on an ENT consult anyway and they are humoring me. Secondly, Zach is once again having large yellow mushy stools. I told the cf coordinator that we had modified Zach's diet and he had gained weight and had formed stools. But since Friday he is having a lot of absorption problems. She was alarmed that I had restricted Zach's diet because as long as cf people take their enzymes they can eat anything they want. Long story short we are starting a 72 hour fat stool study tonight. She was amazed that I agreed to this, but I will do anything to make my baby feel better. Period. I think she is using some flawed logic with some of her assumptions and I think she is getting tired of me. What are your thoughts????? Sara - mommy to Zach 19 months wcf ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Ok...so what dietary restrictions are you using, what kind of meds is he taking and when? What kinds of foods is he getting lately? In other words for us to help you, you need to give us all a run down of exactly what you're doing. That way we can all mush heads together and see if we see something going on. :-) Dawn mom of 4, 7 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 I stopped feeding Zach foods that I would have eaten to gain weight. No more hot dogs, tater tots, french fries, or junk food. We are feeding him toast with lots of butter, boost pudding, cheese, mashed potatoes with butter and cheese, high fat ice cream, peanut butter, lactaid whole milk, whole wheat crackers, etc. We tried to make it high cal, high fat and easy to digest. The Cf coordinator says we do not need to focus on the easy to digest part and only focus on high cal and high fat. I admit I goofed with the junk food. Zach loved it and I just assumed he would gain weight because I would have if I had eaten all of that stuff. Anyway he did not gain a single ounce on his unrestricted diet, but gained 11 ounces on his restricted diet. I was going to try some omega diet ideas, but I have to interlibrary loan it from our public library and it is not in yet. Is his restricted diet a bad idea? Sara - mommy to Zach 19 months > Ok...so what dietary restrictions are you using, what kind of meds is he taking and when? What kinds of foods is he getting lately? In other words for us to help you, you need to give us all a run down of exactly what you're doing. That way we can all mush heads together and see if we see something going on. :-) > > Dawn mom of 4, 7 and under, the youngest wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 That answers some of my questions. I don't see anything wrong with easy to digest foods as long as the fats, and calories are right and providing that he will eat them. They are better for him than junk food. We basically do the same thing with Patti. The junk food we do allow her to have is what we make at home from scratch. Nastily rich brownies made with omega fortified eggs, butter, and olive oil and really good choclate, potatoes fried in olive or cannola oil, sausages that we've made from wild hogs, bacon trimmings, and lots of seasonings, etc. You get the idea. It is still " junky, " but I've controlled the ingredients. One inconsistancy that I am noticing in Zach's diet is the lactaid milk and the high fat icecream. Patti (2.5 wcf) is lactose intolerant. She drinks pediasure instead of milk. I know that when she has tried drinking milk or when she eats ice cream that her poo's are terrible and no amount of enzymes is enough to keep it from being runny and soft. If you are giving him lots of high fat regular ice cream this could be your problem. What we eventually did was take her formula, (now the pediasure), a fruity yogurt with active cultures and the highest fat vanilla we could find and whip it up into a really thick smoothy in the blender. The active yogurt cultures were enough to solve the problems of her gut not being able to handle the ice cream. (By the way her favorite flavors are blueberry and orange) One other thing that might help is to calculate out the grams of fat in the food you are feeding him. Then look at the pharmacy sheet of the enzymes Zach is taking. Somewhere in that gobledy-gook is how many fat grams one pill will help absorb. Try giving him the sheet number of enzymes for the fat grams in the food he has in front of him. This has helped us in the past, as sometimes I've underestimated how much fat was really in her food and therefore underestimated the enzymes needed. One more question/suggestion. ;-) How long is it taking for Zach to finish his meal. The older Patti gets the more she socializes, just like every one else at our meal times. If that 30 minute mark has come and she is still eating, I give her a couple of more enzymes to help finish digesting that last bit of food that she's in the middle of eating. Why is your coordinator the one that cares about what he eats? Is she also his dietician? Did you talk over the diet and your concerns with the cf doc? Our dietician of the past would completely flip out over the things that I would tell her that we were doing. I'd be steaming by the time the doc. got there and would tell the whole story of what we were doing and why. She almost always sided with me or we would reach a