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Hello,
My name is Sherri and I have a daughter with NOMID. I am so sorry to hear of your little one having so many problems, I know exactley what your going through. And the worst part is, so many doctors and the not knowing is what drove us crazy! Miranda, started out like Fynley, I was at my wits end trying to figure out what was wrong with her. She would have a fever everyday, this all started when she was just out of the NICU, she was born at 29 weeks and stayed in the NICU for 3 1/2 months. While in there, she had the rash, which at first we thought it was from the laundry soap. Then her eyes would cross, she had projectile vomitting, very bad and foul smelling diahrrea. Come to hospital and neurosurgery found that she had fluid on the brain, (hydrocephalus) Finally put a shunt in and she got better almost over night. But the rash still appeared and so did the fevers. Her right knee swelled and was hot to the touch. to make a long story short, we got a diagonosis after 2 years! We went through hell for 2 years not knowing. Is Fynleys soft spot on his head still open? Miranda is now 10 and hers is still open. She also has papalldema in her eyes, she wears hearing aids , her hearing seems to get worse every year, she loses more hearing as she gets older. Miranda is in a wheelchair, she had 2 brain bleeds when she was born, we were told that damaged her brain and it is irriversible. Mentally she is 2 1/2 years old, but she is 10 and she weighs 54 lbs.
I know how you feel and I pray that you can find the help we found. Miranda is now on >43 subQ anakinra and her prednisone just got lowered yesterday to 3ml a day. She has been on prednisone for 9 years. She is very stunted in her growth, she actually looks like a 2 year old. But this new drug (anakinra) has helped her. She is now stable, no more fevers and her joint pain and swelling are at rest.
I will pray for you and Fynley, I can't imagine how that little boy must be feeling, Poor little thing, I wish I was there to give him a great big hug and tell him he will feel better soon.!!
I do remember a few doctors going nuts after they looked at her blood work, her white cells were in 50,000 and high protein and red cells too. Her spinal taps showed high pressure and a lot of protein and white cells in her spinal fluid. they called us at home and demanded we bring her back to hospital because she had menigitis, which she didn't. this is part of the disease. It took a long for doctors to realize, with these children, they suffer everyday and part of the disease is "off the wall" levels.
Have you talked with Dr. Prior? We had a conference here in the states, my husband and I went back to Maryland to attend it, she was there and we met her. There were so many doctors there, I thought because this is such a rare disease, there would only be a handful, there were a lot and from different countries too! A great source of information. And there is hope, this new drug is wonderful.
Miranda was also thought to be CINCA, until we went to the NIH and Dr. Goldbach-Mansky ( wonderful person!!) said Miranda had the gene in her blood work. There is still more research to do, some of the kids didn't have the gene and some did. But they all have the same symptoms. Not sure if the gene means something else or there is more than one gene to identify.
I hope this helped a little bit, just knowing that we too have spent those nights without sleep because your child is so sickly, your not alone and if you ever need to talk, you can call me if you would like. My number is 315-834-6187, we live in upstate New York.
I hope Fynley gets better soon. for his sake.
There is so much more I could go into but it is 1:17 am and I really need to get to bed!!
I will write again soon.
Give Fynley a big hug and kiss tell him he has friends in NY praying for him!!
Talk with you soon.
Lots of love and prayers to all of you.
Sherri & Miranda Putvin
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