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Medical Forum / Diseases and Disorders / Arthritis / February 2006Way OTP: Pediatrics health ngs?
Hi Gang, I know this is completely off topic, but I am wondering if any of you know of any good pediatric health support groups??? My 7 week old niece has not been doing well health wise and has probably already had far more bloodwork and testing than most people ever endure in a life time. She has quite severe jaundice, her bilirubin and liver enzymes are running way, way, high and the doctors as yet have not been able to figure out what is going on with her. Her liver is definitely inflamed and mildly enlarged and they have ruled out blockages in her liver and gall bladder. They have also ruled out tumors in those areas. They said it is possible that it is a virus of some sort attacking her liver, but they will just watch her now for the next couple of weeks. If things don't get any better, they will then start running more tests on her thyroid and pituitary glands. Poor little thing, only 7 weeks old and having to go through all of this, not to mention the stress the whole family is enduring. They have even talked to my sister about liver transplant and or blood transfusions! Yikes, scary stuff and hard not to worry about all the bad things that it could be and fear in all of our minds at losing this little one. Don't think any of us can endure another loss of anykind at this point!!! So, if any of you know of any good pediatric health support groups that my sister could check into or if any of you know of anyone who has been through similar stuff, could you let me know! I sure would appreciate it!!! THANKS!!! Donna G I don't have information for you but I wanted to let you know that you have my heart and prayers, Vickie B. no info on newsgroups, but is there a GI EXPERT (and i do stress EXPERT) doing the liver, etc testing? i ask because there are possible conditions that other docs don't always think to look for. of course, no 7 week old should be going through all of this. she's in my prayers (as are all the other prayer requests here - my hands are too limited now to respond as much as i'd like)  SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare >no info on newsgroups, but is there a GI EXPERT (and i do stress EXPERT) >doing the liver, etc testing? i ask because there are possible conditions >that other docs don't always think to look for. of course, no 7 week old >should be going through all of this. I agree with the above. And I'm sure this has all been considered, but was she premature or ill at birth and on prolonged TPN or having antibiotics like Amphotericin B? Those do a number on the liver. --- Joan Joan, No TPN or antibiotics or anything at birth. She was a normal healthy baby as far as we all knew at birth. She took to breastfeeding quite easily and has continued, thus far, to eat fine and has continued to gain weight fine. Donna G Thanks all for the prayers! As always, they are greatly appreciated!!! Joan, no, Sara was not born premature. In fact, she was born via c-section right on the day that had been planned all along for her to be born on. She showed no signs of illness at all when she was first born and if was only after she was home for a few weeks that she started turning kind of yellowish and acting a bit more sluggish. She is being followed by the pediatric GI doctors at the University of Michigan, which is a good group to be followed by. The only thing that affected her at birth, is the fact that my sister is Rh negative, which requires the baby to get an injection when it is born and my sister gets an injection as well, as most people are Rh positive. This has not been a factor with her previous children however and the doctors don't seem to think it is the cause of her problems now. The doctors are a little baffled with all of the tests they have run and not being able to find the cause of what is going on. They continue to watch her closely, though and we continue to pray they can get this all sorted out soon!!! Thanks, Kelly, for googling ngs. I will try doing that a little later. The doctors called my sister yesterday and have started Sara on phenobarbital. Seems like an awfully potent med for a little tiny baby, but apparently this med has something that can often help clear some forms of bilirubin and because Sara's numbers are running so high, this med will also hopefully prevent her from having any seizures due to the high numbers of her liver enzymes. Thanks again, all for your input and if you think of anything else, please let me know!!! Donna G "Newsgroup Spambuster" <ngspambuster@webtv.net> wrote in message > Thanks all for the prayers! As always, they are greatly appreciated!!! Donna, You certainly have my prayers along with all the other ones! What a horrible thing to go through. When my nephew, now, healthy 21 yo, was a baby, he had to go through about 3-4 surgeries in his first week or two. He was born with a T-fistula, where the esophagus and the trachea don't have anything to seperate them. Of course, very dangerous. He came out just fine, but I do know the fear of one so young being so sick. One thing that you haven't mentioned is a possiblity of Hepatitis, especially if no one else has it, like the Mom. I have Hep-C, myself and even though I haven't gone through treatment, it was a shock to me. (I got it from myex-husband, who, to my everlasting astonishment was shooting drugs, without me knowing, and I got stuck by a needle, years ago. Before they knew about Hep-C. One of the reasons he's now my ex. <wry grin>) I'm pretty sure your sweetie