compromise. But it was a lot better with her than our pushy little dietician. :-) Good luck and keep us posted, Dawn mom of 4, 7 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Sara, We moms are so particular aren't we? That is our jobs. We know when something just does not seem right. I would go with your gut on this one. I have changed doctors I could not tell you how many times and have to start over every time but it is worth it. I know you feel the same way. Perhaps if you do try St Louise and we end up moving there we may meet a time or two. Trust yourself you will make the right decisions. Oh also I do not see what is wrong with giving more healthy high calorie high fat foods. Makes sence to me. At least they will get other nutrients from them which is much more than you can say about Mcs. You are a good mom you know what to do with Zach. Love to you \ Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2003 Report Share Posted September 16, 2003 Sometimes those dieticians can be very ugly huh? It does not matter what you try if it is not in the books that they studied it is not right. I am lucky with one of mine but the other is horrible. I have two for Colgan a CF dietician and a regular clinc dietician. We usually meet at one point or another on most terms. LOL Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Sara, I always say if " it ain't broke don't fix it! " Lol, Sounds like Zach is getting a fine diet to me. You are adding the " fats " The butter, cheese etc.. is good for him. You are feeding him wholesome foods. He is gaining weight. Where's the problem? Junk food has so many additives that we really don't need. Zach is only 19 months. I really didn't focus on the junk foods with Rhonda at that age. She was too young to care. Sure we gave cookies etc. but we concentrated on regular foods that we would cook and add the fats accordingly. Don't let your dietitian make you feel like you are doing something wrong. It's working, keep with it. With the stools it could be simply an enzyme adjustment is needed. The fecal fat study will help with that. We went through much trial and error with enzymes till we found the accurate dosage. Also as they gain weight they may need more enzymes as they are eating more. Now that Rhonda is older we pretty much let her eat what she chooses to eat. So I am not knocking the " junk " food. I am sure it has helped sustain Rhonda at times. For about 6 months all she would eat was Mcs. We just went with it. As long as she was eating. It was a phase and she moved on to porkchops from there. So, don't sweat the dietitian. They just think they know it all! If it ain't broke - don't fix it !! , Mom to Rhonda 14 wcf 15 in 8 days! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 My daughter's first pneumonia started out as an ear infection. it " traveled " to her other ear and then to her lungs within a few days. You have to choose the foods that you are comfortable giving him. If you are uncomfortable with the junky foods then don't give them. can eat either but tends to prefer things like veggies to pasta or pizza. So, I put a ton of butter on them and give her the dressing to dip in. stick to your guns. maybe as he gets older you can work a few " junk food " items in if he tolerates them. a little bit is ok. everything in moderation. About the poops, have you added anything new to his diet? VERY CONFUSED Hi everyone, I am getting information from my cf coordinator at our cf clinic that does not seem to go along with what others have experienced. First, Zach is having a lot of ear infections. I was told that cf kids really do not get many ear infections because their immune systems are so revved up that they can fight these infections off easily. I think she was politely telling me that his ear infections are not cf related, but I insisted on an ENT consult anyway and they are humoring me. Secondly, Zach is once again having large yellow mushy stools. I told the cf coordinator that we had modified Zach's diet and he had gained weight and had formed stools. But since Friday he is having a lot of absorption problems. She was alarmed that I had restricted Zach's diet because as long as cf people take their enzymes they can eat anything they want. Long story short we are starting a 72 hour fat stool study tonight. She was amazed that I agreed to this, but I will do anything to make my baby feel better. Period. I think she is using some flawed logic with some of her assumptions and I think she is getting tired of me. What are your thoughts????? Sara - mommy to Zach 19 months wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 I only give Zach high fat ice cream for teething pain. I am able to get the cold ice cream right where it hurts. We have to drive an hour to get the lactaid milk and can't find any lactose free ice cream. He is on two Ultrase mt 4 and three Pancrecarb 4's for meals. They are trying to switch him from Ultrase to Pancrecarb slowly. We mix all of the enzymes together then give him bites of applesauce and enzymes throughout the meal (per doctor's instructions). So he only gets a little bit of enzymes if he doesn't eat very long. Our dietician is very new. She started the same time Zach was