Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Pam, I don't know what has been discussed so far so excuse me if this has been mentioned. My son also has had two MRI's and two EEG's. They did not revealed anything. What did reveal something was the endoscopy. Unfortunately, this test was not a test the doctors thought to do. I had to have a non-HMO doctor do it. I was amazed the gastro found a problem with yeast because I had already had my son on colostrum and probiotics for over a year. He is much calmer and not as hyper when his yeast is under control. Also, another test that I will probably have doctor Volpe or Dr do or look at is the herpes or roseola virus (sp). I need to find my print of previous postings regarding this. What I remember is that if a child has had a rash and then later temporarily lost the use of his right leg, it could be due to a virus. This virus could still be in the body causing problems. My son also has TS (tuberous sclerosis) but his MRI's indicate he does not have any spots on his brain. Again, excuse me if this has previously been discussed. Hope In a message dated 8/20/03 9:40:35 PM Eastern Daylight Time, pamelapotter@... writes: > She did the ADOS testing which consisted of certain activities and > observations. She did it for us because our insurance wouldn't cover it. > The tests she had done were MRI (to be sure his brain was all there and that > the communication part of the brain was fully developed since he is speech > delayed), an EEG to determine whether the crying out in his sleep could be > due to seizures, genetics testing, Fragile X and heavy metals testing, > including Mercury, speech and language testing, o.t. evaluation, I'm trying > to remember what else at this point. She's never suggested medications for > him and I don't he needs any. I hope that doesn't change. > > We first saw her on Oct. 30 last year and she's seen him twice since then, > plus, my husband and I went for a meeting to go over all of the test > results. His next appointment is in March so she can see how he's > progressed and to get recommendations ready for starting Kindergarden in the > fall. I'm not sure how often she will see him after the March appointment. > She always returns my calls when I have questions for her and doesn't seem > to be watching the clock when we talk. > > After saying this, I am very happy to have come across the other doctor I > spoke about though. Nobody has ever mentioned any alternative testing of > any kind. It is nice to have hope that something can be done to help him by > doing a simple blood test to find out whether something else is causing the > autistic traits. > > I'm new to this myself and didn't know how much more there is out there. > So, while I've been happy with TCH, I am happier to get a fresh perspective. > > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 In a message dated 8/21/03 12:45:17 PM Central Daylight Time, gryharhntr@... writes: << I will probably have doctor Volpe or Dr do or look at is the herpes or roseola virus (sp). I need to find my print of previous postings regarding this. What I remember is that if a child has had a rash and then later temporarily lost the use of his right leg, it could be due to a virus. >> From what I understand, difficulty using either side of the body -- right or left -- could be due to a virus affecting the brain, though I do know of more cases where the kids were affected on the right side than the left. That was one of the major indicators, along with other mild-CP type motor issues my son has had over the years, that led Dr. Goldberg to do a trial on anti-viral medication for him. His titer tests showed " equivocal " or not enough to be a problem but very slightly elevated. PCR testing showed nothing. We just had another HHV6 titer test drawn to see if the titer has risen since he started on the anti-viral. This often happens for kids whose immune systems are so dysregulated that their bodies are not able to manufacture antibodies (titers) against HHV6. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 In a message dated 8/21/03 12:45:17 PM Central Daylight Time, gryharhntr@... writes: << I will probably have doctor Volpe or Dr do or look at is the herpes or roseola virus (sp). I need to find my print of previous postings regarding this. What I remember is that if a child has had a rash and then later temporarily lost the use of his right leg, it could be due to a virus. >> From what I understand, difficulty using either side of the body -- right or left -- could be due to a virus affecting the brain, though I do know of more cases where the kids were affected on the right side than the left. That was one of the major indicators, along with other mild-CP type motor issues my son has had over the years, that led Dr. Goldberg to do a trial on anti-viral medication for him. His titer tests showed " equivocal " or not enough to be a problem but very slightly elevated. PCR testing showed nothing. We just had another HHV6 titer test drawn to see if the titer has risen since he started on the anti-viral. This often happens for kids whose immune systems are so dysregulated that their bodies are not able to manufacture antibodies (titers) against HHV6. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 In a message dated 8/21/03 12:45:17 PM Central Daylight Time, gryharhntr@... writes: << I will probably have doctor Volpe or Dr do or look at is the herpes or roseola virus (sp). I need to find my print of previous postings regarding this. What I remember is that if a child has had a rash and then later temporarily lost the use of his right leg, it could be due to a virus. >> From what I understand, difficulty using either side of the body -- right or left -- could be due to a virus affecting the brain, though I do know of more cases where the kids were affected on the right side than the left. That was one of the major indicators, along with other mild-CP type motor issues my son has had over the years, that led Dr. Goldberg to do a trial on anti-viral medication for him. His titer tests showed " equivocal " or not enough to be a problem but very slightly elevated. PCR testing showed nothing. We just had another HHV6 titer test drawn to see if the titer has risen since he started on the anti-viral. This often happens for kids whose immune systems are so dysregulated that their bodies are not able to manufacture antibodies (titers) against HHV6. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Your 24 hour urine is very high and if your renin is low and the sodium was high in the same urine then you have primary aldosteronism. Please get the values and their normals. The great majority of folks today do not have a tumor that can be seen on CT or MRi because we are diagnosing it earlier before the tumor becomes large enough to see. There also inherited forms so ask all your family if they have ever had HTN and low K as well. How long have you been on spiro and how much. has your BP improved on it? I would recommend you try to see Dr. Addision at Baylor in Houston. He is one of the best experts in PA in the area. Tell his office that Dr. Grim asked you to contact him. -- May your pressure be low! CE Grim MD Clinical Professor of Internal Medicine Professor of Epidemiology Board Certified in Internal Medicine, Geriatrics and Hypertension Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 In a message dated 8/1/2004 4:29:49 PM Central Standard Time, lowerbp2@... writes: I would not expect Lotrel to work very weil in PA. What were you one before? Sorry for the delay in answering.... There were several different ones that I've tried. I've been on BP meds for a decade, I would guess. The following are some that I've been on, I think. COVERA-HS COZAAR DYAZIDE HYDROCHLOROTHIAZIDE LASIX NORVASC TENORMIN TOPROL XL TRIAMTERENE I've not had the opportunity to check with family yet about their K levels. My dad had a stroke in his early 70's, and a second one a month later. That's the only one to have had a stroke, other than Mom, and she was probably in her early to mid 70's. Hers was mild, Dad's wasn't. Dad's of German descent, with a dash of English in there, I think. Mom's the one with the ish, Irish and English ancestry. It would be nearly impossible to track back on my Ks. I could give you some readings, but the dr. that had me on too many meds was supposed to have sent my lab results to the kidney dr. and over a 5 year period of quarterly check ups, he sent 3 or 4 test results. The dr. after that tested once in 6 months and no K. I have finally found one that seems to be ok, but, as I told you before, I'm seriously considering going to Houston. The laxatives taken for the colonoscopy caused diarrhea for a day, but then that went back to normal after the procedure. I will get those numbers from my dr. tomorrow, if I don't forget. I just don't understand so much of this. I don't understand the difference in PA and SA, as far as how it affects one. What do I have to look forward to? How do I know which I am? Will I be able to get off my BP meds and Diabetes meds? My primary dr. just increased my DM meds, and now my sugar levels are dropping down to normal, but my body doesn't agree that it's normal<smile>. Will the spiro help to bring my sugar levels down too? If so, how long does it have to be working in the body for me to see some results? Will it also help alleviate depression? For the first time, it seems like there is hope out there, that I can find an answer that no one seemed to be able to find before. And from what I've read online, it seems that the hyperaldosteronism can be the common denominator for all of my problems.....is this right? What about sudden "fat" gain? This dr. that had me on too many meds had me on premarin before checking my hormone levels due to an early partial hysterectomy. As it turned out, I had the lab check my hormone level, and I didn't get the results until 2 1/2 years later(they were sent to the dr., not me) just to find out that my hormone levels were normal, and I was taken more hormones the whole time. I gained a tremendous amount of fat bulges in my upper arms and thighs and around the abdomen during this time. I blamed it on the hormones. Could that have been from the aldosterone too? Some of the things I'm hearing on this list are so far above my head that I cannot even begin to comprehend. Please, bear with me as I cope to get a grip on this...... bevAnnie http://www.angelfire.com/tn/shepherdsrest Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2004 Report Share Posted August 4, 2004 There were several different ones that I've tried. I've been on BP meds for a decade, I would guess. The following are some that I've been on, I think. COVERA-HS This is an ARB and doesnt work in PA: COZAAR These are BB and doesnt work well in PA: TENORMIN TOPROL XL This is CCB and may not work will in PA: NORVASC These are diuretics and may lower K causing cramps, numbness, weakness (if K gets low enought): HYDROCHLOROTHIAZIDE LASIX This is a K sparing agent TRIAMTERENE Dyazide in Traam + HCTZ DYAZIDE Certainly the diabetes will be realted to low K as in PA Obesity is due to eating more than you burn up. Hormones may increase appetite. Cushing's will do this but usually have purple stretch marks on Abd. Google Cushing's Syndrome pictures and see if you look like any of them. I think there will be a pciture there May your pressure be low! CE Grim MD Clinical Professor of Internal Medicine Professor of Epidemiology Board Certified in Internal Medicine, Geriatrics and Hypertension Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Hi Stan, Incredibly some folks get through tx with NO side effects. Some of us wish we were dead, the sides are so bad. Most are somewhere in between. Be sure to drink LOTS of water. I drink nearly a gallon of water a day. It helps the most with the ongoing sides. For me the " shot " sides were not horribly bad. What was bad was the depression, the neuropathy, the apathy, the exhaustion, the nearly constant migraines, the mouth sores, and the fact that everything except sugar tasted just plain nasty. My sides were pretty bad. Sally New to this Hi guys and gals, Just started treatment 3 wks ago (HVC, Stage 2, Geno type 3a, viral load 1,500,000) Rx PEG redipen/REB. Have dghtr who went tru Wilms Tumor (Kidney cancer)@ 3yrs of age (thank God, she's now 20 & doing great!!!) - I say that to say this, her " side effects " manifested about 1 mnth from first admin of chemo, so I thought mine would also - WRONG! 