Anxiety, food issues, sensory issues, behavior issues in DS...what to do?

[Just Kate]

I know I have to do something. All of the issues that I thought ds (age 10) would grow out of...well, he hasn't. I have honestly always wondered about a food intolerance (gluten? dairy?) but my husband keeps telling me "it's all in his head". I have posted about ds before and gotten some wonderful responses. I'm just not sure where to go from here. For some background...

 

• Ds has always been a picky eater (well, since about the age of three...was a surprisingly wonderful eater as a toddler). He likes carby foods, most chocolate, strawberries and bananas, hot dogs, and turkey sandwiches. A few months ago, he thought he choked on bacon (I was with him...he really wasn't choking). In the months following, he stopped eating and dropped 10 lbs. He is eating again, but now when he eats he chews and chews and chews his food. He takes a long time to eat and he also clears his throat constantly after eating.

 

• Ds had a lot of stomach aches during last school year...so many that he missed a lot of school (not a ton, but more than he should have missed). At one point he was diagnosed with constipation by his pediatrician. He saw a Pediatric GI specialist and had an endoscopy. The results where fine. He also had a blood test done and the results were fine.

 

• We took ds to a psychologist who did a bunch of testing. DH, ds's teacher, and I also completed paperwork about ds. The results were that ds has anxiety and depression (mild). We thought it was possible that he may have mild Aspergers, but he didn't test that way. He is seeing the psychologist twice a month for this (just started). He also has some sensory issues, so the psychologist recommended looking into OT, which I am working on.

 

• Ds seems to have two personalities. He can be the kindest, sweetest, most mature kid in the world. Adults tell me all the time that talking to him is like talking to a mini adult. He is very serious and gets almost-obsessed with his current interests. But he can also be quite irritable, grouchy, and mean. He is very negative and will often respond to me with a hateful tone before he even knows what I am going to say! He seems sad a lot of the time and honestly, isn't much fun to be around. That kind, sweet boy is still there, but he just doesn't show up often anymore.

 

• Another weird symptom is that ds is always complaining of being tired. We live in a neighborhood of a bunch of kids who are constantly playing tag, basketball, etc. and ds always says he can't catch up. He also calls himself "weak," which makes me so sad. When asked to do something (even something quite simple), my request is met with him acting like it would be painful for him to do it (as in...But Mo-o-o-m....I'm so tired).

 

As I said before, dh thinks that ds deals with anxiety and that the anxiety is causing his problems. I really think that there is something physical that is causing ds to feel this way. Just tonight, ds and I were alone and I talked with him about it. He admitted that he feels badly most of the time. He did say that the good news is that his stomach doesn't hurt like it used to. But when he eats, he feels like his food is getting caught in his throat AND he is scared of choking. He is embarrassed to eat in front of others because of this. He told some friends today that his teeth were messed up and that's what causes him to eat and chew so slowly (his teeth are fine...he was just embarrassed by how he eats).

 

Ds has had behavior problems for many years. I always thought he would grow out of them, but he hasn't. He is just a very intense kid! But the food and behavior problems together are making life so hard. Dinner time is a nightmare. Unless it is pizza or hot dogs for dinner, he whines and complains. When I serve other foods, he barely eats. He says he just can not eat so many foods (sensory issues?).

 

In the back of my mind, I have always wondered if he has a gluten or dairy intolerance. So many things that I read seem to make this a possibility. But with his pickiness, the thought of doing the elimination diet...oh my, it just stresses me out. I did discuss it with ds earlier today and he said that he may be willing to try if I thought it might help him to feel better. I really don't want to do that unless I really, really think it might help.

 

So, I am asking you...the oh-so-wise Hive...what do you think? I am just beside myself here and I know there is some solution out there for ds. 

[Incognito]

Wow - a lot to sort out.  

 

Did your testing point to a suggestion for an OT evaluation?  That could be something to consider because of his lack of wanting to do physical things.

 

It does sound like trying an elimination diet would be a good idea.  Does he like smoothies?  You can hide a lot of goodness in those.

 

[Jilly]

I would give him time with the psychologist for a while and see what they have to see. If he does have anxiety it could be causing him to physically feel bad. In addition I would follow up with OT for the sensory issues. I think you might be surprised by how much OT can help kids who are highly sensitive. In the meantime hang in there. Your sweet boy is not lost, he just needs some help.

