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Post by nuray26 on Oct 30, 2006 2:59:17 GMT
Hi
We learn our little girl (Sophia) has Miller Dieker . She can eat from her bottle and she has kidney stone. Can you write to me please if your child with Miller Dieker and how old they.
Thanks Nuray Slabaugh
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Post by Margaret on Feb 8, 2007 23:54:26 GMT
Dear nuray, i did have a precious little girl called Megan, she had Miller Dieker Syndrome too, but sadly she passed away a few years ago. Because Miller dieker syndrome is present in only 1 in 100,000 births you may be the only parent in the U.K. at present with a daughter with this form of lissencephaly. If i can help you in any way or give you some support please feel free to contact me. Enjoy every moment you have with your little girl she too is a precious little angel and a very special gift.
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Post by nuray26 on Feb 18, 2007 2:48:19 GMT
Hi Margaret,
This is Nuray. Thankyou write me back. I am so sorry about your lost. I have couple question please can you sen me your e-mail address.\
Thanks a lot Nuray
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Post by Margaret on Feb 18, 2007 17:02:36 GMT
Hi Nuray,
Margaret here, i was delighted that you have replied to my message. My email address is margaretcmoore2006@yahoo.co.uk fell free to contact me at any time and i you be delighted if i could answer any questions that you may have. Bye for now. Margaret
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Post by mrs f on Feb 23, 2007 21:43:59 GMT
i am very interested in this, and you are not the only one in the uk, my niece born in December 06 has miller deiker and so far doing quite well, how is your daughter doing?
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Post by margaret on Feb 25, 2007 1:18:23 GMT
Dear Ms F Margaret here, as you may have read I did have a daughter who had the same syndrome as your niece her name was Megan, sadly my daughter gained her real angel wings in 1997. she died aged 9 1/2 MONTHS OLD. As you may ask why am I on this forum now nearly 10 years after my daughter has passed away. Well its a promise I gave to another mum who at the time was a member of this group , her name was Sue and she lived in Liverpool. Her daughter had just passed away at the time with the same syndrome as my own daughter, and I at the age of 26, married for one year with a new baby full of dreams and aspirations of how she may become. My daughter was diagnosed at 5 and a half months old just before christmas with Miller Dieker Syndrome through FISH anaylsis . Some christmas present as you may think. But Sue was my guardian Angel. When my husband walked out unable to cope with the situation that he was dealt with, she supported me and guided me through the most diffilcult times of my life. I made a promise to my daughter and to her that when I was strong enough that if I could help another person in the same situation I would gladly do the same without question.
Good bye for now, Margaret
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Post by nikolina on Feb 28, 2007 15:41:16 GMT
hello to everyone who reads this. My name is Nikolina, coming from Croatia. My daughter is Leonarda and has MDS. She is 5yrs old. Doctors told me that she will die until (maximum) 3yrs but here she is. Still with me. Her developmental level is low as they said it would be. Always seizures, there was no day without it. Sleeping problems, feeding problems. Now when I read this pages about liss., I remember the days when I thought that my daughter will not have that problems. Now I see that it is all like they say in statistics. But here we are in this moment. No more asking ourself what will be. We live day by day giving her all our LOVE.
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Post by howengold on Mar 12, 2007 22:54:12 GMT
Hi
Aeron is 13 years old and outlived all the predictions we have been given for his MDS.
Live your lives for today, enjoy the moment and don't think about tomorrow, every child is different. Good luck and best of love form mandi& Aeron x
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Post by jensavoie on Jun 4, 2007 18:52:59 GMT
Hi,
My son John-Thomas is 15 months old and also diagnosed with Miller-Dieker. He eats very well with a sthingy and takes a bottle. He will occasionally smile and laugh to which we are delighted. He is such a blessing to our family.
Jen
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Post by patricia on Jul 4, 2007 15:11:18 GMT
Hi There, I hope that you are all well , My adopted son has a combination of MDS and ILS he is now almost 20 years old. He is still unable to hold up his own head or sit is tube fed BUT HE IS HAPPY and is the love of life my reason for living We have had many,many problems in his life and they continue to crop up and always will. My advise to you is to take life slowly and live every day as it comes and at the end of it be thankful for the day,no one knows what is round the corner.
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Post by Julia on Jul 20, 2007 1:29:21 GMT
On June 21st we had our son Ryan. On the 22nd the doctors told us he had Lissencephaly. Two weeks later we found out that he had MDS. He has been in the hospital in the NICU for 4 weeks now. He is scheduled to have surgery on Monday to put in a PEG and have a procedure for his acid reflux. After the surgery we should be able to take him home. We are taking it one day at a time, but it is very difficult. He is doing very well. I am just ready to take him home so I can take care of him. We are nervous because we aren't really sure what to expect when we get him home. We know that he will have a lot of dr. appointments and therapy. He is not showing any signs of seizures yet, but we know that he will probably develop them. We are still questioning why God chose us to have a special child like Ryan, but we know that there is a reason. Maybe one day we will get all of the answers. Julia
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Post by fallonsmom on Jul 21, 2007 18:53:06 GMT
I was trying to email you from another liss group but couldn't for some reason. My name is Sarah and my almost 11 month old daughter, Fallon, was diagnosed with liss with in 5 days of birth and MDS within the first two months. I was wondering where you lived. From a lot of the info I've seen we got our diagnosis fairly early as you did. Fallon is still cared for by the docs at MUSC (Medical University of South Carolina) where she was born. We live just outside of Charleston, SC in Ladson. I have just under a year of experience with this unexpected way of life and will be happy to provide you with any info I can just as an experienced mom and let you know that you are not alone. Sarah
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Post by fallonsmom on Jul 22, 2007 15:04:38 GMT
Just wondering if anyone has seen an increase in infantile spasms when there is a change in meds. We are currently changing Fallon from 3 topomax and 1 zonegran twice a day to two topomax and 2 zonegran twice a day to eventually get to 3 zonegran and 1 topomax, with the topomax possibly going away permanently. She has had an increase in spasms over the last 24 hours, but had been having a slight increase since before the med change. She had to get diastat last night after a day of spasms with a 30 minute episode in the morning and another 10 minute episode in the afternoon. By the time we were done with her bath by 10pm, she was having a few spasms along with some stiffeneing that we haven't seen much of before.
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Post by jensavoie on Aug 14, 2007 2:22:42 GMT
Our son John-Thomas had increased episodes of infantile spasms when his medicines were changed. He is now well controlled on 125mg of Zonegran twice a day. He also had and increase when taking the generic instead of branded drug. At 17 months, he has about 4 two second episodes daily and it has been 3 weeks since he experienced an episode lasting 5 minutes.
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Post by rosemarie1663 on Aug 22, 2007 14:18:23 GMT
Hi Nuray, Our son Denis has Miller Dieker.He is 13 years old. As a baby Denis did drink from a bottle. It wasn't an easy feed. We had to help him make a good seal around the bottle by supporting his mouth around the nipple. He didn't have a lot of seizure activity until he was around 6 months old. Denis started having what they call Infant Spasms. We had to put him on ACTH. Which stopped them,but he did eventually have seizures a few months later(not the infant spasms). When he was little he enjoyed taking infant swim class, and infant massage. Now, Denis goes to a special needs dance program.(as well as a weekly school program) He got a feeding tube when he was five. His feeds got to take a long time,and he was not enjoying eating by mouth. I hope some of this helps. Best to you and your family Rosemarie -Buffalo,NY
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