diagnosed. I was under the impression after his diagnosis that I was supposed to shovel high fat food at him. I am hoping the food diary I am keeping for the stool study will help clarify some diet problems. Thanks for your help. SAra > That answers some of my questions. I don't see anything wrong with easy to digest foods as long as the fats, and calories are right and providing that he will eat them. They are better for him than junk food. We basically do the same thing with Patti. The junk food we do allow her to have is what we make at home from scratch. Nastily rich brownies made with omega fortified eggs, butter, and olive oil and really good choclate, potatoes fried in olive or cannola oil, sausages that we've made from wild hogs, bacon trimmings, and lots of seasonings, etc. You get the idea. It is still " junky, " but I've controlled the ingredients. > > One inconsistancy that I am noticing in Zach's diet is the lactaid milk and the high fat icecream. Patti (2.5 wcf) is lactose intolerant. She drinks pediasure instead of milk. I know that when she has tried drinking milk or when she eats ice cream that her poo's are terrible and no amount of enzymes is enough to keep it from being runny and soft. If you are giving him lots of high fat regular ice cream this could be your problem. What we eventually did was take her formula, (now the pediasure), a fruity yogurt with active cultures and the highest fat vanilla we could find and whip it up into a really thick smoothy in the blender. The active yogurt cultures were enough to solve the problems of her gut not being able to handle the ice cream. (By the way her favorite flavors are blueberry and orange) > > One other thing that might help is to calculate out the grams of fat in the food you are feeding him. Then look at the pharmacy sheet of the enzymes Zach is taking. Somewhere in that gobledy-gook is how many fat grams one pill will help absorb. Try giving him the sheet number of enzymes for the fat grams in the food he has in front of him. This has helped us in the past, as sometimes I've underestimated how much fat was really in her food and therefore underestimated the enzymes needed. > > One more question/suggestion. ;-) How long is it taking for Zach to finish his meal. The older Patti gets the more she socializes, just like every one else at our meal times. If that 30 minute mark has come and she is still eating, I give her a couple of more enzymes to help finish digesting that last bit of food that she's in the middle of eating. > > Why is your coordinator the one that cares about what he eats? Is she also his dietician? Did you talk over the diet and your concerns with the cf doc? Our dietician of the past would completely flip out over the things that I would tell her that we were doing. I'd be steaming by the time the doc. got there and would tell the whole story of what we were doing and why. She almost always sided with me or we would reach a compromise. But it was a lot better with her than our pushy little dietician. :-) > > Good luck and keep us posted, > Dawn mom of 4, 7 and under, the youngest wcf > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 No, that is why I am stumped as to what is happening. He has had three large bowel movements since 5am and it is only 7:30 am. Poor guy just cries when he poops. Sara About the poops, have you added anything new to his diet? > > VERY CONFUSED > > > Hi everyone, > I am getting information from my cf coordinator at our cf clinic > that does not seem to go along with what others have experienced. > First, Zach is having a lot of ear infections. I was told that cf > kids really do not get many ear infections because their immune > systems are so revved up that they can fight these infections off > easily. I think she was politely telling me that his ear infections > are not cf related, but I insisted on an ENT consult anyway and they > are humoring me. Secondly, Zach is once again having large yellow > mushy stools. I told the cf coordinator that we had modified Zach's > diet and he had gained weight and had formed stools. But since > Friday he is having a lot of absorption problems. She was alarmed > that I had restricted Zach's diet because as long as cf people take > their enzymes they can eat anything they want. Long story short we > are starting a 72 hour fat stool study tonight. She was amazed that > I agreed to this, but I will do anything to make my baby feel > better. Period. > I think she is using some flawed logic with some of her assumptions > and I think she is getting tired of me. > What are your thoughts????? > Sara - mommy to Zach 19 months wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Fortunatly for me, the dietician that I didn't like has left. The clinic has since had two more. Both of them were very nice. Dawn mom of 4, 7 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Teething pain is why we gave Patti icecream as well. We also live in a small town and cannot get many things, which is why I tried mixing her icecream with yogurt. When she was teething she wouldn't drink from her bottle, but would from a straw. So we made two large batches of smoothies and froze them in breast milk freezerbags. Some we would