UPDATE POST 58 Please help me to think things through...issues with 10yo son

[Just Kate]

I'm going to start this post/question/request for advice out with some history. I would really appreciate any feedback!!!

 

Ds has always been an "intense" child. He angers easily and doesn't transition well. He has also always had some sensory issues...very picky eater, hates getting hair cuts and fingernails clipped, doesn't like the way many items feel. I have thought about requesting an evaluation for him many times over the years, but typically I was the only one seeing his issues! Dh thought that his problems were due to not obeying. My parents (who ds sees frequently) felt that ds would just grow out of his issues. Teachers and other authority figures didn't see any problems at all...ds was always very different outside of the home than he was in the home with us.

 

Earlier in this school year, ds started having frequent stomach aches. A few months ago, I took him to the doctor who determined he was constipated and put ds on Miralax. That helped the bathroom problems, but ds continued to have stomach aches so we went to visit a pediatric GI doctor. The doc pretty much blew us off. He felt that ds wasn't constipated and took ds off of Miralax. He asked that we keep a pooping/stomach ache chart and come back. That visit is Friday. Ds's bathroom habits are fine, but he has a few bad stomach aches each week.

 

A few months ago, ds was eating a piece of crispy bacon and he thought that he choked on it (he wasn't choking...I was right there). Dh and I spent the next hour trying to calm him down, as he was convinced he was choking! Ever since then, he has gotten MUCH pickier with food, he chews and chews and chews when he eats (it is painful to watch), and he has lost over 10 lbs! Ds says that he is worried that he is going to choke again. He also says that he "forgets how to swallow". One morning he told me that breakfast is the hardest meal because he just can't remember how to swallow in the morning.

 

Since that time, we have been to see a child psychologist who has ordered a complete battery of tests (first session is today). She said that his issues could be psychological, but that we should keep pursuing the medical side.

 

I took ds back to his regular pediatrician to talk about the weight loss. He feels that we should see the pediatric GI doc and see what he has to say and then we will go back to the pediatrician.

 

I am just so worried about my son. The weight loss is awful (it's really about 15lbs) and watching him eat is just painful. The only foods that he eats well right now are goldfish crackers, applesauce, and chocolate (he will swipe chocolate chips). His diet is just terrible but I have no idea how to fix it!!!

 

When he was a toddler, he used to cough after he would take a drink of water. His pediatrician at that time (different from now) sent him to have a swallow test and that came back fine. I do wonder if there could be something medically wrong there?

 

I feel like I am doing all I can do, but I keep wondering if I am missing something. It won't surprise me if all of this is caused by anxiety. But I just keep wondering if it could be something medical. Also, his ped threw out the possibility of Aspergers. I mentioned this to his teacher and she said that while she would not have thought of it on her own, she could see it as a possibility.

 

If you have read this entire post, bless you! I am just worried and really don't know where to turn. I would love to hear your thoughts!!!

[jenn-]

I know a lot of people don't like the chemicals and other stuff in them, but will he drink some Ensure style of drinks?  How about a well blended smoothie with some protein powder mixed in? 

 

I am on another board with a mom that went through the choking/fear of food with her child and it was a very long process, but he is eating again.  I know calories in was a big thing for them so he drank most of his while working out the swallowing issues.

[Just Kate]

I know a lot of people don't like the chemicals and other stuff in them, but will he drink some Ensure style of drinks?  How about a well blended smoothie with some protein powder mixed in? 

 

I am on another board with a mom that went through the choking/fear of food with her child and it was a very long process, but he is eating again.  I know calories in was a big thing for them so he drank most of his while working out the swallowing issues.

 

Nope...he used to love milkshakes but he says they hurt his stomach now. Although he will drink chocolate milk...so maybe I could add some protein powder to it? Or it might make it too thick and chalky. I don't know. Thanks for the advice though. 

[albeto.]

Oh your poor kid! For sure he's a bundle of anxiety. You're challenge is to find out from where it comes. My understanding about stomach aches that don't have a cause (like constipation) is that they reflect nervousness. A feeling of general anxiety. For some of our kids, that's an internal state, just like happiness or introversion or curiosity. Some kids are just more anxious from the inside out. What you describe with the food makes me wonder one of two things. Either he's extremely anxious, or he's developing OCD rituals. OCD is another neurological glitch, like a mental hiccup, that can't be stopped by force of will. A psychiatric work up should help you determine what's likely going on so you can address it more effectively. Asperger's could also explain that kind of anxiety and that very... practical solution of chewing food a bazillion times. Asperger's and OCD would be addressed differently, as would some other explanation that might be more accurate, which is why I would suggest a psychiatric work-up. 

 

In any case, you should know this isn't a matter of his being willfully difficult. I know you didn't say anything about this, but if it hasn't come out of the woodwork yet, expect it to. People tend to think punishment and the "right" rewards will fix all kinds of things, but with brain-glitches, it simply doesn't work that way. It's no more a "fault" of his than celiac would be. It's also not your fault. You didn't create an anxious kid, so don't let anyone suggest to you otherwise. 

 

You'll get through this. Keep your chin up. Keep as much information written down in a journal as you can. This will help you not only identify trends if any exist, but also give you concrete information when asked. Separate your emotions from pursuing this as much as you can. You'll be putting on a new hat, not wife, not mom, but health advocate. Learn what you can to be a good advocate. 

