14 Month Old Boy with Swallowing Problems

PLEASE GET AN OT ASSESSMENT ASAP!!!!
I am a therapist

T.,
You really need to help your friend out here. She is in complete denial that this is not a critical issue! If he's barely pushing 18 pounds at his age, he is not thriving. She needs to consult a different pediatrician altogether and get some real help. Do not delay!

Possible issues: oropharyngeal dysphagia, esophageal dysphagia , or a tumor, lots of possibilities, just google it. Plenty of info. Or it's pshychological.

Regardless, keep in mind there are certain critical windows for brain development that if affected by malnutrition or lack of exercise (how active is this babe?)or exposure to the world around him that stimulates his every sense, will just simply shut down, and take years of therapy to recover, if at all possible....Malnutrition here seems evident, and I don't understand why her pediatrician doesn't seem more concerned.

If you have to, I would take time out of your schedule to be with her and help her investigate. She needs to take action, and you can help her.

In friendship and support,
V.

My son has the same problem and was diagnosed with apraxia of speech and sensory integration dysfunction (which others have posted about). If your friend is already seeing a speech therapist that's great. I think an occupational therapist would also be helpful. I know you are very concerned about your friend and her child but be careful what you say. While you are trying to only help out, she might hear you saying "Something is wrong with your child". And if she is getting therapy services already, she probably knows that but doesn't need someone else to remind/tell her.

The first thing that popped into my head is sensory processing disorder. IMO this has more to do than with speech alone... this may also have to do with the brain. I don't know HOW I would bring this up with a friend. Some people would welcome any "help" or advice, some might not.

http://www.sensory-processing-disorder.com/

She might want to check out the book THE OUT OF SYNC CHILD: Recognizing & Coping with the Out of Sync Child by Carol Stock Kranowitz, M.A.

Check out the reviews on Amazon.com. There are lots of books on this topic now. That wasn't the case a few years ago.

or TOO LOUD, TOO BRIGHT, TOO FAST, TOO TIGHT by Sharon Heller, Ph.D.

"Heller, a developmental psychologist, knows firsthand how difficult life can be for people suffering from sensory defensiveness (SD). Symptoms include flinching from touch; overly acute senses of smell; fear of escalators; irritation at certain lights; and eating disorders. While these symptoms are often present from birth, for many other people they can be triggered by some traumatic event. Adding to the pain is the difficulty in diagnosing this ailment-some sufferers are told they have ADD or autism. Heller briefly discusses her own successful therapy and how it transformed her life. The book includes four sections-the first two focus on an overview of the condition, and the second two examine treatment, including diet, medication and relaxation techniques. Useful appendices list alternative treatments and resources. The writing is clear and relatively jargon-free, and sprinkled throughout the book are anecdotes from patients who have successfully battled SD. Patients who have this condition will find this book reassuring, especially since Heller discusses a treatment and usually follows up with a real-life scenario. For example, the section on light therapy ends with a success story of a woman who had learned to cope with her light sensitivity: "[Anna] realized that her eyes were wide open, no longer slits. She had spent years walking around in a haze, blinded by glare, with her brain taking in only a sliver of light." For people with SD, this title will wonderfully supplement their medical treatment. "

~ ~ ~ ~ ~ ~

I'm editing to add - I'm in total agreement with Victoria B.

T.,
You really need to help your friend out here. She is in complete denial that this is not a critical issue! If he's barely pushing 18 pounds at his age, he is not thriving. She needs to consult a different pediatrician altogether and get some real help. Do not delay!

Possible issues: oropharyngeal dysphagia, esophageal dysphagia , or a tumor, lots of possibilities, just google it. Plenty of info. Or it's pshychological.

Regardless, keep in mind there are certain critical windows for brain development that if affected by malnutrition or lack of exercise (how active is this babe?)or exposure to the world around him that stimulates his every sense, will just simply shut down, and take years of therapy to recover, if at all possible....Malnutrition here seems evident, and I don't understand why her pediatrician doesn't seem more concerned.

If you have to, I would take time out of your schedule to be with her and help her investigate. She needs to take action, and you can help her.

In friendship and support,
Victoria

She's absolutely right in her post about critical stages of brain development and malnutrition WILL affect that. There is more to be done right now and it is deeper than just a speech therapy. But as others have said, this could be a land mine if you say the wrong thing... yet both of them will be the ones to live with this for the rest of their lives if it's not handled correctly now.

