Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 - perhaps the tone you intended is not what I read in email. But " What's going on! " sounded pretty strong to me. Also, " over anxious " in your opinion may be a very concerned and loving parent in their opinion. And just because they are posting to a group asking questions does not mean they are sharing those concerns with their child. And in a perfect world, yes - the specialists would instantly be able to diagnose underlying issues. But the fact is - none of the doctors we have seen have ever seen a patient with BPES. So having information to take in, having questions to ask, etc. is very helpful to those of us in medical communities that may not be as familiar with our children's issues. --- JULIE IKEN <kookie61@...> wrote: > A very defensive reply April, I gave an opinion > based on my feeling about all the expressed concerns > parents appear to have of thier childrens health on > this site. > Nothing wrong with that of course, it just strikes > me that a number of parents seem 'over anxious' > about thier kids and BPES. One sure way of making a > child worried is an over anxious parent so concerned > with the slightest thing but I'm talking about BPES > only. Any other underlying disease process other > than BPES is best left to a doctor to diagnose. > > > april Eisele <aprileisele@...> wrote: > - I don't like your message here. As a > parent I > am not LOOKING for something wrong with my child. I > have a child diagnosed with BPES that has other > symptoms that are not in line with BPES. This > community is a good resource, or was, to ask if > other > parents are dealing with the same things. Perhaps > my > child was misdiagnosed and does not really have BPES > - > that would explain the other symptoms we are seeing. > > If another parent has information that can help in > anyway then what does it hurt to ask? > > I don't think anyone is insinuating that ALL of > these > " side " problems are related to BPES. Quite the > contrary - I think I see parents questioning if > there > is something ELSE going on with their kids. > > April > > > --- JULIE IKEN <kookie61@...> wrote: > > > I have Bleph and my strongest ability at school > was > > spelling and it still is something I don't have a > > problem with. It seems to me that recently > members > > on this site are looking for the slightest thing > > wrong with thier children. What's going on! > > > > > > allygirl1967 <kaldi@...> wrote: > > > > Hi, my younger son who has BLEPH ,is 8 and is > > struggling with school > > work at the moment,his reading is getting better > but > > he still has a > > lot of difficulty with his spelling.Myself and my > > other son with BLEPH > > also had trouble with spelling.I was just > wondering > > if anyone else > > with BLEPH had this problem.My other 2 children > dont > > have BLEPH and > > they are both excellent at spelling. > > Thanks Ally. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 April drop the attitude, I'm entitled to an opinion as much as anyone else here.april Eisele <aprileisele@...> wrote: - perhaps the tone you intended is not what Iread in email. But "What's going on!" sounded prettystrong to me. Also, "over anxious" in your opinionmay be a very concerned and loving parent in theiropinion. And just because they are posting to a groupasking questions does not mean they are sharing thoseconcerns with their child. And in a perfect world, yes - the specialists wouldinstantly be able to diagnose underlying issues. Butthe fact is - none of the doctors we have seen haveever seen a patient with BPES. So having informationto take in, having questions to ask, etc. is veryhelpful to those of us in medical communities that maynot be as familiar with our children's issues. --- JULIE IKEN <kookie61@...> wrote:> A very defensive reply April, I gave an opinion> based on my feeling about all the expressed concerns> parents appear to have of thier childrens health on> this site.> Nothing wrong with that of course, it just strikes> me that a number of parents seem 'over anxious'> about thier kids and BPES. One sure way of making a> child worried is an over anxious parent so concerned> with the slightest thing but I'm talking about BPES> only. Any other underlying disease process other> than BPES is best left to a doctor to diagnose.> > > april Eisele <aprileisele@...> wrote:> - I don't like your message here. As a> parent I> am not LOOKING for something wrong with my child. I> have a child diagnosed with BPES that has other> symptoms that are not in line with BPES. This> community is a good resource, or was, to ask if> other> parents are dealing with the same things. Perhaps> my> child was misdiagnosed and does not really have BPES> -> that would explain the other symptoms we are seeing.> > If another parent has information that can help in> anyway then what does it hurt to ask? > > I don't think anyone is insinuating that ALL of> these> "side" problems are related to BPES. Quite the> contrary - I think I see parents questioning if> there> is something ELSE going on with their kids.> > April> > > --- JULIE IKEN <kookie61@...> wrote:> > > I have Bleph and my strongest ability at school> was> > spelling and it still is something I don't have a> > problem with. It seems to me that recently> members> > on this site are looking for the slightest thing> > wrong with thier children. What's going on! > > > > > > allygirl1967 <kaldi@...