 

 

 

[Just Kate]

Well, Albeto, I will admit that we used to think that his problem was willful disobedience. He wasn't always difficult...as a matter of fact, it almost seemed like he could turn it on and off! I kept thinking that I just didn't know how to parent him. But things have gotten so much worse. With his eating issues and weight loss, I knew that the problem was much bigger.

 

And as for me not causing this...well, I feel like maybe I have (or we have, his father and me). We have had a LOT of transition over the past few years. I homeschooled ds through grade 2 and he loved it. He didn't want to go to school, but up until very recently, he loved his small private school (now he cries frequently about not wanting to go). We have moved 4 times in the past 5 years and dh now works out of town (he is gone 15 days and home for 6 days). I work part-time (school hours) but my job is really like a full-time job wrapped up in part-time hours. I keep praying that I can quit, but it just hasn't happened yet. If I didn't have to work, I would homeschool ds for sure. But sadly, we need my job financially now. So for an anxious kid who hates change, I've really done a number on him, haven't I?  :glare:

 

ETA: Thank you, Albeto, for your kind response. I am just feeling so frustrated and overwhelmed today. I keep wondering if there is another area I should be focusing on (allergy testing? some other doctor?).

[Katy]

I'm trying to remember from my nursing days what type of professional does swallowing evaluations...  I can't.  But there is someone who does them in every hospital.  Maybe someone else can chime in.

[Tiramisu]

Some children's hospital provide feeding therapy clinics.

 

Sensory problems like you describe also go along with problems in gut motility, probably for some neurological reason. 

 

It's good to get the ASD looked into. It can cause sensory difficulties and goes along with the gi issues. Knowing if that's a factor would give you a head start about what therapy would be helpful.

 

:grouphug: Being a mom is hard and usually not what we expected.  :grouphug:

[whitestavern]

My son has had some of these issues and we believe it is due to anxiety.  He had the swallowing issue and we had all sorts of tests done; even a scope down his throat.  All came back negative.  We give him Natural Calm powder in water and it works like magic.  He likes the lemon or the raspberry/lemon.  Doesn't hurt to try while you're working through some of your other options.

[catz]

Do you think he could do smoothies where you can sneak in maybe some fruit, some flax, some probiotics?  Even if you had to make them with ice cream?  I do agree he sounds very anxious.  My own dd has had some flares of anxiety that have reflected in gut issues and then it can become a horrible cycle.  I would keep following up on the medical and the psych angle for sure.  :grouphug:

[albeto.]

Well, Albeto, I will admit that we used to think that his problem was willful disobedience. He wasn't always difficult...as a matter of fact, it almost seemed like he could turn it on and off! I kept thinking that I just didn't know how to parent him. But things have gotten so much worse. With his eating issues and weight loss, I knew that the problem was much bigger.

 

And as for me not causing this...well, I feel like maybe I have (or we have, his father and me). We have had a LOT of transition over the past few years. I homeschooled ds through grade 2 and he loved it. He didn't want to go to school, but up until very recently, he loved his small private school (now he cries frequently about not wanting to go). We have moved 4 times in the past 5 years and dh now works out of town (he is gone 15 days and home for 6 days). I work part-time (school hours) but my job is really like a full-time job wrapped up in part-time hours. I keep praying that I can quit, but it just hasn't happened yet. If I didn't have to work, I would homeschool ds for sure. But sadly, we need my job financially now. So for an anxious kid who hates change, I've really done a number on him, haven't I?  :glare:

 

ETA: Thank you, Albeto, for your kind response. I am just feeling so frustrated and overwhelmed today. I keep wondering if there is another area I should be focusing on (allergy testing? some other doctor?).

 

You have two children, right? Do they both respond to these transitions similarly? If not, then it's not what you're doing, it's what's going on in his brain. Here's a simple summary of how the brain works. Your sensory organs (ears, eyes, skin, etc) pick up cues from the world around you. You also pick up cues from things like where your body is (balance), and even internal information (from pressure to cellular activity). The brain takes all these pieces of information in and develops a system to predict likely outcomes. I sit in my chair and reach for my coffee, and I perceive the loss of balance. Without thinking about it, my brain notes these variables, makes adjustments, and I tip my coffee cup just enough to prevent a spill. I don't even think about this because I've focused greater attention on reading the words in front of me, formulating or enjoying a mental picture / contrived world. Your son's brain is making these connections, and putting a higher value on variables like possible choking. Add to this the natural adrenaline that is released when he's focused on this, and his body responds to this fight or flight internal micro-environment. His brain is doing the best it can, but somewhere along the way there is a glitch or two. It might be the release of too much adrenaline for the circumstances. It might be not enough serotonin and dopamine. It might be a mental hiccup (OCD), or a lack of connecting all the dots (Asperger's), or any other number of things you could guess about. That's the value of utilizing professional psychiatrists - they study neurology and behavior full time. 

 

Adolescence throws a whole new angle into this. It's not just about hormones, it's also about a growing awareness of his world and his relationship in it. If he perceives that relationship as one of vulnerability, he'll naturally do what he can to keep himself safe. A family therapist might help you help him identify what kinds of things trigger his worry, this feeling of vulnerability, so he can take steps to feel - and become - empowered. Finding a good expert will save you time and further worry, in my opinion. But don't beat yourself up about your working schedule. You cannot control everything that happens, you can only react. It sounds like your reactions are as positive as can be under the circumstances. The circumstances could be better, sure, but they could be a whole lot worse. Play the hand you're dealt, and don't attend to the "what if" thoughts that want to distract you from helping your son.