[HS Mom in NC]

Google Diane Craft.  This is her specialty.  She's a staple at homeschool conventions so she can help with everything from behaviors affected by diet to teaching techniques for kids who need right brain oriented teaching.  Also, she's delightful to listen to in person.

[Just Kate]

Wow - a lot to sort out.  

 

Did your testing point to a suggestion for an OT evaluation?  That could be something to consider because of his lack of wanting to do physical things.

 

It does sound like trying an elimination diet would be a good idea.  Does he like smoothies?  You can hide a lot of goodness in those.

 

Well, the psychologist said that maybe I might want to look into OT. I don't know if that was because I brought up sensory issues or if it was from the testing.

 

I am really leaning toward an elimination diet. I guess I just need someone (or even more!) to tell me it's a good idea. My dh will go along with it, but he doesn't think it is necessary. He also works out of town, and works very long hours, so it's not like he has spent much time researching ds's situation. Maybe I am looking for validation...that my choices aren't silly. A lot of people that I am around in real life don't really keep up much with current health trends. For instance, I eat a very low-gluten diet (kind of low-carb) and no sugar. My family thinks I am nuts (although they are very kind people...they just don't "get" it).

[Catwoman]

Has he been under a lot of stress at school? Are neighborhood kids picking on him? Is he worried about anything?

 

He sounds very anxious. Does he do better when you're away on vacation, or during school breaks?

[Just Kate]

Has he been under a lot of stress at school? Are neighborhood kids picking on him? Is he worried about anything?

 

He sounds very anxious. Does he do better when you're away on vacation, or during school breaks?

 

He likes his school...or he did until he had the "choking" incident and had trouble eating. Now he wants to be homeschooled again because he doesn't like eating around other people. We did have one incident with a neighborhood kid, but we worked it out and everything has been fine since. As a matter of fact, he loves playing with the neighborhood kids so much that I'm having to make "family only evenings" so that we all stay home together. I don't think there is anything specific that he's worried about. And sadly, his behavior is the same during school and during breaks.

[Catwoman]

Do you think homeschooling again would help him?

 

Based on your posts, I have no clue, because it sounds like he's behaving the same way even when he's not in school.

[Just Kate]

Do you think homeschooling again would help him?

 

Based on your posts, I have no clue, because it sounds like he's behaving the same way even when he's not in school.

 

I would love to homeschool him, but I have to work. I work part-time (school hours only) from home. Occasionally I have to go out of town to visit clients. I have considered homeschooling him again, but we would miss out on all of the fun homeschool things because of my hours. I really think he would be lonely.

[Guest submarines]

DD has many of the issues you described and getting off gluten was immediately helpful--her lows are just not as low now. She's bbeen off gluten for over 3 years now, and can't tolerate any of it without an allergic reaction. (While previously she had only mild GI issues and all the doctors insisted it couldn't be gluten related.)

[Just Kate]

DD has many of the issues you described and getting off gluten was immediately helpful--her lows are just not as low now. She's bbeen off gluten for over 3 years now, and can't tolerate any of it without an allergic reaction. (While previously she had only mild GI issues and all the doctors insisted it couldn't be gluten related.)

 

What made you decide to go gluten free? What about dairy? I often see that if there is a gluten intolerance there may be a dairy intolerance as well. Was your dd a picky eater? Behavior issues? I so want to find something to help ds.

[The Governess]

Well, here is my guess. It's possible that when he thought he almost choked on the bacon, what really happened is that he swallowed too big of a piece and it stuck in/scraped his throat. This can create the feeling, for days after, that there is something stuck in your throat. Then, his anxiety kicked in, which can also increase that "lump in your throat" sensation. Then, he probably stopped eating and drinking as much as he should have, which may have left him with some extra acid and digestive issues. And if he had any reflux from that extra acid, that lump-in-throat feeling could be triggered from that also.

 

Something similar happened to me once. I swallowed something sharp and it stuck in my throat and then scraped the whole way down. It was a few weeks before I could eat normally again. Not fun, and I can totally see how it could trigger anxiety symptoms.

