Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Hi Tonya! I'm actually so cross, I don't know if you red my other E-mails! The Endo stated that has'nt got RSS. He says he has a few other patients with RSS, and she does not come near to them. (I never made contact or have seen another child with RSS in South-Africa) Well with the physical I watched him, and noticed how he looked for the clinical signs and symptoms, in which she has a few relations, looks as if he knows what he is doing. We will start blood tests and studies soon. So ya! 8 years wasted completely, whereas if they made the right diagnoses then, we could have been thurther down the line and not at square one again. She was wrongly diagnosed by birth, Then at 2 years, then at 5 years do you think we will get the right diagnose now? Elize ps. How is Aubrey doing? --- Tonya Bartlett wrote: > Elize, > It was wonderful hearing from you again. You > mentioned the nosebleeds due to illiadin. We had > that same problem with rhinocort. even after she > quit taking it, it took a while for her to quit > having nosebleeds. > Tonya > > Inga wrote: > For my husband he only needed one until he's 65, but > perhaps it's different > for young children? Did she actually get the > vaccine then still get > pneumonia? I'm glad to hear the vitamins are > helping! I used those when > my son kept getting sleep apnea before his > tonsillectomy. Probably a good > idea to remember as flu season is approaching... > > Inga > > At 09:57 AM 9/7/2005 -0700, you wrote: > > > >Dear Inga > > > >Yes we use to administer Pneumovax, but is > currently > >not available in South Africa at the moment, only > the > >flu injection available currently. > > > >Elize > > > >> > > >> >> Aubrey is 3 1/2 now and finally weighs 23 lbs > > >> and > >> >> it has been a chore getting her there. I think > >> she > >> >> last measured at 34 inches. I don't know how I > >> all > >> >> of a sudden forgot that because I normally > obsess > >> >> over her weight and what not. Aubrey, much > like > >> >> , seems to get pneumonia pretty > >> frequently. > >> >> Luckily, when she gets it the ped is pretty > good > >> >> about letting her come back for her > antibiotics > >> in > >> >> the clinic and not admitting her. We've got > the > >> >> nebulizer and everything at home so it works > out > >> >> really well. However, there were about 4 times > >> she > >> >> had to be admitted to get IV antibiotics to > >> treat > === message truncated === ______________________________________________________ Yahoo! for Good Watch the Hurricane Katrina Shelter From The Storm concert http://advision.webevents.yahoo.com/shelter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2005 Report Share Posted September 17, 2005 Elize, I hadn't been posting for a while, trying to catch up on homework and whatnot, but was excited to hear from you. I'm sorry that you guys are back to square one again.Hopefully they will figure out the right diagnosis. I know for parents it seems very important to have a cause for what is causing these problems with our children. Aubrey's doing good, croupy again though. It was wonderful hearing from you again. Tonya Elize Visser wrote: Hi Tonya! I'm actually so cross, I don't know if you red my other E-mails! The Endo stated that has'nt got RSS. He says he has a few other patients with RSS, and she does not come near to them. (I never made contact or have seen another child with RSS in South-Africa) Well with the physical I watched him, and noticed how he looked for the clinical signs and symptoms, in which she has a few relations, looks as if he knows what he is doing. We will start blood tests and studies soon. So ya! 8 years wasted completely, whereas if they made the right diagnoses then, we could have been thurther down the line and not at square one again. She was wrongly diagnosed by birth, Then at 2 years, then at 5 years do you think we will get the right diagnose now? Elize ps. How is Aubrey doing? --- Tonya Bartlett wrote: > Elize, > It was wonderful hearing from you again. You > mentioned the nosebleeds due to illiadin. We had > that same problem with rhinocort. even after she > quit taking it, it took a while for her to quit > having nosebleeds. > Tonya > > Inga wrote: > For my husband he only needed one until he's 65, but > perhaps it's different > for young children? Did she actually get the > vaccine then still get > pneumonia? I'm glad to hear the vitamins are > helping! I used those when > my son kept getting sleep apnea before his > tonsillectomy. Probably a good > idea to remember as flu season is approaching... > > Inga > > At 09:57 AM 9/7/2005 -0700, you wrote: > > > >Dear Inga > > > >Yes we use to administer Pneumovax, but is > currently > >not available in South Africa at the moment, only > the > >flu injection available currently. > > > >Elize > > > >> > > >> >> Aubrey is 3 1/2 now and finally weighs 23 lbs > > >> and > >> >> it has been a chore getting her there. I think > >> she > >> >> last measured at 34 inches. I don't know how I > >> all > >> >> of a sudden forgot that because I normally > obsess > >> >> over her weight and what not. Aubrey, much > like > >> >> , seems to get pneumonia pretty > >> frequently. > >> >> Luckily, when she gets it the ped is pretty > good > >> >> about letting her come back for her > antibiotics > >> in > >> >> the clinic and not admitting her. We've got > the > >> >> nebulizer