[Just Kate]

My son has had some of these issues and we believe it is due to anxiety.  He had the swallowing issue and we had all sorts of tests done; even a scope down his throat.  All came back negative.  We give him Natural Calm powder in water and it works like magic.  He likes the lemon or the raspberry/lemon.  Doesn't hurt to try while you're working through some of your other options.

 

Thank you! I will look into this. Did a doctor recommend it to you, or did you find it on your own?

 

I am concerned that his GI doc may want to do the scope and that nothing would be found. I hate putting him through that for nothing.

 

Are you doing any other treatment for your son? Has he gotten better?

[Just Kate]

Do you think he could do smoothies where you can sneak in maybe some fruit, some flax, some probiotics?  Even if you had to make them with ice cream?  I do agree he sounds very anxious.  My own dd has had some flares of anxiety that have reflected in gut issues and then it can become a horrible cycle.  I would keep following up on the medical and the psych angle for sure.  :grouphug:

 

I have tried this, but he keeps saying that milkshakes hurt his stomach now (they used to be a favorite). He is truly that picky now.

[Just Kate]

You have two children, right? Do they both respond to these transitions similarly? If not, then it's not what you're doing, it's what's going on in his brain. Here's a simple summary of how the brain works. Your sensory organs (ears, eyes, skin, etc) pick up cues from the world around you. You also pick up cues from things like where your body is (balance), and even internal information (from pressure to cellular activity). The brain takes all these pieces of information in and develops a system to predict likely outcomes. I sit in my chair and reach for my coffee, and I perceive the loss of balance. Without thinking about it, my brain notes these variables, makes adjustments, and I tip my coffee cup just enough to prevent a spill. I don't even think about this because I've focused greater attention on reading the words in front of me, formulating or enjoying a mental picture / contrived world. Your son's brain is making these connections, and putting a higher value on variables like possible choking. Add to this the natural adrenaline that is released when he's focused on this, and his body responds to this fight or flight internal micro-environment. His brain is doing the best it can, but somewhere along the way there is a glitch or two. It might be the release of too much adrenaline for the circumstances. It might be not enough serotonin and dopamine. It might be a mental hiccup (OCD), or a lack of connecting all the dots (Asperger's), or any other number of things you could guess about. That's the value of utilizing professional psychiatrists - they study neurology and behavior full time. 

 

Adolescence throws a whole new angle into this. It's not just about hormones, it's also about a growing awareness of his world and his relationship in it. If he perceives that relationship as one of vulnerability, he'll naturally do what he can to keep himself safe. A family therapist might help you help him identify what kinds of things trigger his worry, this feeling of vulnerability, so he can take steps to feel - and become - empowered. Finding a good expert will save you time and further worry, in my opinion. But don't beat yourself up about your working schedule. You cannot control everything that happens, you can only react. It sounds like your reactions are as positive as can be under the circumstances. The circumstances could be better, sure, but they could be a whole lot worse. Play the hand you're dealt, and don't attend to the "what if" thoughts that want to distract you from helping your son.

 

Thank you. I needed to hear this.

[albeto.]

Thank you. I needed to hear this.

 

I know it's hard, Kate. I wish I could offer an easy fix or an encouraging word to make it all work out quickly. You've got a steady income, and if you've also got family and friends who can support you, you're ahead of the game. These things are really important. Don't let guilt distract you, and don't let anyone make you feel guilty, not even yourself. You've got a good kid, and he's got a good mom with a fierce momma's heart. 

[dsmith]

Your poor guy! It's good that you are pursuing the medical side of things. Is he going to have another swallow test done? I'm assuming they have checked for reflux and ran some blood work? I'm going to relate our story because I see some similarities. 

 