 

I would suggest trying a couple things. First, try switching to a mostly liquid diet for a week to give him a break from the chewing and worrying about food getting stuck. Try smoothies, juice, protein drinks, yogurt, applesauce, thin puréed soups like sweet potato, and lots of hot chicken broth. See if his throat starts to feel more normal. If it does, try gradually adding in some regular food again. I think the important thing is that he keeps himself hydrated and has a good mix of gentle food consistently going through his digestive system while this gets figured out. The not eating consistently combined with the anxiety could really be adding to the problem.

 

ETA: the throat clearing after eating also seems like a reflux thing to me. If it persists, you might want to think about trying an acid blocker for a couple weeks.

 

ETA (again): the food pickiness, digestive issues, fatigue, and grouchiness could all be symptoms of his anxiety. I bet if the anxiety is treated, all of these things will get better. Have you tried any natural anxiety helpers? Magnesium? Deep breathing? Yoga? Daily exercise? Anxiety can create serious fatigue, but getting consistent moderate exercise actually helps with this - even though it's probably the last thing he feels like doing.

 

Poor guy. I hope it's all resolved soon.

[bettyandbob]

OT can help with sensory issues, sensory issues with food and motor issues (overall strength ). Look fir a ped OT who specializes in sensory issues.

 

Find an individual sport that uses the full body and enroll him. I like martial arts. If you choose martial, look at a few studios before choosing. Ask about the types of kids they've had and if they've had any special needs kids. You could also look at gymnastics and swimming. My ds did gymnastics at a place that managed to set up a group like him.

 

Do an elimination diet or find a nutritionist who can test for allergies AND intolerances. Eliminate anything with even a mild reaction for a while. Eliminate all artificial colors and flavors (these may exacerbate anxiety in some people).

 

Test for environmental allergens. If your son is allergic to certain pollens, eliminate foods that are related. I'm sorry I can't link a chart here. An example my ds is allergic to most grass pollens--so he doesn't eat grains.

 

What you've described sounds like anxiety is a big issue to me. I think it's important to clean up the diet, get good heavy exercise daily, and work on OT, so a doctor looking at the anxiety can see your ds when he's physically at his best. All those things can help control anxiety. But at some point you may have to consider a pharmaceutical intervention.

[Pippen]

Even if he didn't get a clinical diagnosis of AS, you will find a lot of help in dealing with these issues in the Autism camp.  You also may want to read up on Executive Function Disorder, because it often explains the rigid thinking and difficulty in problem solving that these kiddos have, and typically leads to much grouchiness and many conflicts.

 

Anxiety, inflexible thinking, and sensory issues all feed upon each other, so anything that you can do to address any of those issues may help the others. Certainly OT should help, but I believe feeding/swallowing issues are often treated by speech and language pathologists. You should look for someone who has expertise in the area of feeding therapy. The complaining about being tired and weak could be low muscle tone, which OT can help to identify.

 

The chewing and throat clearing sounds like an obsessive behavior resulting from anxiety. Do you know if he's counting the number of times he chews?

 

BTDT on all of these issues. I definitely wouldn't switch to a liquid diet because often kids with these issues won't return to foods or textures that they have given up.  For now until you know exactly what's going on in the sensory area, and have some expert help in treating it, I would feed him the foods that he comfortably eats and not worry about making him eat what the rest of the family eats. I know it goes against the grain of traditional parenting, but you sound like you aren't parenting a typical kid.

 

Look for ways right now to reduce his anxiety levels, because that has to happen before he'll be in a place where he is emotionally ready to make forward progress in the other areas.

 

There's a book called What Your Explosive Child is Trying to Tell You by Douglas Riley that may help you sort some of this out.

http://www.amazon.com/What-Your-Explosive-Child-Trying-ebook/dp/B003KK5DZO/ref=sr_1_1?ie=UTF8&qid=1405321032&sr=8-1&keywords=what+your+explosive+child+is+trying+to+tell+you

 

There's another called The Explosive Child: A New Approach for Parenting and Understanding Easily Frustrated, Chronically Inflexible Children by Ross Green. This book can give you a strategy to help with some of the behavioral issues.

http://www.amazon.com/What-Your-Explosive-Child-Trying-ebook/dp/B003KK5DZO/ref=sr_1_1?ie=UTF8&qid=1405321032&sr=8-1&keywords=what+your+explosive+child+is+trying+to+tell+you

 

 

[Laurie4b]

Here is the thing: it's rare that there is one thing, linearly causing all the issues. It's much more likely that where there is one thing "off" (like anxiety), there are also other things "off" (like sensory issues, etc.)  If you consider that if there is something out of whack with the brain in one part, it makes sense that there could be things out of whack elsewhere AND these things end up interactive, synergistic.

