For parents with preemies...

Yeah-a family down the street has 2 kids with Asperger's-very smart kids-they just get "stuck" on things. And some have a tendency towards OCD.

And many children with "normal" autism seem to be in sensory over-load.

Originally Posted by akonitony

I've barely been able to keep him from getting a PEG tube installed for feedings.

Sometimes having a gbutton can be a blessing at a certain point. I absolutely think that both you and your wife sound like you have the judgment to decide, but some parents choose to have this done and use it for feedings for a few years.
I hesitated to post the idea at all since you two are medically aware, and have consulted specialists, but it is just another idea to consider.

TO OP, you mentioned the therapists he's seen but has he seen specifically a developmental/behavioralist specialist? If not, or even if he has, I would highly recommend trying to get an appointment with one, or a pediatric neurologist, at a major university center. I know you've probably seen many people, and you are both in health care, but oftentimes a fresh set of ears and brain, specially trained in this field, can make a large difference. My apology if my assumption is wrong but from you're story it doesnt sound as though your child was in a major university medical center, at least for NICU, based on the self extubation, as that is actually quite a common scenario in the NICU and PICU because it is harder to secure ET tubes in babies, let alone preemies.

Originally Posted by lucille

Sometimes having a gbutton can be a blessing at a certain point. I absolutely think that both you and your wife sound like you have the judgment to decide, but some parents choose to have this done and use it for feedings for a few years.
I hesitated to post the idea at all since you two are medically aware, and have consulted specialists, but it is just another idea to consider.

I agree with you completely, and I've recommended PEGs for children before. Sometimes it has been what saved their life, and sometimes it has been what prolongs it...
With Anthony, I was the first to consider a PEG, but after I was able to get him to accept pureed food, there was no need for the PEG.

Originally Posted by bigjej

TO OP, you mentioned the therapists he's seen but has he seen specifically a developmental/behavioralist specialist? If not, or even if he has, I would highly recommend trying to get an appointment with one, or a pediatric neurologist, at a major university center. I know you've probably seen many people, and you are both in health care, but oftentimes a fresh set of ears and brain, specially trained in this field, can make a large difference. My apology if my assumption is wrong but from you're story it doesnt sound as though your child was in a major university medical center, at least for NICU, based on the self extubation, as that is actually quite a common scenario in the NICU and PICU because it is harder to secure ET tubes in babies, let alone preemies.

We now live about 30 minutes to the University of Florida, which is also my Alma Mater, and has a great teaching hospital known as Shands. Unfortunately, the ped neurologists only offers evaluations and medications, but no counseling or therapy.
I agree with you regarding the ET tubes with smaller patients, which was all the more reason the NICU should have had the neobar on hand rather than going several months into it and finally borrowing one from another NICU down the road after I basically berrated a CRNP, and let her know "if we can put a man on the moon, we should be able to keep a baby intubated", which turned out to be 100% correct.
Recently, I contacted an attorney regarding this and he agreed the NICU was negligent in not having the proper equipment on hand. He also has a preemie who had to be restrained for about 3 weeks when he was delivered. He said his kid absolutely freaks out whenever they put the seatbelt on him in the car, so he can follow my train of thought in that I believe being reintubated over and over caused my boy to basically block out sensations in his mouth after a couple of dozen times. The only other obstacle we have to taking the hospital to court is proving this is definitely what caused his aversion to biting down on food, and not wanting to move his tongue. So far, the only experts we have found are a ST who is willing to testify he does not move his tongue properly. When she put her finger in his mouth, his tongue should immediately start trying to figure out what is in there, but it just stays put. I have been trying for months to get him to stick out his tongue at me, but the furthest he will go is to bring the tip out to about even with his teeth. He is not tongue-tied either, so it is definitely something in the psychiatric aspect of things.
When I was in school, there was a lab where we were offered to experience some of the things we might order or recommend with our patients. One of them was the NG tube, which is very similar to being intubated in that you are going to experience some psych-trauma in trying not to back out of your seat when they start pushing that tube into your face. I went ahead and had them do it to me, and this is another reason I think my boy is basically suffering from a form of PTSD.

It might or might not be related to having been intubated. After all thousands and thousands of babies are intubated every year, many of them for longer than your son, without any long term effects. The most common chronic compliation arising from intubating neonates, preemies in particular, is laryngiomalacia but that is not your son's issue. Try asking those neurologists for a referral or call your insurance company or use google to find someone appropriate.
As for malpractice suits, they are long and difficult, emotionally and physically, on all sides involved and most end up going nowhere. BTW what is an RD?

Originally Posted by bigjej

It might or might not be related to having been intubated. After all thousands and thousands of babies are intubated every year, many of them for longer than your son, without any long term effects. The most common chronic compliation arising from intubating neonates, preemies in particular, is laryngiomalacia but that is not your son's issue. Try asking those neurologists for a referral or call your insurance company or use google to find someone appropriate.
As for malpractice suits, they are long and difficult, emotionally and physically, on all sides involved and most end up going nowhere. BTW what is an RD?

We haven't persued the legal aspect much, and really don't plan to. The conversation I had with the lawyer was secondary to another conversation. We don't think his problems arose from being intubated, even for a prolonged period of time. We think it was from being reintubated over and over. At a conservative estimate, he was reintubated an average of 3 times daily for about 3 months. If you've ever been intubated, you probably realize having the tube in might be uncomfortable, but it is the insertion of the tube that is the worst part. Add to this the fact he was awake for probably just about all, if not all, of these intubations, and I would imagine most people would agree this could be quite traumatizing to someone who should have still been floating in total darkness (even if it was a pool of his own urine - something I found fastinating when I learned the fluid they are in is actually their pee).
I'll PM you with the rest of the info.

My son had similar problems (he's now almost 9). He nursed exclusively until about eighteen months; wouldn't even touch his birthday cake. When he was crawling, he'd pick stuff up from the floor, look at it, and put it back down. He never wanted to put anything in his mouth unless it was a boob.

At around 18 months, he began accepting foods, but only if they were crunchy or totally smooth. If there was the most infinitesimal fragment of fruit in his yogurt, he'd gag until he threw up. I had been telling the docs about this for ages but because he was always at the top of the growth chart, they told me not to worry about it. I wound up consulting a nutritionist when he was about two, who actually told me that what he was eating (oat milk, organic smooth yogurts, pureed baby fruit, homemade veggie chips, breast milk) was more than adequate, but suggested we see an occupational therapist.

We took him to an OT, and there I learned that a lot of things about him that I had thought were just quirks, were really sensory issues. Things like not wanting to walk on grass while wearing sandals, not wanting to get sticky, not liking loud noises. He had a year of OT to deal with his food texture issues. In the end, he eventually grew out of it and will now eat nearly anything (literally). He doesn't do standard kid fare; it's salads, curries, Asian food, anything that's a "real" food.

Check with an OT, cranio-sacral therapist, or similar. They might be able to help. Good luck!

Originally Posted by timebider

We took him to an OT, and there I learned that a lot of things about him that I had thought were just quirks, were really sensory issues. Things like not wanting to walk on grass while wearing sandals, not wanting to get sticky, not liking loud noises. He had a year of OT to deal with his food texture issues. In the end, he eventually grew out of it and will now eat nearly anything (literally). He doesn't do standard kid fare; it's salads, curries, Asian food, anything that's a "real" food.

Check with an OT, cranio-sacral therapist, or similar. They might be able to help. Good luck!

Thank you for the input. He is seeing an OT on a weekly basis, along with an ST and a PT. I'm hoping he will improve soon. It would be nice to be able to talk with him rather than to him.