Last Thursday, we visited Bambino's pediatrician for his 15-month check. He was due for a couple of inoculations. We delayed getting a couple of the live vaccines, as advised by his Immunologists due to the supposed allergic reactions so he won't get those until he's 18 months of age.
What shocked me at this visit was Bambino's weight. At 16lbs1oz, he is 11 ounces lighter than at his 12-month check up. I thought it was the recent bout with gastroenteritis that did this to him, but the doctors reminded me that he also loses calories and moisture through his skin. And it's true because he's been having a bad couple of months. He's had two major breakouts in December alone. His skin is weepy most winter, and the itches keeps him up most nights he rarely gets quality sleep. We were warned before that winter would be bad for his skin condition - especially the very low humidity here in SoCal.
He only grew half an inch in length since October, too.
At a Mommy & Me class, the moms were amazed when they learned that my Bambino is 15 months old especially when they see him prancing around. They would initially thought he is just around 6 or 8 months. He was the smallest baby in that class, even smaller than the 6 month-old ones.
One of the most disconcerting symptoms of Netherton Syndrome is failure to thrive (FTT) especially at the first two years. I guess we are lucky that Bambino eats and feeds ok. He could do better, but I am not complaining. He still nurses 90% of the time, he is on elemental formula (Neocate & Ele-Care) to supplement breast milk. He eats some solids but due to his vulnerability to allergies, we couldn't give him just anything. He can only eat rice, carrots, peas, turkey, cheerios and bananas. Even the GI doctor the we consulted to help him to gain weight threw in the towel saying her colleagues, the Immunologists, got her hands tied.
He is being referred to see an Occupational Therapist next, to help him eat his solid foods better. Currently, he is being seen regularly by a Physical Therapist and a Child Development specialist.
We didn't expect this journey to be easy. My hope is that Spring will be a better season for him, and it's just a few weeks away.
And if Spring would be as bad, there will always be Summer.
5 comments:
I just wanted to let you know that you are not alone out there, my 20mth old son has Nethertons as well! You little guy is beautiful! If you ever want share stories on our little miracles, please feel free to contact me!
Ty's Mommy, how can I reach you? I'd love to swap stories!
Hello, i have also have Nethertons and my sister also have this illness. We are from Latvia, because sorry about my bad English.
I am 18 years old my sister now have 20 years. Our first years also was terrible.Docotrs in Latvian do not knew about netherton and any of doctors could not help us. Like my mother tell us she 3 times put us in bath. In Latvian then was economical crise, creams we could not afford.
After servial years we find some doctors who could hepl us to buy creams (Lacobase) this cream was very expensive. But we become better and better. we i have 14 we found cream who called Eucerin. This cream was very good we think. But after 2 years we get the best thing in our lives cream DEXERYL France made this cream. It's so great, but in Latvia we could buy cream that way we went to. anothers country to buy! It's not expensive but very good. I suggest you to buy it is realy good it helps a lot.
I also have problem with my weight. How i g to gym and eat very much proteins vitamins ext. In few months i gain 10kg now i look lika a person my weight now is 70 kg and 180cm... but i could do sports all the time because, my health could not affrod it. if you want ask me some questions i would be happy to answer becaus i want help anothers with my experiance and also want to know about yours! my email l1nk1n91@inbox.lv
Hello, i have also have Nethertons and my sister also have this illness. We are from Latvia, because sorry about my bad English.
I am 18 years old my sister now have 20 years. Our first years also was terrible.Docotrs in Latvian do not knew about netherton and any of doctors could not help us. Like my mother tell us she 3 times put us in bath. In Latvian then was economical crise, creams we could not afford.
After servial years we find some doctors who could hepl us to buy creams (Lacobase) this cream was very expensive. But we become better and better. we i have 14 we found cream who called Eucerin. This cream was very good we think. But after 2 years we get the best thing in our lives cream DEXERYL France made this cream. It's so great, but in Latvia we could buy cream that way we went to. anothers country to buy! It's not expensive but very good. I suggest you to buy it is realy good it helps a lot.
I also have problem with my weight. How i g to gym and eat very much proteins vitamins ext. In few months i gain 10kg now i look lika a person my weight now is 70 kg and 180cm... but i could do sports all the time because, my health could not affrod it. if you want ask me some questions i would be happy to answer becaus i want help anothers with my experiance and also want to know about yours! my email l1nk1n91@inbox.lv or monta888@e-apollo.lv
Hi, you can reach me at wbreen@hotmail.com. I'd love to swap stories with you too!
Post a Comment