We first starting noticing sensory issues when he became old enough to let us know what was bothering him. Previously we had a baby that cried constantly, couldn't settle down easily to sleep, was colicky, etc. These became worse in 1st - 2nd grade. He would hold his hand in a fist for days after having his nails cut. Any unexpected/loud noises caused him to hold his ears for a while. Socks were annoying, shirts with tight collars drove him crazy, certain fabrics were not going on his body... He did very well in Pre-K and K at a Montessori school. It was very regimented, much of the learning was very hands on, etc. He was very very shy though. We put him in Catholic school for 1st grade, and it went ok, but it was an adjustment. He was very shy and wouldn't initiate conversations with other kids. The following year is when the real trouble started. His sensory issues became MUCH worse. We started having trouble getting him to school. We found out about a teasing incident that the school handled very well, but just neglected to let us know about it. One day in science, they learned about swallowing, and how choking happened. He became very conscious of his own swallowing. He started avoiding many of the foods he like to eat, which wasn't a lot with his sensory issues. He became convinced that he couldn't swallow and was going to choke. He came home with lunch still in his lunch box. He gave us even more trouble getting to school, and would completely shut down in the hallway while bringing him to the office for a late pass. I started keeping him home when he kept asking me if he was awake or dreaming. He wouldn't leave my side and didn't even want me to go to the bathroom! His weight started dropping, and our pediatrician warned us he would be hospitalized when he lost a certain percent of his body weight. In the meantime we had evaluations with the school, and an evaluation with a pediatric neurologist. He was diagnosed with Aspergers and anxiety disorder as well as an unofficial dx of SPD. (I don't even know - is it an official dx now?) He was put on Prozac for the anxiety, which we struggled with, but it was medically necessary at this point. The list of foods that he would eat became less and less, and finally the only thing he would eat was vanilla pudding. It was painful to watch him eat because we could see how terrified he was of choking. He was convinced that he couldn't swallow anything, especially in the morning. Somehow I got it into my head to look for someone who works with swallowing disorders, and found a speech language pathologist in the area who works with kids on the spectrum and with stroke victims and others who need retraining for swallowing. I discussed with her our issues, and she knew exactly what we were dealing with! She started working with him as she would work with someone with a swallowing disorder. She also knew a lot about SPD and started working on that with him. He added a few things back to his diet and his weight loss slowed. One Sunday he became convinced that he couldn't swallow his saliva and really freaked out! We put a call in to the SLP, and she had us bring him right in. She managed to get him over that, thank goodness! On the next neurologist visit it was decided that an anti-psychotic should be added, as he was still having a ton of anxiety and wouldn't let me leave his side for a minute. He also felt that the hunger this medicine caused would help move things along with the therapy he was receiving from the SLP. He was right! I remember getting the car inspected with ds tagging along, and deciding he wanted something from the snack machine. Peanut butter filled Ritz! They must have thought I was crazy, because I had tears running down my face, lol. We eventually added OT into the mix to work more with his other sensory issues, but the Prozac actually helped the most with his sensory issues. His neurologist suggested he stay home for the remainder of the year, and that became the beginning of our homeschooling journey. The doctor agrees that school is not the best place for him. He still has certain foods he won't eat, but his diet is a lot better than it was back then. (He's 15 now.) He still has anxiety issues, but is not as clingy, lol. He also has some OCD issues and added a tic disorder dx over the years. Anyway, sorry this is so long, and the outcome may not relate to your son's case, but it may be worth looking for an SLP who specializes in swallowing issues. Hugs to you and your son!

[Excelsior! Academy]

You have gotten some excellent advice and encouragement.  The losing weight and swallowing issues would concern me.  Would he drink a smoothie type drink in the morning?  Even by spoonful where it could just kind of slide down his throat?  If he has issues with milk products you could do fruit or a peanut butter/banana.  I was going to suggest yogurt, but with milk issues that is out.  Maybe a yogurt alternative?  We avoid soy products, but if I had a child with those issues I would do *anything* to get food into them.  A soy, rice, or almond milk product could be a good smoothie base.

[Arcadia]

I have tried this, but he keeps saying that milkshakes hurt his stomach now (they used to be a favorite). He is truly that picky now.

Anxiety can cause the tummy to react like a milk allergy. Try yoghurt drink or fruit juice.

Even chocolate bars if that is what he can eat. I had even ate a packet of baking chocolate chips when my weight drop too fast.

Anxiety can make it hard to swallow and make people lose appetite too.

*hugs*

[Amy in NH]

A friend has a son who had similar issues to what you describe with the swallowing, choking, weight loss, and other sensitivities.  She has other children with confirmed celiac, but this one was negative.  An endoscopy found banding in his throat consistent with a severe allergy, which was causing the swallow/choking sensation.  Multiple reflux and allergy meds didn't help.  She took him off gluten and his problems disappeared.  Don't know if that's the answer for you, and the doctors thought she was nuts until his very real problems miraculously solved themselves, but a gluten sensitivity may be something to look into.

[lewber]

I'm sorry your son is going through this. My son had a fear of choking about that age and became very anxious about eating. Cheerios became his staple for awhile. The fact that they would dissolve and babies ate them helped him be comfortable eating them. He ate them dry.

Also if he will exercise that can really help with anxiety. Anything that works up a sweat.

Hope you find some answers soon.

[Jan in SC]

Ask to have him evaluated for eosinophilic esophagitis. It is an allergic condition that causes rings to develop in the esophagus. It causes choking and the allergies can cause severe stomach aches. Don't be afraid to get a different pediatric gastro. Diagnosis is made with an upper endoscopy. During the (really easy) procedure, they can also biopsy and check for other issues, like celiac.

[whitestavern]

Thank you! I will look into this. Did a doctor recommend it to you, or did you find it on your own?

 

I am concerned that his GI doc may want to do the scope and that nothing would be found. I hate putting him through that for nothing.

 

Are you doing any other treatment for your son? Has he gotten better?

 

We did lots of research on our own and found that magnesium helps a lot with anxiety, so we figured it couldn't hurt to try.  The results were amazing.  His stomach aches stopped, the "oatmeal in my throat" feeling stopped (which was why he had some eating issues), his sleeping improved.  Magnesium also serves as a laxative, so if he's having issues in that area, it will help.  He also had some tics.  We started this around 6 years ago and from time to time we've taken him off and assessed where he's at.  The stomach aches and eating issues are now completely gone.  His tics still come from time to time and if they are bad, back he goes on the mag for a while.  The only other thing we did was purchase a relaxation/meditation CD for children.  He only used it a short time, maybe 2 months, so I'm not sure how much it helped.  I hope you find some answers/solutions soon :grouphug:

[Library Momma]

I have a friend whose daughter sounds very similar to your son.  Behavior very different outside the home especially for others vs her parents, sensory issues, melt downs, stubbornness, GI Issues.  She has recently been diagnosed with Aspergers has started medication.  It is so recent that I don't know who that has started affecting her.  I do know the swallowing issues sound very much like her reactions to fears and her anxiety issues.  She remembers everything and does not let things go.  She goes out of her way to avoid or worry about things and situations that may be scared her or caused her pain in the past, even if it might not have seemed like a big deal to others. I could definitely see her being terrified of choking if she had a previous scare, and obsessing about it to the point that it affects her every time she eats or drinks.

