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Name: jezz
[ Original Post ]
Hi all, Im 27 and mum to 3 children,my baby girl of 9months has got sickle cell, she has constantly been in and out of hospital/seen GP since she was 2months old with Viral infections which affect her eyes/ears/chest and throat,she also had a UTI infection which i dont think she has totally got over, although she has not yet had crises she gets swollen hands and feet and sometimes just SCREAMS as if she's in pain, when i tell the docs about this they dont seem to concerned as she is not having a serious crises, its starting to get me down as its a constant battle to keep her well and healthy. I have 2 older children who dont have sickle cell and there schooling is starting to suffer because of the amount of late nights (hospital visits etc) I have a partner but he's not very supportive when it comes to things like this (even though he has sickle cell himself!) Im at my wits end, so tired all the time.
I dont have anyone else to share my thoughts/fears with and was wondering if theres anyone else out there that is in same or simular position and would like to talk,please get in touch,look forward in hearing from you all.
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Name: dove | Date: Jun 24th, 2009 10:22 PM
Hi, I'm 29 yrs and I don't have children but I have sickle cell. Your baby is experiencing severe symptoms very early, it indicates that hers is quite severe, so don't take chances. Most Doctors who aren't fully acquainted with sickle cell are always casual about it, i'm sorry you have to deal with these kind of doctors. In cases like this you have to equip yourself with knowledge of the disease so they are aware that your not clueless, when your forced to advise them they are forced to try a little harder. If you can find a physician that is very familiar with sickle cell make him or her your doctor. Your daughter even though she might not be experiencing a crises can experience acute joint pains. Your husband should be more supportive since he has personally been through this, I know each experience for individuals is different but he can ease the burden. For good info. go to www.scdinfo.org. I can't advise you much because of her age, my mother was struggling also but times have changed and the information is out there and the treatments are available. God bless, please stay strong 

Name: jezz | Date: Sep 28th, 2009 12:50 PM
Thanks for your reply,sorry for late response. She is now 15months old and has had 4 crises in the last 4 months or so, but im much more confident in myself when she is in pain- infact i can tell now when she's gonna get ill and have a crises, I am manging minor symptoms at home with hot water bottles/bath/massage and sometimes codeine if paracetmol doesnt work. She is such a clever little girl she also knows how to let me know where her pain is, unfortunatly im not able to assign myself to a doctor (live in england) we get seen by whoever's on duty at the time but im very well known at the hospital and they know that i know my stuff! so not easily turned away lol. The flat im living in is not adequate for her health so am trying to get moved. My partner is alot more supportive and my older children are settled at school now.
It can be emotionally draining at times but im pulling through and gaining more and more confidence day by day.
Thanks ever so much for your reply hope we can speak again sometime soon.
Take care -x- 

Name: dove | Date: Oct 21st, 2009 10:52 PM
Hi Jezz, I am so happy you replied and that you are coping so well, with your great attitude your giving your baby every opportunity to be healthy and have a normal life. As she gets older the crises is suppose to become less frequent. If you have anything quesetions that I maybe able to you with please don't hesitate to ask. Take care. 

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