Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 From Moria: >>Your writing is amazing to me -- the simplicity of it, and that you have maintained this hope in the face of caring for Zachary for years. I hope you document this with photos and a brief diary of progress. It would make an interesting book. As Naboru Muramoto said " the DNA knows the body " . I think a lot more is possible towards healing than anyone knows. J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 From Moria: >>Your writing is amazing to me -- the simplicity of it, and that you have maintained this hope in the face of caring for Zachary for years. I hope you document this with photos and a brief diary of progress. It would make an interesting book. As Naboru Muramoto said " the DNA knows the body " . I think a lot more is possible towards healing than anyone knows. J. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Zachary will go on Monday to get a g-tube inserted. I know at this point its the best thing for him, but I'm still having a difficult time dealing with it. He will have it placed by endoscopy and will be inpatient for about 3 days so the GI can get his feeds where she wants them to be. First he will have a tube, and the they will switch it out to a button in about 3 months. We are hoping this will help him put some weight, and build back some muscle. Zachary only has two days left of IV antibiotics left, and last night he was coughing and woke up today with his eyes swollen. With the attitude he has had today, I have a feeling we aren't beating this monster. With two weeks of vancomycin, and two weeks of rocephin, I think we need a visit to the ENT and sinus culture!! Another little sign of it being still there, is that after his dosage of med, his cheeks get nice and bright and red. I've seen this so many times before, but I'm trying very hard to deny that mommy instinct. I guess the good side of it, is that we will only have this weekend to worry about it, and then it can be taken care of by the drs next week. I hope! Different childrens hospitals...so it might be hard. Tomorrow I go to do the paperwork to do his hospital homebound info. I hope I'm not kidding myself, but I do have hopes that he will be able to return to school in August since he loves it so much. His immunologist told me that it may not be a option, but she will reevaluate him at the time. I'm praying the combination of the tube and the summer time will help build Zachary up enough so he can return. I also was shocked to hear that we will be doing periodical scans and blood testing for cancer with Zachary. They have lowered his flovent and rhinocort aqua dosages, and took him off elidel. She said he should not be on steriods unless its the only option. When I asked her why, she said that because of Zachary's situation, where he is now showing defects in his bone marrow, that we know have a higher risk of cancer and luekemia's. I know that this has been discussed on the list before, but I was under the impression that the risks of this were just a little higher with PID. I said that to the Immunologist, and she said that Zachary doesn't fall in the mold of the most common PID's. And we have to be very cautious with him. This has us worried. Its her opinion, and the opinion of the immunologists at the childrens hospital that we are dealing with more, and they ordered a battery of tests, along with chromosonal tests. Has anyone ever dealt with this kind of situation?? Well if you have gotten this far, thank you. ~MG (Relying only on Faith, and the Lord's Grace!!) & Zachary(5-7-99)monthly IVIG,IgG totaldeficiency,IgG1 & 4deficiency, IgA deficiency, suspected Pancreatic insufficency (adnormal tryspin test-treated with enzymes),Antibiody Dysfunction,Asthma,GERD,Chronic Sinus,Diarrhea and skin infections,FTT,Speechand Fine Motor Delays,central apnea,hypoapnea,bowel and urineincontience, and way too much more..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2005 Report Share Posted April 20, 2005 Dear MG I am so sorry for everything you and your son are going through. First I should start off and introduce myself since I am new to the group. My son is 5 years old (almost 6)and diagnosed with CVID after a two year sinus infection, cellulitis, that didn't improve no matter what the treatments. That was until we realized after a 8 day visit to Mayo Clinic that the reason he was so sick was because of a Primary immune disease, CVID IGG and subclass deficiency. He also has GERD, etc............ He started on monthly IVIG, then every three weeks, and last summer we had the choice to go to every two weeks or daily sub Q since he never had safe levels and was always getting sick right before his treatment was due. Since he got terrible side effects from the infusions such has joint pain, fatigue,illness, and headaches we opted for the daily IGG. It has been a life change. I have a close to normal son. He went from July to February with good IGG levels, no illness, no side effects besides injection site redness, constant IGG levels, no more peak and troughs! He also had no illnesses till February when he got pneumonia. When he is ill he needs the injections are twice a day for 14 days. He bounced back in three days, not a month like in the past and has been well since. He gains weight now, no longer borderline failure to thrive. He is hard to tell from his siblings and is my most healthy child. So any one with questions about sub Q injections feel free to ask, it has been a huge blessing for us. Our immunologist also told us he was