Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Hi Everyone, I want to ask for some advise (again!!!). As you all know Jack has been having problems with constipation, diarrhoea and colicky pains for quite a while now. For the past week or so he has been having a lot of pain in his tummy which comes and goes and sometimes lasts for up to an hour. I was giving Jack prune juice in his breakfast cereal but he is now refusing to eat it. He saw his GP on Friday( his paed is on holiday) and he has advised us to increase the lactulose from 10mls x2 daily to 15mls x2 daily and to give him 5mls of laxoberol every 2 days if his bowels are not moving much. I don't really want to have to give him strong laxatives as often as every two days but I don't seem to have much option. He has an out-patients appt. on 25th May to find out about the g-tube. Everything seems to take so long over here. It will be 3mths since they first talked about the g-tube when we go to this appt. and then IF they decide to do it it will be another few weeks before the op. I get so frustrated!!! Anyway, I asked Jack's GP about something to help the colicky pains but he was reluctant to give us anything as muscle relaxants could affect his heart and gripe water is not suitable due to his kidney problems. The only thing I can give him is paracetamol and I also put him in the bath which seems to help. When he has the pains he won't even let me touch his tummy so I can't massage it. Has anyone got any ideas on how I can help ease his pain or anything that I can give him to help. I feel so helpless when he is in pain , in fact at one point last week I was beginning to think it was his kidney stones playing up but if it was them the pain would be continuous wouldn't it? Elaine mum to Elise(7yrs on Wed.) & Jack(21mths) CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 1999 Report Share Posted May 3, 1999 Elaine, I used to give my babies watered down camomile tea (lukewarm) in a bottle, which helped their colic. Barbra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 Elaine, Sorry to hear Jack is having so much colicky pain, it must be very hard on you. Kennedy is teething right now and I'm ready to pack it in! The only advice I can give which probably won't help much would be to try and get a warm towel or something like that and get it wrapped around his belly. My MIL makes " magic bags " with oats in them <nothing that could burst and burn you at all>, and something like that warmed up and laid over his belly might help. Wishing you luck, Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 > My > MIL makes " magic bags " with oats in them <nothing that could burst and > burn you at all>, and something like that warmed up and laid over his > belly might help. My grandmother used to sew little pillows (about 12 x 12) out of a soft flannel or cotten and warm them in the oven for that.. you could also use the microwave.. Casey charge@... minnow@... Mom to Dawn 20, Ken 9 ADHD, and 7 CHARGE. Cobb California ICQ UIN# 728514 AIM Buddy List: ZeeCasey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 Usin' anise seed to make tea ALWAYS worked for my grandmother, my mother and I. (I love home remedies). It tastes a little like licorice. Pati PKA Vision Marietta, GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 ,,Casey, Patti & Barbra, Thank you all for your suggestions to help ease the colicky pains. I will try the heat treatment tonight and see if it helps. , Thanks for your reply on the kidney stones. This really seems to be dragging on with Jack and no-one seems too concerned about it. The last time I spoke to his paed she told me that the nephrologist in Glasgow would be happy to see Jack and do further tests. I got a letter from her yesterday stating that she would contact Jack's consultant here and get her to do further tests to have his calcium status assessed and further metabolic studies. Could they not have decided this 2mths ago when the problem was first detected? I feel as if they are wasting so much time and I will be so angry if it is Jack's kidney stones playing up and they have not managed to do these tests yet. It is worrying to think what would happen if I just sat back and waited for them to do something about it. I know they are busy and Jack is not the only patient they have but to me he is the most important wee boy in the world and I hate to see him in pain. Elaine mum to Elise(6yrs) & Jack(21mths)CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 1999 Report Share Posted May 4, 1999 Elaine, I hope Jack is feeling better soon and you get to KNOW for sure what it is soon. <kidney stones or otherwise> I know exactly what you mean about knowing that Jack isn't their only patient, but he's your ONLY patient, so of course things are going to be the MOST important for him! These guys should have their own personal everything eh? doc, ped, OT, PT..etc,etc...and ones that we moms all like! Boy, that'd sure be a miracle! Mom to Kennedy 14 mos old CHARGEr, 9, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir's homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 >, >Thanks for your reply on the kidney stones. This really seems to be dragging >on with Jack and no-one seems too concerned about it. The last time I spoke >to his paed she told me that the nephrologist in Glasgow would be happy to >see Jack and do further tests. I got a letter from her yesterday stating that >she would contact Jack's consultant here and get her to do further tests to >have his calcium status assessed and further metabolic studies. Could they >not have decided this 2mths ago when the problem was first detected? I feel >as if they are wasting so much time and I will be so angry if it is Jack's >kidney stones playing up and they have not managed to do these tests yet. It >is worrying to think what would happen if I just sat back and waited for them >to do something about it. I know they are busy and Jack is not the only >patient they have but to me he is the most important wee boy in the world and >I hate to see him in pain. > >Elaine mum to Elise(6yrs) & Jack(21mths)CHaRGE >Dumfries,Scotland > >------------------------------------------------------------------------ >Want to learn more about your list users? >http://www.onelist.com >Now you can with our new User Survey Tool - see homepage for details >------------------------------------------------------------------------ >4th International CHARGE Syndrome Conference, Houston, Texas, July >23-25, 1999. >For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 1999 Report Share Posted May 9, 1999 Elaine, Hunter has had some severe tummy pains in the past as well. His Pediatrician prescribes Levsin and it works wonders for the pain. It can cause drowsiness but at least your child's not in pain. I'm not sure of the repercussions with the heart. Hope this helps. Also, Hunter had SEVERE diarrhea for about 6 months. The diarrhea was very acidic and every time he would sneeze or cough or practically move he would " squirt " . He literally had blisters that would bleed incessantly all over his bottom. I felt HORRIBLE!!!! Nothing was working, we tried EVERYTHING from dabbing maalox (a liquid anti-acid)all over his bottom, using a blow dryer to dry it and then putting pure cornstarch on; to placing shower curtain liners all over the living room floor and just letting him crawl around naked to try and air it out! And we tried all of the ointments in between. He was on numerous different kinds of formula including: Progestimil, Nutramigen and Soy and none of them helped. Finally, I just switched him to regular Enfamil with Iron and instantly he no longer had diarrhea. I don't know ---- but it worked for us. Good Luck!!! Doran Mom to Hunter(14mo. CHARGEr) Orlando, Florida jlhdoran@... Quote Link to comment Share on other sites More sharing options...
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