Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Hi Cami, it is a good feeling that you are not alone! one part of your post struck a cord as my son Ben was classed as failure to thrieve, and when I finally got a copy of his notes (I live in the UK), I to found that they suspected me of not feeding him. the good thing about this though, when he was admitted as an in-patient for 'investigations' (i later discovered that they wanted to monitor me!)he was eating the hospital food - fed by the nurses, drinking from their bottles etc and he lost the most weight that he has ever lost in a week!!!!! Proved them wrong.!!! Anyway, welcome, you will find that there are many others going through the same things, and others who have already gone through it and it really does help. a (Ben 34mths) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Dear Cami, welcome to the group! myself and many others here know well how you feel about " finally " having an answer, one of the hardest things with not " knowing " is wondering how it is all going to turn out. Others have been stuck under the FTT microscope too, though many of the kids don't have 's appetite! I suggest you check out the photos section, there are also photos of our kids in the files section, you might see some similarities with . Steph (in Australia, mum to Darcy 27 months, 7.3kg, 78cm who also has an appetite and Tessa, 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Dear Cami, welcome to the group! myself and many others here know well how you feel about " finally " having an answer, one of the hardest things with not " knowing " is wondering how it is all going to turn out. Others have been stuck under the FTT microscope too, though many of the kids don't have 's appetite! I suggest you check out the photos section, there are also photos of our kids in the files section, you might see some similarities with . Steph (in Australia, mum to Darcy 27 months, 7.3kg, 78cm who also has an appetite and Tessa, 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Cami ( & others who want a " simple " explanation on Ketones) - Hi! I'm , and my daughter is . She was diagnosed with RSS right around 2-2.5 yrs of age. She was also abut 19 lbs at 2yrs. In fact, in our RSS networking database, it seems like 18-19 pounds is about the mean for RSS kids (those that weren't born at 28 weeks or so!!!). Between here and MAGIC and other places, you will continue to grow and learn tons of info that will help you. There are many of us who are willing to talk off-line on the phone as well. The most important medical piece of info we can give you (you can read it all if you call MAGIC at 800-3MAGIC3 and ask for them to mail you the RSS information) is to guard against the spilling of ketones/hypoglycemia. People always ask what this means, and I simply can't write Dr. Harbison's techno-medical lingo into layman's terms. But here is how I kind of interpret it. RSS/SGA kids need FOOD!!!! not just liquids. Carbohydrates to be specific. A child's normal glycogen storage lasts about 6 hours let's say. Once that glycogen storage is used up, and there is no food in the system (again, carbos most important), then the body will move on to burn fat for energy. (Hence, why the Adkin's Diet is so popular, stop eating carbos, test your morning urine for ketone spilling, and when the ketones show, it means you are getting skinner because your body is burning fat!!!!). However, guess what. The SGA/RSS kid HAS NO BODY FAT!!!! So guess what the body goes to burn when it can't find carbos and can't find body fat. MUSCLE!!!! And guess what the largest muscle in the body is -- THE BRAIN!!!! So.... the way we prevent this for a 2-year-old is to feed them constantly. Even if it is handing them a rits bits cracker every 20 minutes. Or 3 cheetoes. Or a Saltine cracker. Constantly. And at night, at bedtime, let them drink a big glass of milk (or soy or pediasure or a mix), put a tablespoon of cornstarch in it. Shake it up. This cornstarch will add an additional 4-6 hours of glycogen storage to the 4-6 hours your child already will have. Hence, the child should be able to get through the night without spilling ketones!!!! (being able to sleep 8-12 hours through the night). I hope I explained this simply enough. My daughter grew pretty well from 2.5-3.5 yrs, with an increase in calories by switching to 50% Pediasure/50% whole milk instead of 100% whole milk (plus trying to give more calories in general). But by age 3.5, she had begun preschool 3 days a week, and 2 after school activities. Weight gain ceased. At 4.5 years, she was just 27 pounds. But then we found MAGIC and Dr. Harbison, and just 1.5 years later, she is now a whopping 39.5 pounds and criminies, you'd think I would remember, but something like 44 or 45 " tall. (With the help of Periactin and growth hormone). Anyways. Glad to have you in our " family. " Salem > Dear Cami, > welcome to the group! > myself and many others here know well how you feel about " finally " > having an answer, one of the hardest things with not " knowing " is > wondering how it is all going to turn out. Others have been stuck > under the FTT microscope too, though many of the kids don't have > 's appetite! > > I suggest you check out the photos section, there are also photos of > our kids in the files section, you might see some similarities with > . > > Steph (in Australia, mum to Darcy 27 months, 7.3kg, 78cm who also has > an appetite and Tessa, 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2002 Report Share Posted March 6, 2002 Cami ( & others who want a " simple " explanation on Ketones) - Hi! I'm , and my daughter is . She was diagnosed with RSS right around 2-2.5 yrs of age. She was also abut 19 lbs at 2yrs. In fact, in our RSS networking database, it seems like 18-19 pounds is about the mean for RSS kids (those that weren't born at 28 weeks or so!!!). Between here and MAGIC and other places, you will continue to grow and learn tons of info that will help you. There are many of us who are willing to talk off-line on the phone as well. The most important medical piece of info we can give you (you can read it all if you call MAGIC at 800-3MAGIC3 and ask for them to mail you the RSS information) is to guard against the spilling of ketones/hypoglycemia. People always ask what this means, and I simply can't write Dr. Harbison's techno-medical lingo into layman's terms. But here is how I kind of interpret it. RSS/SGA kids need FOOD!!!! not just liquids. Carbohydrates to be specific. A child's normal glycogen storage lasts about 6 hours let's say. Once that glycogen storage is used up, and there is no food in the system (again, carbos most important), then the body will move on to burn fat for energy. (Hence, why the Adkin's Diet is so popular, stop eating carbos, test your morning urine for ketone spilling, and when the ketones show, it means you are getting skinner because your body is burning fat!!!!). However, guess what. The SGA/RSS kid HAS NO BODY FAT!!!! So guess what the body goes to burn when it can't find carbos and can't find body fat. MUSCLE!!!! And guess what the largest muscle in the body is -- THE BRAIN!!!! So.... the way we prevent this for a 2-year-old is to feed them constantly. Even if it is handing them a rits bits cracker every 20 minutes. Or 3 cheetoes. Or a Saltine cracker. Constantly. And at night, at bedtime, let them drink a big glass of milk (or soy or pediasure or a mix), put a tablespoon of cornstarch in it. Shake it up. This cornstarch will add an additional 4-6 hours of glycogen storage to the 4-6 hours your child already will have. Hence, the child should be able to get through the night without spilling ketones!!!! (being able to sleep 8-12 hours through the night). I hope I explained this simply enough. My daughter grew pretty well from 2.5-3.5 yrs, with an increase in calories by switching to 50% Pediasure/50% whole milk instead of 100% whole milk (plus trying to give more calories in general). But by age 3.5, she had begun preschool 3 days a week, and 2 after school activities. Weight gain ceased. At 4.5 years, she was just 27 pounds. But then we found MAGIC and Dr. Harbison, and just 1.5 years later, she is now a whopping 39.5 pounds and criminies, you'd think I would remember, but something like 44 or 45 " tall. (With the help of Periactin and growth hormone). Anyways. Glad to have you in our " family. " Salem > Dear Cami, > welcome to the group! > myself and many others here know well how you feel about " finally " > having an answer, one of the hardest things with not " knowing " is > wondering how it is all going to turn out. Others have been stuck > under the FTT microscope too, though many of the kids don't have > 's appetite! > > I suggest you check out the photos section, there are also photos of > our kids in the files section, you might see some similarities with > . > > Steph (in Australia, mum to Darcy 27 months, 7.3kg, 78cm who also has > an appetite and Tessa, 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Josh is on a Diet of Pediasure. He is supposed to drink 4 bottles in a 24 hour period. Most days we are lucky to get one in him. BUT, thank goodness his favorite foods are carbs. When he was eating all of that baby food and nursing so much he would eat 10 or 12 ritz crackers a day. The weight wasn't staying on him thought. Your right, he has NO fat on him. He has the huge belly from being starved, but, he is all skin and bones. He does take one of those pediasure bottles to bed with him. I know its bad for a baby to have a bottle in bed at night, but if I don't give it to him he is up every 2 hours. With the bottle with him he snacks all night on his own. Sounds lazy I know, but I think he has learned to eat in his sleep, giving me time to sleep. When I was getting a lot of flack for him still being on a bottle at 18 months I tried to take him off of it. He dropped 3 lbs in a week. So, of course back on the bottle he went. I want you all to know that I feel