[wapiti]

. 

 

[Jean in Newcastle]

My gastroenterologist is the one who looked at me for esophageal spasms.  They can occur further down and so it doesn't look like choking to someone else, but nothing can get past it - even water.  It is very painful.  Natural Calm has helped me because one cause of esophageal spasms are a deficiency in magnesium.  This deficiency doesn't show up in blood tests because the body works hard at keeping your blood magnesium levels as normal as possible.  

[Just Kate]

Wow...thank you all so much for your replies! I keep reading them over and over...I feel like I am learning so much.

 

Here is where I keep having problems...it really sounds like at the very least he deals with anxiety. I am glad we are getting the testing done and hopefully that will help us to get a diagnosis (aspergers, ocd, etc.). However, I keep going back to the fact that it *might* be medical as well. What are the chances that he is having the mental health issues and the more physical issues at the same time? I can push for more invasive testing to try to determine if there might be a physical cause to his stomach problems and feeling like he is choking. But what if it is just the anxiety and I have pushed for these tests for nothing? Can someone please help me think through this?

[wapiti]

. 

 

[Just Kate]

But it wouldn't be for nothing.  Sometimes an important purpose of testing is to rule stuff out.  The invasive ones are a judgment call.  Maybe there are portions of testing that can be pursued first, before something very invasive.

 

My new way of thinking is to look for a biological cause for the anxiety and sensory symptoms, to see whether there's a root, or at least a cause a little further back in the chain, that might be addressed.  This is probably controversial.  This thread today on the other board might help explain my thinking here.

 

Thank you! I will take a look at that thread. So, are you saying that his anxiety and sensory issues could be caused by a physical problem? There could be several things related?

 

(sorry for sounding so dense...this is all just very new to me)

[wapiti]

. 

 

[TechWife]

It sounds like he might have pediatric dysphagia. After he sees the GI doc, consider asking the pediatrician for a referral to a speech therapist that does feeding therapy. They will be able to evaluate him visually and may do a swallow study. After they determine what is wrong, then they would be able to work with him on the issue. It could be sensory related, it could be muscle related, it could be both. It can be a slow process, but it is really worth it. We were able to eliminate some safety issues (coming from swallowing food whole due to a lack of a gag reflex) as well as address some sensory/food preference issues. Not everything is perfect, ds will probably always be a picky eater, but things are so much better now.

[TechWife]

It's all new to me too and I doubt there's any kind standard medical approach for this.  The physical problem would be intestinal-related.

They physical problem can also be related to muscular development in the mouth and throat. A Speech therapist that specializes in feeding therapy would be the one to treat this.

[Momof3littles]

I would do a neuropsych or developmental pediatrician evaluation.  They can take a long time to get into, so I'd look into it now.  They can also be expensive. I would really want an ASD or Asperger's diagnosis ruled in or out, among other possible issues.  Sensory and GI issues can be fairly common with kids on the spectrum.  It may not be that, but I'd probably take it to a developmental ped or neuropsych doc.  Even if it is something more anxiety related for example, they can do a better job of teasing things out.

[jenn-]

Nope...he used to love milkshakes but he says they hurt his stomach now. Although he will drink chocolate milk...so maybe I could add some protein powder to it? Or it might make it too thick and chalky. I don't know. Thanks for the advice though. 

 

Most of those drinks are no thicker then chocolate milk and I know at least Slim Fast are okay if there is a dairy sensitivity going on.  I used Slim Fast to add some protein and vitamins between meals and snacks when I was pregnant with twins and I am lactose intolerant.

[Jan in SC]

I would rule out physical issues with swallowing, allergies, or stomach problems before I begin evaluations for autism or sensory issues.

[amo_mea_filiis.]

I'd ask the gi to rule out things like eos disorders, reflux, and other stuff mentioned above. If that is all ruled out, check out multidisciplinary feeding clinics. They have teams to do evaluations and write up (or carry out) treatment plans. The feeding clinic may have a gi that they work with.

 

If he wasn't losing weight, I'd go right for the feeding clinic, but because of weight, gi is needed (again, gi could be part of the feeding team).

[sbgrace]

I think you might be dealing with OCD.

 

A huge part of my son's OCD was worrying he would swallow wrong and choke/die. He also lost considerable weight. He worried about breathing wrong and swallowing his spit wrong as well.

 

Your son is at a typical age for diagnosis of OCD, though often a parent will look back and see signs earlier.