and everything at home so it works > out > >> >> really well. However, there were about 4 times > >> she > >> >> had to be admitted to get IV antibiotics to > >> treat > === message truncated === ______________________________________________________ Yahoo! for Good Watch the Hurricane Katrina Shelter From The Storm concert http://advision.webevents.yahoo.com/shelter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2005 Report Share Posted September 20, 2005 Hi Tonya1 will be receiving her revision pin in her left femur on the 11th of October and the tests will be done on the same day, I thought it to be best that way, for her not to be kept nil per mouth for more than one day. The pin she currently has in situ, is hurting her so much, we can not wait for the GH. rather get it done and over with. ps. Thanks for your note Elize --- Tonya Bartlett wrote: > Elize, > I hadn't been posting for a while, trying to catch > up on homework and whatnot, but was excited to hear > from you. I'm sorry that you guys are back to square > one again.Hopefully they will figure out the right > diagnosis. I know for parents it seems very > important to have a cause for what is causing these > problems with our children. Aubrey's doing good, > croupy again though. It was wonderful hearing from > you again. > Tonya > > Elize Visser wrote: > Hi Tonya! > > I'm actually so cross, I don't know if you red my > other E-mails! The Endo stated that has'nt > got RSS. He says he has a few other patients with > RSS, and she does not come near to them. (I never > made > contact or have seen another child with RSS in > South-Africa) > > Well with the physical I watched him, and noticed > how > he looked for the clinical signs and symptoms, in > which she has a few relations, looks as if he knows > what he is doing. We will start blood tests and > studies soon. > > So ya! 8 years wasted completely, whereas if they > made the right diagnoses then, we could have been > thurther down the line and not at square one again. > She was wrongly diagnosed by birth, Then at 2 years, > then at 5 years do you think we will get the right > diagnose now? > > Elize ps. How is Aubrey doing? > > --- Tonya Bartlett > wrote: > > > Elize, > > It was wonderful hearing from you again. You > > mentioned the nosebleeds due to illiadin. We had > > that same problem with rhinocort. even after she > > quit taking it, it took a while for her to quit > > having nosebleeds. > > Tonya > > > > Inga wrote: > > For my husband he only needed one until he's 65, > but > > perhaps it's different > > for young children? Did she actually get the > > vaccine then still get > > pneumonia? I'm glad to hear the vitamins are > > helping! I used those when > > my son kept getting sleep apnea before his > > tonsillectomy. Probably a good > > idea to remember as flu season is approaching... > > > > Inga > > > > At 09:57 AM 9/7/2005 -0700, you wrote: > > > > > >Dear Inga > > > > > >Yes we use to administer Pneumovax, but is > > currently > > >not available in South Africa at the moment, only > > the > > >flu injection available currently. > > > > > >Elize > > > > > >> >Elize, > > >> > > > >> > > > >> > > > >> >My goodness your daughter is a trooper!! I > > think I > > >> must have missed how old > > >> >she was in an earlier post, can you tell us > > again > > >> how old she is? I too > > >> >think good vitamins and minerals can make a > > world > > >> of difference in the > > >> >immune system!! My 3 yr old Alyssa has her > > first > > >> day of preschool today and > > >> >I was just thinking that I am not looking > > forward > > >> to all the colds etc, that > > >> >come with a child first entering school!! > > >> > > > >> > > > >> > > > >> >I have never heard of post nasal drip as a > > >> characteristic of children with > > >> >RSS. Can you tell me where you found that > > >> information? It's very > > >> >interesting. > > >> > > > >> > > > >> > > > >> >Dayna > > >> > > > >> > _____ > > >> > > > >> >From: RSS-Support > > >> [mailto:RSS-Support ] On > > >> >Behalf Of Elize Visser > > >> >Sent: Wednesday, September 07, 2005 7:09 AM > > >> >To: RSS-Support > > >> >Subject: Re: Tonya Bartlett > > >> > > > >> > > > >> > > > >> >Hi Tonya! > > >> > > > >> >Tonya use to get pneumonia so often > > >> bacause > > >> >she had a highly selective IgG 2 Immune > > >> difficiency, > > >> >only diagnosed when she was 5years old. We > > tried > > >> to > > >> >give Berrygloben injections, with should > better > > the > > >> >immune system, without any success. From the > > age > > >> of > > >> >5, They prescribed Pollygam (Human > > immunoglobulin) > > >> >once every 3 weaks IVI. Then she started to > get > > >> >better for 6 months, and then 1 year and till > > she > > >> was > > >> >well enough to have a op to remove part of her > > >> right > > >> >lung in which she contracted complications due > > to > > >> the > > >> >chronic pneumonia. Polygam made the > difference. > > > > >> And > > >> >also vitamin supplements. I used vitamin C, > all > > >> the B > > >> >vitamins. cod liver oil, and vitamin A which > > >> clearly > > >> >improved hes skin integraty. Vitamin a can > only > > be > > >> >given once every 6 months. 1 tablet a day for > 14 > > >> days. > > >> >One ting that may contribute to the pneumonia > is > === message truncated === __________________________________ Yahoo! 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