Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Hi Pattie & Pat & everyone, Janelle is not home. Joe and I are doing shifts at the hospital. Her pneumonia is resolving nicely and she came off the vent 36 hours ago and is breathing fast and her heart rate is up but she is holding her own. The hard part is being able to tell is she is withdrawing from the sedatives. She is because she vomited and had some diarrhea ( which finally got the barium out). Janelle developed a lot of shaking movements while on the vent. Neurology has done two EEG's and two cat scans that do not show epilepsy but the neurology attendings are absolutely not in agreement as to what is going on with her. They will repeat an EEG and then do an MRI to see the basal ganglion of the brain. Yesterday was very upsetting because I thought the movements were from the versed which she has been off two days and she was still shaking so much with no one home if you understand me. I asked the doctors and they said her sedation level is still pretty high and she is going through withdrawal. They are still unsure about the movements she is happening. first they hope it goes away after all the sedatives are out of her body, second hypothesis is that a virus started this whole thing and attacked her central nervous system and again hope it resolves itself after she gets completely better. That's is all the info we have on her now. The doctors are going to call Dr H if after the MRI and EEG Janelle is still a mystery to see if she has an idea it will be a few days yet. She has gone through three blood transfusions during this and I hope we will not need any more. The hernia finally showed itself and the surgeon is not in a hurry to operate since Janelle is so weak and not recovered from this illness yet and she has had two other surgeries in this area before. I personally do not think we will be able to get her up to feeds and keep her from vomiting without going in and fixing it with surgery. They are also going to repeat the upper GI to see if she still refluxes after 10 cc's go into her stomach while she is not sedated. Time will tell. I have to get going now. I am Taking n down to see her and then Joe and n will go to the Museum of Science and Industry which is VERY close to the hospital. We are going to be switching Janelle's doctors to this hospital. The pediatric doc community is all changing around her lately and a lot of them are going to this hospital. Dr H was concerned that Janelle's care was no longer at one place and we were too. Thanks for asking how she was doing. She is still a long way from coming home. -- Jovanovich ****Please note - our NEW e-mail address laura@... " shulsbosch@...> Reply-To: RSS-Support Date: Fri, 07 Feb 2003 07:04:29 -0000 To: RSS-Support Subject: Re: a newbie with lots of questions... Resent-From: laura@... Resent-To: bugwilder@... Resent-Date: Fri, 7 Feb 2003 01:07:40 -0600 When Darcy had the GH test he was also admitted (his endo was aware of potential blood sugar problems, and they 'normally' do it at our hospital as an outpatient) - and yes his blood sugar dropped significantly into the 3rd hour of fasting. Make sure they keep an eye on it. {{HUGS}} Steph > > Hello, > > > > I'm a new member here, been reading posts for the last couple of > weeks. I found you all through Steph, who is on another list I'm > on. She's been suggesting I join this list for several months now, > so I finally got my act together to do so. > > > > I will describe in some detail our daughter's history..she has not > been diagnosed with RSS,; we're still in the investigation process. > But, if anything sounds familiar or if anyone has any insights after > reading our story, I sure would appreciate your thoughts. > > > > We have a daughter who was IUGR and who is not experiencing catch- > up growth. Her IUGR was due to my Syndrome. I was on twice > daily injections of heparin for the entire pregnancy. She was always > a small kid in utero, but typically 35%tile until late second > trimester when her size kept trailing off. She was born, very > healthy at 36.5 weeks, weighing 3 lbs 4 oz, 15 inches long and > asymmetrical. > > > > She had an initial slow start to her weight gain while in the NICU, > but then really hit the ground running. In her first six months, > while she didn't catch up to her peers, she was growing like a weed > and climbing ever closer to actually being on the growth curve. At > about six months, her growth slowed as we expected it might as she > got more mobile and was sleeping less. For her first year, her > weight and height have been proportionate. > > > > At about a year, her weight has seemed to plateau. She has been > hovering between 13 and 15 lbs now for the past six months (she will > be 18 months at the end of February). She's continuing to gain a bit > in height and thus is