 

Having a ds with multiple issues, I would recommend the OT as fast as possible. That's where you will create physical changes the fastest. The psychologist is great and can work with cognitive stuff, but what an OT will do will affect the actual functioning of the neurological system. It will be synergistic healing. His symptoms of fatigue and weakness may be absolutely real and not related to anxiety. You may find he has low muscle tone (it's neurological not the result of lack of strength training) and/or subtle issues with coordination. Those can be evaluated by an OT as well as the sensory issues. He is on the older side for OT, so don't wait.

 

Why not try an elimination diet? Since you suspect it, will probably not hurt other than being a pain in the butt. My greatest concern would be if ds gets a phobia about foods, since he's so prone to anxiety. (But then again, the anxiety can be produced by an out-of-whack gut.) If possible, you might put the whole family on an elimination diet so he's not singled out.  Try to get some help from someone IRL. It's a real pain in the neck and it can help to have real-life support. Finding out what you CAN have is as important as what you need to avoid. I'd go for gluten and dairy to start with.

[Tanaqui]

I have honestly always wondered about a food intolerance (gluten? dairy?) but my husband keeps telling me "it's all in his head".

 

Well, yeah, but that doesn't mean it's not real or that there isn't a physical factor. Your head is part of your body.

 

I would be cautious about trying an elimination diet with a kid who *already* has a very restricted list of foods he eats. It's not that I think it won't be helpful - at the very worst, you'll find out your husband was right all along and he'll say he told you so - just that before you go into this you have to have a plan for what to feed your son. If 9/10 of the foods he'll eat are on your elimination list it might be a hard sell to him!

 

Either way, I think he would probably benefit from being evaluated for OT. And really, it's the same as the elimination diet. The worst that can possibly happen is you find out he's not eligible and you wasted a few hours of your life.

[carriede]

An elimination diet would not hurt. Worst case scenario, you find out he has no sensitivities and waste a lot of time/energy/money.

 

I would definitely try it. Perhaps just eliminate the "major" allergens like gluten and dairy first if you don't want to do an all out elimination diet.

[LostSurprise]

If you're unsure about doing an elimination diet, ask his psychologist first. They may want to integrate at a certain time. Also, check with them if you want to do a liquid diet. You definitely need to be coordinated. 

 

With complex issues like this, we rarely understand everything that's a factor. The best we can do is slowly test or fix things one thing at a time. As pieces fall into place we can change other things...and hopefully see more of the puzzle. 

 

Keep working with the psychologist. When ds feels comfortable with that make an appointment with OT or SLT. Both can be helpful. Speech Language Pathologists can do a swallow test, to see if his tongue and swallow function is working correctly. Basically he'll drink a little barium? in front of an X-ray screen and the SLT can watch and evaluate. Most SLTs can watch a child swallow water and see whether an x-ray is necessary. An OT can work with sensory issues and evaluate if he needs strengthening. It may help tease out if he just feels weak or if he truly is weak in some area. 

 

This is a good start. I really wish you well! I know how difficult food and anxiety issues can be. 

[sbgrace]

It could certainly be food related.

 

But the chewing thing really sounds like anxiety to me. Some of the rest could very well be the depression.

 

Did the psych who dx'd him with those things suggest treatment? Cognitive behavioral therapy and/or medication?

 

I'd try to address those known issues, and see what you're left with if I was you I think.

 

 

[wapiti]

My two cents - We were on a similar path when things got interrupted by something bigger (and even worse, unfortunately; still sorting that out but it is off-topic).  I would start with the idea of the brain-gut (and possibly -immune system) connection ("the second brain") and guess that issues in the gut are causing or contributing to anxiety and it has become a bit of a vicious cycle.