8 hrs later 104.7 spikes, 10 min later 96.5 degree chills. Went on for 8 hrs or so. Male menipause to the max! ;-( 2nd inj I pretreated w/tylonmal & benedryl - ahh... next to NO side effects. 3rd inj, sheet! Damn near like the 1st...Does this junk stabilize? Stan It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2005 Report Share Posted October 5, 2005 Stan I had times like that too,, I know others did as well and we used to wonder if the drugs were really the same batch to batch,, becasue some times it was like nothing and the next time it was like being in hell,, lol,, but when you reach SVR and its all over, it will be worth it, hugs jax --- Stanley Nacht <nonacht@...> wrote: > Hi guys and gals, > Just started treatment 3 wks ago (HVC, Stage 2, Geno > type 3a, viral > load 1,500,000) Rx PEG redipen/REB. > Have dghtr who went tru Wilms Tumor (Kidney cancer)@ > 3yrs of age > (thank God, she's now 20 & doing great!!!) - I say > that to say this, > her " side effects " manifested about 1 mnth from > first admin of chemo, > so I thought mine would also - WRONG! 8 hrs later > 104.7 spikes, 10 > min later 96.5 degree chills. Went on for 8 hrs or > so. Male menipause > to the max! ;-( > 2nd inj I pretreated w/tylonmal & benedryl - ahh... > next to NO side > effects. > 3rd inj, sheet! Damn near like the 1st...Does this > junk stabilize? > Stan > > > Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Side effects hit you when the drug PEAKS Jackie.....so it depends which PRODUCT you're using. Silvia > > > Hi guys and gals, > > Just started treatment 3 wks ago (HVC, Stage 2, Geno > > type 3a, viral > > load 1,500,000) Rx PEG redipen/REB. > > Have dghtr who went tru Wilms Tumor (Kidney cancer)@ > > 3yrs of age > > (thank God, she's now 20 & doing great!!!) - I say > > that to say this, > > her " side effects " manifested about 1 mnth from > > first admin of chemo, > > so I thought mine would also - WRONG! 8 hrs later > > 104.7 spikes, 10 > > min later 96.5 degree chills. Went on for 8 hrs or > > so. Male menipause > > to the max! ;-( > > 2nd inj I pretreated w/tylonmal & benedryl - ahh... > > next to NO side > > effects. > > 3rd inj, sheet! Damn near like the 1st...Does this > > junk stabilize? > > Stan > > > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 well it was weird silvia,, some weeks it kicked my butt and other weeks it was like nothing,, but there was NO rhyme or reason as to when it was awful and when it was ok,, I know Marrcuss said the same thing as did others,, we all wondered if the drugs were consistant in concentration... --- silvianursey <Bhprice425@...> wrote: > > Side effects hit you when the drug PEAKS > Jackie.....so it depends > which PRODUCT you're using. > Silvia > > > > > > > Hi guys and gals, > > > Just started treatment 3 wks ago (HVC, Stage 2, > Geno > > > type 3a, viral > > > load 1,500,000) Rx PEG redipen/REB. > > > Have dghtr who went tru Wilms Tumor (Kidney > cancer)@ > > > 3yrs of age > > > (thank God, she's now 20 & doing great!!!) - I > say > > > that to say this, > > > her " side effects " manifested about 1 mnth from > > > first admin of chemo, > > > so I thought mine would also - WRONG! 8 hrs > later > > > 104.7 spikes, 10 > > > min later 96.5 degree chills. Went on for 8 hrs > or > > > so. Male menipause > > > to the max! ;-( > > > 2nd inj I pretreated w/tylonmal & benedryl - > ahh... > > > next to NO side > > > effects. > > > 3rd inj, sheet! Damn near like the 1st...Does > this > > > junk stabilize? > > > Stan > > > > > > > > > > > > > > > Jackie > > > > > > > Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Me too. Re: Re: New to this well it was weird silvia,, some weeks it kicked my butt and other weeks it was like nothing,, but there was NO rhyme or reason as to when it was awful and when it was ok,, I know Marrcuss said the same thing as did others,, we all wondered if the drugs were consistant in concentration... --- silvianursey <Bhprice425@...> wrote: > > Side effects hit you when the drug PEAKS > Jackie.....so it depends > which PRODUCT you're using. > Silvia > > > > > > > Hi guys and gals, > > > Just started treatment 3 wks ago (HVC, Stage 2, > Geno > > > type 3a, viral > > > load 1,500,000) Rx PEG redipen/REB. > > > Have dghtr who went tru Wilms Tumor (Kidney > cancer)@ > > > 3yrs of age > > > (thank God, she's now 20 & doing great!!!) - I > say > > > that to say this, > > > her " side effects " manifested about 1 mnth from > > > first admin of chemo, > > > so I thought mine would also - WRONG! 8 hrs > later > > > 104.7 spikes, 10 > > > min later 96.5 degree chills. Went on for 8 hrs > or > > > so. Male menipause > > > to the max! ;-( > > > 2nd inj I pretreated w/tylonmal & benedryl - > ahh... > > > next to NO side > > > effects. > > > 3rd inj, sheet! Damn near like the 1st...Does > this > > > junk stabilize? > > > Stan > > > > > > > > > > > > > > > Jackie > > > > > > > Jackie It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/ Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Have you heard how some people who take Peg Intron say that they start to feel bad on day 6 almost as if they are hooked on the Peg? as if they miss it and need a fix? I've heard many people say that.....and it makes sense.....because the Peg lasts 6 days then the effect starts to go away. With Pegasys it's different....it staysd in tyhe system 6 weeks and peaks at a different time.....so the first thing I would ask people is....are you taking it at the same time every week? Silvia > > > > > > > Hi guys and gals, > > > > Just started treatment 3 wks ago (HVC, Stage 2, > > Geno > > > > type 3a, viral > > > > load 1,500,000) Rx PEG redipen/REB. > > > > Have dghtr who went tru Wilms Tumor (Kidney > > cancer)@ > > > > 3yrs of age > > > > (thank God, she's now 20 & doing great!!!) - I > > say > > > > that to say this, > > > > her " side effects " manifested about 1 mnth from > > > > first admin of chemo, > > > > so I thought mine would also - WRONG! 