my ds just turned 2 and this last year has been very stressful. This is going to be long, but background info is necessary. He was born full term , albs lighter than his 2 older brothers and from the get go i just felt he was a little less alert, his body felt very floppy. from day one till present he is not a good sleeper, very light.He always made his milestones, but in the last month that is considered "normal". But the ped. was never concerned because of that. at 6 months he weighed 16lbs 4 oz. at that point we were switching insurance and didn't have it for a few months so i skipped his 9 mon well baby. to be honest i didn't notice that he wasn't gaining, he just always seemed like our little peanut. at 12 months we started with a new ped. due to ins. and at his well baby we realized he hadn't gained, grown in height or head in 6 months. I was a wreck and scared to death. we did huge blood work ups (16 viles) and the only thing that came up was that he was mildly iron deficient. Now during those 6 months he was bfed and around 7 mon we started solids but he hated them. so he was mostly bfed. he was never a huge eater, i was always trying to get him to eat a little more. So after the blood work he went to a ped. gastro. who put him on a high cal diet of mostly dairy. He started getting so sick, spitting up tons, eczema all over his face, crying all the time. We took him off dairy and they though his failure to thrive could be due to allergies. so we saw a ped. allergist who said he has intolerances (she suspected) . she wanted him off dairy, soy, gluten, corn, sugar. THrough this he was gaining little bits but very slowly. his height started growing and his head, but he stayed very low on the charts. He would eat a little better and then not on and off. He would gain but only around 2 oz in 2 weeks.
At 18 months we had him evaluated by EI because the dr felt his speech was behind and maybe that had to do with his lack of desire to eat. he had a oral motor delay but missed it by one month (scoring) to get help. Around 18 months his desire to eat went down to nothing, like a bite of egg for breakfast and then not wan to eat till 3 pm and only a few bites then. So we went to a new gastro who said take him off the allergy diet, even though he grew it was so insufficient that it couldn't be his issue. So we put him back on the foods and it didn't spark any new desire to eat. Digestive issues seemed fine, he never had any, he didn't think it was stomach. So my ped said maybe its just behavioral, but lets first get an OT to rule out sensory/oral motor issues. Well in her review, the OT felt he had tactile sensory issues, low tone,and speech delay , and seemed behind in gross motor, but ok in fine motor skills. I knew nothing of all of this. so i have been trying to do my research , the ped did minor genetic testing for fragile x and kliensfelter syndrome but they came back negative. She wants to send him to a neurodevelopmentalist, but i haven't been able to even get an apt yet.EI is coming next week for a re evaluation, this time i specified the sensory and eating issues. ( last time only a speech pathologist evaluated him).
As of now jax can say 3 word sentences but his speech sounds very mushy, only my husband and i understand him.he drops the ending of most words or it sounds nothing like it. example Mater is "noono" and thats one of his clearer words. his cognitive reasoning seems totally fine. He doesn't like certain textures to touch him but he reaches from trying to tell me to tantrums, it depends on the day. when playing outside he is always telling me his hands are dirty. He gets very overwhelmed by people, in groups he just cries and clings to me the whole time.This is getting worse and worse, but every once in a while it doesn't seem like it bothers him. In the last 2 weeks all of a sudden sounds startle him and cause him to freak out. it can be a car alarm going off down the road or even his brother calling my name. He drools when talking or concentrating, and his body still seems floppy. When he runs he looks like he glides over land until he falls. He is 2 now and only 17 lbs 1 oz.
Has anyone ever had a child like this? or a situation similar...espeially the eating part? Or does this sound like something you know of? its been a year and i feel like we are just starting to look in the right area, but still have a long way to go. i just feel so lost...all i want is answers , we can deal with anythings, i just want to be able to help him and for him to grow . If any one has any advice i would really appreciate it!
on all points. I don't believe EI will send you everyone at once in NJ--they start out with the most major thing and move on from there, usually looking for the first person to come back and say "Yeah--definitely need more people". We've dealt with them since 2004 and the most I've ever had out for an eval at one time is two specialists despite the fact that we (on one child's case--my biological child at that) wound up with easily 7 different types of therapy including feeding. And it is the speech pathologist (specifically one that is Clinically Certified Competent/CCC) that does the feeding eval.
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