won't have this, and I'm thinking the docs already tested for it, but you never know if they believe she's too young, and have merely negated the tests as she's only 7 weeks old. But it is one thing to look at, that I know of. I pray it's not, but then again, no matter what it is, it's better to know, and have a game plan, rather than worrying and not knowing. Hopes and prayers here, that your niece is soon on the road to recovery and that all things work out well, for everyone. Sincerely, MaryBeth Donna, I did a search on Google for 'support for parents of sick babies' and it came back with hundreds of links. You might try that. I hope this little sweetie gets some help soon. Hugs, Kelly C. > Hi Gang, > [quoted text clipped - 29 lines] > > Donna G Sending Good Thoughts, {{{{Sara & family}}}} GramPaHugs, Alex, > Hi Gang, > My 7 week old niece has not been doing well health wise and has [quoted text clipped - 4 lines] > > Donna G Signature**************************************************** * Love radiating from 45.10n x 93.30w M/SP Mn * http://home.mn.rr.com/apbiii * http://grampahugs.is-a-geek.org/ * http://www.goldenmist.org **************************************************** Donna, so very sorry to hear about your niece. Will surely be praying for her and the doctors, and all her family. Gwen > Hi Gang, > [quoted text clipped - 29 lines] > > Donna G oh, heavens! poor little one. i'm no help on the peds' support group question. but prayers are definitelt on the way. dumb question. really dumb, i suppose. might your neice's mother haven taken an otc something for a headache, or something minor, that is potentially hard on the liver in high doses? i mean, maybe she took a normal adult dose that concentrated in her milk and for a baby would be a high dose? i know. just a really dumb thought. groping for ideas. sorry. i hope they find out quickly what the cause is and correct it quickly. this has to be so hard on your entire family. ((((((((((((((donnag and family)))))))))))))))) kate Hi Gang, I know this is completely off topic, but I am wondering if any of you know of any good pediatric health support groups??? My 7 week old niece has not been doing well health wise and has probably already had far more bloodwork and testing than most people ever endure in a life time. She has quite severe jaundice, her bilirubin and liver enzymes are running way, way, high and the doctors as yet have not been able to figure out what is going on with her. Her liver is definitely inflamed and mildly enlarged and they have ruled out blockages in her liver and gall bladder. They have also ruled out tumors in those areas. They said it is possible that it is a virus of some sort attacking her liver, but they will just watch her now for the next couple of weeks. If things don't get any better, they will then start running more tests on her thyroid and pituitary glands. Poor little thing, only 7 weeks old and having to go through all of this, not to mention the stress the whole family is enduring. They have even talked to my sister about liver transplant and or blood transfusions! Yikes, scary stuff and hard not to worry about all the bad things that it could be and fear in all of our minds at losing this little one. Don't think any of us can endure another loss of anykind at this point!!! So, if any of you know of any good pediatric health support groups that my sister could check into or if any of you know of anyone who has been through similar stuff, could you let me know! I sure would appreciate it!!! THANKS!!! Donna G Kate, Most OTC stuff doesn't cross into breastmilk in high doses. I had to research this while breastfeeding because of my own health stuff. Ex: You can take up to 2400mg of Ibuprofen over 24 hours in 600 mg doses and the level in milk is just barely detectable. You have to get into rx stuff or take doses way above the recommended level to get into a problem that would affect the baby so significantly. Adelle > oh, heavens! poor little one. i'm no help on the peds' support group > question. but prayers are definitelt on the way. [quoted text clipped - 46 lines] > > Donna G thank you, so much, for enlightening me (and others) with the answer to my question, adelle. you never cease to amaze me, with the depth and breadth of your knowledge. much appreciated. kate Kate, Most OTC stuff doesn't cross into breastmilk in high doses. I had to research this while breastfeeding because of my own health stuff. Ex: You can take up to 2400mg of Ibuprofen over 24 hours in 600 mg doses and the level in milk is just barely detectable. You have to get into rx stuff or take doses way above the recommended level to get into a problem that would affect the baby so significantly. Adelle > oh, heavens! poor little one. i'm no help on the peds' support group > question. but prayers are definitelt on the way. [quoted text clipped - 46 lines] > > Donna G Mile wide but only inch deep, hon. Actually, breastfeeding is something I know quite a bit about - I started training to be a La Leche League Leader but dropped the attempt because of differences in philosophy. Just when I was starting training, the organization decided to get back to the basics of their philosophy and became more adamant about requiring leaders to have stayed home with their babies for x amount of time and not instigating weaning. In these economic times, I thought that was too restrictive and I got disillusioned with the group, which is kinda sad. I really do love helping new Moms. And I personally experienced many of the odd difficulties in breastfeeding. Women who have these unusual experiences really need to