let thaw enough for her to drink through a straw and some we would feed to her like ice cream. Refresh my memory, has he been checked for reflux? Dawn mom of 4, 7 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Zach had reflux as a baby, but doesn't vomit much now. He is on Pepcid to help his enzymes work better. He needs a lot of enzymes for some reason. I have heard of kids being really constipated after starting enzymes. Zach has never had a constipated day in his life. Your smoothie idea is a good one. Zach doesn't do well with yogurt, but I am willing to try it again (after the stool study is done). I found some new sippy cups with a silicone tip. The cold drink settles in the tip and Zach just gnaws on it. I am going to call our clinic and see what other tests they can do on the stool we have collected. Maybe it isn't fat malabsorption but something is making my baby feel lousy. Sara > Teething pain is why we gave Patti icecream as well. We also live in a small town and cannot get many things, which is why I tried mixing her icecream with yogurt. When she was teething she wouldn't drink from her bottle, but would from a straw. So we made two large batches of smoothies and froze them in breast milk freezerbags. Some we would let thaw enough for her to drink through a straw and some we would feed to her like ice cream. > > Refresh my memory, has he been checked for reflux? > > Dawn mom of 4, 7 and under, the youngest wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 We were told to through the cf coordinator for everything. I have learned my lesson though. Last clinic I wanted to meet with the dietician and told the cf coordinator this. The dietician walks in the room to get something out of a filing cabinet and I start asking her a bunch of questions about Zach. She had no idea that I wanted to meet with her. Now I know to call ahead to the person directly and not depend on the coordinator. The dietician had only one suggestion - to start using pediasure, scandical and scandishake. She wasn't even upset that we were giving him hot dogs, etc. Sara > > Why is your coordinator the one that cares about what he eats? Is she also his dietician? Did you talk over the diet and your concerns with the cf doc? Our dietician of the past would completely flip out over the things that I would tell her that we were doing. I'd be steaming by the time the doc. got there and would tell the whole story of what we were doing and why. She almost always sided with me or we would reach a compromise. But it was a lot better with her than our pushy little dietician. :-) > > Good luck and keep us posted, > Dawn mom of 4, 7 and under, the youngest wcf > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 I called the clinic and they can only order a fecal fat study. I asked why we couldn't test all of his stool for other potential problems and the cf coordinator said that if it isn't fat malabsorption then it is a gastrointerology (sp??) problem. Our pediatrician will have to address any gastrointerology (sp??) problems. If the study does not show fat malabsorption, which I doubt it will, then I must get a referral from our ped for a GI consult. UGH! Zach feels awful. He never sleeps but he took a 3 hour nap this morning and has been sleeping again for an hour. He is so tired that if he falls when he is walking, he doesn't even try to stand up he just lays his head down. I told the cf coordinator this and she said that would not be cf related. So I guess I should understand that only breathing problems and fat malabsorption are cf problems. Luckily Zach saw a really nice pediatric GI doc last October for his reflux and umbilical hernia (which he still has). I am going to ask for a referral to this doctor if the fat study does not show any problems. Oh and to add a cherry to the top of my cake of a day, the cf coordinator coordinated the fecal fat study with the wrong lab. My insurance does not use the lab she sent me to. Calgon take me away!! Sara > I am going to call our clinic and see what other tests they can do > on the stool we have collected. Maybe it isn't fat malabsorption > but something is making my baby feel lousy. > Sara > > > > Teething pain is why we gave Patti icecream as well. We also live > in a small town and cannot get many things, which is why I tried > mixing her icecream with yogurt. When she was teething she wouldn't > drink from her bottle, but would from a straw. So we made two large > batches of smoothies and froze them in breast milk freezerbags. > Some we would let thaw enough for her to drink through a straw and > some we would feed to her like ice cream. > > > > Refresh my memory, has he been checked for reflux? > > > > Dawn mom of 4, 7 and under, the youngest wcf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 I suppose the CF clinic you go to doesn't have a GI doc? A lot of them do. how odd that they can't order other testing. About the falling down and not wanting to get up. did that once and part of the problem was that she was dehydrated. The sleeping a lot often happens when they are beginning to come down with something. I would keep a close eye on him. I hope he is feeling better soon. Re: VERY CONFUSED I called the