Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Destiny, Usually allergies....they are often referred to by physicians as " allergic shiners " . Hope this helps.... Autumn (mom to Mark Cd5-Cd19 PID/KYle GERD, ASA,A1A) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2000 Report Share Posted February 22, 2000 Destiny: Both of my boys have the vlack eyes--or allergic shiners. has them year round due to severe allergies, while gets them whenever he starts to battle an infection. Right now we are waiting to see if his latest cold turns into another bout of sinusitis. The eyes look dark and shadowed underneath--like blask eyes from allergies or from sinus congestion orstuff like that. I can't remember, does Tucker have a history of sinus infections or allergy symptoms? With , this is a clue that something isn't going right. -mom to , dysgammaglobulinemia; ALL-in remission (no subject) > From: KYPNTUCK@... > > Hi everyone! I am really praying that things get better for all of us! > > : I am so happy for you!!!! I hope things continue in the direction! > > I have what is probably a dumb question! What is the cause of the " black > eyes " ? Tucker has them almost all the time!? > > Destiny > > ------------------------------------------------------------------------ > Get what you deserve with NextCard Visa! Rates as low as 2.9% > Intro or 9.9% Fixed APR, online balance transfers, Rewards Points, > no hidden fees, and much more! Get NextCard today and get the > credit youdeserve! Apply now! Get your NextCard Visa at: > http://click./1/912/2/_/_/_/951188700/ > ------------------------------------------------------------------------ > > 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 February 11, 2001 Report Share Posted February 11, 2001 HI Barbie.....welcome to the group. My 10 year old son is on lifelong IVIG, I say that based on the rare type of PID that he has. The physicians know that at this point IVIG will be lifelong. My son will most likely never benefit from future medical treatments based on the fact that there are only 7 boys in the world with his type of PID (the discovering immunologist told us that no physician would ever take such a chance/risk with so few kids, the risk of Gene therapy and other medical trials might prove to be fatal to children with Cd5-Cd19 PID's, Mark's type). I remain hopeful and optimistic for future medical advancements however....the same physician told us that we would never find the " needle in the haystack " and exactly one year after saying that, that physician found the needle in the haystack!!! We do not have a port a cath (I am not in favor of them). We do in and out IV's without Emla (my son's choice) and we do them at home. There are many side affects and there are other risks, as well. Mark usually gets a headache, dizziness, and an overall feeling of tired and malaise. The best thing that you can do is to make sure that your son has a good immunologist. It sounds like you have done a lot of the homework....it can be frustrating and yes, often times it is long before a diagnosis is found. The Immune Deficiency Foundation, IPOPI and Jeffery Modell Foundation all have websites that offer great medical information. Every parent is different (just like every PID patient is different) and each has their own view points on how to deal with PID, some have no choice or very little choice as in the case of SCID children. We do not isolate our child (unless, he is quite ill). We let him live his life to the fullest and as normal as possible with quality verses quantity being the key focus. I do not think that there are any " wrong " answers. We also make sure that he indeed has infections (we do nasal smears, throat swabs, and cultures and sensitivities) before treating with antibiotics as these kids will most likely require much, much more then a non-pid child and we don't want to exhaust our antibiotic choices/use for the future. Plus, this way it helps our physician see exactly how many " true " infections our son has verses just guessing and treating them medically inappropriate. Dealing with chronic illness is not easy and some days I find more difficult. We try to live each day, one day at a time. Each PID patient is different and what works for one may not work for another. Sometimes it is a matter of trial and error. I hope that you will find support and understanding here. A warm welcome to the other newcomers, as well. Autumn (Mom to Mark Cd5-Cd19 PID and ) (no subject) > Hi my name is Barbie, I am a Pediatric nurse who also has a son with an > immune disorder. . Lucas had IGA deficiency and Hyper IGE initially that > progressed into ?CVID but has hypogammaglobulinemia along with other > undiagnosed concerns. He has been on IVIG since July of 2000 and has had some > improvement. He also has persistent Asthma, ? bowel problems, behavioral? > Sensory Integration Dysfunction etc. etc. etc. My greatest frustration is > feeling like I am not getting all the answers and there is not an overall > plan. (May have something to do with feelling out of control. ) It has taken > years to get what we have at this time and a