better already. If this doctor does not call me back today we are going to start getting ugly. I feel like they are letting my baby waste away and of course its not their child so it doesn't bother them. The red tape of the military insurace really can be a pain. Cami > > Dear Cami, > > welcome to the group! > > myself and many others here know well how you feel about " finally " > > having an answer, one of the hardest things with not " knowing " is > > wondering how it is all going to turn out. Others have been stuck > > under the FTT microscope too, though many of the kids don't have > > 's appetite! > > > > I suggest you check out the photos section, there are also photos > of > > our kids in the files section, you might see some similarities with > > . > > > > Steph (in Australia, mum to Darcy 27 months, 7.3kg, 78cm who also > has > > an appetite and Tessa, 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Cami, There are a lot of us here who know how you feel! " Why won't my baby grow!? " A geneticist might be a better idea to start with. That is where we got our diagnosis. My son is 6 1/2 years old now. He was so tiny for so long and they just thought he was small because he was born early (only 2 weeks)! We really felt like we were getting the run around for a long time. Check out the MAGIC Foundation web sight. www.magicfoundation.org it has all sorts of information about RSS. Also you can look at pictures of our kids in the files or go to rsskids.com and see some pictures. If looks like he could be related to our kids, it's a good bet that he is related through RSS! Does he have curved little pinky fingers? A tiny chin and big head for his body? These are some of the little things that most (although not all) of our little guys have! If you have any questions chime in!!!! I don't know what I would have done had I not found this list 3 years ago!!!! What a blessing it has been for me and I hope it will be for you to! You are not alone!!!! We are hear, and we know, we've been there, and we will listen!!!!! So type away and vent! It helps so much! Thanks guys!!! Carmen, Mom to Storm age 6.5 yrs. 35 pounds, 42 inches Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Hi Cami- You have come to the right place for support and answers to some of your questions. Welcome to the group! I am relate to being so frustrated and feeling like I was the only one who thought there was a problem (even my family didn't think there was a problem). The FTT is a hard pill to swallow and I still have bad memories about reading that in the records. However, now we know what the diagnosis is and can move on which is good. It seems to me the next two visits should be with a Ped Endo and a geneticist. I took information from the MAGIC website related to RSS nad pics of other kids to show my docs b/c they weren't very familiar with RSS. This seemed to help.... Has anyone mentioned periactin to you to help with the appetite? Or does your son have a poor appetite? I wish you luck and hope we can help! F. (mom to Dominic, RSS, 30 months, 17lbs.) -- In RSS-Support@y..., " camiwil " <ak.wilsons@g...> wrote: > Hi, > My name is Cami and I have 4 children. My 4th, (a.k.a The > Bonsai Baby: we water him, we feed him he just doesn't grow), will be > 2 in 3 weeks. He is 30 inches tall and weighs 19 lbs. We have been > round and round with our pediatrician and have been seeing a GI for > the past year. Our GI brought up RSS on our visit on Monday. He seems > to think a visit with an endocrinologist may be in order. We have no > idea where to start. Our insurance is dependant on a referral from > our Pediatrician (which I am waiting on). We live in Alaska right > now, and will be moving to the lower 48 this summer. My husband is in > the military so we don't quite know where we are going yet. I know it > probably sounds odd for me to say that this seems like a light at the > end of the tunnel. We have looked for over a year now for some > explanation of why is so small and why he has the digestion > problems he has. Our diagnoses have ranged from Rickets to Failure to > Thrive (which they told me was because I was not feeding him enough, > he was eating 6 jars of food and nursing every hour from 4 months > old). At one point they thought he had Celiac disease as well as CF. > We really fell like we have run the gambit. I am sure there are many > here that have similar stories. I would love to hear from you. Even > if this does not turn out to be RSS, some one to talk to that has run > the same gambit would be nice. I am sure my husband and Ken could > relate, I never shut up about this. It is forever at the forefront of > my mind. I don't want to get to old and us to have never > come > to a conclusion. Or have waited too long and there have been things > we could have done. Okay, I have gone on long enough. Thanks for > listening to me. > > Cami Quote Link to comment Share on other sites More sharing options...
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