skinny for height. She stands about 28 inches > tall. She is still significantly below the normal curve for both > weight and height. > > > > In all other respects she's a very healthy kiddo...when she gets a > cold, she can kick it fairly fast. She is hitting her developmental > milestones for fine and gross motor and cognitive skills right on > time or ahead of the marker (especially cognitive and language). > She's always been a fabulous eater. > > > > Since she started dropping in her proportions and since she hadn't > experienced catchpp growth yet, we decided to see a peds > endocrinologist about a month ago. His clinical observations, based > on examining her and seeing her medical records, were that he > anticipated that she was amongst the small percentage of IUGR kids > whose growth pattern got set so early in utero that she would always > be a slow grower. He figured her hormone levels were probably fine, > based on our food logs it appeared she was eating plenty to gain > weight. His initial recommendation was potential/elective GH to help > boost her size. > > > > He ran a big panel of labs, including blood chemistry and insulin > growth factor. He also ordered a bone age x-ray. The first > electrolyte panel came back showing extremely low sodium, potassium > and chloride...like in the freak-out low range. She was immediately > re-tested and also had urine tested for sodium spillage...all of > these tests came back in normal range. So, we don't know if the > first set were lab error or what. > > > > Her bone age is 3 months (her chronological age is 17 months). And > her insulin growth factor was low, but I don't recall the number. > The endo suspects now that she has growth hormone deficiency and we > next do the clomine(?) test to see what info that yields. I also > suspect she might be hypoglycemic, b/c she gets completely wigged out > when she gets hungry, needs to eat about every 1.5 to 2 hours, can't > sleep through the night yet without eating, sweats profusely. I plan > to ask to have her urine keytones checked to see what info that gives > us. > > > > Also, we've kept food logs for the nutritionist assigned to Gemma's > case. She's very happy with Gemma's diet and has said that she's > eating more calories than her weight would typically demand. So, > this leads her and the endo to suspect that either she's not able to > utilize what she's eating or that she's not producing growth hormone > or much of it. > > > > I've been living it seems on the MAGIC foundation website and > others, reading all I can about growth issues, including growth > hormone deficiency and RSS. The more I read, the more confused I > get, cuz she just doesn't seem to fit the profile for either of these > two things very cleanly. She doesn't seem to have many of the > characteristics of RSS, but then there are things that make sense to > me with RSS..same thing with growth hormone deficiency. > > > > I know we're still at the stage of trying to put all the pieces > together and that could take awhile. I really like the endo we're > seeing...his specialty area is kids with IUGR and on-going growth > issues...I've done my homework on him and feel like he knows his > stuff...which is reassuring. Our regular family doc is wonderful > too...she has a child with growth issues and is really supportive and > on the ball. But, I felt like it would be so helpful to talk with > others whose kids are dealing with growth issues to get some " real > life " perspective on this. > > > > Any insights or information that folks could share would be > wonderfully appreciated. > > > > Thanks so much for reading all of this!! > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Dear , Just want you to know that we will be praying for Janelle and for you guys! I will make sure and let Paisley and Storm know to pray also! Paisley enjoyed playing with her so much at the convention! I'm sure she will remember! Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 , I was so hoping that you would say that Janelle is home. I'm sorry she is still so sick and having so many problems. Please know that hundreds of us are praying for her recovery. She is a great little girl. I can't wait to see her this summer! Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 , I was so hoping that you would say that Janelle is home. I'm sorry she is still so sick and having so many problems. Please know that hundreds of us are praying for her recovery. She is a great little girl. I can't wait to see her this summer! Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Hi , We are sorry to hear that Janelle is still in the hospital. We were hoping that she had come home. We are glad to hear that she is at least moving in the right direction. Hopefully the doctors will be able to figure out what is going on. Our thoughts are with you, Judith, Steve, (RSS) and (non RSS) 3 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Please let us know how things are going. I keep Janelle in my prayers. We are going through a rough time here right now (long story) and I set up a prayer table on my diningroom table, after reading all these emails tonight, instead of remembering you all in my weekly prayers, I'm going to add them to the nightly ones. You take care......I hope you have some family around to support you guys or some friends at least. It must be just awful. You take care, my thoughts and prayers and well wishes are with you all. Debby Re: a newbie with lots of questions... > Resent-From: laura@... > Resent-To: bugwilder@... > Resent-Date: Fri, 7 Feb 2003 01:07:40 -0600 > > > When Darcy had the GH test he was also admitted (his endo was aware > of potential blood sugar problems, and they 'normally' do it at our > hospital as an outpatient) - and yes his blood sugar dropped > significantly into the 3rd hour of fasting. Make sure they keep an > eye on it. > > {{HUGS}} > Steph > > > > > Hello, > > > > > > I'm a new member here, been reading posts for the last couple of > > weeks. I found you all through Steph, who is on another list I'm > > on. She's been suggesting I join this list for several months now, > > so I finally got my act together to do so. > > > > > > I will describe in some detail our daughter's history..she has > not > > been diagnosed with RSS,; we're still in the investigation > process. > > But, if anything sounds familiar or if anyone has any insights > after > > reading our story, I sure would appreciate your thoughts. > > > > > > We have a daughter who was IUGR and who is not experiencing catch- > > up growth. Her IUGR was due to my Syndrome. I was on twice > > daily injections of heparin for the entire pregnancy. She was > always > > a small kid in utero, but typically 35%tile until late second > > trimester when her size kept trailing off. She was born, very > > healthy at 36.5 weeks, weighing 3 lbs 4 oz, 15 inches long and > > asymmetrical. > > > > > > She had an initial slow start to her weight gain while in the > NICU, > > but then really hit the ground running. In her first six months, > > while she didn't catch up to her peers, she was growing like a weed > > and climbing ever closer to actually being on the growth curve. At > > about six months, her growth slowed as we expected it might as she > > got more mobile and was sleeping less. For her first year, her > > weight and height have been proportionate. > > > > > > At about a year, her weight has seemed to plateau. She has been > > hovering between 13 and 15 lbs now for the past six months (she > will > > be 18 months at the end of February). She's continuing to gain a > bit > > in height and thus is skinny for height. She stands about 28 > inches > > tall. She is still significantly below the normal curve for both > > weight and height. > > > > > > In all other respects she's a very healthy kiddo...when she gets > a > > cold, she can kick it fairly fast. She is hitting her > developmental > > milestones for fine and gross motor and cognitive skills right on > > time or ahead of the marker (especially cognitive and language). > > She's always been a fabulous eater. > > > > > > Since she started dropping in her proportions and since she > hadn't > > experienced catchpp growth yet, we decided to see a peds > > endocrinologist about a month ago. His clinical observations, > based > > on examining her and seeing her medical records, were that he > > anticipated that she was amongst the small percentage of IUGR kids > > whose growth pattern got set so early in utero that she would > always > > be a slow grower. He figured her hormone levels were probably > fine, > > based on our food logs it appeared she was eating plenty to gain > > weight. His initial recommendation was potential/elective GH to > help > > boost her size. > > > > > > He ran a big panel of labs, including blood chemistry and insulin > > growth factor. He also ordered a bone age x-ray. The first > > electrolyte panel came back showing extremely low sodium, potassium > > and chloride...like in the freak-out low range. She was > immediately > > re-tested and also had urine tested for sodium spillage...all of > > these tests came back in normal range. So, we don't know if the > > first set were lab error or what. > > > > > > Her bone age is 3 months (her chronological age is 17 months). > And > > her insulin growth factor was low, but I don't recall the number. > > The endo suspects now that she has growth hormone deficiency and we > > next do the clomine(?) test to see what info that yields. I also > > suspect she might be hypoglycemic, b/c she gets completely wigged > out > > when she gets hungry, needs to eat about every 1.5 to 2 hours, > can't > > sleep through the night yet without