Need to know we're not alone!
(Wadsworth, Oh, USA)
Cash is our 18 month old son. He has had many issues since birth: Jaundice (3 day NICU stay), tongue tied, eye muscle surgery, ear tubes, reflux (that WE had to diagnose at 3 months old. He still takes prevacid to this day), Milk Protein intolerance, global delays, sleep associations etc.
Our son does not speak one word. He just started pointing but only for food or drink. He is just starting to use a sippy cup on his own 50% of the time (i usually have to help him tip it). The only things that he enjoys is Baby Einstein Videos (could watch all day if we allowed), any activity outside, elmo anything, and balls. He doesn't play with his toys hardly at all and doesn't play with them correctly if he does.For the past month he has been going to OT and PT. We just got into Speech Therapy this week. We are unable to go out to eat at a restaurant due to his anxiety. He freaks out and seems over stimulated at any social setting.
Grocery/Department stores are ok for up to 20 minutes. He ignores younger children but is interested in older kids that are playing (he squeals in delight at them). He is in constant movement never wanting to be held except only to nurse(which is for comfort at this point). He is a clumsy walker (learned to walk at 16 months), frequently unbalanced and falling. He shakes his head 'no' at appropriate and inappropriate times. He sleeps
maybe 8 hours per night. He wakes up 4 to 8 times per night fussing. He arches his back frequently at night and scratches his stomach to the point of blood sometimes. He has always slept with us in order for any of us to get any sleep.
Cash has had x-rays and an MRI with no evidence of damage. He will be getting an upper and lower scope from the GI doctor on Monday. We are actively trying to solve the puzzle. The daily struggle is wearing on both me and my wife. It is especially hard for my wife who is pregnant with twins due in March. Our pediatrician says that she "feels bad for us" and that "Cash has alot of issues" and "she cant do anything for us". We have had to make our pediatrician refer us to the specialists that we have seen. We keep saying "maybe this is it! We may be near an answer", without success. We are not sure if he is in pain or its just part of his disorder (whatever it may be). We just heard about SPD from our speech therapist, not as a diagnosis but as a maybe. We feel like physicians avoid even mentioning any disorder. We have had to do all the research on our own! If we could only get some ideas of what could be going on here! We wont be offended! We want to help our child!
Anyone have similar issues? We feel like we are alone sometimes!