clinic and they can only order a fecal fat study. I asked why we couldn't test all of his stool for other potential problems and the cf coordinator said that if it isn't fat malabsorption then it is a gastrointerology (sp??) problem. Our pediatrician will have to address any gastrointerology (sp??) problems. If the study does not show fat malabsorption, which I doubt it will, then I must get a referral from our ped for a GI consult. UGH! Zach feels awful. He never sleeps but he took a 3 hour nap this morning and has been sleeping again for an hour. He is so tired that if he falls when he is walking, he doesn't even try to stand up he just lays his head down. I told the cf coordinator this and she said that would not be cf related. So I guess I should understand that only breathing problems and fat malabsorption are cf problems. Luckily Zach saw a really nice pediatric GI doc last October for his reflux and umbilical hernia (which he still has). I am going to ask for a referral to this doctor if the fat study does not show any problems. Oh and to add a cherry to the top of my cake of a day, the cf coordinator coordinated the fecal fat study with the wrong lab. My insurance does not use the lab she sent me to. Calgon take me away!! Sara > I am going to call our clinic and see what other tests they can do > on the stool we have collected. Maybe it isn't fat malabsorption > but something is making my baby feel lousy. > Sara > > > > Teething pain is why we gave Patti icecream as well. We also live > in a small town and cannot get many things, which is why I tried > mixing her icecream with yogurt. When she was teething she wouldn't > drink from her bottle, but would from a straw. So we made two large > batches of smoothies and froze them in breast milk freezerbags. > Some we would let thaw enough for her to drink through a straw and > some we would feed to her like ice cream. > > > > Refresh my memory, has he been checked for reflux? > > > > Dawn mom of 4, 7 and under, the youngest wcf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Sara, Every time we think that we have Abby's diet and enzymes figured out, things change. If you figure this out, you'll have to let the rest of us know. I think that maybe thier diets are changing and the number of enzymes needed are different from meal to meal. It's hard to know how many they will need, when they can't talk and tell you what they plan to eat! Take care, Gale > Hi everyone, > I am getting information from my cf coordinator at our cf clinic > that does not seem to go along with what others have experienced. > First, Zach is having a lot of ear infections. I was told that cf > kids really do not get many ear infections because their immune > systems are so revved up that they can fight these infections off > easily. I think she was politely telling me that his ear infections > are not cf related, but I insisted on an ENT consult anyway and they > are humoring me. Secondly, Zach is once again having large yellow > mushy stools. I told the cf coordinator that we had modified Zach's > diet and he had gained weight and had formed stools. But since > Friday he is having a lot of absorption problems. She was alarmed > that I had restricted Zach's diet because as long as cf people take > their enzymes they can eat anything they want. Long story short we > are starting a 72 hour fat stool study tonight. She was amazed that > I agreed to this, but I will do anything to make my baby feel > better. Period. > I think she is using some flawed logic with some of her assumptions > and I think she is getting tired of me. > What are your thoughts????? > Sara - mommy to Zach 19 months wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Abby is doing very well with the Omega diet and her cf dietician thought that it was a good idea. She still gets lots of calories and plenty of olive oil. Gale > > Ok...so what dietary restrictions are you using, what kind of meds > is he taking and when? What kinds of foods is he getting lately? > In other words for us to help you, you need to give us all a run > down of exactly what you're doing. That way we can all mush heads > together and see if we see something going on. :-) > > > > Dawn mom of 4, 7 and under, the youngest wcf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Sara, I'm sleep deprived too so I empathize. Anway, here's my 2-cents. Ear infections along with the large yellow mushy stools signals to me that the ear infections could be fungal, which antibiotics won't treat -- or their of course, bacterial. No matter, because with the antibiotics they probably gave him for the ear infections, it left his gut messed up. Antibiotics kill both good and bad bacteria, and you need the good flora in the gut to help prevent diarrhea. Also, remember the body manufacturers vitamin K in the intestines. If you're low in K then that effects clotting and bone growth or density or something that I'm too tired to remember... My son had numerous ear infections from the get go, so had tubes put in his ears at 10 months. After that he did much better, so it's not an issue of kids with CF having a revved up immune system. Just because the body is constantly fighting underlying inflammation doesn't