 

There is a provider list on the OCD foundation website. I recommend you see someone from their list to investigate possible OCD, as it really sounds like that to me. Regular psychs can sometimes miss OCD when it's not a typical type like germ phobia. Here is the provider link, search your drivable area for someone who works with pediatric patients. I would see someone on this specific list for OCD evaluation, even if you have to travel or pay out of pocket. For OCD, you really need someone trained in it specifically. It's treated differently than other conditions. http://www.ocfoundation.org/treatment_providers.aspx

 

My son started N-Acetyl Cysteine. It took a while, but it has greatly helped here. My friend's son started NAC recently. It took a full 9 weeks at the full dose, 12 weeks from the start of dosing, to begin to see response. My son takes 1200 mg twice a day (started 600 mg once a day for a week, then twice a day for a week, working to 1200 twice a day). My friend's son takes 900 mg 3 times a day. He started with 900 for a week, then twice dosed a week, then three times for a total of 2700 mg a day. This is pretty inexpensive, and I think worth trying. It looks like my friend's son's presumed sensory issues might have been early OCD actually (socks didn't "feel" right, etc.) but sensory issues and OCD stuff can/do go together. My friend really thought her son's issues were discipline oriented. Looking back, it was all OCD for him. My son has an autism spectrum diagnosis along with the OCD. This won't hurt to try, and if it doesn't help after 9 or so weeks on full dose, you can just stop.

 

Here is the clinical trial (pediatric) my friend used for dosing her son 900 mg 3 times a day. http://clinicaltrials.gov/show/nct01172275 This is a phase 2 trial. I believe I saw phase 1, and used their pediatric doses for my son (the 1200 twice a day). They likely changed the dosing to increase effectiveness. It's a very safe supplement available over the counter. I cleared it with neurology, genetics, and pediatrics here! They've used it in pediatric cystic fibrosis and other conditions for a really long time. We take it with vitamin C to help process the cysteine component. 

 

I really think this sounds like OCD.

 

edited to add: you can see GI to look for dysphagia, though I'd bet they'll put him on reflux meds just in case and I doubt he needs them. I believe ENT can look for dysphagia too. You said you had a swallow study prior, right?

 

[Jean in Newcastle]

Magnesium deficiency also shows up as anxiety.  Supplementing magnesium will not hurt (unless you are doing iv. supplementation or he has kidney problems, his body will excrete any excess).  Have him take some in the am and some in the pm (right before bed) to keep him from having possible problems with diarrhea.  

[MercyA]

If you are dealing with OCD, Asperger's, or general anxiety disorder, the foods he is eating could be making things worse.  Pepperidge Farm cheddar goldfish crackers, for example, contain annato, autolyzed yeast, and spices (unidentified)--all ingredients that can be triggers for children sensitive to them.  Chocolate almost always contain vanillin, which is artificial vanilla flavoring.   Applesauce sometimes contains "natural flavorings," corn syrup, and even aspartame (Nutrasweet).  I've seen all of those things cause a worsening of symptoms. 

 

If you could find substitutes for these foods, that might help.  (Obviously the ultimate goal would be expanding his diet, but he has to eat!)  Applesauce that just contains apples, ascorbic acid (vitamin C), and plain sugar (or none at all) should be fine.  You can find natural chocolate if you look hard enough--some Ghirardellli chocolate chips are okay, as well as some chocolate from health food stores.  I've also found good natural chocolate at Aldi's.  It's harder to find snack crackers that don't contain problematic ingredients; even the "natural brands" are often full of them.  We've found that Horizon Organic Honey Grahams and Whole Foods Organic Vanilla Animal Crackers are okay. 

 

We've seen huge changes from eliminating preservatives; artificial colors, flavorings, and sweeteners; "natural flavorings," annatto, and all ingredients containing free glutamic acid (the chemical in MSG that causes reactions).  You might take a look at the Feingold Diet website.  If you would like a longer list of ingredients we avoid, feel free to PM me.  

 

I know this type of diet isn't the answer for all children, but it really helped us.  Others have given great suggestions as well.  Hoping you find solutions that help your son feel better very soon. 

 

  :grouphug: :grouphug: :grouphug:

[LostSurprise]

I think it's been mentioned in a sidewise way, but the health professional who evaluates and works with swallowing disorders is the speech language pathologist. Sometimes the SLP will work with general food/kinetic sensitivies, sometimes the OT, and sometimes a behavioral psychologist. It really depends on the clinic/hospital and where you start. 

 

If they don't want to to go the mental route first, the SLP and the allergist are the first places to start (although I think a good behavioral psych is as helpful if there are specific behaviors you want to target). 

[celticmom]

You might want to strongly consider allergy testing. I have had anxiety and other symptoms due to intolerances. Any odd sensations in the throat can be a huge red flag for an allergy that could worsen suddenly.

[Just Kate]

Thank you so much for all of your replies! Ds had his first session of testing today with the psychologist. His second session is next week. Dh, his teacher, and I all had to complete questionnaires and the psychologist will use the testing, along with our responses, to come up with a diagnosis and treatment plan. We won't talk to her again until June 17.

 

Tomorrow ds goes to see the pediatric GI doc. I'm honestly not sure what I'm hoping for here.

 

You all gave me such good ideas but I'll admit that I'm not really sure what to do with all of the info. Do I mention it to the GI doc tomorrow? Do I try to pursue it on my own? How do I even know what to pursue?

 

Ds told me this evening that he thinks his chewing and swallowing problem is a habit that he can't stop. Does this mean that it's not physical???

 

Oh, I did get him to drink a big glass of chocolate milk with added protein powder this evening. The milk was whole milk and I added homemade chocolate syrup and unsweetened protein powder. He struggled to eat half of a peanut butter sandwich but then devoured a s'more. This is why I'm confused!

