For parents with preemies...

[akonitony]

Does anyone out there have a 3-year-old child that absolutely refuses to chew and must be served pureed food even though he/she has teeth? Besides this, my son also won't talk except for a word or two here and there. He was born at 24.6 weeks gestation and weighed 2#, 3 oz. He has seen many specialists, and both his mother and I are in different fields of health care, but nothing seems to work. We have tried getting other kids to show him how to eat a cookie by chewing it. He still will only take a small piece and let it soak in his mouth until he can swallow it. If anyone out there has had similar problems, I would really, really, really appreciate hearing what you are doing or have done to solve the problem.

 

[bigjej]

Have you considered, or already seen, a developmental/behavioral specialist? Has he had followup with a neonatology specialist? Does he have any physical or developmental delays?

 

[SamanthaJane13]

Have you considered, or already seen, a developmental/behavioral specialist? Has he had followup with a neonatology specialist? Does he have any physical or developmental delays?

DITTO!!!

My ex's daughter won't eat anything but pasta and PB & J and a couple of other things. CPS has been called in by the school due to her diet and a few other non-abuse/possible neglect issues, told them to get her tested, and they've done nothing.

When the baby was born-at normal term-their doctor told them nothing but breast milk for the first 12 months, then a very odd schedule of introducing new foods, which have totally FAILED with this kid.

The kid is in Jr. High...and STILL won't eat.

Both cases sound like some autism spectrum disorders to me. Autistic children tend to HATE change, and dislike certain tastes, textures, and smells, etc.

 

[bigjej]

Whoah... gotta be careful before using the A label because it can really create a lot of problems just by bringing it up prematurely. There are plenty of very plausible explanations for both scenarios that have nothing to do with autism. A diagnosis cannot be made on the internet, let alone a reptile forum. I would highly recommend finding a specialist as mentioned above.

 

[SamanthaJane13]

Both cases sound like some autism spectrum disorders to me. Autistic children tend to HATE change, and dislike certain tastes, textures, and smells, etc.

NOT making a diagnosis.

"Sound like" is NOT a diagnosis.

I have several friends who have children with autism spectrum disorders, and MOST of them exhibit the "taste, texture, smell" issues.

Just putting it out there.

 

[SamanthaJane13]

I would highly recommend finding a specialist as mentioned above.

To which I replied-

DITTO!!

 

[bigjej]

I know that you were not making a diagnosis but what you have to realize is that once you even hint at a possible diagnosis, a lot of damage is done. what the OP stated in his story is a far cry from the stereotypical behaviors exhibited by autistic children. just as likely is any number of other far more benign causes.

 

[bigjej]

To put things into perspective, imagine the follow scenario. You come here saying you found a strange looking pimple on your back and to that I reply, go right away to see your dermatologist because it might be a basal cell carcinoma.
Now while that might be correct, it is faaar less likely than at least a dozen other, fairly benign diagnoses - such as a clogged pore, simple acne cyst, birth mark, cellulitis, etc. However even though I never said IT IS a cancer, the only thing you are thinking for the next 15 doctor visits is, " Oh my God I might have cancer. "
You see what I mean. I know you intent no harm but this is the internet, and it is someones child's health, so words are powerful.

 

[akonitony]

I appreciate everyone's input. My wife is an RN and I'm an RD who started out his career at the women's and children's center at one of the medical centers where we used to live. I've barely been able to keep him from getting a PEG tube installed for feedings. As far as autism spectrums, he does show a few signs and symptoms, such as fascination with his hands, but that is about it. He makes very good eye contact and there are several other behaviors he does that autistic children typically do not do. His main problem is oral motor skills. He was intubated over and over and over in the NICU because he was the "only baby they had ever seen autoextubate himself" according to the nursing staff. On one of the final episodes, there was blood on the end of the tube, so I told the CRNP working there they needed to figure out a way to keep that tube in, and I would not allow another intubation if he pulled it out again. The next day, another nurse who worked at a different hospital as well as the one we were in brought a neobar from her NICU. It tapes to each side of the face and has a bar located over the top lip they can tie the endotracheal tube off with. They also put socks on his hands so he could not grip the tube anymore, and viola, the tube stayed in until they were ready to take it out.
I think the trauma of being reintubated over and over (I'm talking 4 or 5 times daily for 3 months) has caused a short circuit in the oral motor area (Broca's?) of his brain because he doesn't really even speak baby talk anymore. It is almost like word salad, sort of like Wiernicki's encephalopathy with end-stage etoh-abuse). Sometimes I can listen closely, and he is actually saying several words in a typical sentence all ran together. One of his more common expressions is "howdoin?" or "whereyougoin?" but they are said so fast it sounds like gibberish to the "untrained" ear.
He is being seen by an OT, an ST, and a PT on a weekly basis, but the progress is minimal at best. I was just hoping someone else out there had a similar child that is doing something they deemed helpful. It is really getting to be extremely difficult to take care of a toddler stuck at the baby level of development for the past 2 years. He has developmental delays in almost everything he has beeen tested in, and recently was placed in pre-kindergarten along with some other children who have similar problems, but only one of them requires pureed food, and I believe that young man has CP, so he is in another field altogether.
I sure thank you all for your replies.

 

[shelliebear]

The OP asked for advice. Perhaps SamanthaJane had a similar experience and autism was the outcome for her case.
Honestly, talking about something isn't going to mess stuff up. Either the kid has autism or he doesn't.
Not saying the "A" word won't help. You have to look at all possible causes for the behavior.
Autism is not the end of the world. Autistic kids can be, and often are, just as smart as other kids, but display behavioral problems we consider to be "unacceptable", or they are a little slower than most.
How do I know this? ...because several of my family members (cousins) are autistic. You'd never know if I hadn't told you. :/
And while in your scenario cancer is not likely, this is one of the many reasons pap smears are done for women: it's all about PREVENTATIVE care. Going in to see a doctor with concerns--even far fetched ones--is far better than letting that "pimple" on your back turn into a stage 4 melanoma...:/
Most women don't get cervical cancer yet we get pap smears every few years.
It's preventative, again.
Words are indeed powerful, but only if you take them as such.

 

[SamanthaJane13]

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.

 

[Lucille]

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.

 

[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.

 

[akonitony]

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.

 

[akonitony]

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.

 

[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?

 

[akonitony]

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.

 

[timebider]

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!

 

[akonitony]

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.