hear from women who have come through to the other side. Adelle > thank you, so much, for enlightening me (and others) with the answer to my > question, adelle. you never cease to amaze me, with the depth and breadth [quoted text clipped - 67 lines] >> >> Donna G >Actually, breastfeeding is something I know quite a bit about - I started >training to be a La Leche League Leader but dropped the attempt because of >differences in philosophy. Just when I was starting training, the >organization decided to get back to the basics of their philosophy and >became more adamant about requiring leaders to have stayed home with their >babies for x amount of time and not instigating weaning. Sadly, that is true for so many of these organizations, Adelle. When I worked in NICU I saw a lot of breast-feeding mums, and also members of the La Leche League. Some were adament that there was only one way to do things, and I understand that in the normal nursery (non NICU) babes, that mothers could be made to feel guilty for not trying to breast feed. The bottom line is, some just can't. I remember one mother who really wanted to or felt she should, not sure which, but she had no milk, period. That sort of situation certainly puts a damper on breast feeding. :-) --- Joan > On Tue, 31 Jan 2006 11:10:11 -0500, "Adelle" <adNOstavis@SPAMcomcast.net> > wrote [quoted text clipped - 20 lines] > a > damper on breast feeding. :-) So sad for the mom and so frustrating as an advocate. When Mom isn't producing milk, it's a very fine line between making sure that all avenues have been investigated (is she not producing the needed hormones, etc.) and 'being pushy.' Some advocates cross the line without meaning to. But when you believe you should try every possible recourse, it's hard to see you are at the end of options or that the new mom may not be in an emotional place where they can handle the more invasive or technological things. Breastfeeding is supposed to be this easy, natural thing. When it isn't, it's hard to see which roads are appropriate and which aren't. But in LLL's defense, new mom's are just so sensitive and unsure of themselves, that you can be as careful and tactful as possible and still somebody will interpret that as trying to make the new mom feel guilty. It's especially true when the family doesn't support the decision to breastfeed because: it's not as modern, formula is just as good, ruins their dream of sitting in a rocker giving the baby a bottle, thinks mom shouldn't be so tied down, has the cultural bias of breasts as sex objects and not as functional parts of the body, etc.). Oops, ventured onto the soapbox. Will stop now. Adelle > So sad for the mom and so frustrating as an advocate. When Mom isn't > producing milk, it's a very fine line between making sure that all avenues [quoted text clipped - 18 lines] > > Adelle Oh my well said........ We need more women to get on your box. I only have one thought to add. The people that are against breast feeding,,,,, do not have the babies welfare at heart. NOTHING is better for a child than to be breast feed by its mother in a timely manor. IMO,,,,, the same people that are against breast feeding would just as soon the child was murdered in any month of the mother being pregnant. Harv >> So sad for the mom and so frustrating as an advocate. When Mom isn't >> producing milk, it's a very fine line between making sure that all [quoted text clipped - 28 lines] > > Harv (ummm) Some of us pro breastfeeding people, are also pro choice. I'd love to see a world where every conception will produce a viable life and every pregnant woman is in a situation where she is able to care for the child. But that is not reality. After holding my friend, 18 weeks pregnant, as she sobbed because the ultrasounds and amnio were unambiguous - her child had multiple deformities and would not survive long upon birth, I will never judge anyone for a later term abortion. She could not handle continuing to carry a baby she knew would die after only hours of life. By the time you can find out these things and then go through all the emotional stuff to make a decision, you fall into the 'late term' category. Adelle >> So sad for the mom and so frustrating as an advocate. When Mom isn't >> producing milk, it's a very fine line between making sure that all [quoted text clipped - 28 lines] > > Harv (ummm) Some of us pro breastfeeding people, are also pro choice. I'd love to see a world where every conception will produce a viable life and every pregnant woman is in a situation where she is able to care for the child. But that is not reality. After holding my friend, 18 weeks pregnant, as she sobbed because the ultrasounds and amnio were unambiguous - her child had multiple deformities and would not survive long upon birth, I will never judge anyone for a later term abortion. She could not handle continuing to carry a baby she knew would die after only hours of life. By the time you can find out these things and then go through all the emotional stuff to make a decision, you fall into the 'late term' category. Adelle now that was well said! i'd like to see a world where every man, who questions pro-choice, would be pregnant and have to deal with every heart-wrenching situation that pregnant women throughout history have had to face. kate >>> So sad for the mom and so frustrating as an advocate. When Mom isn't >>> producing milk, it's a very fine line between making sure that all [quoted text clipped - 56 lines] > > kate Kate and Adelle,,,,, Anyone that thinks that there are not good reasons to have an abortion of deformed children does not live in the