Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Dear Helen; I am sorry that Matt had such a rough time. Usually the I.V. techs are better at accessing the viens. My daughter's last IV was like a pin cushion. Matt sounds like he is a real good patient. It amaizes me sometimes how much they tolerate. Is somthing irritating his lower intestine that he is passing mucous? Take care our next IVIG is thursday. Take care and get some rest. regards annette mom to cvid,asthmatic >From: HBDOEM@... >Reply-To: PedPIDonelist >To: PEDPIDonelist >Subject: a few ideas please >Date: Wed, 26 May 1999 19:23:11 EDT > >From: HBDOEM@... > >Helen Mom to Matt(CVID)13yo > >Well, we have had better IVIG days. I learned with finality to assert >myself. >Our usual nurse Louisa was there and a new nurse Peg. Peg is older so I >figured she has good experience. WRONG. She tried the first sit. No good. >Went through the other side of the vien. Now Matt has a lovely swollen >purple >top of the hand. After much discussion, calming of Matt and my nerves >Louisa >offered to get Moira the IV tech up. Because of the rt hand selling the >left >hand had to be used. We never use the left hand because the veins are small >and roll. Well Moira got it in fine. Matt thanked her and away we went. >That >is till almost all but 5grms were infused. You guessed it. It began to >infultrate. Louisa tried flushing to see how bad and it was clear IV #2 >would >have to be replaced. Matt was near hysteria and ready to walk out. Cannot >blaim him. Louisa had success on the left wrist after a little wiggling of >the needle. This last one done without EMLA. Matt stated the EMLA is not >working so we got the patches to put on at home before we leave for the >hospital. So NEVER again will I that position. Louisa or Moira only...if >possible. >And yes, Matt will get at least one more dose in before the " vacation " . We >are scheduled for June. If he has continued to do well then we will discuss >stopping. My platform is that if he stays well on IVIG and we know that >when >he gets another sinus infection we are going to do sinus surgery why take >him >off the IVIG before 6 mos of full dose. And that will take us into the >fall/winter and he will not come off then. > >So here is were I need the ideas. Matt has been do well. Except that he >has >been having intermitant diarrhea. The first time I didn't think much. Well >then it happened again about 10 days later. Well on Monday he had two bouts >with cramps. Both shortely after eating. Today he has again had two bouts. >The last after eating and I had him give me a sample. Thinking 1) >Salmonella??still hanging around 2) something else that he is sortof >fighting >off. The good news is it does not have a nasty oder. (For those of you not >experienced with Salmonella the odor is like rotine eggs..go figure.) >However >it is mainly mucous with what might be a little tinge of blood. Sorry for >the >detail. Yet I know we all have experience different aspects of these >illnesses and have wonderful clinical experience. >My concern is that dispite the acidophylis he gets daily his intestinal >flora >is a mess. I appreciate your time to read this and any offer of info any of >you may have. >Thank you >Good luck to all the upcoming IVIG pumpkins >Helen > >------------------------------------------------------------------------ >ONElist: where real people with real interests get connected. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Boy Helen, I bet you're really supresticious now....Sorry Matt had a bad infusion. About the diarreah, has he been checked for hplyori? Zach's currently being retested via stool antigen test. I found out from Zac's Dr. that the web site Ursula refered us to is not accurate( I guess it's put out by an individual and the Dr. are saying that it's a scam to make money. If you request information from them, they'll charge $30.00 for info that's avail free from other relaible sources such as the CDC). They said that there's a lot of wrong information on it. Instead they refered me to call 1-888-MY-ULCER. or via web http://www.cdc.gov/ncidod/aip/hpylori.htm And about the flora, the only other thing that I know is garlic, although it is not actually flora, it helps keep the bad bacteria & parasites down so that the good bacteria can get going again. Hope this helps, Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 , Are you referring to Dr. Barry Marshall's site? www.hpylori.com? Ursula Re: a few ideas please Boy Helen, I bet you're really supresticious now....Sorry Matt had a bad infusion. About the diarreah, has he been checked for hplyori? Zach's currently being retested via stool antigen test. I found out from Zac's Dr. that the web site Ursula refered us to is not accurate( I guess it's put out by an individual and the Dr. are saying that it's a scam to make money. If you request information from them, they'll charge $30.00 for info that's avail free from other relaible sources such as the