Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Hey there everyone! I have just spent a few hours reading back through the last couple of days worth of posts. Things have sure been busy with you all since I was last able to check out the site. Our computer died. We have a new one now AND high speed internet so I am getting back into the swing of things! I see quite a few new names! I believe my husband stumbled across the site and posted about Mimi being in the hospital over Thanksgiving. She got a virus that just wiped her out. The reason I mention this is because something about it still confuses me a little. Our Pediatrician was concerned because even though she was dehydrated when she came in, he said he has seen kids with worse dehydration in much better shape. She was so lethargic she couldn't even walk. Her BS was normal and she was spilling ketones. That's really all the info I have. After a night on fluids she was much better and allowed to go home. She continued to have diarrhea for several days after but that was probably because of the strong antibiotics they pumped her full of. Is this just normal for SGA/RSS kids to have a sickness affect them so severely? Our ped says he can only figure that she really had no reserves to fight the virus with. He kept hoping she would produce a fever to fight it off but she couldn't. Maybe it's nothing but it keeps bugging me. We took the kids to NY to see Dr. H in December. It was a long visit (5 1/2hrs) but since we traveled from South Carolina we didn't mind. She said that Mimi looked good and sent us with a long list of tests to have done before starting her on GHT. She said Crosby needed to gain some weight. We had tried Periactin several times before but it gave him diarrhea so we stopped giving it to him. When she heard this she said something was probably wrong with the bottle I had and to get another and try it again. It worked! He has gained almost three pounds since our visit! I can't believe it! She also refered us to a new endo. I had posted before about what a joke the endo we saw in ton had been. He really seemed to know nothing about how to treat sga/rss, at least not the way dr. H does. Among many other things he said it didn't matter what or how much my kids ate during the day, what was important was what they ate right before bed so I should offer them something they can't refuse such as cookies, icecream, cake, etc. I agree that calories are important and at certain times we do what we have to do but this really sent up a red flag with me. He also said that Mimi was too tall for GH (not true) and he would have already started Crosby on GH without any testing, bone age, or concern for catch up growth. When I told Dr. H about this she rolled her eyes and I could tell she thought he was nuts. I also asked him if he had any other RSS or SGA patients and he said yes in a way that made me think he was lying. Are there any members here from South Carolina besides me? Also, on a side note, while in Toys R Us in Savannah Ga. recently I saw a little boy who quite obviously had RSS. Is there anyone from Savannah on here? So Dr. H reccomended another Endo named Dr. Bolbey. As it turns out she is in the exact same office as the bad endo (they share exam rooms!). I asked Dr. H if she thought his feelings would be hurt and she said - " Probably, do you care? " Good question. I said no. She said good. So we go to see the new endo on the 24th. Before moving to ton she was in the same building in NY with Dr. H and knows her personally. She has not treated RSS/SGA kids before but was fascinated with Dr. H's work and according to Dr.H is very excited to meet us and be able to work closely with her. We will go back to NY once a year since that is all we can afford, but I am comfortable with that. The hotel was the most expensive part of our stay. We stayed at the guest residence at the hosp. It was close to Dr. H but far from everything else. Does anyone have any suggestions about other places to stay? Also, had anyone else had to work with Dr. Mercado in Dr. H's office? She saw us before Dr. H came in and took lots of incorrect measurements and wrote a lot of incorrect notes in the kids charts. It took Dr. H about an hour and a half to correct it all. I have signed both of the kids up for a toddler gymnastics class and they love it! Crosby is such a little monkey! Like I said it has been a while since I last posted.(October maybe) Have I missed anything BIG? I hope everyone is doing well! I hope my post isn't too all over the place to understand. I'm not exactly a linear thinker! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 wellcome back glad to have you back. cara mom to jacob crosbysmommy wrote: Hey there everyone! I have just spent a few hours reading back through the last couple of days worth of posts. Things have sure been busy with you all since I was last able to check out the site. Our computer died. We have a new one now AND high speed internet so I am getting back into the swing of things! I see quite a few new names! I believe my husband stumbled across the site and posted about Mimi being in the hospital over Thanksgiving. She got a virus that just wiped her out. The reason I mention this is because something about it still confuses me a little. Our Pediatrician was concerned because even though she was dehydrated when she came in, he said he has seen kids with worse dehydration in much better shape. She was so lethargic she couldn't even walk. Her BS was normal and she was spilling ketones. That's really all the info I have. After a night on fluids she was much better and allowed to go home. She continued to have diarrhea for several days after but that was probably because of the strong antibiotics they pumped her full of. Is this just normal for SGA/RSS kids to have a sickness affect them so severely? Our ped says he can only figure that she really had no reserves to fight the virus with. He kept hoping she would produce a fever to fight it off but she couldn't. Maybe it's nothing but it keeps bugging me. We took the kids to NY to see Dr. H in December. It was a long visit (5 1/2hrs) but since we traveled from South Carolina we didn't mind. She said that Mimi looked good and sent us with a long list of tests to have done before starting her on GHT. She said Crosby needed to gain some weight. We had tried Periactin several times before but it gave him diarrhea so we stopped giving it to him. When she heard this she said something was probably wrong with the bottle I had and to get another and try it again. It worked! He has gained almost three pounds since our visit! I can't believe it! She also refered us to a new endo. I had posted before about what a joke the endo we saw in ton had been. He really seemed to know nothing about how to treat sga/rss, at least not the way dr. H does. Among many other things he said it didn't matter what or how much my kids ate during the day, what was important was what they ate right before bed so I should offer them something they can't refuse such as cookies, icecream, cake, etc. I agree that calories are important and at certain times we do what we have to do but this really sent up a red flag with me. He also said that Mimi was too tall for GH (not true) and he would have already started Crosby on GH without any testing, bone age, or concern for catch up growth. When I told Dr. H about this she rolled her eyes and I could tell she thought he was nuts. I also asked him if he had any other RSS or SGA patients and he said yes in a way that made me think he was lying. Are there any members here from South Carolina besides me? Also, on a side note, while in Toys R Us in Savannah Ga. recently I saw a little boy who quite obviously had RSS. Is there anyone from Savannah on here? So Dr. H reccomended another Endo named Dr. Bolbey. As it turns out she is in the exact same office as the bad endo (they share exam rooms!). I asked Dr. H if she thought his feelings would be hurt and she said - " Probably, do you care? " Good question. I said no. She said good. So we go to see the new endo on the 24th. Before moving to ton she was in the same building in NY with Dr. H and knows her personally. She has not treated RSS/SGA kids before but was fascinated with Dr. H's work and according to Dr.H is very excited to meet us and be able to work closely with her. We will go back to NY once a year since that is all we can afford, but I am comfortable with that. The hotel was the most expensive part of our stay. We stayed at the guest residence at the hosp. It was close to Dr. H but far from everything else. Does anyone have any suggestions about other places to stay? Also, had anyone else had to work with Dr. Mercado in Dr. H's office? She saw us before Dr. H came in and took lots of incorrect measurements and wrote a lot of incorrect notes in the kids charts. It took Dr. H about an hour and a half to correct it all. I have signed both of the kids up for a toddler gymnastics class and they love it! Crosby is such a little monkey! Like I said it has been a while since I last posted.(October maybe) Have I missed anything BIG? I hope everyone is doing well! I hope my post isn't too all over the place to understand. I'm not exactly a linear thinker! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 hey shannon!!! i have been wondering what had happen to you!!! glad to see you are back online!! ((HUGS)) glad to hear everything is now going in the right direction for you guys and the kids care!! are you guys going to convention agin this year? i am signing christopher up for gymnastics as well this month. jodie c Quote Link to comment Share on other sites More sharing options...
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