Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hello Nita and welcome. Well, it sounds like it could be scaphocephaly - of course, it is hard to tell for sure without actually seeing her. I see that Debbie gave you some good links to check out. Do you and your husband have the option of taking her to see a specialist? It sounds like she might (I stress MIGHT) have some issues going on if she is abnormally small and has an unusual head shape. Good luck and please let us know how things are going and what you are able to find out. Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Hi Nita, Wow - I can really understand your frustration. I am a stepmom myself and my stepson lives with his mom in Florida most of the time. Stepson was born before hubby and I got married and he was never married to stepson's mom. They have joint custody thanks to hubby's efforts in court and we see him as often as we can. I know what you mean about feeling helpless. My stepson has terrible speech delays due to some very significant ear infections. His mother chose to deny the problem and did not seek proper treatment (in my opinion). Now at 6 years old he has some very serious speech problems that are only getting worse. My own daugther had very serious ear infections. When we took her in to the ENT she hardly had any hearing. She got tubes immediately and now the ear infections are over and her hearing is normal. I wish I could have done that for stepson (who, incidently I absolutely adore and love). It sounds like you are a compassionate person who really wants to help. I truly hope that you get that opportunity. Please keep us posted and please feel free to email me anytime (my email addy is marcisch@...)! Marci (Mom to ) Oklahoma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 Thanks for the warm welcome everyone. I don't see as we have a chance to do anything at this point. The mother has kept her away from us until now, at a child support hearing. First we are trying to prove paternity (this all happened before our marriage) and then we will go from there. She refuses to speak to us, so I am terrified that this little girl is not going to get the medical help she needs. Whether she is proven to be my husbands or not, I want to help her. From alot of the information I have gathered today, this type of abnormality is often caused by premature birth..is this true? She was less than 6 pounds when born I believe, and at 9 months old, weighs probably 15 pounds, does not speak or verbalize, or act like a normal 9 month old. Another thing, if the baby was a preemie, she can not be my husbands child, in which case we would lose all hope of helping her. As it stands, we don't find out until August, when she will be 11 months old. I fear this is so late in trying to do something to help her, and I am afraid there is already developmental damage done. I feel so helpless right now. My own daughter, who was diagnosed with diabetes at 8 months old and is 10 now, even recognized something wasn't quite right with the baby. So all I can do right now is gather info, and when we go back in front of the judge, present him with the info and ask for some sort of family judgment concerning medical care for her. Sorry this is so long, I am just so upset that her mother doesn't see or want to recognize that something may be wrong with her baby. Thanks Everyone! Nita --- marcisch@... wrote: > Hello Nita and welcome. Well, it sounds like it > could be scaphocephaly - of > course, it is hard to tell for sure without actually > seeing her. I see that > Debbie gave you some good links to check out. Do you > and your husband have > the option of taking her to see a specialist? It > sounds like she might (I > stress MIGHT) have some issues going on if she is > abnormally small and has an > unusual head shape. > > Good luck and please let us know how things are > going and what you are able > to find out. > > Marci (Mom to ) > Oklahoma > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2002 Report Share Posted June 13, 2002 My own daughter, who was diagnosed with diabetes at 8 months old and is 10 now, Hi Nita: I am sorry to hear of the difficult situation your family is currently in. I'm not very familiar with scaphocephaly, it is the least common of the 3 types of plagio abnormal head shapes. I wish I could offer you more tips. I am sorry to hear of your own daughter's diabetes. I too am a diabetic. I'm 27 yrs old now & was diagnosed at age 16. I can imagine how incredibally hard it's been on you & your daughter. I'm assuming you had to give her insulin injections as an infant right? Uggg....How is she doing now healthwise? I hope she's a healthy diabetic, I know how very frustrating and trying it can be some days. But I guess with her young diagnosis, it's just part of her everyday life and she doesn't know any better. Like I say, giving myself my injections are no different than brushing my teeth every day! Just part of life . Please keep us posted on the 9 mos old. You sound like a wonderfully caring person to be so concerned Debbie Abby's mom DOCGrad MI > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Nita, Welcome to the group! I wanted to applaud your efforts on trying to help this child, whether it turns out to be your step child or not- you are a great person for getting involved in a child's life that truly needs a person as caring and understanding as you are. Good luck and I hope that everything turns out for the best interest of the child. ' Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2002 Report Share Posted June 14, 2002 Nita - Is your husband able to speak with the pediatrician? Maybe he could ask if their was a diagnosis or put a bug in the peds ear about the issues you are concerned about. Unfortunetly, most ped aren't very much on the ball when it comes to plagio, bracy,scaph,tort. It's such a shame that your hands are tied when all you are interested in is the child's best interest. I don't understand how this world works sometimes. Dane's mom DOC Grad > > Hello Nita and welcome. Well, it sounds like it > > could be scaphocephaly - of > > course, it is hard to tell for sure without actually > > seeing her. I see that > > Debbie gave you some good links to check out. Do you > > and your husband have > > the option of taking her to see a specialist? It > > sounds like she might (I > > stress MIGHT) have some issues going on if she is > > abnormally small and has an > > unusual head shape. > > > > Good luck and please let us know how things are > > going and what you are able > > to find out. > > > > Marci (Mom to ) > > Oklahoma > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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