8 hrs > > later > > > > 104.7 spikes, 10 > > > > min later 96.5 degree chills. Went on for 8 hrs > > or > > > > so. Male menipause > > > > to the max! ;-( > > > > 2nd inj I pretreated w/tylonmal & benedryl - > > ahh... > > > > next to NO side > > > > effects. > > > > 3rd inj, sheet! Damn near like the 1st...Does > > this > > > > junk stabilize? > > > > Stan > > > > > > > > > > > > > > > > > > > > > Jackie > > > > > > > > > > > > > > > > Jackie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2005 Report Share Posted October 9, 2005 Yes I took it every week at 9pm come heck or high water,, always at 9 pm...I really can't say that I ever noticed feeling worse on any day other than the sat after my shot... --- silvianursey <Bhprice425@...> wrote: > > Have you heard how some people who take Peg Intron > say that they > start to feel bad on day 6 almost as if they are > hooked on the Peg? > as if they miss it and need a fix? I've heard many > people say > that.....and it makes sense.....because the Peg > lasts 6 days then the > effect starts to go away. With Pegasys it's > different....it staysd > in tyhe system 6 weeks and peaks at a different > time.....so the first > thing I would ask people is....are you taking it at > the same time > every week? > Silvia > > > > > > > > > > > > > > Hi guys and gals, > > > > > Just started treatment 3 wks ago (HVC, Stage > 2, > > > Geno > > > > > type 3a, viral > > > > > load 1,500,000) Rx PEG redipen/REB. > > > > > Have dghtr who went tru Wilms Tumor (Kidney > > > cancer)@ > > > > > 3yrs of age > > > > > (thank God, she's now 20 & doing great!!!) - > I > > > say > > > > > that to say this, > > > > > her " side effects " manifested about 1 mnth > from > > > > > first admin of chemo, > > > > > so I thought mine would also - WRONG! 8 hrs > > > later > > > > > 104.7 spikes, 10 > > > > > min later 96.5 degree chills. Went on for 8 > hrs > > > or > > > > > so. Male menipause > > > > > to the max! ;-( > > > > > 2nd inj I pretreated w/tylonmal & benedryl - > > > ahh... > > > > > next to NO side > > > > > effects. > > > > > 3rd inj, sheet! Damn near like the > 1st...Does > > > this > > > > > junk stabilize? > > > > > Stan > > > > > > > > > > > > > > > > > > > > > > > > > > > Jackie > > > > > > > > > > > > > > > > > > > > > > > > > Jackie > > > > > > > Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2005 Report Share Posted December 3, 2005 HI RACHAEL MY SON IS 8 NOW AND STILL GETS SYMPTOMS OF PERIODIC FEVERS, I AM ALSO A SINGLE MUM AND DO FIND IT HARD TO JUGGLE A JOB TOO, I AM GLAD YOU FOUND THIS LIST AS THERE IS A LOT OF SUPPORT AND INFORMATION ANNE MOTHER OF KOBY-DEAN New to this >I am new. My daughter is 2 years old and her name is . She has > been experiencing the cylical fevers officially since August of 2004. > They happened once a month from August 2004 through December 2004 and > the symptoms took a break until May 2005 and have been persistent > since. I haven't counted to the day how often yet but I know it is > every 3-5 weeks. I will definitely start counting now. I am so glad > to finally know what is wrong with her. Are there any other single > parents out there? Besides my daughter's health, I have to try to > juggle my job and not lose it for having to take off every few weeks. > I am hoping some of my family will be able to step up and help. > > Is there an average age that children grow out of this? Anyway, I am > glad to have found a forum of others out there. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Hi hon NO, it does not affect your ability to have children,, YOU just DONT want to get pregnant if he is on treatment while he is on tx,, or for 6 months afterwards.. The Riba is very much associated with birth defects,, thats all you need to worry about,, so as long as you either get pregnant before tx or wait until 6 months after he has finished, you are fine.. As far as your other children, they need to know that they should NOT use his toothbrush, razor, nail clippers or IF he should cut himself, they should not touch his blood unless they have gloves on.. Bleach solution can and will kill this virus so just clean things up with bleach. They do not need to worry about eating off his fork or taking a drink from his cup etc,, unless he has blood in his mouth and they have an open wound,, there is nothing to worry about. This disease is spread by blood to blood contact, thats why we say dont share razors, nail clippers etc,, they could have miniscule drops of blood that you cant see and if you cut yourself ,, you could technically infect yourself.. Please ask all the questions you have, thats what we are here for!! jaxans412 <ans412@...> wrote: Hey ya'll,Im really new to this so Im not sure where to start. We just found out that my fiance has hep. C and I am trying to learn all I can about this. Im hoping some of ya'll might be able to answer some of my questions. Ive searched the sites but they all just jump around my questions. How does this affect us having children? I have two other children from a previous marriage, how do i protect them without being too worried all the time? Im so confused about this. Hope ya'll can help.Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 Welcome! I hope you can find the answers to ease your concern. I'm and I'm pretty new here too, but I've known I have HCV for about 9 years now. There are many people here that can answer specific questions for you very very well. I can only offer my opinions, as I am not an expert. From personal experience I can tell you that I had HCV when I married, and after twenty years of marriage and not even knowing I had a problem, my ex-wife and my daughter tested negative for even the antibody. This means that they not only did not have HCV, but had never been exposed to it. Without getting too graphic, I'll just say that my wife and I had an active sex life. I was very close to my daughter as well. Just don't cut yourself with something he has just cut himself with. Don't share his razor. For information overload, check the internet. HA HA HA! But seriously, if you don't even know what questions you should be asking, try this website. http://janis7hepc.com/ I like it because it is well organized, and I'm not. Again, welcome here, Eat well, sleep well, be well!ans412 <ans412@...