at higher risk for blood and bone cancers, auto immune disorders, etc. and they check him every six months with a detailed physical and lab work. I try to take in each day with as much as we have to deal with and try not to worry about what else may appear, and I pray a lot. I am glad to be here, I wish there was no need for these groups and our families and loved ones could all be healthy, but since that isn't the reality, it is nice to have others to walk with down this road. I hope things get better for you and Zachary and that you can be comforted during this time. Take care Amy J PS Any one going to the National Primary Immune Deficency Foundations National Conference in Orlando this June? We are so excited to go. Zachary > >Zachary will go on Monday to get a g-tube inserted. I know at this point its the best thing for him, but I'm still having a difficult time dealing with it. He will have it placed by endoscopy and will be inpatient for about 3 days so the GI can get his feeds where she wants them to be. First he will have a tube, and the they will switch it out to a button in about 3 months. We are hoping this will help him put some weight, and build back some muscle. > >Zachary only has two days left of IV antibiotics left, and last night he was coughing and woke up today with his eyes swollen. With the attitude he has had today, I have a feeling we aren't beating this monster. With two weeks of vancomycin, and two weeks of rocephin, I think we need a visit to the ENT and sinus culture!! Another little sign of it being still there, is that after his dosage of med, his cheeks get nice and bright and red. I've seen this so many times before, but I'm trying very hard to deny that mommy instinct. I guess the good side of it, is that we will only have this weekend to worry about it, and then it can be taken care of by the drs next week. I hope! Different childrens hospitals...so it might be hard. > >Tomorrow I go to do the paperwork to do his hospital homebound info. I hope I'm not kidding myself, but I do have hopes that he will be able to return to school in August since he loves it so much. His immunologist told me that it may not be a option, but she will reevaluate him at the time. I'm praying the combination of the tube and the summer time will help build Zachary up enough so he can return. > >I also was shocked to hear that we will be doing periodical scans and blood testing for cancer with Zachary. They have lowered his flovent and rhinocort aqua dosages, and took him off elidel. She said he should not be on steriods unless its the only option. When I asked her why, she said that because of Zachary's situation, where he is now showing defects in his bone marrow, that we know have a higher risk of cancer and luekemia's. I know that this has been discussed on the list before, but I was under the impression that the risks of this were just a little higher with PID. I said that to the Immunologist, and she said that Zachary doesn't fall in the mold of the most common PID's. And we have to be very cautious with him. This has us worried. Its her opinion, and the opinion of the immunologists at the childrens hospital that we are dealing with more, and they ordered a battery of tests, along with chromosonal tests. Has anyone ever dealt with this kind of situation?? > >Well if you have gotten this far, thank you. ~MG (Relying only on Faith, and the Lord's Grace!!) & Zachary(5-7-99)monthly IVIG,IgG totaldeficiency,IgG1 & 4deficiency, IgA deficiency, suspected Pancreatic insufficency (adnormal tryspin test-treated with enzymes),Antibiody Dysfunction,Asthma,GERD,Chronic Sinus,Diarrhea and skin infections,FTT,Speechand Fine Motor Delays,central apnea,hypoapnea,bowel and urineincontience, and way too much more..... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Dear -sounds great. We are making it a family trip and are staying Thursday through Thursday. I am very excited. I have gone to local conferences and have really enjoyed them. My email is ajunes@... Take care Amy Zachary >> >> >> >> >> >> > >> >> >Zachary will go on Monday to get a g-tube inserted. I know at this point >> >> its the best thing for him, but I'm still having a difficult time dealing >> >> with it. He will have it placed by endoscopy and will be inpatient for about >> >> 3 days so the GI can get his feeds where she wants them to be. First he will >> >> have a tube, and the they will switch it out to a button in about 3 months. >> >> We are hoping this will help him put some weight, and build back some >> >> muscle. >> >> > >> >> >Zachary only has two days left of IV antibiotics left, and last night he >> >> was coughing and woke up today with his eyes swollen. With the attitude he >> >> has had today, I have a feeling we aren't beating this monster. With two >> >> weeks of vancomycin, and two weeks of rocephin, I think we need a visit to >> >> the ENT and sinus culture!! Another little sign of it being still there, is >> >> that after his dosage of med, his cheeks get nice and bright and red. I've >> >> seen this so many times before, but I'm trying very hard to deny that mommy >> >> instinct. I guess the good side of it, is that we will only have this >> >> weekend to worry about it, and then it can be taken care of by the drs next >> >> week. I hope! Different childrens hospitals...so it might be hard. >> >> > >> >> >Tomorrow I go to do the paperwork to do his hospital homebound info. I hope >> >> I'm not kidding myself, but I do have hopes that he will be able to return >> >> to school in August since he