 

What is annoying, from a parent perspective, is that now that you've seen GI and the psychologist, there doesn't seem to be one clear path out of this, at least not from a big-picture, mainstream medical perspective (IME, the mainstream perspective is likely to be more piecemeal, e.g., go see a psychiatrist for psychiatric meds).  Eliminating certain foods, either temporarily or forever, is one possible angle to "fixing" the gut problems but may not be everything needed and of course the other question would be what to eliminate.  (Eliminating foods can make it hard to add the food back in later, as the body may reduce production of enzymes necessary for certain foods and it can take a long time to get that back - that happened to me for eggs and dairy and it took a good two years of eating small amounts before I could really eat them freely again.  Now I eat them fine.)  There may be additional angles to consider, such as inflammation, probiotics, and last but not least, adding supplements to help with neurotransmitters on a temporary basis for the anxiety.

 

OT is another possible avenue for working on the central nervous system vague dysfunction (BTDT) but intuitively I might want to work on the biological/gut stuff first under the idea that OT might be an uphill battle if the cause hasn't been addressed.  Plus, it's very expensive, naturally *sigh*.  Eta, thinking more on this, if swallowing continues to be a problem, I would definitely consider OT for that specific issue.

 

I don't remember whether I posted this in another thread on this topic but you might look into seeing a nutritionist or pediatrician of a more "alternative" or "integrative" perspective to guide your decisions.  I'd start by googling "integrative pediatrician" in your city.  (Be forewarned that, at least in my area, these people do not take insurance and are not cheap, though you can submit to insurance afterward.)  We saw such a ped who did recommend GFCF generally ("it's great!"), but I'm a little more conservative in that I might be hoping for a more specific indication that gluten or casein were causing problems.  Testing only goes so far, but it might provide guidance - two tests I can think of are the one from Great Plains that looks for peptides of those two things (urine) and the IgG foods test, for "intolerances," which may have limited accuracy - very controversial (we have not yet done the IgG foods test for the reason that I don't yet feel comfortable with it's accuracy; both the alternative ped and the nutritionist recommended it, however!).

 

Clear as mud?  This is just my own perspective of course.  I am certainly desperate enough to try GFCF at this point but I don't have a buy-in from ds right now and I'm not at all certain that it's necessary or will fix his particular issues.

 

Eta, so with you with the dh who thinks it's all in the ds's head

 

On the weakness/tiredness, I would be considering two things, vague "energy" and muscle tone (central nervous system), which might even be one in the same - just thinking out loud.  Supplements that come to mind would be vitamins B, C, D, and possibly L-carnitine if there is a muscle tone issue.

 

Keep trying to get to the bottom of things.  It's out there; you just don't know what it is yet.  I firmly believe that the anxiety stems from a real biological problem, that inner sense that something is not right with himself.  He has had a CBC, yes?

[SadieMarie]

We did the GFDF diet for a year with a picky eater.  It was hard at first but she did get used to it.  You can pretty much replace everything except cheese.  There is no DF cheese that isn't gross lol.  You could do it gradually too.  First replace snacks and then breakfast, then lunch and then dinner... or something similar.  We got rid of the gluten first and when that was gone we did the dairy. 

 

Anxiety can cause a lot of stomach problems.  I see that with my older dd.   

[Lizzie in Ma]

For what it's worth...

http://www.lymedisease.org/resources/children.html

Quoting from the page

The resulting neurologic symptoms of Lyme disease are often misdiagnosed. Lyme pediatric specialist Charles Ray Jones, MD, compiled a list of common symptoms of infection in his young patients:

• severe fatigue unrelieved by rest
• insomnia
• headaches
• nausea, abdominal pain
• impaired concentration
• poor short-term memory
• inability to sustain attention
• difficulty thinking and expressing thoughts
• difficulty reading and writing
• being overwhelmed by schoolwork
• difficulty making decisions
• confusion
• uncharacteristic behavior
• outbursts and mood swings
• fevers/chills
• joint pain
• dizziness
• noise and light sensitivity

[Mom-ninja.]

I'd take him back to a GI. Have them do more tests. I'd also take him to an allergist.

 

What did they recommend for the constipation? Did they do a liver panel? Kidneys? Test for Crohn's and the like?

 

I've had issues myself and with my ds. My experience has been that trying to figure things out without tests was a big mistake. The doctor I was seeing at the time is big into leaky gut and food being the #1 cause of symptoms. My ds and I suffered for years doing elimination diets, probiotics, herbs, supplements for leaky gut and various other ailments, meditation and practiced breathing all prescribed by this MD.