 

So should I expect that a doctor will quarterback this process or is that going to be my job? And if it's my job, how do I figure out what to do?

[Arcadia]

Ds told me this evening that he thinks his chewing and swallowing problem is a habit that he can't stop. Does this mean that it's not physical???

....

He struggled to eat half of a peanut butter sandwich but then devoured a s'more.

The chewing could be a psychological response.

My 9 year old would devour marshmallows but not touch any egg yolk unless it is in scrambled eggs. It is a texture and taste issue for him. He loves milk chocolate but runs away from dark chocolate. He eats peanuts but won't eat chunky peanut butter, preferring the smooth peanut butter.

 

See what food your son typically eat and maybe just buy more as an emergency food.

 

Some doctors are passive and wait for parents to request while some doctors will suggest and let parents decide. If the GI doctor say nothing, you would have to be the one starting the discussion. I also find out how long the appointment is schedule for and ask as many questions as I need. For example if the appointment is a 45mins one, I'll won't feel bad discussing medical stuff with the doctor for 35 mins or slightly more.

[TechWife]

Ds told me this evening that he thinks his chewing and swallowing problem is a habit that he can't stop. Does this mean that it's not physical???

Not at all, it could still be muscular. When muscles aren't used properly they can become weak. Asynchronous development could also occur in the muscles. What may have started as a habit could now be a problem.

 

Even if it is habit, a feeding therapist can help him overcome the habit.

[TechWife]

So should I expect that a doctor will quarterback this process or is that going to be my job? And if it's my job, how do I figure out what to do?

Well, you have to advocate. When one specialist runs out of ideas, they don't necessarily refer you to another specialist. I suggest you work closely with the pediatrician on this - they are usually really good about referrals and keeping up with things.

[srs]

Big hugs to you - I'm right there in the trenches right now too with my DD7, who has late diagnosed cerebral palsy and we are now getting a swallow study done for choking on thin liquids. Even though we have a concrete cause in her brain injury, what Wapiti said rings true for us too: the neurologic injury leads to sensory issues which affect the gut (also muscle tone issues here).

I would follow the medical trail as far as it seems wise to do so, because even if you do get an autism dx those medical gut issues are still real. And even if it is anxiety and not physical, like a pp said you will be ruling things out.

Our big problem is dehydration, not weight loss, but we have taken DD off thin liquids and are using jello/pudding/ice cream textures for fluid. Our feeding therapist said always use a straw and sit up at a table, and tuck the chin. Would any of those tips be helpful for your son?

[elegantlion]

:grouphug:  Just wanted to give you hugs. I hope you are able to find an answer. 

[Kjsotr]

A Swallow study is non invasive, so I would probably start with that and a Speech Language Pathologist.

 

If you felt like you were choking, you would have anxiety too! So maybe the choking sensation is causing or exacerbating the anxiety, but it is also possible the anxiety is causing the choking sensation.

Other people have given good advice- check out medical AND psychological/ neurological causes.

[EndOfOrdinary]

As an early teen I lost forty pounds in two weeks due to not being able to swallow. Every time I would try I would throw up.

 

Batteries of tests like you are talking about - nothing. It was later diagnosed as stress induced depressive anxiety. How is that for a five thousand dollar way of saying I was a total wreck with everything going on in my family.

 

I developed ulcers which have come back a few times, but I understand them now and can really help myself. The only way that milk and lactose did not hurt my stomach is to have large amounts of caffeine with them. I could drink 8 ounces of a latte, but not eat ice cream. This sounded familiar to your son with the chocolate. Labor was less painful than when my ulcer went crazy three years ago. Before that night, I had stomach pains that I attributed to all sorts of other things and I avoided a lot of foods because I could not place why they made me hurt.

 

I would honestly go with the idea of an anxiety, OCD sort of thing right now. Like a coping mechanism and something he feels he has false control over. Food is often times the number one place that people begin to exert control in their lives, either through over eating or under eating.

 

My issues have come back multiple times in my life when I am stressed, and I still have no hunger reflex when stressed. However, they have never been as bad as when I was a teen and did not understand them. The entire idea of food gives me problems when I am upset. I have weird food habits now that have to do with control (no mixing of food, I want to control the proportions for each bite), textural things (eggs disturb me, so does Jello), and generally would be called quirky. It is an anxiety issue. However, the first meal my husband made for me when we started dating was a pasta dish heavy on the milk products that he proceeded to mix up right in front of me to my undisclosed horror. I was very polite and forced myself to eat it. We laugh about it now. So all is not lost if your son does not necessarily shed all his food quirks. He can make healthy eating decisions and be polite while still being a bit odd :)

 

Good luck. I am in no way trying to convey that this is something you did to your son. I am just saying that he might have picked a rather unhealthy way to cope with the inevitable transitions of life. Some of us have more trouble with that than others. If you can find it now, hopefully he can actively begin managing it.

[kiwik]

The body and the mind are not separate from each other. If it is for instance OCD causing a lot of the problems he still could have an allergy or something. Or the physical could be causing the mental or vice versa. As the saying goes - just because your paranoid doesn't mean they aren't out to get you.

 

Hugs. I hope you get some answers soon.