My second son had a similar problem. I was told that his body was "starving" and wasn't getting the nourishment he needed. He would gag on a lot of food and throw up frequently at meal time. We thought he was just a picky eater. We ended up finding out that his adenoids and tonsils needed to be taken out. His tonsils and adenoids were both too big and ended up keeping him from being able to swallow food very well. He also ended up with tubes in his ears. I think it would hurt to chew because he needed tubes, but that was just an additional problem. He was a tiny little guy for years. We didn't find out any of these things, even after lots of tests, until he was 6 years old. He has finally started to put on weight and he eats great now! He is now almost 8 years old. Hope your friend finds out what the problem is and gets it resolved. It can be really stressful and painful to watch your child struggle and not what's wrong or how to help them. Good luck!!

Hi T.,

Your friend should be going to "Occupational Therapy" (OT)
My son was tube fed for the first year and 1/2 and when the OT therpy is a big part of how they eat or helping them learn and the therapist would be able to tell just by watching him what he is doing or not doing and help her find ways to get him to swallow. It does take time and at least he's putting the food in his mouth and chewing that's half the battle. The speach therapist may also be involved as an OT also. I wouldn't be too concerned if your friend is already seeing this specialist. And his weight is probably just fine. As long as she see's her pediatritian for weight checks and that he continually gains and grows he's fine. My son is very lean. My pediatrician said so many parents freak out if they don't see some chub on babies...but actually it works to the child's advantage to be lean. The only way I'd really be concerned is if he isn't drinking formula or pediasure....something to get his nutrition. So if you don't see that happening then I'd ask her about it. It's great she has such a good friend that cares. Just support her in anyway you can.

T.,

I have heard of these type of problems. My 4.5 year old has autism and sensory integration disorder. Eating/feeding problems are common with sensory integration disorder. There are also a lot of other conditions that can cause eating problems (hypotonia which is low muscle tone, etc....). As long as her speech therapist specializes in eating issues, it is probably an okay deal. Sometimes the therapy falls under speech therapy and sometimes under occupational therapy. It depends on the training and experience of the therapist. Sometimes in "feeding clinics" you'll get a combo of speech, OT, and other doctors/specialists. It really depends.

So the solution depends on what is causing the problem. Since it appears your friend is aware there is a problem and seeking services, it sounds like what she probably needs is support and not criticism. I know as a mom of a special needs kids, sometimes people trying to be helpful come across as very hurtful so tread lightly. I get all sorts of parenting advice and for the most part, it is just plain offensive. When I get advice from a parent who has raised a child with autism that is one thing. But to get it from a parent who has never been in my shoes is really not helpful. It is more like being accused of being a bad parent ("you know, if you spanked your child enough, he wouldn't be autistic any more." Well, not really, he'd just be autistic AND abused).

I will say that this is not normal and it isn't something your friend is doing or not doing and seeking professional help is what she needs to do and it seems like she's doing that.

So my advice to you is to talk to her about what is going on and do a lot of listening and not much talking. If there were a magical cure, she probably would have found it by now.

:-)T.

My son has similar problems though not as severe. We were seeing our physical therapist (for a completly different problem) and she suggested we see a speech therapist for our problem. We spoke that day with a therapist and had some really good results with her suggestions. The most helpful thing was actually a toothbrush. She said to put it in my son's mouth so he could get used to different textures. It has really made a difference. Our problems are not solved because he only eats about 4 different foods but we are making progress. Until a month ago he would only take formula. In the last month he has gained about 5 lbs!

The best way that you can help her is to be her friend and try to understand her life and its challanges. If I were you I would ask her how you could help. You could suggest that she take him to a GI specialist or an Occupational / feeding therapist, if she hasn't already done so. I speak from experience as my daughter has a similar issue but she actually gets her nutrition from a G tube in her stomach. She is almost 3 and weighs 21 pounds. Everyday is a challange but its worth it. I hope you find a way to help, good luck!

Well, my son's situation was somewhat like you described. My son, who is now 5, was diagnosed with high-functioning autism spectrum disorder (this is NOT saying that your friend's child has ASD -- please don't interpret it that way). With ASD you sometimes have oral motor planning issues and sensory processing disorder (SPD), both of which my son had. He worked for several year with a speech therapist to work on strengthening his jaw and tongue muscles, learning to cue his lips, tongue and mouth to get into the proper place to make certain sounds like "n" or "f". Being able to get his mouth work in proper sequence has helped not only his eating but his ability to talk.

