Re: KJ/all- Trachea ring/ER visit

[Guest guest]

Wouldn't Dr. Whiteman have called me and prescribed a med for acidosis if the ammonia suggests it? Her lactic acid was 1.4 so thankfully it was ok at the time. My other daughter tends to stay in a metabolic acidotic state (mildly with meds) and he has been watching Porrah for it so this confuses me. Dr. Whiteman's secretary told me that he got the lab results (or at least she said she thought so). Zipporrah does seem a little better today. She is cranky and still coughing a bunch but didn't sleep all day like yesterday. She needs lots of comforting and doesn't want to play yet, but she also has been cutting her two front teeth amongst all of this. Darla: mommy to Asenath, Zipporrah, and the other 7 kiddos Re: Trachea ring/ER visit Hi Darla, Bunch of stuff jumps out at me: high amonia levels and other labs means she is in acidosis already, don't know if they checked lactic acid but I'd hydrate her the best I can and DEFINITELY give her ibuprophen to get that fever down ASAP as fever is extremely dangerous for mito kids, even a low grade fever. I'd also get her in to see the neurologist if yours is nearby (whoever treats the mito). Sponge the fever down if need be. The tracheal thing: my kid (and her mito brother) both had "tracheal malacia" as young babies/children till about age 5, which is a condition of softened tracheal rings which cause or at least allow the trachea to collapse under stress. I never related it to the mito and my daughter did outgrow it (her brother didn't survive but didn't die from mito at age 4) but it was touch and go on many occasions. I'm sorry you have to go through all this with so little support from the doctors who are supposed to be helping you. My prayers are with you for courage and strength.kjmom to De-Arbra age 16 Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

I agree with the stress issue. I get more overwhelmed about having to do everything on my own to get my kids through the viruses because I know the docs just always assume they are "like other kids." I think Dr. Whiteman thought she wasn't too bad and so he left it up to the doctor. My pediatrician wasn't too happy they let her go knowing about the vascular trachea ring issue. But, she tends to also look my kids over and if it's viral, send them on their way, assuming all will get better on its own. The biggest frustration I have is that many of you have doctors that assume keeping the kids hydrated is important, rather than like mine, think it is only necessary to deal with only AFTER dehydration is bad enough. My kids have to put NO urine out over 24 hours or barely any (Porrah wore 2 diapers in a 24 hr period and was stated to be doing good enough to not need an IV), have no tears, AND the lab results have to be very low to use an IV to treat. By this point they would be fighting for their lives and probably too late to stop a stroke. I plan to discuss this issue with Dr. Whiteman when I go see him again in April. Asenath is falling ill now too with croupy sounding coughs. Her lungs sounded whistley this morning so I took her to her pediatrician and was sent home with an assumption that all will be ok. No meds offered, just keep doing what I am doing... I love my pediatrician and know she is the best around for knowledge on Mito, but she still doesn't understand kids with Mito need more help. At least Asenath has a g-tube so I can add more liquids. Darla: mommy to Asenath, Zipporrah, and the gang Darla- Trachea ring/ER visit In a message dated 3/25/04 5:13:14 PM Pacific Standard Time, Mito writes: Wouldn't Dr. Whiteman have called me and prescribed a med for acidosis if the ammonia suggests it? Not necessarily if the lactic acid was OK, but surely I'd hope he'd at least admit her for hydration. Unless high ammonia levels are critical they usually just try to hydrate them down. I'm still aghast that she wasn't admitted, but after 16 years of dealing with this kind of thing (docs just blow you off, you're only the mom after all and they are Doctors with a capital G-o-d ) I shouldn't be surprised. Too the ER docs lie and I have personally see that happen hundreds of times where they minimize the report they give to your doc on the phone (IF they call at all and I've been lied to about that as well) or they lie about what your doc recommended because they disagree or just don't feel like it. Glad she's feeling a little better. Try green tea: not for her, for you. We need all the stress reducers we can get. I always said it's not my kid that stresses me out it's everyone else I have to deal with to get what she needs :)kjmom to De-Arbra age 16complex III (+2 others I forget cos they were less important to the doc) Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