eating, sweats profusely. I > plan > > to ask to have her urine keytones checked to see what info that > gives > > us. > > > > > > Also, we've kept food logs for the nutritionist assigned to > Gemma's > > case. She's very happy with Gemma's diet and has said that she's > > eating more calories than her weight would typically demand. So, > > this leads her and the endo to suspect that either she's not able > to > > utilize what she's eating or that she's not producing growth > hormone > > or much of it. > > > > > > I've been living it seems on the MAGIC foundation website and > > others, reading all I can about growth issues, including growth > > hormone deficiency and RSS. The more I read, the more confused I > > get, cuz she just doesn't seem to fit the profile for either of > these > > two things very cleanly. She doesn't seem to have many of the > > characteristics of RSS, but then there are things that make sense > to > > me with RSS..same thing with growth hormone deficiency. > > > > > > I know we're still at the stage of trying to put all the pieces > > together and that could take awhile. I really like the endo we're > > seeing...his specialty area is kids with IUGR and on-going growth > > issues...I've done my homework on him and feel like he knows his > > stuff...which is reassuring. Our regular family doc is wonderful > > too...she has a child with growth issues and is really supportive > and > > on the ball. But, I felt like it would be so helpful to talk with > > others whose kids are dealing with growth issues to get some " real > > life " perspective on this. > > > > > > Any insights or information that folks could share would be > > wonderfully appreciated. > > > > > > Thanks so much for reading all of this!! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Thank you for your prayers!:-) -- Jovanovich ****Please note - our NEW e-mail address laura@... " heraldjcb@...> Reply-To: RSS-Support Date: Fri, 07 Feb 2003 18:26:12 -0000 To: RSS-Support Subject: Re: Janelle update Resent-From: laura@... Resent-To: bugwilder@... Resent-Date: Fri, 7 Feb 2003 12:29:22 -0600 Hi , We are sorry to hear that Janelle is still in the hospital. We were hoping that she had come home. We are glad to hear that she is at least moving in the right direction. Hopefully the doctors will be able to figure out what is going on. Our thoughts are with you, Judith, Steve, (RSS) and (non RSS) 3 year old twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2003 Report Share Posted February 7, 2003 Thank you Debby:-) I feel better tonight just reading all the wonderful thoughts and prayers that are going out for Janelle. I do have wonderful friends and family and they are helping to keep us going in our day to day life so that one of us ( Joe or myself) can be with Janelle at all times. Thank you -- Jovanovich ****Please note - our NEW e-mail address laura@... Reply-To: RSS-Support Date: Fri, 7 Feb 2003 20:52:54 -0500 To: RSS-Support > Subject: Re: Janelle update Resent-From: laura@... Resent-To: bugwilder@... Resent-Date: Fri, 7 Feb 2003 19:59:54 -0600 Please let us know how things are going. I keep Janelle in my prayers. We are going through a rough time here right now (long story) and I set up a prayer table on my diningroom table, after reading all these emails tonight, instead of remembering you all in my weekly prayers, I'm going to add them to the nightly ones. You take care......I hope you have some family around to support you guys or some friends at least. It must be just awful. You take care, my thoughts and prayers and well wishes are with you all. Debby Re: a newbie with lots of questions... > Resent-From: laura@... > Resent-To: bugwilder@... > Resent-Date: Fri, 7 Feb 2003 01:07:40 -0600 > > > When Darcy had the GH test he was also admitted (his endo was aware > of potential blood sugar problems, and they 'normally' do it at our > hospital as an outpatient) - and yes his blood sugar dropped > significantly into the 3rd hour of fasting. Make sure they keep an > eye on it. > > {{HUGS}} > Steph > > > > > Hello, > > > > > > I'm a new member here, been reading posts for the last couple of > > weeks. I found you all through Steph, who is on another list I'm > > on. She's been suggesting I join this list for several months now, > > so I finally got my act together to do so. > > > > > > I will describe in some detail our daughter's history..she has > not > > been diagnosed with RSS,; we're still in the investigation > process. > > But, if anything sounds familiar or if anyone has any insights > after > > reading our story, I sure would appreciate your thoughts. > > > > > > We have a daughter who was IUGR and who is not experiencing catch- > > up growth. Her IUGR was due to my Syndrome. I was on twice > > daily injections of heparin for the entire pregnancy. She was > always > > a small kid in