Guest guest Posted August 15, 2005 Report Share Posted August 15, 2005 Manon, Yes, THANK YOU, I did see your earlier post and retrieved it early this morning to make the call to Dr. Trovato. I left a message at 7:20 though I figured the office wouldn't open until 8:30. I am so anxious to get started and still racking my brain to find myself at fault somehow. We did at CT of Liliana's head and neck for craniosynistosis at 6 months. We, and we convinced the pediatrician, were concerned at the time that her physical development seemed to be so one-sided. When we got the " all-clear " sign from the CT results, the neuro did refer us to Kennedy-Krieger but we thought it was physical therapy to work the left side of her body. Just a few days after the phone call granting us a " sigh of relief " , Liliana began using her left side as much as her right (though she still doesn't roll over from belly to back from right to left). So we convinced ourselves that she was fine and again, her pediatrician said not to worry about the flatness then. Also, just wanted to clarify a statement I made about my DD's pediatrician. I mentioned that he said recently that a few months ago banding would have been an option. But he DID NOT say it at the 4 or 6 month appointments. At two months he noticed the flat spot and suggested re-positioning. At six months, the flatness had spread to the whole back but not evenly, he was already saying it was too late. The reason I took my daughter to see him recently was about her not crawling. (She just started inching a little over the weekend.) I took advantage of the extra attention he was giving us and asked him again about the flatness. That's when he said banding could have been done but now the fontanel's almost closed. BTW: He was giving us extra attention because I told him I had taken Liliana to another pediatrician for a second opinion about crawling. This pedi. diagnosed Liliana with low tone. She referred me to Infants and Toddlers. When I mentioned Kennedy-Krieger, she said she didn't think that was necessary yet. Unfortunately, her opinion about DD's flat head was old-school as well saying it will still round out on its own. One good thing about the 2nd pediatrician was that she referred me to the Infants and Toddlers program for my county in land. I have an earful to say about their assessment program. I say, " my daughter's not crawling " and they go through a litany of questions about her eating habits, bed-time routine, speech development, you name it. Despite the quiet, calm delivery style of the social worker, I felt attacked for my daughter's 25% developmental delay. Her progress is according to their scale of course. She qualified for the free program but participating would also be submitting her to being tracked by the school and state systems. A friend told me because they're funded at both the federal and state levels, they need work to justify future funding and the only way to track progress is to keep detailed records of each case. But she has turned down the program for her son as well. We went back to my daughter's original pediatrician and he suggested a neurologist if we are concerned about our privacy. This pedi. said she may be behind in a few things but is definitely on track in others and also reported that it was too soon for some of the things that the Infants and Toddlers program was expecting her to do. He checked her reflexes and arm strength and said her tone was good. I could have gotten further faster with the internet than with all of these phone calls, doctor visits and the in-home assessment. At least I finally got here after such varying opinions from the " professionals. " Now to pursue the parental guilt phase, I am going to search the links I was given on several handouts from my county's healthy family program. They offer a new mom's support group which I did use and found to be quite helpful. But being inundated with baby care info, not to mention actually taking care of the baby, the folder I had placed them got slipped into a file cabinet to be read later " when I had more time. " I got the folder out last night when I was losing sleep over my DD's brachio. Liliana's awake so I must put on a happy face for her. ~ Columbia, MD > > > Now that I finally realize Liliana definitely needs correction for > > her > > > brachy, I echo anxieties for the next steps. > > > > > > Her pediatrician said her front fontanel is almost closed so I am > > > hoping that it is not too late for treatment. He actually said > > that a > > > few months ago, banding would have been an option but at her 3, 4, > > 6 > > > month appointments despite my concerns, did not send me on to an > > > orthotist. > > > > > > After looking at the helmet selection, I'm a little overwhelmed. I > > see > > > one Docband labeled for brachy, is that the only one? Of course we > > > don't have an official diagnosis yet. I don't think Liliana has > > much > > > assymetry in her face including her ears, but she does have a > > slight > > > head tilt. It may be that I'm used to the way she looks. > > > > > > Any ideas on how far in advance appointments are made? I know you > > all > > > have suffered what others and I are now facing and the 5 month old > > > babies need attention as much as my nearly 11-month old. Is there > > any > > > chance though that because of her age, my daughter will be " fast- > > tracked. " > > > > > > , > > > & Liliana > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2005 Report Share Posted August 15, 