 

I finally decided to get second opinions from other doctors. They ran tests. They got to the root of the problems. They fixed them. Turns out I have 2 autoimmune diseases. Those are now being properly treated and my anxiety and other problems are gone. My ds simply has environmental allergies. The allergist has prescribed meds and every single one of his gut problems and his anxiety is gone.

 

My ds had been on a strict elimination diet (for years) by the previous doctor and yet he never got better. He got worse. In fact, he developed anxiety over food because the doctor had convinced him that food was making him ill. He became scared to eat. Food was not the problem. At all.

 

So, I just wanted to share my experience because it seems that all one hears is how beneficial elimination diets are and how they solve all problems. I had the opposite experience. My ds now happily eats a full range of foods (including ones he's been told could kill him) and he is much healthier and happier.

 

I hope you figure things out sooner than later. It's so hard when our child is not well and we don't know why or how to help.

[dirty ethel rackham]

Has he had a neuropsych evaluation?  Has he had an OT evaluation?  Kids with sensory processing issues have trouble with lots of other things because their nervous systems have to cope with so much.  For my son, a conversation in a crowded room was like trying to hear someone over a jet engine.  The seam on clothing felt like sandpaper on his skin.  Unpleasant textures in food were like trying to eat food laden with pebbles.  Working on the sensory issues helped all of the other issues for him - his mood and behavior improved.  I would ask over on the special needs board for more information.  

[wapiti]

My ds had been on a strict elimination diet (for years) by the previous doctor and yet he never got better. He got worse. In fact, he developed anxiety over food because the doctor had convinced him that food was making him ill. He became scared to eat. Food was not the problem. At all.

FWIW, I have a friend who works in an eating disorder clinic and apparently they see this situation quite often. Unfortunately I do not know how often they figure out the real root of the problem, whether that is autoimmune or other (they are very mainstream). This is a part of my reluctance to go that route, at least not at this particular point in time.

 

I agree that more testing would be the way to go. Now if only one could have access to all the right testing - if it exists - and from a central provider *sigh*. I feel that there is no single doctor I can trust with the big picture. This is so stressful.

[J-rap]

My son had some similar issues -- not the sensory issues and depression, but other things.  He was always very mature for his age too, and very intense.  Also, once a thought got into his head, he often couldn't let it go.  He would learn something was good for you or not good for you and then took it to the extreme.  He would absolutely throw himself into whatever he did.  He was also tired a lot and had stomach issues.

 

A few years ago, he want on a gluten-free/dairy-free diet.  He sometimes cheats with dairy, but he is very strict about the gluten.  It is amazing what a difference it has made in his life.  He does not have that constant lethargy that he used to struggle with, nor the stomach pains.  He is still a very intense person but, well, we just know that about him.  :)  He is a great guy, incredibly bright, and when he throws himself into a project you know it will be done right. 

 

The brain and personalities are so complex.  As others have said, it's most certainly not just one thing behind it all. 

 

 

 

 

[Mom-ninja.]

FWIW, I have a friend who works in an eating disorder clinic and apparently they see this situation quite often. Unfortunately I do not know how often they figure out the real root of the problem, whether that is autoimmune or other (they are very mainstream). This is a part of my reluctance to go that route, at least not at this particular point in time.

 

I agree that more testing would be the way to go. Now if only one could have access to all the right testing - if it exists - and from a central provider *sigh*. I feel that there is no single doctor I can trust with the big picture. This is so stressful.

Yes, it took some work on our part (and the new doctors) to convince him that food was 1) necessary and 2) not the enemy. It makes me angry when I think about it.

 

Hugs to you as you seek out doctors and solutions.

[Just Kate]

I have had quite the morning (woke up to no water...and then had to pick up my broken laptop from the shop), so I am just able to read your responses. First, thank you so much for taking the time to respond to my question. It is amazing how much I learn here. And honestly, it is no wonder that my dh thinks that problems are in ds's head. He doesn't read any parenting forums or websites...I could possibly feel the same way if I didn't have the info I have gained from here.

 

I am going to go through and answer questions. Hopefully my clarifications and answers will help. Thanks!

[Just Kate]

 

 

The chewing and throat clearing sounds like an obsessive behavior resulting from anxiety. Do you know if he's counting the number of times he chews?

 

 

 

I don't think he does...although I should probably check. He says that it feels like there is something in his throat, so he clears it. 