I agree with the stress issue. I get more overwhelmed about having to do everything on my own to get my kids through the viruses because I know the docs just always assume they are "like other kids." I think Dr. Whiteman thought she wasn't too bad and so he left it up to the doctor. My pediatrician wasn't too happy they let her go knowing about the vascular trachea ring issue. But, she tends to also look my kids over and if it's viral, send them on their way, assuming all will get better on its own. The biggest frustration I have is that many of you have doctors that assume keeping the kids hydrated is important, rather than like mine, think it is only necessary to deal with only AFTER dehydration is bad enough. My kids have to put NO urine out over 24 hours or barely any (Porrah wore 2 diapers in a 24 hr period and was stated to be doing good enough to not need an IV), have no tears, AND the lab results have to be very low to use an IV to treat. By this point they would be fighting for their lives and probably too late to stop a stroke. I plan to discuss this issue with Dr. Whiteman when I go see him again in April. Asenath is falling ill now too with croupy sounding coughs. Her lungs sounded whistley this morning so I took her to her pediatrician and was sent home with an assumption that all will be ok. No meds offered, just keep doing what I am doing... I love my pediatrician and know she is the best around for knowledge on Mito, but she still doesn't understand kids with Mito need more help. At least Asenath has a g-tube so I can add more liquids. Darla: mommy to Asenath, Zipporrah, and the gang Darla- Trachea ring/ER visit In a message dated 3/25/04 5:13:14 PM Pacific Standard Time, Mito writes: Wouldn't Dr. Whiteman have called me and prescribed a med for acidosis if the ammonia suggests it? Not necessarily if the lactic acid was OK, but surely I'd hope he'd at least admit her for hydration. Unless high ammonia levels are critical they usually just try to hydrate them down. I'm still aghast that she wasn't admitted, but after 16 years of dealing with this kind of thing (docs just blow you off, you're only the mom after all and they are Doctors with a capital G-o-d ) I shouldn't be surprised. Too the ER docs lie and I have personally see that happen hundreds of times where they minimize the report they give to your doc on the phone (IF they call at all and I've been lied to about that as well) or they lie about what your doc recommended because they disagree or just don't feel like it. Glad she's feeling a little better. Try green tea: not for her, for you. We need all the stress reducers we can get. I always said it's not my kid that stresses me out it's everyone else I have to deal with to get what she needs :)kjmom to De-Arbra age 16complex III (+2 others I forget cos they were less important to the doc) Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

I agree with the stress issue. I get more overwhelmed about having to do everything on my own to get my kids through the viruses because I know the docs just always assume they are "like other kids." I think Dr. Whiteman thought she wasn't too bad and so he left it up to the doctor. My pediatrician wasn't too happy they let her go knowing about the vascular trachea ring issue. But, she tends to also look my kids over and if it's viral, send them on their way, assuming all will get better on its own. The biggest frustration I have is that many of you have doctors that assume keeping the kids hydrated is important, rather than like mine, think it is only necessary to deal with only AFTER dehydration is bad enough. My kids have to put NO urine out over 24 hours or barely any (Porrah wore 2 diapers in a 24 hr period and was stated to be doing good enough to not need an IV), have no tears, AND the lab results have to be very low to use an IV to treat. By this point they would be fighting for their lives and probably too late to stop a stroke. I plan to discuss this issue with Dr. Whiteman when I go see him again in April. Asenath is falling ill now too with croupy sounding coughs. Her lungs sounded whistley this morning so I took her to her pediatrician and was sent home with an assumption that all will be ok. No meds offered, just keep doing what I am doing... I love my pediatrician and know she is the best around for knowledge on Mito, but she still doesn't understand kids with Mito need more help. At least Asenath has a g-tube so I can add more liquids. Darla: mommy to Asenath, Zipporrah, and the gang Darla- Trachea ring/ER visit In a message dated 3/25/04 5:13:14 PM Pacific Standard Time, Mito writes: Wouldn't Dr. Whiteman have called me and prescribed a med for acidosis if the ammonia suggests it? Not necessarily if the lactic acid was OK, but surely I'd hope he'd at least admit her for hydration. Unless high ammonia levels are critical they usually just try to hydrate them down. I'm still aghast that she wasn't admitted, but after 16 years of dealing with this kind of thing (docs just blow you off, you're only the mom after all and they are Doctors with a capital G-o-d ) I shouldn't be surprised. Too the ER docs lie and I have personally see that happen hundreds of times where they minimize the report they give to your doc on the phone (IF they call at all and I've been lied to about that as well) or they lie about what your doc recommended because they disagree or just don't feel like it. Glad she's feeling a little better. Try green tea: not for her, for you. We need all the stress reducers we can get. I always said it's not my kid that stresses me out it's everyone else I have to deal with to get what she needs :)kjmom to De-Arbra age 16complex III (+2 others I forget cos they were less important to the doc) Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com