> wrote: Hey ya'll,Im really new to this so Im not sure where to start. We just found out that my fiance has hep. C and I am trying to learn all I can about this. Im hoping some of ya'll might be able to answer some of my questions. Ive searched the sites but they all just jump around my questions. How does this affect us having children? I have two other children from a previous marriage, how do i protect them without being too worried all the time? Im so confused about this. Hope ya'll can help.It's a pleasure having you join in our conversations. We hope you have found the support you need with us. If you are using email for your posts, for easy access to our group, just click the link-- Hepatitis C/Happy Posting Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Thank you so much Jackie. That really helped. He hasnt started any kind of treatment yet because we dont even know what stage or how far it is yet. My two other children are both small so we havent even told them. They wouldnt understand at all. Here's a question for you. He is tired all the time. He works ALOT, so Im sure some of it is due to that, but in the last few months all it seems he wants to do is SLEEP! Is this part of it?Jackie on <redjaxjm@...> wrote: Hi hon NO, it does not affect your ability to have children,, YOU just DONT want to get pregnant if he is on treatment while he is on tx,, or for 6 months afterwards.. The Riba is very much associated with birth defects,, thats all you need to worry about,, so as long as you either get pregnant before tx or wait until 6 months after he has finished, you are fine.. As far as your other children, they need to know that they should NOT use his toothbrush, razor, nail clippers or IF he should cut himself, they should not touch his blood unless they have gloves on.. Bleach solution can and will kill this virus so just clean things up with bleach. They do not need to worry about eating off his fork or taking a drink from his cup etc,, unless he has blood in his mouth and they have an open wound,, there is nothing to worry about. This disease is spread by blood to blood contact, thats why we say dont share razors, nail clippers etc,, they could have miniscule drops of blood that you cant see and if you cut yourself ,, you could technically infect yourself.. Please ask all the questions you have, thats what we are here for!! jaxans412 <ans412@...> wrote: Hey ya'll,Im really new to this so Im not sure where to start. We just found out that my fiance has hep. C and I am trying to learn all I can about this. Im hoping some of ya'll might be able to answer some of my questions. Ive searched the sites but they all just jump around my questions. How does this affect us having children? I have two other children from a previous marriage, how do i protect them without being too worried all the time? Im so confused about this. Hope ya'll can help.Jackie Thanks, What are the most popular cars? Find out at Autos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Hi , Yes, unfortunately the fatigue is part of this disease.. BUT,,, it can be helped with certain meds,, I take "Provigil" for my fatigue as do a lot of us with this disease.. so that is something you might want to talk about with his doc.. The main thing I would suggest is that you find a doc who has treated Hep c for a long time and really knows what he is doing.. there are many docs out there that are treating hep c but really do not know HOW to treat each person as an individual, they just follow the treatment protocol and most of us know that what works for one might not work for all.. If he is really newly infected,, there are many "pro's " to treating early,, less side effects, less viral load to kill,, and usually a better outcome with tx.. BUT there are also the side effects of tx that can be really debilitating.. its best to gather ALL the info, have ALL the tests and know exactly where he is with this illness,, what stage of damage he has, what grade of inflammtion he has,, what genotype he has,, etc, then make a decision about tx... HE MUST have a LIVER BIOPSY!!! Most of us dread that cuz we have heard the horror stories,, but he should have a doc who is very adept at doing the biopsy and he should DEMAND conscious sedation for the procedure.. its a piece of cake that way.. he wont remember it at all,, but is awake enough to hold still when needed... Try not to worry, this disease moves in DECADES, not months,, or years, but decades,, take it one day at a time,, and just gather all the info BEFORE making a decision! Let us know if there is anything else we can do to help you and please hang around,, we are a good support group!! hugs jaxnicole stevens <ans412@...> wrote: Thank you so much Jackie. That really helped. He hasnt started any kind of treatment yet because we dont even know what stage or how far it is yet. My two other children are both small so we havent even told them. They wouldnt understand at all. Here's a question for you. He is tired all the time. He works ALOT, so Im sure some of it is due to that, but in the last few months all it seems he wants to do is SLEEP! Is this part of it?Jackie on <redjaxjm@...> wrote: Hi hon NO, it does not affect your ability to have children,, YOU just DONT want to get pregnant if he is on treatment while he is on tx,, or for 6 months afterwards.. The Riba is very much associated with birth defects,, thats all you need to worry about,, so as long as you either get pregnant before tx or wait until 6 months after he has finished, you are fine.. As far as your other children, they need to know that they should NOT use his toothbrush, razor, nail clippers or IF he should cut himself, they should not touch his blood unless they have gloves on.. Bleach solution can and will kill this virus so just clean things up with bleach. They do not need to worry about eating off his fork or taking a drink from his cup etc,, unless he has blood in his mouth and they have an open wound,, there is nothing to worry about. This disease is spread by blood to blood contact, thats why we say dont share razors, nail clippers etc,, they could have miniscule drops of blood that you cant see and if you cut yourself ,, you could technically infect yourself.. Please ask all the questions you have, thats what we are here for!! jaxans412 <ans412@...