make for a healthier immune system. Additionally, the foods you listed that you're feeding him are better choices than hot dogs, etc. But you might want to tweak it more. For example, look at the type of peanut butter you buy. Does it contain only peanuts, or does it also contain the types of fats and oils that contribute to inflammation, such as cottonseed or soybean oil, etc. Some kids can't handle too much fat on any given day despite the number of enzymes they take. I wanted to scream when I read that your doctor said that as long as people with CF take their enzymes they can eat anything they want! Just which cereal box did this moron find her medical diploma? I learned that my son couldn't eat hotdogs AND peanut butter in the same day. But eating them on different days was fine and he could stay with one enzyme per meal. Think about how YOU would feel if you ate all the types of high fat foods that these doctors are pushing on these kids. Believe me, your stomach would hurt and you'd feel like crap. If he's not digesting veggies well, then cut them smaller, mash them or shred them into muffins and quick breads. Make sure you sit with Zach and coach him to chew, chew, chew. The enzymes that are released in the mouth are for starches and it's the beginning of the digestion process; enzymes aren't just released into the intestines. Bottom line (no pun intended) buy a good probiotic and give it to Zach about 30 minutes prior to meals (preferably an enteric coated probiotic). This will reintroduce the good flora in his gut to help with the sloppy stools caused by antibiotics and diarrhea. I've seen a reduction in my sinus infections while taking a probiotics, and studies showed ear and sinus infections were reduced while taking probiotics. Good luck. Kim > Hi everyone, > I am getting information from my cf coordinator at our cf clinic > that does not seem to go along with what others have experienced. > First, Zach is having a lot of ear infections. I was told that cf > kids really do not get many ear infections because their immune > systems are so revved up that they can fight these infections off > easily. I think she was politely telling me that his ear infections > are not cf related, but I insisted on an ENT consult anyway and they > are humoring me. Secondly, Zach is once again having large yellow > mushy stools. I told the cf coordinator that we had modified Zach's > diet and he had gained weight and had formed stools. But since > Friday he is having a lot of absorption problems. She was alarmed > that I had restricted Zach's diet because as long as cf people take > their enzymes they can eat anything they want. Long story short we > are starting a 72 hour fat stool study tonight. She was amazed that > I agreed to this, but I will do anything to make my baby feel > better. Period. > I think she is using some flawed logic with some of her assumptions > and I think she is getting tired of me. > What are your thoughts????? > Sara - mommy to Zach 19 months wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Kim, The peanut butter idea is interesting. Have you seen the machine on tv that can grind peanuts into peanut butter? That might be an idea to try. I will check the labels. I was wondering if he may not be able to tolerate soybean oil. He did not do well on soy formula as an infant but we didn't know he had cf at the time. If his ear infections are fungal how would that be treated and how could they test him for that? Would probiotics help with that? Do you give them just like enzymes in applesauce? You always have such good advice. I thought what she said about cf being about absorption and not digestion sounded weird. She said that cf people can't absorb the food but can digest it fine. That is why she thinks I should not restrict anything he eats. Why does he need so many enzymes if he digesting things fine?! No one can answer that question for me. Sara > > Hi everyone, > > I am getting information from my cf coordinator at our cf clinic > > that does not seem to go along with what others have experienced. > > First, Zach is having a lot of ear infections. I was told that cf > > kids really do not get many ear infections because their immune > > systems are so revved up that they can fight these infections off > > easily. I think she was politely telling me that his ear infections > > are not cf related, but I insisted on an ENT consult anyway and they > > are humoring me. Secondly, Zach is once again having large yellow > > mushy stools. I told the cf coordinator that we had modified Zach's > > diet and he had gained weight and had formed stools. But since > > Friday he is having a lot of absorption problems. She was alarmed > > that I had restricted Zach's diet because as long as cf people take > > their enzymes they can eat anything they want. Long story short we > > are starting a 72 hour fat stool study tonight. She was amazed that > > I agreed to this, but I will do anything to make my baby feel > > better. Period. > > I think she is using some flawed logic with some of her assumptions > > and I think she is getting tired of me. > > What are your thoughts????? > > Sara - mommy to Zach 19 months wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 