Since the day my son was born he was so small, he weighed 5lbs, and was supposed to be a 10 or 11 pound baby, so we were a little surprised to see such a small baby but we didn't think anything about it. From the first day he did not eat well was vomiting with every feeding so they changed his formula to a soy and after 4 days we went home.
We were home for 5 days when I took him in because he was still vomiting sometimes violently, so he was hospitalized and was diagnosed with Reflux, so he was started on meds and his formula was changed again to Enfamil AR. Still not eating well and months later to little to no growth we were sent to a GI doctor and he increased his dose of medicine and had me add cereal to his formula.
He was put in the hospital several times, and finally when he was 3 months old they found out that his Thyroid wasn't working properly, so we went to yet another specialist, she put him on thyroid medicine and we go for checks for that every 3 months.
My son also had multiple ear infections, episodes of violent vomiting, tubes placed, adenoids removed, tonsillectomy, numerous sinus infections, C-Diff from frequent use of antibiotics, Rotto virus, always the said failure to thrive, my question was always why?
My son has many specialists and will soon be 3 years old and we recently received a name for the vomiting, called Cyclic vomiting, so that was good news, we are also waiting for the final reports on whether or not he has RSS. The genetics Doctor was telling me about how he has a triangular shaped face and some of the things he has been dealing with for almost 3 years now are signs of RSS, so we are hoping to know soon, and if that isn't it we will continue to look for answers for my son.
So in short I hope to help others out there who are faced with questions and I hope to get advice from others who have already dealt with growth problems in them selves or there children or loved ones so please fell free any help is greatly appreciated.
Stacy
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7 comments:
Hi Stacy,
I'm the Mom of an almost two year old Russell-Silver little boy named William. When I read your blog I felt like I was reading his story. I just discovered your blog and would be interested in blogging with you more but wasn't sure if you are still checking this.
Candi
My daughter is suspected of having RSS. We don't know for sure yet. The doc wants to rule other things out first.
She is 15 months,
16 pounds 11 ounces,
29 inches tall,
head circumference 43 cm,
Diagnosed with FTT,
Deals with pain on a daily basis,
We love her and want answers so we can give her the best of life.
She never tolerated infant formula, and got worse on reflux meds.
I would be happy to blog with anyone who wants to talk I know how hard it is to deal with all the issues of RSS and it is noce to have some one to talk too so if you want to talk please feel free I have a computer again and will be checking on a regular basis.
Hi Stacy,
I have a 9 year old son that was diagnosed with Russell Silver Syndrome at the age of one year. Many of the things you dealt with, we have as well. At the age of 9 (almost 10) he is just 46 inches tall and about 45 lbs. He still has a feeding tube and at least 75% of his calories come this way. He gets daily GH injections, but he doesn't respond as well as a normal growth deficient child.
Other than the above, he leads a very normal life. He goes to school, and is very bright. He plays some sports and has great friends. We are lucky to have him.
We don't live too far from you--just a bit southwest in Omaha, NE.
Linnel
Linnel,
You aren't too far from me. I find it very comforting to find other families that are going threw the same thing. It is a shame our kids have to deal with what they do but I wouldn't rade my little man for anything in this world. My son also leads a fairly normal life you wouldn't know anything was wrong with him a lot of the time but when he is bad he is bad. Please feel free to e-mail me anytime at stacy.witzke@gmail.com maybe someday we could get together.
I have to say that I am amazed by some of the stuff we have in common... only with a few of my kids, We're dealing with the thyroid issues being a possibility with Nathan, my youngest is on Enfamil Lipil AR for spitting up, Nathan had some severe reflux at times, and I had to put cereal in his bottles from early on too, and my 7 year old had the multi ear infections, tubes, has had C-Diff and almost died, and the cyclic viomiting... Nathan is the one that we are waiting to see if he has RSS
Hi,
We are in the middle of investigating if my son has RSS. One minute the geneticsts feels he does, then the next he doesn't...grrr Haidyn is 22.5 mos and weighs 19lbs (just got there...yeah...lol) 29.75". He was 5lbs 8oz at birth and 17.75" He still doesn't talk (in speach therapy) but his other motor skills are now on par. He is a bright little boy who tries to do everything his peers do.
We finally got in for a GI consult because of his constant diarreah or constipation. She is running a whole slueth of tests. Haidyn was hospitalized at 6 weeks due to dehydration from severe vomiting. The reflux meds they put him on helped a little but didn't 'fix' it. Now they say they believe he also had FPIES. It certainly is a roller coaster ride.
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