> wrote: Hey ya'll,Im really new to this so Im not sure where to start. We just found out that my fiance has hep. C and I am trying to learn all I can about this. Im hoping some of ya'll might be able to answer some of my questions. Ive searched the sites but they all just jump around my questions. How does this affect us having children? I have two other children from a previous marriage, how do i protect them without being too worried all the time? Im so confused about this. Hope ya'll can help.Jackie Thanks, What are the most popular cars? Find out at Autos Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Jax!!! What's that you said??? "we are a good support group!! " Ha! You are far too modest! This is a GREAT support group. I'm very thankful to have found this group. ((((((hugs))))) Jackie on <redjaxjm@...> wrote: Hi , Yes, unfortunately the fatigue is part of this disease.. BUT,,, it can be helped with certain meds,, I take "Provigil" for my fatigue as do a lot of us with this disease.. so that is something you might want to talk about with his doc.. The main thing I would suggest is that you find a doc who has treated Hep c for a long time and really knows what he is doing.. there are many docs out there that are treating hep c but really do not know HOW to treat each person as an individual, they just follow the treatment protocol and most of us know that what works for one might not work for all.. If he is really newly infected,, there are many "pro's " to treating early,, less side effects, less viral load to kill,, and usually a better outcome with tx.. BUT there are also the side effects of tx that can be really debilitating.. its best to gather ALL the info, have ALL the tests and know exactly where he is with this illness,, what stage of damage he has, what grade of inflammtion he has,, what genotype he has,, etc, then make a decision about tx... HE MUST have a LIVER BIOPSY!!! Most of us dread that cuz we have heard the horror stories,, but he should have a doc who is very adept at doing the biopsy and he should DEMAND conscious sedation for the procedure.. its a piece of cake that way.. he wont remember it at all,, but is awake enough to hold still when needed... Try not to worry, this disease moves in DECADES, not months,, or years, but decades,, take it one day at a time,, and just gather all the info BEFORE making a decision! Let us know if there is anything else we can do to help you and please hang around,, we are a good support group!! hugs jaxnicole stevens <ans412@...> wrote: Thank you so much Jackie. That really helped. He hasnt started any kind of treatment yet because we dont even know what stage or how far it is yet. My two other children are both small so we havent even told them. They wouldnt understand at all. Here's a question for you. He is tired all the time. He works ALOT, so Im sure some of it is due to that, but in the last few months all it seems he wants to do is SLEEP! Is this part of it?Jackie on <redjaxjm@...> wrote: Hi hon NO, it does not affect your ability to have children,, YOU just DONT want to get pregnant if he is on treatment while he is on tx,, or for 6 months afterwards.. The Riba is very much associated with birth defects,, thats all you need to worry about,, so as long as you either get pregnant before tx or wait until 6 months after he has finished, you are fine.. As far as your other children, they need to know that they should NOT use his toothbrush, razor, nail clippers or IF he should cut himself, they should not touch his blood unless they have gloves on.. Bleach solution can and will kill this virus so just clean things up with bleach. They do not need to worry about eating off his fork or taking a drink from his cup etc,, unless he has blood in his mouth and they have an open wound,, there is nothing to worry about. This disease is spread by blood to blood contact, thats why we say dont share razors, nail clippers etc,, they could have miniscule drops of blood that you cant see and if you cut yourself ,, you could technically infect yourself.. Please ask all the questions you have, thats what we are here for!! jaxans412 <ans412@...> wrote: Hey ya'll,Im really new to this so Im not sure where to start. We just found out that my fiance has hep. C and I am trying to learn all I can about this. Im hoping some of ya'll might be able to answer some of my questions. Ive searched the sites but they all just jump around my questions. How does this affect us having children? I have two other children from a previous marriage, how do i protect them without being too worried all the time? Im so confused about this. Hope ya'll can help.Jackie Thanks, What are the most popular cars? Find out at Autos Jackie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 Well thank you Chris!!! You have been a GREAT addition to our forum!!! thanks for all you do to help us too! hugs jaxHunter <us2china2@...> wrote: Jax!!! What's that you said??? "we are a good support group!! " Ha! You are far too modest! This is a GREAT support group. I'm very thankful to have found this group. ((((((hugs))))) Jackie on <redjaxjm@...