I will definately let you know. This disease has me stumped for sure. I just hope I can figure it out soon so Zach doesn't feel so bad. Sara > > Hi everyone, > > I am getting information from my cf coordinator at our cf clinic > > that does not seem to go along with what others have experienced. > > First, Zach is having a lot of ear infections. I was told that cf > > kids really do not get many ear infections because their immune > > systems are so revved up that they can fight these infections off > > easily. I think she was politely telling me that his ear > infections > > are not cf related, but I insisted on an ENT consult anyway and > they > > are humoring me. Secondly, Zach is once again having large yellow > > mushy stools. I told the cf coordinator that we had modified > Zach's > > diet and he had gained weight and had formed stools. But since > > Friday he is having a lot of absorption problems. She was alarmed > > that I had restricted Zach's diet because as long as cf people take > > their enzymes they can eat anything they want. Long story short we > > are starting a 72 hour fat stool study tonight. She was amazed > that > > I agreed to this, but I will do anything to make my baby feel > > better. Period. > > I think she is using some flawed logic with some of her assumptions > > and I think she is getting tired of me. > > What are your thoughts????? > > Sara - mommy to Zach 19 months wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 Thanks for the dehydration tip. Our doctor/referral situation is a real bear! We have an HMO and the CF clinic we go to is out of network, soooo we have been lucky to be able to go it at all. To get another out of network referral for an ENT or a GI doc will be unlikely, but I am trying. Luckily I just had my OBGYN annual and my doc gave me the name of the ENT her kids go to. She switched to him because he was so good. Her doctor is in our HMO network, so he is my backup plan. Zach saw an in network GI doc last year that I thought was ok and I will give him a chance again. With any luck we might be changing insurance soon. We are going to switch to a deductible type plan and not an HMO. We should have some more choices, but have to pay more out of pocket. I think it will be worth it in the long run. Sara > > > Teething pain is why we gave Patti icecream as well. We also > live > > in a small town and cannot get many things, which is why I tried > > mixing her icecream with yogurt. When she was teething she > wouldn't > > drink from her bottle, but would from a straw. So we made two > large > > batches of smoothies and froze them in breast milk freezerbags. > > Some we would let thaw enough for her to drink through a straw and > > some we would feed to her like ice cream. > > > > > > Refresh my memory, has he been checked for reflux? > > > > > > Dawn mom of 4, 7 and under, the youngest wcf > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2003 Report Share Posted September 17, 2003 I can tell you that Mallory DID have ALOT of ear infections (the other two with CF had some, but not more th an our other kids...) and they were always with GREEN GLUE like stuff coming out her ears. The ENT cultured it, but said he could telll by the smell it was pseudo and didn't even need to send it, but would since the CF doc had requested it. the problem was, it was so thick, etc that drops wouldn't work, tubes didn't work b/c they got clogged and we kept having to go back for unclogging...only ivs worked....since we started the q3 month iv regimen, we have not had an ear infection...so, I guess since its all so connected, they can get ear infections, though maybe in some kids it is no more frequent than in other kids....but if the pseudo is rampant, say, in the sinuses, all those parts are connected, make sense???? Jen mommy of 7, 3 with CF (and all 3 on ivs at the moment) > Hi everyone, > I am getting information from my cf coordinator at our cf clinic > that does not seem to go along with what others have experienced. > First, Zach is having a lot of ear infections. I was told that cf > kids really do not get many ear infections because their immune > systems are so revved up that they can fight these infections off > easily. I think she was politely telling me that his ear infections > are not cf related, but I insisted on an ENT consult anyway and they > are humoring me. Secondly, Zach is once again having large yellow > mushy stools. I told the cf coordinator that we had modified Zach's > diet and he had gained weight and had formed stools. But since > Friday he is having a lot of absorption problems. She was alarmed > that I had restricted Zach's diet because as long as cf people take > their enzymes they can eat anything they want. Long story short we > are starting a 72 hour fat stool study tonight. She was amazed that > I agreed to this, but I will do anything to make my baby feel > better. Period. > I think she is using some flawed logic with some of her assumptions > and I think she is getting tired of me. > What are your thoughts????? > Sara - mommy to Zach 19 months wcf Quote Link to comment Share on other sites More sharing options...
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