Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 hmmmm, I just don't buy the whole stress thing. I was reading through the patient IDF book and the adult stuff sounds familar. I am going to see a doc with Gwynn on Friday and may ask about getting tested. After all this stuff is genetic so it is entirely possible that we are immune deficient as well. I just refuse to believe it because my husband would just love that Gwynn being sick was only my screwy genes. LOL. anyways I feel your pain. The headaches started recently for me and I know get them every few days. I had this kind of problem for a short time when I was in the army about 5 years ago and also for a short while as a teenager. I get them sometimes when I wake up and I usually have to throw up before they stop. I have had a nasty cold since Gwynn got out of the hospital 5/30 and I can not shake it....it is getting worse and I am sure it is bronchitis or something now because I am having such a hard time breathing. Who has time for the doctor though seriously....between the 2 kids I have been at the ER with them 11 times this year and Gwynn has had 3 admissions and that is not counting all the well baby exams and check ups from the er visits.....ahhhgggggggggggggggg I AM SO TIRED OF THE DOCTOR!!! Then on top of this my ultra healthy husband who NEVER gets sick has been having major kidney issues/gastro stuff....He was throwing up for 2 months before he would see anyone. So at this point starting some long drawn out battle to get a diagnosis is not something I really want to deal with. But I am thrilled to not be alone....However I am not thrilled that you are suffering. We need to plan a mothers cruise....I could go for a Mai Thai and a nice long lounge poolside. cute cabana boys anyone.lol...hang in there. ~~ osdbmom <osdbmom@...> wrote: I just want to let you know that " stress " has been the catch all dx for: migraines daily headaches serious hair loss body aches stomach aches vomiting repeated infections chronic fatigue (not usually from my regular dr though) " Stress " is what a dr says when they have no other idea of what to tell you and they dont want to admit it. Thats my opinion anyway. BTW--TOO wierd!! I had to have my gall bladder out during pregnancy, and had repeated fevers then as well!! then, after years of dealing with illness, and my kids illnesses, and not coming up with any answers, and then I end up on depression meds, I feel like I am just proving THEIR point.........it was always in my head. But, hey, now I am depression meds, and still having the same problems. So I guess maybe that proves MY point? LOL valArie(just to distinguish the two of us) mom to Olivia Savannah Donovan Brennan(who is making me insane, someone please help me!!!The last month he has been so naughty, defiant, and just plain EMBARASSING, and the " normal " stuff with him isnt working.......I love the kid more than my own life, but all we do anymore, all day long, is discipline, correct, discipline, correct......uggh, I hope this stage ends soon!) 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. To unsubscribe -unsubscribegroups (DOT) To search group archives go to: /messages Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 <<As for your kids' medical issues, you're just a mom, not a doctor. Don't beat yourself up over this. You are doing the best you can and you are a terrific advocate for your kids! Hindsight is always 20/20 and moms tend to look back at the past and feel badly. We are all making the best choices for our kids with the knowledge available to us at any given time. We can't do more than that.>> You said it, ! If I had a time machine, there are things I would go back and do differently, knowing what I know now. However, I cannot change things that I have or haven't done in the past. All any of us can do is do the best with the knowledge that we have, and keep learning and advocating for precious kids! That said, is scheduled for and endoscopy and colonoscopy Oct. 2, much earlier in the a.m. than I care for, but at least we don't to wait too long to have it all done. I haven't broken the news to him yet. I think I will wait a little while longer. Any suggestions on how to break the news to him? Also, I have a question about this. He is supposed to do the liquid diet Saturday before with 2 doses of miralax that day, then a clear liquid diet on Sunday, no big deal (yet!!). He is supposed to play an 8:00p.m. game Saturday night. My instinct is to just forget about the game, but might it be possible for him to play? We have cancelled the rest of our plans for the weekend, which I have absolutely no problem with. Just wondering thoughts on this? I think, deep down, the game is out, but wanted to see if anyone had any ideas??? Thanks! Meg, mom to , 15yo, asthma, allergies, growth hormone def , 10yo, asthma, allergies, gut issues Annie, 8yo, asthma, allergies, reflux, and so far I *think* still hanging on to those pneumo antibodies .... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 I was diagnosed a year and half ago, similar to you I am geno.1a and stage 1 liver damage. I haven't done the tx yet. I wanted to try the holistic route first. I'm doing the Chinese herbs and some acupuncture. My ast/alt are normal. I feel pretty much back to normal. I am going to try and wait for a better medication to come out. You have lots of time to think about what to do. Western medicine is good for the diagnostics (testing) The Chinese have been dealing with hepatitis for decades. It is very prevalent there. You have to do what you feel is right, not your doctor. Try not to live your life in fear! Life is good! Breath................... Good luck, Steve ....... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2006 Report Share Posted September 18, 2006 well said steave,even through i cleared my doc said dont let up.keep doing what im doing.with alternative you do have a chance to clear.steve brewer <brewmon2003@...> wrote: I was diagnosed a year and half ago, similar to you I am geno.1a and stage 1 liver damage. I haven't done the tx yet. I wanted to try the holistic route first. I'm doing the Chinese herbs and some acupuncture. My ast/alt are normal. I feel pretty much back to normal. I am going to try and wait for a better medication to come out. You have lots of time to think about what to do. Western medicine is good for the diagnostics (testing) The Chinese have been dealing with hepatitis for decades. It is very prevalent there. You have to do what you feel is right, not your doctor. Try not to live your life in fear! Life is good! Breath................... Good luck, Steve ....... Tim Parsons knoxville,tn 37931 865-588-2465 x107 work www.knoxville1.com Stay in the know. Pulse on the new .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2006 Report Share Posted September 19, 2006 WOW Steve,, I LOVE sedona!!! wore out several pair of shorts on slide rock in high school.. and with my church group, we hikded down the canyon to havasue falls, it was amazing! THAT area is good for healing the soul! Amazing area,, I miss it so much! take care Steve, jaxsteve brewer <brewmon2003@...> wrote: hey Jax, All is well in my world. I just got back from Sedona, Flagstaff and the North rim of the Grand Canyon! It was an awsome experience! My first time up in that area. Its always good to be out in nature. It defintely helped heal my soul (and liver)! Peace out! Steve Jackie on <redjaxjm > wrote: Hi Steve Its great to hear from you as its been awhile! I hope that means that you are doing well and life is going GREAT! jaxsteve brewer <brewmon2003 > wrote: I was diagnosed a year and half ago, similar to you I am geno.1a and stage 1 liver damage. I haven't done the tx yet. I wanted to try the holistic route first. I'm doing the Chinese herbs and some acupuncture. My ast/alt are normal. I feel pretty much back to normal. I am going to try and wait for a better medication to come out. You have lots of time to think about what to do. Western medicine is good for the diagnostics (testing) The Chinese have been dealing with hepatitis for decades. It is very prevalent there. You have to do what you feel is right, not your doctor. Try not to live your life in fear! Life is good! Breath................... Good luck, Steve ....... Jackie Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2006 Report Share Posted September 20, 2006 Thanks for all the info. I saw my doctor today and I decided to start treatment. I begin on October 6th. Jax, You from Sedona? I live in Prescott Valley. Sedona has gotten so crowded but it's still beautiful. Valarie --- Jackie on <redjaxjm@...> wrote: > WOW Steve,, > I LOVE sedona!!! wore out several pair of shorts > on slide rock in high school.. and with my church > group, we hikded down the canyon to havasue falls, > it was amazing! THAT area is good for healing the > soul! > Amazing area,, I miss it so much! > take care Steve, > jax > steve brewer <brewmon2003@...> wrote: > hey Jax, > All is well in my world. I just got back from > Sedona, Flagstaff and the North rim of the Grand > Canyon! It was an awsome experience! My first time > up in that area. Its always good to be out in > nature. It defintely helped heal my soul (and > liver)! > Peace out! Steve > > Jackie on <redjaxjm@...> wrote: > Hi Steve > Its great to hear from you as its been awhile! I > hope that means that you are doing well and life is > going GREAT! > jax > > steve brewer <brewmon2003@...> wrote: > I was diagnosed a year and half ago, > similar to you I am geno.1a and stage 1 liver > damage. I haven't done the tx yet. I wanted to try > the holistic route first. I'm doing the Chinese > herbs and some acupuncture. My ast/alt are normal. I > feel pretty much back to normal. I am going to try > and wait for a better medication to come out. You > have lots of time to think about what to do. Western > medicine is good for the diagnostics (testing) The > Chinese have been dealing with hepatitis for > decades. It is very prevalent there. > You have to do what you feel is right, not > your doctor. Try not to live your life in fear! Life > is good! Breath................... > > Good luck, Steve ....... > > > > > > > Jackie > > > > > > > > > Jackie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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