With the SPD, for my son, it meant that his mouth was undersensatized and he tended to pack food at the roof of his mouth and put non-food items in his mouth, both of which caused me a great deal of worry for his safety. You know how when you go to a dentist and they give a shot to numb you up before the do dental work? Well, that's how my son's mouth felt 24/7. The occupational therapist worked with my son to become more aware with the parameters of his mouth and also to learn to self-regulate his eating.

It is good that your friend is aware of her son's special needs early and is getting assistance for it. She sounds like and awesome and pretty aware parent.

My son has had eating problems where he gags easily and will throw up if the solids are not relatively soft. We just recently had the Regional Center visit to evaluate him because he was 2 months premature. They were slightly concerned about him not getting enough solids foods because chewing is so closely related to speech development, but they did not think the issue was critical enough to warrant therapy. I think your friend is on the right track taking her son to speech therapy.

My son is now 1 year (10 months adjusted). He eats level 3 foods which has small soft chuncks with no problem, but still gags on drier foods like cheerios. When he eats teething biscuits or arrowroot cookies, sometimes he puts too much in his mouth drools some out. Because the Regional Center therapists and his pediatrician did not seem to be concerned, I have just thought that this is was something he would out grow. After reading some of the responses, I am now more concerned. Is this normal behavior for a 10 month old or is it something I should worry about? Please send me a message if you have any information or have had similar experiences.

I have never experienced this problem with my own children, but I have seen children who have the same problem. This can become an issue if enough is not done to help the child, because he can be underweight, and a myriad of health problems can arise from malnutrition. Generally, this condition can be taken in stride and dealt with as a young child with no lasting effects. In some cases, as with the particular case I am remembering, the child has disabilities and health problems that last throughout her life, as well as an inability to eat most foods properly even as she grows older. I worked with a particular child who had this problem, she is now 11 years old, but my own 6 year old is much larger than she is and she has many disabilities (physical and mental).
The only thing that your friend can do is to work with her doctors, do her research, and pray for her son. As a friend, all you can do is offer support and love when she needs you.

Hi T.,
I went through the same thing! Your son is only 1 yr & 2 months old! My son had & still has a very bad gag reflex & he's 3 1/2. Shoving too much in his mouth is dangerous & I had to teach my son to just put a little in his mouth at a time. Give him a chance. If you still feel that way after a couple of months, then take him to the doctor. I took my son to an occupational therapist for this issue when he was about your sons' age, & she told me to watch him closely while he is eating & keep him from shoving food in his mouth.

I hope that this helps a little.

L.

My son had the same problem. He would gag on a cheerio at 13 months and throw up everything. Unfortunately, the way he learned to eat was by swallowing his food almost whole. When we started speech therapy at 2 years old, she caught the problem and had to teach him to chew and use his mouth muscles properly. This is something usually done by an occupational therapist. My son's condition is unusual. He had an in-utero stroke (not diagnosed until he was 2 1/2) that caused him to have low muscle tone including throat and mouth. He has a very sensitive gag reflex so he threw up a lot until we got the right therapy. He is almost perfect now at 3 1/2. We have an appt. this week with an occupational therapist who specializes in "chewing" this week to get him over some textures that are still hard for him to chew.

L.

I have the same problem with my grandson I would like to see some of these respnses also.

It sounds like you are very well-meaning, but if they are working on the problem, you need to leave it alone...it's their family to deal with.

-M

Hi T.,

This is much too complex of an issue for Mamasource and is best discussed by the parents with the child's doctor. This site is a great source for anecdotal information (that is, personal stories), but keep in mind that most medical problems have multiple differential diagnoses. For example, dysphagia (difficulty swallowing) can be attributed to 311 different conditions/causes. It can indeed be caused by things as serious as an anatomical defect (such as the child with the transesophageal [TE] fistula. This a condition where the esophagus ends as a blind pouch, rather than extending and connecting to the stomach), a constriction, an obstruction, pulmonary edema, aortic valve distention, etc, etc. It can be caused by something as minor as a sore throat, swollen tonsils/adenoids, and GERD. It can have its roots in motor/muscular control. My guess, from the fact that your friends are seeing a speech therapist, is the latter, in which case they are already addressing the issue. Keep in mind though, that just because one child had a problem that was addressed in one way does not mean that it applies to THIS child, or even has any bearing on this child's problem.