real world. Your vote, your part in what takes place in this world is between you and your God. I will not argue with anyone that is smarter than what the bible says or chooses to make decisions as the God would will have their own life to answer for. I will say no more about it. Harv >>>> So sad for the mom and so frustrating as an advocate. When Mom isn't >>>> producing milk, it's a very fine line between making sure that all [quoted text clipped - 70 lines] > own life to answer for. I will say no more about it. > Harv Its not a matter of smarter. But you are right, its between the individual and God. But our two religions diverge on this point. Judaism does not adhere to the concept of life beginning at conception. In Judaism, preserving the health of an existent life takes precedence over one which has not yet born breath. And this includes mental health issues as well as physical health. And by the time we find out what God really wants on this issue, we will not be in a state to communicate it to anyone else. Adelle Hi, Donna, Sending prayers for the whole family. Have they found the issue yet? I did a quick search of jaundice in newborns and found a list of things which can cause severe jaundice that doesn't respond to phototherapy. Here is what I found at a Yahoo site http://health.yahoo.com/ency/healthwise/tp5725;_ylt=As4Nb6Kbg91UHDMtCmCGMbrJg7MF #tp5725-sec: "Blood type incompatibility or other blood problems. Differences in blood type between a mother and her newborn, as well as certain other conditions, can cause the newborn's red blood cells to be destroyed. Bilirubin is released when red blood cells are destroyed. a.. Disorders of the digestive system. Any condition that interferes with the digestive system's ability to process and eliminate bilirubin may result in jaundice. Some of these conditions include disorders that are present at birth, including problems with the liver and bile ducts and blockage of the bowel. a.. Infection. Serious kidney infections, hepatitis, toxoplasmosis, and rubella are infectious diseases that can lead to jaundice" I hope they have found an easily treatable cause and your niece is on the road to a full recovery! Adelle > Hi Gang, > [quoted text clipped - 29 lines] > > Donna G Jaundice occurs from an imbalance between the production and elimination of bilirubin.Bilirubin is a substance produced by the breakdown of red blood cells and hemoglobin, the protein in red blood cells that carries oxygen from the lungs to the rest of the body. Jaundice produces yellowing of the skin and the white part of the eyes. This yellow coloring usually develops in newborns between 1 and 5 days after birth and shows up first in the face and chest. If the yellow tint in your infant's skin becomes more intense after 3 days of age, notify your health professional. Treatment of jaundice is phototherapy: Phototherapy is sometimes needed, which involves exposing the baby to a type of fluorescent light. As the light is absorbed into the skin, the bilirubin changes so it becomes more easily excreted in the stool and urine. U can get the information about the treatment and medical tests required in jaundice, by visitng this site: http://www.medical-health-care-information.com/encyclopedia/j/Jaundice-in-Newbor ns.asp Prayers still coming for you and your family. I am really praying they find an answer for Sara and that all will be ok. Keep us posted if you can. I know you still don't feel up to it, but I would appreciate it. Thinking of you always. SignatureHugs, prayers, good thoughts, Warm fuzzies, TLC, and Love Squirrely Jo > > Hi Gang, [quoted text clipped - 30 lines] > > Donna G Jaundice occurs from an imbalance between the production and elimination of bilirubin.Bilirubin is a substance produced by the breakdown of red blood cells and hemoglobin, the protein in red blood cells that carries oxygen from the lungs to the rest of the body. Jaundice produces yellowing of the skin and the white part of the eyes. This yellow coloring usually develops in newborns between 1 and 5 days after birth and shows up first in the face and chest. If the yellow tint in your infant's skin becomes more intense after 3 days of age, notify your health professional. Treatment of jaundice is phototherapy: Phototherapy is sometimes needed, which involves exposing the baby to a type of fluorescent light. As the light is absorbed into the skin, the bilirubin changes so it becomes more easily excreted in the stool and urine. I am praying for her good health. U can get the information about the treatment and medical tests required in jaundice, by visitng this site:It will become helpful to u. http://www.medical-health-care-information.com/encyclopedia/j/Jaundice-in-Newbor ns.asp Thanks every one for all of your input and suggestions for my little niece Sara. Unfortunately, all of your suggestions have already been looked into and they still have not been able to figure out why Sara's liver is enlarged and inflammed. They have done many tests looking for blockages, tumors, etc. For now, they have decided to watch her and see if her liver enzymes and bilirubin counts come down any. If they don't show any improvements over the next few weeks, then they will do a liver biopsy and also some tests to look for pituitary gland problems and thryoid gland issues. Sara seems to be eating ok and gaining weight ok, so for this we are all thankful. I guess time will tell, and we just keep praying it won't be anything too serious!!! Thanks again for all of your input and prayers they are greatly appreciated!!! Donna G |
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