> wrote: Hi , Yes, unfortunately the fatigue is part of this disease.. BUT,,, it can be helped with certain meds,, I take "Provigil" for my fatigue as do a lot of us with this disease.. so that is something you might want to talk about with his doc.. The main thing I would suggest is that you find a doc who has treated Hep c for a long time and really knows what he is doing.. there are many docs out there that are treating hep c but really do not know HOW to treat each person as an individual, they just follow the treatment protocol and most of us know that what works for one might not work for all.. If he is really newly infected,, there are many "pro's " to treating early,, less side effects, less viral load to kill,, and usually a better outcome with tx.. BUT there are also the side effects of tx that can be really debilitating.. its best to gather ALL the info, have ALL the tests and know exactly where he is with this illness,, what stage of damage he has, what grade of inflammtion he has,, what genotype he has,, etc, then make a decision about tx... HE MUST have a LIVER BIOPSY!!! Most of us dread that cuz we have heard the horror stories,, but he should have a doc who is very adept at doing the biopsy and he should DEMAND conscious sedation for the procedure.. its a piece of cake that way.. he wont remember it at all,, but is awake enough to hold still when needed... Try not to worry, this disease moves in DECADES, not months,, or years, but decades,, take it one day at a time,, and just gather all the info BEFORE making a decision! Let us know if there is anything else we can do to help you and please hang around,, we are a good support group!! hugs jaxnicole stevens <ans412@...> wrote: Thank you so much Jackie. That really helped. He hasnt started any kind of treatment yet because we dont even know what stage or how far it is yet. My two other children are both small so we havent even told them. They wouldnt understand at all. Here's a question for you. He is tired all the time. He works ALOT, so Im sure some of it is due to that, but in the last few months all it seems he wants to do is SLEEP! Is this part of it?Jackie on <redjaxjm@...> wrote: Hi hon NO, it does not affect your ability to have children,, YOU just DONT want to get pregnant if he is on treatment while he is on tx,, or for 6 months afterwards.. The Riba is very much associated with birth defects,, thats all you need to worry about,, so as long as you either get pregnant before tx or wait until 6 months after he has finished, you are fine.. As far as your other children, they need to know that they should NOT use his toothbrush, razor, nail clippers or IF he should cut himself, they should not touch his blood unless they have gloves on.. Bleach solution can and will kill this virus so just clean things up with bleach. They do not need to worry about eating off his fork or taking a drink from his cup etc,, unless he has blood in his mouth and they have an open wound,, there is nothing to worry about. This disease is spread by blood to blood contact, thats why we say dont share razors, nail clippers etc,, they could have miniscule drops of blood that you cant see and if you cut yourself ,, you could technically infect yourself.. Please ask all the questions you have, thats what we are here for!! jaxans412 <ans412@...> wrote: Hey ya'll,Im really new to this so Im not sure where to start. We just found out that my fiance has hep. C and I am trying to learn all I can about this. Im hoping some of ya'll might be able to answer some of my questions. Ive searched the sites but they all just jump around my questions. How does this affect us having children? I have two other children from a previous marriage, how do i protect them without being too worried all the time? Im so confused about this. Hope ya'll can help.Jackie Thanks, What are the most popular cars? Find out at Autos Jackie __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 YES its a fabulous support group!. Though I dont join in on a daily basis, I come in for my next episode of Hep C bantor LMAOOO!!! --- Hunter <us2china2@...> wrote: > Jax!!! What's that you said??? " we are a good > support group!! " Ha! You are far too modest! > This is a GREAT support group. I'm very thankful to > have found this group. > > ((((((hugs))))) > > > Jackie on <redjaxjm@...> wrote: > Hi , > Yes, unfortunately the fatigue is part of this > disease.. BUT,,, it can be helped with certain > meds,, I take " Provigil " for my fatigue as do a lot > of us with this disease.. so that is something you > might want to talk about with his doc.. The main > thing I would suggest is that you find a doc who has > treated Hep c for a long time and really knows what > he is doing.. there are many docs out there that are > treating hep c but really do not know HOW to treat > each person as an individual, they just follow the > treatment protocol and most of us know that what > works for one might not work for all.. > If he is really newly infected,, there are many > " pro's " to treating early,, less side effects, less > viral load to kill,, and usually a better outcome > with tx.. BUT there are also the side effects of tx > that can be really debilitating.. its best to gather > ALL the info, have ALL the tests and know exactly > where he is with this illness,, what stage of damage > he has, what grade of inflammtion he has,, what > genotype he has,, etc, then make a decision about > tx... HE MUST have a LIVER BIOPSY!!! Most of us > dread that cuz we have heard the horror stories,, > but he should have a doc who is very adept at doing > the biopsy and he should DEMAND conscious sedation > for the procedure.. its a piece of cake that way.. > he wont remember it at all,, but is awake enough to > hold still when needed... > Try not to worry, this disease moves in DECADES, > not months,, or years, but decades,, take it one day > at a time,, and just gather all the info BEFORE > making a decision! > Let us know if there is anything else we can do to > help you and please hang around,, we are a good > support group!! > hugs > jax > > nicole stevens <ans412@...> wrote: > Thank you so much Jackie. That really helped. He > hasnt started any kind of treatment yet because we > dont even know what stage or how far it is yet. My > two other children are both small so we havent even > told them. They wouldnt understand at all. Here's a > question for you. He is tired all the time. He works > ALOT, so Im sure some of it is due to that, but in > the last few months all it seems he wants to do is > SLEEP! Is this part of it? > > Jackie on <redjaxjm@...