The bigger question is whether or not this baby is malnourished. Again, that is for the parents, therapist, and doctor to manage. Since most parents tend to be concerned with their children's eating habits, especially weight gain in infancy, unless the family is neglectful, I'd wager that they are keeping close watch of the situation.

It's tough to talk to a friend about their child's medical condition, no matter how well meaning you are. People often see outside concern as intrusive and can respond with hostility. Alternatively, they often respond with an external laissez faire attitude to mask their own anxiety.

If you want to help your friend, I would suggest you address your concerns in the following way:
"I don't mean to pry, but I'm concerned about ... I'm sure you're on top of the situation, and I hope it's not serious. Please let me know if there is anything I can do to help out."

Hello T.. My 3 year-old boy has had plenty of swallowing issues, but these stem from a condition he was born with (called a TE fistula). The surgical repair of this malformation was just the beginning... We have had to teach him to swallow with a lot of therapy and patience. Along the way we have met other parents with similar problems and, many times, there is not even a physical condition involved; there can be neurological or even psychological elements present. That is why it is important to have an evaluation with an occupational or speech therapist. Sometimes it is necessary to implant a G-Tube when there is risk of poor nutrition... Even though it sounds alarming at first, it can be liberating because pressure is lifted off the child, paving the way for a plesant relationship with food in the future. I am happy to say that my son today eats his food normally by mouth.

Typically swallowing issues are handled by a speech pathologist (speech therapist). I know it sounds a bit odd but qualified speech pathologists handle swallowing issues. It could be a number of things from simply learning how to swallow to sensory issues with textures. Your friend is doing the right thing and I imagine the speech pathologist ordered tests and is working diligently with this child.

One of my twins has had motor/oral problems (extream premmies). He has a feeding tube and didnt orally eat until he was about 10months. Needless to say he struggled. The problems with gaging and throwing up sound very similar to my son. I would suggest having her look into OT through Reginal Center or another program in her area, even if they arnt concerned its better to get an eval. then have the little guy struggle. One thing that did help my son is trying anything everything and find somthing that he likes more then others. And constant reminders while eatting that its yummy, and if he starts gagging that he's ok, throwing up is ok. Throwing up dosent mean STOP trying, let him relax a few mins and try again. It helps to keep them focused on somthing besides on what hes eatting. Over the past several months my son has gone from eatting NOTHING to munching on crackers, and eatting some baby food jars. Texture could have alot to do with it, try everything! Good Luck :-)

I wouldn't interfere to much with your friends baby. As long as he is seeing a pediatrican who monitors his weight, and it seems like he most likely does. A speach therapist is most likely aware of the problem, so she can report back to the pediatricain if need be. As for the weight issue, 18 lbs at 14 mos is small, but not alarming small. Kids grow at diffrent rates. My 2 year old weighed 20 lbs at 1 year old and my daughter who is 3 only weighed 14 lbs. at a year. Diffrent kids! My daughter at 3 1/2 now only weighs 24 lbs. The doctors arn't concerned, so I don't get worried. She is happy and healthy, and that is the main concern. If your friends ask for advice I would give it, but if not, let your friends pediatricain do the worrying for you.

I have seen this with other young children. The children saw an occupational therapist who specializes in feeding issues after having a feeding evaluation done. I saw this because my daughter had to have OT at 18 months old for feeding issues. If your friend is already seeing a specialist, then she's addressing the problem the way her peditrician has recommended. It's an amazingly slow process when there are feeding issues. And, low weight is addressed in other ways if the child is not consuming enough calories. Pediatricians take weight very seriously that I'm sure it's all being monitored. If you're still concerned, you may recommend that you friend get a second opinion. But, it sounds like she's addressing it appropriately. Just pray for her that things improve. It's a stressful situation for any mother.

Hi T.,
It's sounds like your friend is possibly taking her son to an Occupational Therapist who works with feeding issues. Occupational Therapist also work closely with Speech Therapist as they work on oral motor strenght. Sounds very much like he is what is called "pocketing" his food and she is right, it is progress from gagging. You might want to ask your friend if she has had a swallow study done yet. from the sounds of it, she may already have. Hope this info helps.