utero, but typically 35%tile until late second > > trimester when her size kept trailing off. She was born, very > > healthy at 36.5 weeks, weighing 3 lbs 4 oz, 15 inches long and > > asymmetrical. > > > > > > She had an initial slow start to her weight gain while in the > NICU, > > but then really hit the ground running. In her first six months, > > while she didn't catch up to her peers, she was growing like a weed > > and climbing ever closer to actually being on the growth curve. At > > about six months, her growth slowed as we expected it might as she > > got more mobile and was sleeping less. For her first year, her > > weight and height have been proportionate. > > > > > > At about a year, her weight has seemed to plateau. She has been > > hovering between 13 and 15 lbs now for the past six months (she > will > > be 18 months at the end of February). She's continuing to gain a > bit > > in height and thus is skinny for height. She stands about 28 > inches > > tall. She is still significantly below the normal curve for both > > weight and height. > > > > > > In all other respects she's a very healthy kiddo...when she gets > a > > cold, she can kick it fairly fast. She is hitting her > developmental > > milestones for fine and gross motor and cognitive skills right on > > time or ahead of the marker (especially cognitive and language). > > She's always been a fabulous eater. > > > > > > Since she started dropping in her proportions and since she > hadn't > > experienced catchpp growth yet, we decided to see a peds > > endocrinologist about a month ago. His clinical observations, > based > > on examining her and seeing her medical records, were that he > > anticipated that she was amongst the small percentage of IUGR kids > > whose growth pattern got set so early in utero that she would > always > > be a slow grower. He figured her hormone levels were probably > fine, > > based on our food logs it appeared she was eating plenty to gain > > weight. His initial recommendation was potential/elective GH to > help > > boost her size. > > > > > > He ran a big panel of labs, including blood chemistry and insulin > > growth factor. He also ordered a bone age x-ray. The first > > electrolyte panel came back showing extremely low sodium, potassium > > and chloride...like in the freak-out low range. She was > immediately > > re-tested and also had urine tested for sodium spillage...all of > > these tests came back in normal range. So, we don't know if the > > first set were lab error or what. > > > > > > Her bone age is 3 months (her chronological age is 17 months). > And > > her insulin growth factor was low, but I don't recall the number. > > The endo suspects now that she has growth hormone deficiency and we > > next do the clomine(?) test to see what info that yields. I also > > suspect she might be hypoglycemic, b/c she gets completely wigged > out > > when she gets hungry, needs to eat about every 1.5 to 2 hours, > can't > > sleep through the night yet without eating, sweats profusely. I > plan > > to ask to have her urine keytones checked to see what info that > gives > > us. > > > > > > Also, we've kept food logs for the nutritionist assigned to > Gemma's > > case. She's very happy with Gemma's diet and has said that she's > > eating more calories than her weight would typically demand. So, > > this leads her and the endo to suspect that either she's not able > to > > utilize what she's eating or that she's not producing growth > hormone > > or much of it. > > > > > > I've been living it seems on the MAGIC foundation website and > > others, reading all I can about growth issues, including growth > > hormone deficiency and RSS. The more I read, the more confused I > > get, cuz she just doesn't seem to fit the profile for either of > these > > two things very cleanly. She doesn't seem to have many of the > > characteristics of RSS, but then there are things that make sense > to > > me with RSS..same thing with growth hormone deficiency. > > > > > > I know we're still at the stage of trying to put all the pieces > > together and that could take awhile. I really like the endo we're > > seeing...his specialty area is kids with IUGR and on-going growth > > issues...I've done my homework on him and feel like he knows his > > stuff...which is reassuring. Our regular family doc is wonderful > > too...she has a child with growth issues and is really supportive > and > > on the ball. But, I felt like it would be so helpful to talk with > > others whose kids are dealing with growth issues to get some " real > > life " perspective on this. > > > > > > Any insights or information that folks could share would be > > wonderfully appreciated. > > > > > > Thanks so much for reading all of this!! > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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