Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Jane, Hello! I just joined this group a few days ago. My son is seven months. So, we are pretty much in the same boat. I really don't know much about it yet, but have you contacted MAGIC about recieving the packet of information? How much does your daughter weigh? You can email me privately if you'd like at princessgs84@... Good Luck, and I hope to hear from you soon. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 > Hi Jane, my name is Leah and my 4.5yr old daughter Olivia has RSS, she's 18lbs and 33 " tall. She was on 3 hr. feeds around the clock for 2 years and then went down to 1-2 bottles per night. When we took the bottle away when she turned 3 she stopped gaining weight (she's been about 18lbs for 1.5yrs now), and started spilling ketones regularly. Each child reacts differently and I'm absolutly not a doctor, if she's gaining weight and not spilling then you're probably ok, but again I'm not a Dr. Absorb as much info as you can from all of the wonderful parents here and then discuss it with your Dr. Take care! Leah, mom to 9yrs and Olivia 4.5yrs, RSS, OI, 18lbs, 33 " lactulose, senokot, zantac and cyproheptadine (periactin) > Hi, my name is Jane Loscheider. My daughter (8 months) was newly diagnosed with RSS at Mayo Clinic in Rochester. I am so excited to be a part of this group. Because she has been recently diagnosed I am trying to get as much information as I can about the syndrome. My burning question at this point has been what to do about night feedings. eats well, I think- about 20 to 22 ounces of formula/day and now about 2 jars of step 1 food/day. She sleeps through the night and I am hearing so much info. about night time feedings or polycose. Can anyone provide me with some input if they have a child that eats about the same and what they have been told to do. We live in ND and so this syndrome is not well known in my area. I would appreciate any info. > On another note I am also wondering if another parent who has an RSS child with the box shape face is out there. This had been the one feature that threw our physicians off but after emailing with Jenn she told me about some other children with this same feature. I was hoping to see a photo (and I will share mine) to see some resemblence. > from desolate ND, > Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2004 Report Share Posted May 5, 2004 Jane, there is another family from ND I think the town area. I don't remember their name but did meet the husband at the convention last summer. I have family in ND Welocome aboard Maloy mom to Tori Re: New member - Jane > Hi Jane, my name is Leah and my 4.5yr old daughter Olivia has RSS, she's 18lbs and 33 " tall. She was on 3 hr. feeds around the clock for 2 years and then went down to 1-2 bottles per night. When we took the bottle away when she turned 3 she stopped gaining weight (she's been about 18lbs for 1.5yrs now), and started spilling ketones regularly. Each child reacts differently and I'm absolutly not a doctor, if she's gaining weight and not spilling then you're probably ok, but again I'm not a Dr. Absorb as much info as you can from all of the wonderful parents here and then discuss it with your Dr. Take care! Leah, mom to 9yrs and Olivia 4.5yrs, RSS, OI, 18lbs, 33 " lactulose, senokot, zantac and cyproheptadine (periactin) > Hi, my name is Jane Loscheider. My daughter (8 months) was newly diagnosed with RSS at Mayo Clinic in Rochester. I am so excited to be a part of this group. Because she has been recently diagnosed I am trying to get as much information as I can about the syndrome. My burning question at this point has been what to do about night feedings. eats well, I think- about 20 to 22 ounces of formula/day and now about 2 jars of step 1 food/day. She sleeps through the night and I am hearing so much info. about night time feedings or polycose. Can anyone provide me with some input if they have a child that eats about the same and what they have been told to do. We live in ND and so this syndrome is not well known in my area. I would appreciate any info. > On another note I am also wondering if another parent who has an RSS child with the box shape face is out there. This had been the one feature that threw our physicians off but after emailing with Jenn she told me about some other children with this same feature. I was hoping to see a photo (and I will share mine) to see some resemblence. > from desolate ND, > Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2004 Report Share Posted May 6, 2004 Hi Jane - here again. I did email Brady's mom and hopefully she will check email and send us his photo. Otherwise, it will be printed in the next newsletter! For those of you out there, what I was explaining to Jane is that a couple studies have found that RSS children with matUPD7 (meaning they inherited both chromosome 7s from mom, instead of one from dad and one from mom) lack a couple distinguishing RSS features -- primarily in the face. MatUPD7 RSS children often have more boxish/square faces -- they still have the bossed foreheads but don't have the triangular shaped facies). Re the nighttime feeds -- this is a tough one for us parents. Once your child finally sleeps through the night, do we really want to mess things up and wake them up? Everyone here has heard me talk about all these new studies I have been reading in preparation for writing this Guidebook. Well, I am even MORE of a strong proponent of preventing nighttime hypoglycemia than ever before. Especially if the infant/toddler is still very underweight and especially if their head circumference is large compared to their weight and length (for example, my daughter's head in infancy was in the 75th percentile, her weight and height weren't even on the charts.....). These studies indicate that even if an RSS/SGA child doesn't actually " test " for low blood sugar, they still recommend the prevention steps (meaning don't allow the child to go longer than 4- 6 hours without eating) due to the risks. Now, that being said. I think specialists like Dr. Harbison will suggest waking to feed for a young newborn, but for an 8-month old who is already sleeping through the night, IF the child's weight is at a good percentile and the CALORIES are not needed (remember that if the baby is sleeping 12 hours a night without eating, it severely limits the hours that caloric intake can be increased) -- then they would recommend using polycose at the bedtime feeding (and switching to cornstarch around 1 year of age). Put simply. Polycose and cornstach add between 4 and 6 hours of EXTRA glycogen storage to the underweight RSS/SGA child. So the child's bedtime feeding will give them 4-6 hours naturally, and then you add the extra 4-6 hours from the polycose or cornstarch. Now you have a good 8-12 hours that the child's body will have enough glycogen storage to burn for energy -- so that the body does NOT have to turn to muscle for energy (remember it has to turn to muscle because this tiny child has no body fat to burn). (Think Atkin's Diet -- when there is no glycogen storage in the body (carboys) the body burns fat and hence spills ketones). There is a MUCH better explanation of this situation written by Dr. Harbison, and one describes why our kids are more at risk for hypoglycemia (ID #H-26) and one is why cornstarch or polycose can help prevent it (H-28) available through MAGIC. Hope this helps explain a bit. > > Hi, my name is Jane Loscheider. My daughter (8 months) was newly diagnosed with RSS at Mayo Clinic in Rochester. I am so excited to be a part of this group. Because she has been recently diagnosed I am trying to get as much information as I can about the syndrome. My burning question at this point has been what to do about night feedings. eats well, I think- about 20 to 22 ounces of formula/day and now about 2 jars of step 1 food/day. She sleeps through the night and I am hearing so much info. about night time feedings or polycose. Can anyone provide me with some input if they have a child that eats about the same and what they have been told to do. We live in ND and so this syndrome is not well known in my area. I would appreciate any info. > On another note I am also wondering if another parent who has an RSS child with the box shape face is out there. This had been the one feature that threw our physicians off but after emailing with Jenn she told me about some other children with this same feature. I was hoping to see a photo (and I will share mine) to see some resemblence. > from desolate ND, > Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2004 Report Share Posted May 8, 2004 hi jane!! welcome to the group!! this is such a great group of parents and will offer you all the support you need as you find out more with your new dx. feel free to email me at jlcals2003@ yahoo.com (no space after @)!! good luck!! jodie (one of many on here) (nicholas-6 nonrss, christopher-3 rss 23lbs 33 " periactin, johnathon- 10m nonrss) Quote Link to comment Share on other sites More sharing options...
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