2005 Manon, Yes, THANK YOU, I did see your earlier post and retrieved it early this morning to make the call to Dr. Trovato. I left a message at 7:20 though I figured the office wouldn't open until 8:30. I am so anxious to get started and still racking my brain to find myself at fault somehow. We did at CT of Liliana's head and neck for craniosynistosis at 6 months. We, and we convinced the pediatrician, were concerned at the time that her physical development seemed to be so one-sided. When we got the " all-clear " sign from the CT results, the neuro did refer us to Kennedy-Krieger but we thought it was physical therapy to work the left side of her body. Just a few days after the phone call granting us a " sigh of relief " , Liliana began using her left side as much as her right (though she still doesn't roll over from belly to back from right to left). So we convinced ourselves that she was fine and again, her pediatrician said not to worry about the flatness then. Also, just wanted to clarify a statement I made about my DD's pediatrician. I mentioned that he said recently that a few months ago banding would have been an option. But he DID NOT say it at the 4 or 6 month appointments. At two months he noticed the flat spot and suggested re-positioning. At six months, the flatness had spread to the whole back but not evenly, he was already saying it was too late. The reason I took my daughter to see him recently was about her not crawling. (She just started inching a little over the weekend.) I took advantage of the extra attention he was giving us and asked him again about the flatness. That's when he said banding could have been done but now the fontanel's almost closed. BTW: He was giving us extra attention because I told him I had taken Liliana to another pediatrician for a second opinion about crawling. This pedi. diagnosed Liliana with low tone. She referred me to Infants and Toddlers. When I mentioned Kennedy-Krieger, she said she didn't think that was necessary yet. Unfortunately, her opinion about DD's flat head was old-school as well saying it will still round out on its own. One good thing about the 2nd pediatrician was that she referred me to the Infants and Toddlers program for my county in land. I have an earful to say about their assessment program. I say, " my daughter's not crawling " and they go through a litany of questions about her eating habits, bed-time routine, speech development, you name it. Despite the quiet, calm delivery style of the social worker, I felt attacked for my daughter's 25% developmental delay. Her progress is according to their scale of course. She qualified for the free program but participating would also be submitting her to being tracked by the school and state systems. A friend told me because they're funded at both the federal and state levels, they need work to justify future funding and the only way to track progress is to keep detailed records of each case. But she has turned down the program for her son as well. We went back to my daughter's original pediatrician and he suggested a neurologist if we are concerned about our privacy. This pedi. said she may be behind in a few things but is definitely on track in others and also reported that it was too soon for some of the things that the Infants and Toddlers program was expecting her to do. He checked her reflexes and arm strength and said her tone was good. I could have gotten further faster with the internet than with all of these phone calls, doctor visits and the in-home assessment. At least I finally got here after such varying opinions from the " professionals. " Now to pursue the parental guilt phase, I am going to search the links I was given on several handouts from my county's healthy family program. They offer a new mom's support group which I did use and found to be quite helpful. But being inundated with baby care info, not to mention actually taking care of the baby, the folder I had placed them got slipped into a file cabinet to be read later " when I had more time. " I got the folder out last night when I was losing sleep over my DD's brachio. Liliana's awake so I must put on a happy face for her. ~ Columbia, MD > > > Now that I finally realize Liliana definitely needs correction for > > her > > > brachy, I echo anxieties for the next steps. > > > > > > Her pediatrician said her front fontanel is almost closed so I am > > > hoping that it is not too late for treatment. He actually said > > that a > > > few months ago, banding would have been an option but at her 3, 4, > > 6 > > > month appointments despite my concerns, did not send me on to an > > > orthotist. > > > > > > After looking at the helmet selection, I'm a little overwhelmed. I > > see > > > one Docband labeled for brachy, is that the only one? Of course we > > > don't have an official diagnosis yet. I don't think Liliana has > > much > > > assymetry in her face including her ears, but she does have a > > slight > > > head tilt. It may be that I'm used to the way she looks. > > > > > > Any ideas on how far in advance appointments are made? I know you > > all > > > have suffered what others and I are now facing and the 5 month old > > > babies need attention as much as my nearly 11-month old. Is there > > any > > > chance though that because of her age, my daughter will be " fast- > > tracked. " > > > > > > , > > > & Liliana > > > > > > > > For more plagio info Quote Link to comment Share on other sites More sharing options...
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