[Tiramisu]

Thank you so much for all of your replies! Ds had his first session of testing today with the psychologist. His second session is next week. Dh, his teacher, and I all had to complete questionnaires and the psychologist will use the testing, along with our responses, to come up with a diagnosis and treatment plan. We won't talk to her again until June 17.

 

Tomorrow ds goes to see the pediatric GI doc. I'm honestly not sure what I'm hoping for here.

 

You all gave me such good ideas but I'll admit that I'm not really sure what to do with all of the info. Do I mention it to the GI doc tomorrow? Do I try to pursue it on my own? How do I even know what to pursue?

 

Ds told me this evening that he thinks his chewing and swallowing problem is a habit that he can't stop. Does this mean that it's not physical???

 

Oh, I did get him to drink a big glass of chocolate milk with added protein powder this evening. The milk was whole milk and I added homemade chocolate syrup and unsweetened protein powder. He struggled to eat half of a peanut butter sandwich but then devoured a s'more. This is why I'm confused!

 

So should I expect that a doctor will quarterback this process or is that going to be my job? And if it's my job, how do I figure out what to do?

 

What to bring up with the GI? Eosinophilic esophagitis and the muscular issues which have been discussed.

 

A major feature of eosinophic esophagitis (sp?) is difficulty swallowing. You can get blood tests to check eosinophic disorders. Often these are associated with allergies. You will need an endoscopy. Endoscopies are really very, very easy, as others have said. Our big mistake was waiting too long. An endoscopy will also rule out reflux.

 

About the anxiety thing. My advice is to never, never accept anxiety as an explanation without looking into physical causes. Anxiety, IMO, is often the result not the cause. If eating is going to make you feel like you're going to choke or feel sick afterward and keep you from sleeping, you might feel justifiably freaked out. In any case, doing something to help with the anxiety, regardless of whether it is a symptom or cause, is a good idea.

 

All my kids are a bit anxious and have mild/moderate SPD. Oldest complained of difficulty swallowing and a feeling that her throat was sticking together, as well as frequent nausea. We unfairly attributed this to anxiety for much too long. When we finally, much too late, got the endoscopy, they did find inflammation. Other testing has revealed that she's a bit uncoordinated and that affects her gut motility as well. 

 

Other dd's also have chronic stomachaches and difficulty sleeping. Everyone seemed to think it was anxiety. This year we found they all have various allergies, including to staple foods. They never showed this on the outside as typical allergy symptoms so I never suspected it. Our pediatrician after seeing the allergy results thinks they may have an eosinophilic disorder. This is supported by the fact two of them have a history of high eosinophils in their basic bloodwork. A diet changed has helped a lot.

[Just Kate]

What to bring up with the GI? Eosinophilic esophagitis and the muscular issues which have been discussed.

 

A major feature of eosinophic esophagitis (sp?) is difficulty swallowing. You can get blood tests to check eosinophic disorders. Often these are associated with allergies. You will need an endoscopy. Endoscopies are really very, very easy, as others have said. Our big mistake was waiting too long. An endoscopy will also rule out reflux.

 

About the anxiety thing. My advice is to never, never accept anxiety as an explanation without looking into physical causes. Anxiety, IMO, is often the result not the cause. If eating is going to make you feel like you're going to choke or feel sick afterward and keep you from sleeping, you might feel justifiably freaked out. In any case, doing something to help with the anxiety, regardless of whether it is a symptom or cause, is a good idea.

 

All my kids are a bit anxious and have mild/moderate SPD. Oldest complained of difficulty swallowing and a feeling that her throat was sticking together, as well as frequent nausea. We unfairly attributed this to anxiety for much too long. When we finally, much too late, got the endoscopy, they did find inflammation. Other testing has revealed that she's a bit uncoordinated and that affects her gut motility as well. 

 

Other dd's also have chronic stomachaches and difficulty sleeping. Everyone seemed to think it was anxiety. This year we found they all have various allergies, including to staple foods. They never showed this on the outside as typical allergy symptoms so I never suspected it. Our pediatrician after seeing the allergy results thinks they may have an eosinophilic disorder. This is supported by the fact two of them have a history of high eosinophils in their basic bloodwork. A diet changed has helped a lot.

 

Thank you! When all of this started (a few months ago), the pediatrician ran a full blood panel on ds. Everything came back normal. Would eosinophic disorders have been included in this?

 

And I have a silly question...I am always confused when people speak of gut motility like you did above. Can you explain this to me (pretend I am a kid - lol) or maybe give me some direction on what to google to learn more? I do understand that kids with Autism Disorder also have gut problems, but I don't really understand it at all. And I don't understand what you mean about your daughter being uncoordinated. I want to have a good understanding of this, but when I search I don't seem to find what I'm looking for.

 

I have also considered trying a gluten free diet for years. Ds has always eaten a lot of gluten-containing foods. He was tested for Celiac and according to the blood test, he doesn't have it. I am scared to do this now though since: 1. He has such a small list of foods that he will eat...going gluten free may mean that he eats even less, and 2. I know that if they do want to do further testing, it is important that he still have gluten in his diet.  Do you have any thoughts on gluten?

 

So if I do want to pursue allergy testing, is this something I should talk to the pediatric GI doc about today? Or should I just speak to the pediatrician. Honestly, I don't really like the pediatric GI doc, but we live in a rural area so I don't have many choices. He is supposed to be good though.

 

Thanks again for all of your responses! I just want to help my son...he is so unhappy these days.