tremendous amount of pushing to > get appropriate care in a timely manner. > Does anyone know where I can get a list of side effects from IVIG?. I have > been hearing about the headaches and Lucas does have them. He has also > spiked a fever during the infusion. Do you all have Port a caths or are you > doing in and out IVs.? > Is anyone doing it at home? Is everyone using Emla at the site for pain? For > all of you veterens of this site my question must seem basic but I am looking > for ideas to improve our q 3 week infusion. How long have you been told that > your child will need IVIG? In numerous sources I am told that CVID begins in > the 2nd and 3rd decade and my doctor hesitates to label Lucas based on this > litereature but I got his medical records and saw it in writing after I had > already determined it in my mind. Being a nurse is helpful but also can make > you feel quite helpless as your child is suffering. I find it difficult to > separate my emotions and my clinical skills . Alot of questions for a first > time posting. I would love to see a page where we divide up the problems we > see our gets going through and have a l ist of input on how to get through > the problem or treatment, . Example : Behavioral prblems. Explainng chronic > illness to our children. Doing an IV or IVIG infusion for the newcomers Side > effects, how to prepare the child etc. I have certain things I do but would > love to hear others ideas. BARBIE ( mother of 10 , duplicate renal > system with gr4 reflux, Liver cyst, Chronic sinusitis, bowel disorder, Lucas, > 5 CVID, sinusitis, severe asthma, bowel disorder, Sensory integration > dysfunction, behavioral problems ) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 welcome to the list barbie. my name is carol i have a six year old son josh that also has CVID,Astma,intestinal problems, candidas in aphagus, steroid dependent, growth def,ulsors,heart problems,sinus,lung disease, the list goes on. We went through a lot when he was born and he has went through at least 14 surgerys from stomach to throat to fundo,port, you name it. We are on ivig and have been for the last three years. We were told he would get this for life and we would deal with the problems as they came up. Which that is what we do. I try not to make a big deal about his disability and he seems to not either. The doctor told us good thing he doesn't think he is disabled. He is all boy and i let him enjoy his life how he wants it because you never know when our lord will take them. Well i will close for now. carol. At 10:51 AM 2/11/01 -0500, you wrote: > Hi my name is Barbie, I am a Pediatric nurse who also has a son with an >immune disorder. . Lucas had IGA deficiency and Hyper IGE initially that >progressed into ?CVID but has hypogammaglobulinemia along with other >undiagnosed concerns. He has been on IVIG since July of 2000 and has had some >improvement. He also has persistent Asthma, ? bowel problems, behavioral? >Sensory Integration Dysfunction etc. etc. etc. My greatest frustration is >feeling like I am not getting all the answers and there is not an overall >plan. (May have something to do with feelling out of control. ) It has taken >years to get what we have at this time and a tremendous amount of pushing to >get appropriate care in a timely manner. >Does anyone know where I can get a list of side effects from IVIG?. I have >been hearing about the headaches and Lucas does have them. He has also >spiked a fever during the infusion. Do you all have Port a caths or are you >doing in and out IVs.? >Is anyone doing it at home? Is everyone using Emla at the site for pain? For >all of you veterens of this site my question must seem basic but I am looking >for ideas to improve our q 3 week infusion. How long have you been told that >your child will need IVIG? In numerous sources I am told that CVID begins in >the 2nd and 3rd decade and my doctor hesitates to label Lucas based on this >litereature but I got his medical records and saw it in writing after I had >already determined it in my mind. Being a nurse is helpful but also can make >you feel quite helpless as your child is suffering. I find it difficult to >separate my emotions and my clinical skills . Alot of questions for a first >time posting. I would love to see a page where we divide up the problems we >see our gets going through and have a l ist of input on how to get through >the problem or treatment, . Example : Behavioral prblems. Explainng chronic >illness to our children. Doing an IV or IVIG infusion for the newcomers Side >effects, how to prepare the child etc. I have certain things I do but would >love to hear others ideas. BARBIE ( mother of 10 , duplicate renal >system with gr4 reflux, Liver cyst, Chronic sinusitis, bowel disorder, Lucas, >5 CVID, sinusitis, severe asthma, bowel disorder, Sensory integration >dysfunction, behavioral problems ) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2009 Report Share Posted June 8, 2009 How can I obtain a copy of a dvd by J . Thank you Quote Link to comment Share on other sites More sharing options...
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