CDC). They said that there's a lot of wrong information on it. Instead they refered me to call 1-888-MY-ULCER. or via web http://www.cdc.gov/ncidod/aip/hpylori.htm And about the flora, the only other thing that I know is garlic, although it is not actually flora, it helps keep the bad bacteria & parasites down so that the good bacteria can get going again. Hope this helps, Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, ------------------------------------------------------------------------ Where do some of the Internet's largest email lists reside? http://www.onelist.com At ONElist - the most scalable and reliable service on the Internet. ------------------------------------------------------------------------ This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Urs, Yes, sorry I forgot to mention the site. Of course, no offense to you, but I thought that you all would like to know my GI's opinion. I guess he's(Dr. Marshall) started a foundation and it's been considered somewhat hokey by his piers. Our Dr. said that some of the stuff is right, but some is just wrong. He just advised me that we really need to be careful about getting info from the web since any joe can sey up a site. And again, this is just the opinion of my GI. Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, chronic sinusitis, IVIG, At 11:00 PM 5/26/99 -0400, you wrote: > > >, > >Are you referring to Dr. Barry Marshall's site? www.hpylori.com? > >Ursula > > Re: a few ideas please > > > > >Boy Helen, > >I bet you're really supresticious now....Sorry Matt had a bad infusion. >About the diarreah, has he been checked for hplyori? > >Zach's currently being retested via stool antigen test. I found out from >Zac's Dr. that the web site Ursula refered us to is not accurate( I guess >it's put out by an individual and the Dr. are saying that it's a scam to >make money. If you request information from them, they'll charge $30.00 for >info that's avail free from other relaible sources such as the CDC). They >said that there's a lot of wrong information on it. Instead they refered me >to call 1-888-MY-ULCER. or via web > >http://www.cdc.gov/ncidod/aip/hpylori.htm > >And about the flora, the only other thing that I know is garlic, although it >is not actually flora, it helps keep the bad bacteria & parasites down so >that the good bacteria can get going again. > >Hope this helps, > > >Wife to Tom, Mom to 6 yr Zach, ???(don't know the specific type) PID, GERD, >chronic sinusitis, IVIG, > > >------------------------------------------------------------------------ >Where do some of the Internet's largest email lists reside? >http://www.onelist.com >At ONElist - the most scalable and reliable service on the Internet. >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. > > >------------------------------------------------------------------------ >ONElist: bringing the world together. >http://www.onelist.com >Join a new list today! >------------------------------------------------------------------------ >This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Dear Helen, My son is now taking an over the counter product called Lactose Bacillus. The pharmacist has to order it and it has to be kept in the fridge. I really think it has helped Chris. His normal flora was wiped out of his intestines this winter due to about 10 weeks of IV antibiotics every 3 days. He got a massive yeast infection, but that has since cleared up nicely....... Have you ever heard of Numby? It is a new product that numbs the area of the IV site. My son Jake uses it and it really works well.......I know our hospital is using it as a trial and they said it was really expensive to use, but it was worth it for my little guy........... I hope Matt feels better soon and he does not have too many side reactions from the IVIG... Sue W Mom to Jake and Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 MEACH9960@... wrote: > > From: MEACH9960@... > > Dear Helen, > > My son is now taking an over the counter product called Lactose > Bacillus. The pharmacist has to order it and it has to be kept in the > fridge. I really think it has helped Chris. His normal flora was wiped out > of his intestines this winter due to about 10 weeks of IV antibiotics every 3 > days. He got a massive yeast infection, but that has since cleared up > nicely....... > > Have you ever heard of Numby? It is a new product that numbs the area of the > IV site. My son Jake uses it and it really works well.......I know our > hospital is using it as a trial and they said it was really expensive to use, > but it was worth it for my little guy........... > > I hope Matt feels better soon and he does not have too many side reactions > from the IVIG... > > Sue W Mom to Jake and Chris > > ------------------------------------------------------------------------ > Looking for a new hobby? Want to make a new friend? > http://www.onelist.com > Come join one of over 150,000 e-mail communities at ONElist! > ------------------------------------------------------------------------ > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. I really dont know how these little guys do it. They have far more courage than i do. We opted for a porta cath for kelsey b/c she is very needle phobic and we needed to reduce as much stress in her life as possible. It is scarry and she got an infection in the site a few days after it was placed. She was on iv antibiotics for about a week and we have had no problems since. Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 MEACH9960@... wrote: > > From: MEACH9960@... > > Dear Helen, > > My son is now taking an over the counter product called Lactose > Bacillus. The pharmacist has to order it and it has to be kept in the > fridge. I really think it has helped Chris. His normal flora was wiped out > of his intestines this winter due to about 10 weeks of IV antibiotics every 3 > days. He got a massive yeast infection, but that has since cleared up > nicely....... > > Have you ever heard of Numby? It is a new product that numbs the area of the > IV site. My son Jake uses it and it really works well.......I know our > hospital is using it as a trial and they said it was really expensive to use, > but it was worth it for my little guy........... > > I hope Matt feels better soon and he does not have too many side reactions > from the IVIG... > > Sue W Mom to Jake and Chris > > ------------------------------------------------------------------------ > Looking for a new hobby? Want to make a new friend? > http://www.onelist.com > Come join one of over 150,000 e-mail communities at ONElist! > ------------------------------------------------------------------------ > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Does anyone have the IDF 1800#? I lost it and i would like to register. Amber Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Dear Amber, has a port, but absolutely refuses to get one. He knows that I will have to restrict his activities a little more. So he has to deal with all the pokes. Sometimes it takes 4 sticks to get a good vein. The extra fluids seem to help alleviate that problem for him. Another wonderful idea that I learned from this great group. I thank the dear lord that I found this group. They really have some wonderful ideas and insights.... Sue W Mom to Jake and Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Dear Amber, Well, he is a 10 year old very active boy. He could not play any kind of contact sports like soccer or football. He plays basketball as well and I think it would irritate him when he shoots the ball. has an infuse a port in his chest and he plays baseball just fine. I made a protective shirt with cotton to go over the site incase he gets hit with a baseball. Other then that I can't think of anything else that might be a problem. I am probably over protective of them, but I have seen the damage that little boys can do. Jake ran into a fence at school playing on the football on the playground. They are just a little (a lot) rougher then girls. He is also at the embarrassed about his body stage in life. He puts on weight from the prednisone and his face swells. He just hates that. I know he does not want anything that anyone can see. He tries so hard to be a normal kid......... The few times that we went swimming someone always asks what his port is. Doesn't seem to bother him, but then again he is only 6. Sorry to have rambled on. I wish he would get one. I hate watching them poke him so many times. It breaks my heart............... Sue W Mom to Jake and Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 MEACH9960@... wrote: > > From: MEACH9960@... > > Dear Amber, > > has a port, but absolutely refuses to get one. He knows > that I will have to restrict his activities a little more. So he has to deal > with all the pokes. Sometimes it takes 4 sticks to get a good vein. The > extra fluids seem to help alleviate that problem for him. Another wonderful > idea that I learned from this great group. I thank the dear lord that I > found this group. They really have some wonderful ideas and insights.... > > Sue W Mom to Jake and Chris > > ------------------------------------------------------------------------ > ONElist members are using Shared Files in great ways! > http://www.onelist.com > Are you? If not, see our homepage for details. > ------------------------------------------------------------------------ > This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. Just curious why you would have to reduce his activity more? Kelsey has a porta cath which is totally covered by skin and we have been told that it doesnt limit her at all. I know tgere are other types like a central line which would have to be more careful with. Just curious if you were told something different. We were told that she can even bang it and it wont do any harm. Amber Quote Link to comment Share on other sites More sharing options...
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