> wrote:> > > > Hi, my younger son who has BLEPH ,is 8 and is> > struggling with school > > work at the moment,his reading is getting better> but> > he still has a > > lot of difficulty with his spelling.Myself and my> > other son with BLEPH > > also had trouble with spelling.I was just> wondering> > if anyone else > > with BLEPH had this problem.My other 2 children> dont> > have BLEPH and > > they are both excellent at spelling.> > Thanks Ally.> > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 I honestly do not have an attitude! Please don't read " tone " into my email. It was not intended. You are very much entitled to your opinion. I was just trying to point out that some of us need help via information/opinions of other parents so we can guide our doctors who may not be as informed on certain conditions. --- JULIE IKEN <kookie61@...> wrote: > April drop the attitude, I'm entitled to an opinion > as much as anyone else here. > > april Eisele <aprileisele@...> wrote: - > perhaps the tone you intended is not what I > read in email. But " What's going on! " sounded > pretty > strong to me. Also, " over anxious " in your opinion > may be a very concerned and loving parent in their > opinion. And just because they are posting to a > group > asking questions does not mean they are sharing > those > concerns with their child. > > And in a perfect world, yes - the specialists would > instantly be able to diagnose underlying issues. > But > the fact is - none of the doctors we have seen have > ever seen a patient with BPES. So having > information > to take in, having questions to ask, etc. is very > helpful to those of us in medical communities that > may > not be as familiar with our children's issues. > > > > --- JULIE IKEN <kookie61@...> wrote: > > > A very defensive reply April, I gave an opinion > > based on my feeling about all the expressed > concerns > > parents appear to have of thier childrens health > on > > this site. > > Nothing wrong with that of course, it just > strikes > > me that a number of parents seem 'over anxious' > > about thier kids and BPES. One sure way of making > a > > child worried is an over anxious parent so > concerned > > with the slightest thing but I'm talking about > BPES > > only. Any other underlying disease process other > > than BPES is best left to a doctor to diagnose. > > > > > > april Eisele <aprileisele@...> wrote: > > - I don't like your message here. As a > > parent I > > am not LOOKING for something wrong with my child. > I > > have a child diagnosed with BPES that has other > > symptoms that are not in line with BPES. This > > community is a good resource, or was, to ask if > > other > > parents are dealing with the same things. Perhaps > > my > > child was misdiagnosed and does not really have > BPES > > - > > that would explain the other symptoms we are > seeing. > > > > If another parent has information that can help in > > anyway then what does it hurt to ask? > > > > I don't think anyone is insinuating that ALL of > > these > > " side " problems are related to BPES. Quite the > > contrary - I think I see parents questioning if > > there > > is something ELSE going on with their kids. > > > > April > > > > > > --- JULIE IKEN <kookie61@...> wrote: > > > > > I have Bleph and my strongest ability at school > > was > > > spelling and it still is something I don't have > a > > > problem with. It seems to me that recently > > members > > > on this site are looking for the slightest thing > > > wrong with thier children. What's going on! > > > > > > > > > allygirl1967 <kaldi@...> wrote: > > > > > > Hi, my younger son who has BLEPH ,is 8 and is > > > struggling with school > > > work at the moment,his reading is getting better > > but > > > he still has a > > > lot of difficulty with his spelling.Myself and > my > > > other son with BLEPH > > > also had trouble with spelling.I was just > > wondering > > > if anyone else > > > with BLEPH had this problem.My other 2 children > > dont > > > have BLEPH and > > > they are both excellent at spelling. > > > Thanks > Ally. > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Hi April, Totally agree with you. It's so easy to blame BPES for every little thing " wrong " with the child. What's so awesome about this group is that you can post your concerns, opinions, or whatever observations and receive helpful feedback. So, , relax. No need to be harsh and say " drop the attitude " to a fellow member who shares a common concern with you. We are all in this together to get better educated of this condition and to arm our children with strengths and knowledge because they are the future. Ally, I and my 2 sisters have bleph and we ALL excelled in spelling! Spelling is a tough topic in school, so any difficulties with this topic is a natural thing, regardless the size of one's eyes. You always hear how children pick up parent's habits, and perhaps, this is one of those cases...like son, like mommy! Talk with his teacher and a little extra help from tutors may help. Take a deep breath and know that your son will go to college even if he is a lousy speller! :-) Keep your smiles on folks and let's help each other out! MK > > > > > > > > Hi, my younger son who has BLEPH ,is 8 and is > > > > struggling with school > > > > work at the moment,his reading is getting better > > > but > > > > he still has a > > > > lot of difficulty with his spelling.Myself and > > my > > > > other son with BLEPH > > > > also had trouble with spelling.I was just > > > wondering > > > > if anyone else > > > > with BLEPH had this problem.My other 2 children > > > dont > > > > have BLEPH and > > > > they are both excellent at spelling. > > > > Thanks > > Ally. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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