> wrote: Hi > hon > NO, it does not affect your ability to have > children,, YOU just DONT want to get pregnant if he > is on treatment while he is on tx,, or for 6 months > afterwards.. The Riba is very much associated with > birth defects,, thats all you need to worry about,, > so as long as you either get pregnant before tx or > wait until 6 months after he has finished, you are > fine.. > As far as your other children, they need to know > that they should NOT use his toothbrush, razor, nail > clippers or IF he should cut himself, they should > not touch his blood unless they have gloves on.. > Bleach solution can and will kill this virus so just > clean things up with bleach. They do not need to > worry about eating off his fork or taking a drink > from his cup etc,, unless he has blood in his mouth > and they have an open wound,, there is nothing to > worry about. This disease is spread by blood to > blood contact, thats why we say dont share razors, > nail clippers etc,, they could have miniscule drops > of blood that you cant see and if you cut yourself > ,, you could technically infect yourself.. > Please ask all the questions you have, thats what > we are here for!! > jax > > ans412 <ans412@...> wrote: > Hey ya'll, > > Im really new to this so Im not sure where to start. > We just found out > that my fiance has hep. C and I am trying to learn > all I can about > this. Im hoping some of ya'll might be able to > answer some of my > questions. Ive searched the sites but they all just > jump around my > questions. How does this affect us having children? > I have two other > children from a previous marriage, how do i protect > them without being > too worried all the time? Im so confused about this. > Hope ya'll can > help. > > > > > > > > > > Jackie > > > Thanks, > --------------------------------- > > What are the most popular cars? Find out at > Autos > > > > Jackie > > It's a pleasure having you join in our > conversations. We hope you have found the support > you need with us. > > If you are using email for your posts, for easy > access to our group, just click the link-- > Hepatitis C/ > > Happy Posting > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 I just received this , I was out of town . I have had 4 children since I was diagnosed and they are all negative . The chances of him passing the hep c are less than 1% , so I wouldnt worry much about it. You dont need to protect them from anything other than his blood , like toothbrushes and razors other than that nothing special has to be done . new to this Hey ya'll,Im really new to this so Im not sure where to start. We just found out that my fiance has hep. C and I am trying to learn all I can about this. Im hoping some of ya'll might be able to answer some of my questions. Ive searched the sites but they all just jump around my questions. How does this affect us having children? I have two other children from a previous marriage, how do i protect them without being too worried all the time? Im so confused about this. Hope ya'll can help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 willikye2002 wrote: > Hello, > My 11 yr old son was dxed with CVID after 3 yrs of no known > dx.He has generalized lymphadenopathy ,along with GI problems and > skin.We have not started the IVIG yet.I am getting contradicting info > from Drs.as to what,where and when. > I'm just wondering if anyone has CVID along with lymphoid > hyperplasia.As to up-take on PET scan. > Patty > Patty, my daughter had so many swollen lymph glands and it was all CVID related. Once she started IVIG, her lymph glands started behaving. Now, I don't know all the medical terminology that you've used whether that's something different from just swollen lymph glands or not. But, Katy DID have extremely swollen lymph glands. In fact, the other day I was looking at pictures of her during the pre-diagnosis phase and was appalled at how swollen her neck was -- she looked like a line-backer football player, her neck was so huge -- but at the time, it happened so gradually, we didn't realize how bizarre it was. We just knew that her lymph glands were always swollen and sore. Welcome to the group. Let us know how we can help -- maybe someone else on the group will know more about the terminology. In His service, dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 > > Hello, > > My 11 yr old son was dxed with CVID after 3 yrs of no known > > dx.He has generalized lymphadenopathy ,along with GI problems and > > skin.We have not started the IVIG yet.I am getting contradicting info > > from Drs.as to what,where and when. > > I'm just wondering if anyone has CVID along with lymphoid > > hyperplasia.As to up-take on PET scan. > > Patty > > > > > Patty, my daughter had so many swollen lymph glands and it was all CVID > related. Once she started IVIG, her lymph glands started behaving. > Now, I don't know all the medical terminology that you've used whether > that's something different from just swollen lymph glands or not. But, > Katy DID have extremely swollen lymph glands. In fact, the other day I > was looking at pictures of her during the pre-diagnosis phase and was > appalled at how swollen her neck was -- she looked like a line- backer > football player, her neck was so huge -- but at the time, it happened so > gradually, we didn't realize how bizarre it was. We just knew that her > lymph glands were always swollen and sore. > > Welcome to the group. Let us know how we can help -- maybe someone else > on the group will know more about the terminology. > > In His service, > dale > Yup,thats what they are but his are interior. Meaning deep in his body and are not sore.His lungs are loaded.I don't understand alot of your terminology , New to me. the CVID was out of left field for me/us. the waiting is absolutly insane and cannot believe these kids have to just hang in there like they do. Patty Quote Link to comment Share on other sites More sharing options...
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