Forum Föräldrar: Barn med speciella behov - Medlemstrådar
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  • Medfödd gråstarr (kongenital katarakt), tråd 4

    Fre 14 jan 2011 13:32 Läst 34899 gånger Totalt 128 svar
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  • Fre 14 jan 2011 13:32 #45

    Hello!  I appologize for writing in English being an American living in Stockholm.  I read and speak Swedish fine, but have don't write much/well (it is really just fine to write back in Swedish).  I have a son who is 7 weeks old and a week ago we discovered that he has a cataract fully blocking his vision in one eye.  Presumably it was missed at the check at birth.  We discovered it becasue the eye with the cataract was not growing as large as the good eye (which appears to be normal, no cataract in any case).  So far, we ahve just been to the akuten at St. Eriks following a meeting with a normal doctor.  OUr son is schedule to have an operation next Friday at Astrid LIngren Hospital by a doctor from St. Eriks--Ann-Marie Koekalla (sp?).  I have read the above with much interest and thank all parents for sharing.  Any tips anyone has would be appreciated.  I have the following questions:
    - Is St. Eriks Eye Hospital the best place to have a cataract operation for a baby in Sweden?  Is it good compared to other places elswhere in the world?
    - Does anyone know anyting (good or bad) about the surgon who has been asigned to us--Ann Marie Koekalla (Sp)?
    - Does anyone have a recommendation of a good opthamologist which they have used after the operation in following years with good success?
    - Is there anything specail we should do/ should not do between now and the operation in a week?
    - I read someplace that extra stimulation of a child with a catoract (trying to talk to them a lot, make faces, hold objects in front of them, etc. could be good for development.  Does anyone have any experience with this?
    - I understand from above that in some areas in Sweden glasses and contact lenses are free or partially paid for for children.  Does anyone know the the situation in Stockholm/Sundbyberg (we live in Sundbyberg)?
    - For how many months/years is patch training normaly needed for and about how many hours a day do babies normally need a patch to be on their good eye (I realize it must vary a lot, but it woudl be interesting to undertstand what most are striving for)?
    - It seems like it is clear that our son's eye should be operated on and have the lens with a cataract removed.  However, it seems that the key debate with a 7 week old baby like ours is if one should insert a lense in the bad eye or not (potentially just use contacts).  Does anyone have any insight into this?
    - Cataracts are sometimes symptoms of other diseases.  Have your children been tested for other diseases as a result and was this difficult to achieve?  What testing, if any, do you recommend? 
    - Our son who is seven weeks old now looks like he is looking at people and things if you don't look carefully.  However, now that I know there is a problem, I start to carefully look if he follows an object or really reliabily looks at me if I place an object in front of him or even make sounds, etc and he does not.  He does appear to react to sounds sometimes, but not consistently   He rarely reactions to objects being moved in front of him.  In addition he is rather calm.  Of course, he does cry loundly when he wants milk or is upset.  He does interact with pepole and want some attention.  He looks normal.  He also seems to have above average physical development for his age in terms of ability to hold his head, muscle tone, etc.  Do babies tend to have delayed development in terms of definate eye contact with people and be a bit less active when they have one bad eye?  When we were at the general doctor they said it is just hard to tell all may be just fine as babies start to have such development often between 1.5 and 3 months and due to the eysite probelms it could be delayed.  We may be biased in that we also have a two year old which is very active.  Does anyone have any thoughts on this?       

  • Fre 14 jan 2011 13:36 #46

    P.S. Please feel free to respond to my posting above via my inbox if you want to write anything personal/confidential. 

  • Sön 16 jan 2011 19:14 #48

    Skimmer, Tack så mycket för din hjälpsam svar!

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