loves it so much. His immunologist told me >> >> that it may not be a option, but she will reevaluate him at the time. I'm >> >> praying the combination of the tube and the summer time will help build >> >> Zachary up enough so he can return. >> >> > >> >> >I also was shocked to hear that we will be doing periodical scans and blood >> >> testing for cancer with Zachary. They have lowered his flovent and rhinocort >> >> aqua dosages, and took him off elidel. She said he should not be on steriods >> >> unless its the only option. When I asked her why, she said that because of >> >> Zachary's situation, where he is now showing defects in his bone marrow, >> >> that we know have a higher risk of cancer and luekemia's. I know that this >> >> has been discussed on the list before, but I was under the impression that >> >> the risks of this were just a little higher with PID. I said that to the >> >> Immunologist, and she said that Zachary doesn't fall in the mold of the most >> >> common PID's. And we have to be very cautious with him. This has us worried. >> >> Its her opinion, and the opinion of the immunologists at the childrens >> >> hospital that we are dealing with more, and they ordered a battery of tests, >> >> along with chromosonal tests. Has anyone ever dealt with this kind of >> >> situation?? >> >> > >> >> >Well if you have gotten this far, thank you. ~MG (Relying only on Faith, >> >> and the Lord's Grace!!) & Zachary(5-7-99)monthly IVIG,IgG >> >> totaldeficiency,IgG1 & 4deficiency, IgA deficiency, suspected Pancreatic >> >> insufficency (adnormal tryspin test-treated with enzymes),Antibiody >> >> Dysfunction,Asthma,GERD,Chronic Sinus,Diarrhea and skin >> >> infections,FTT,Speechand Fine Motor Delays,central apnea,hypoapnea,bowel and >> >> urineincontience, and way too much more..... >> >> > >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Dear -sounds great. We are making it a family trip and are staying Thursday through Thursday. I am very excited. I have gone to local conferences and have really enjoyed them. My email is ajunes@... Take care Amy Zachary >> >> >> >> >> >> > >> >> >Zachary will go on Monday to get a g-tube inserted. I know at this point >> >> its the best thing for him, but I'm still having a difficult time dealing >> >> with it. He will have it placed by endoscopy and will be inpatient for about >> >> 3 days so the GI can get his feeds where she wants them to be. First he will >> >> have a tube, and the they will switch it out to a button in about 3 months. >> >> We are hoping this will help him put some weight, and build back some >> >> muscle. >> >> > >> >> >Zachary only has two days left of IV antibiotics left, and last night he >> >> was coughing and woke up today with his eyes swollen. With the attitude he >> >> has had today, I have a feeling we aren't beating this monster. With two >> >> weeks of vancomycin, and two weeks of rocephin, I think we need a visit to >> >> the ENT and sinus culture!! Another little sign of it being still there, is >> >> that after his dosage of med, his cheeks get nice and bright and red. I've >> >> seen this so many times before, but I'm trying very hard to deny that mommy >> >> instinct. I guess the good side of it, is that we will only have this >> >> weekend to worry about it, and then it can be taken care of by the drs next >> >> week. I hope! Different childrens hospitals...so it might be hard. >> >> > >> >> >Tomorrow I go to do the paperwork to do his hospital homebound info. I hope >> >> I'm not kidding myself, but I do have hopes that he will be able to return >> >> to school in August since he loves it so much. His immunologist told me >> >> that it may not be a option, but she will reevaluate him at the time. I'm >> >> praying the combination of the tube and the summer time will help build >> >> Zachary up enough so he can return. >> >> > >> >> >I also was shocked to hear that we will be doing periodical scans and blood >> >> testing for cancer with Zachary. They have lowered his flovent and rhinocort >> >> aqua dosages, and took him off elidel. She said he should not be on steriods >> >> unless its the only option. When I asked her why, she said that because of >> >> Zachary's situation, where he is now showing defects in his bone marrow, >> >> that we know have a higher risk of cancer and luekemia's. I know that this >> >> has been discussed on the list before, but I was under the impression that >> >> the risks of this were just a little higher with PID. I said that to the >> >> Immunologist, and she said that Zachary doesn't fall in the mold of the most >> >> common PID's. And we have to be very cautious with him. This has us worried. >> >> Its her opinion, and the opinion of the immunologists at the childrens >> >> hospital that we are dealing with more, and they ordered a battery of tests, >> >> along with chromosonal tests. Has anyone ever dealt with this kind of >> >> situation?? >> >> > >> >> >Well if you have gotten this far, thank you. ~MG (Relying only on Faith, >> >> and the Lord's Grace!!) & Zachary(5-7-99)monthly IVIG,IgG >> >> totaldeficiency,IgG1 & 4deficiency, IgA deficiency, suspected Pancreatic >> >> insufficency (adnormal tryspin test-treated with enzymes),Antibiody >> >> Dysfunction,Asthma,GERD,Chronic Sinus,Diarrhea and skin >> >> infections,FTT,Speechand Fine Motor Delays,central apnea,hypoapnea,bowel and >> >> urineincontience, and way too much more..... >> >> > >> >> > Quote Link to comment Share on other sites More sharing options...
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