[Just Kate]

 

 

Did the psych who dx'd him with those things suggest treatment? Cognitive behavioral therapy and/or medication?

 

 

 

Cognitive behavioral therapy. She said we could talk about medication later...depending on how he responds to the therapy. Of course I don't want to go there, but if we have eliminated other things then I will.

[Just Kate]

I'd take him back to a GI. Have them do more tests. I'd also take him to an allergist.

 

What did they recommend for the constipation? Did they do a liver panel? Kidneys? Test for Crohn's and the like?

 

 

 

 

 

Immediately after his endoscopy, the GI showed me pics that he took and told me how nice things looked. I had to wait two weeks to get the biopsy results, but even then, I got them from our pediatrician because the GI was out of the country and wasn't going to be back for several more weeks. The pediatrician said that everything came back completely normal. We did not go back to talk to the GI, but I think we should (calling today). The pediatrician recommended that we just work with the psychologist. He said no more testing.

 

When the pediatrician diagnosed him with constipation, we went to the GI who said ds did NOT have constipation. Pediatrician put him on Miralax and GI took him off. I don't think they tested for anything else.

[Just Kate]

Has he had a neuropsych evaluation?  Has he had an OT evaluation?  Kids with sensory processing issues have trouble with lots of other things because their nervous systems have to cope with so much.  For my son, a conversation in a crowded room was like trying to hear someone over a jet engine.  The seam on clothing felt like sandpaper on his skin.  Unpleasant textures in food were like trying to eat food laden with pebbles.  Working on the sensory issues helped all of the other issues for him - his mood and behavior improved.  I would ask over on the special needs board for more information.  

 

I think the testing that the psychologist did was considered a neuropsych evaluation (or maybe not...I don't know!). He has not been to an OT. 

 

The weird thing is that ds has always been intense and different (not sure how to really define it). But he doesn't fit the description of anything. Like he never had an issue with clothes bothering him. I keep trying to figure out if his food pickiness is due to texture. Most people don't even realize that ds has issues, as he has just learned to compensate. He is having trouble with this food thing though. It is obvious that it takes him forever to eat and he can't hide that.

[Just Kate]

My son had some similar issues -- not the sensory issues and depression, but other things.  He was always very mature for his age too, and very intense.  Also, once a thought got into his head, he often couldn't let it go.  He would learn something was good for you or not good for you and then took it to the extreme.  He would absolutely throw himself into whatever he did.  He was also tired a lot and had stomach issues.

 

A few years ago, he want on a gluten-free/dairy-free diet.  He sometimes cheats with dairy, but he is very strict about the gluten.  It is amazing what a difference it has made in his life.  He does not have that constant lethargy that he used to struggle with, nor the stomach pains.  He is still a very intense person but, well, we just know that about him.  :)  He is a great guy, incredibly bright, and when he throws himself into a project you know it will be done right. 

 

The brain and personalities are so complex.  As others have said, it's most certainly not just one thing behind it all. 

 

This is so interesting. I don't know why but I have always thought his issues might be food related. This was even way before the choking incident (years ago). Ds is just an old soul. An intense, old soul. He is serious (although he knows how to have fun), but he does get obsessed with things. Kind of funny...I tend to get obsessed with things too, so maybe that's just a personality quirk? I used to call ds "quirky". Now I find him to be difficult, which makes me sad. 

 

I am still considering going gluten free, but maybe we should see his GI again first. And maybe OT as well.

[Mom-ninja.]

Immediately after his endoscopy, the GI showed me pics that he took and told me how nice things looked. I had to wait two weeks to get the biopsy results, but even then, I got them from our pediatrician because the GI was out of the country and wasn't going to be back for several more weeks. The pediatrician said that everything came back completely normal. We did not go back to talk to the GI, but I think we should (calling today). The pediatrician recommended that we just work with the psychologist. He said no more testing.

 

When the pediatrician diagnosed him with constipation, we went to the GI who said ds did NOT have constipation. Pediatrician put him on Miralax and GI took him off. I don't think they tested for anything else.

The endoscopy shows the upper GI tract. Have they checked the lower?

 

Our doctor did a barium x-ray and that's how they diagnosed severe constipation. Maybe you could ask the GI about that? What did the GI suggest the problem was? Did the GI do any tests/blood tests?

[Susan in TX]

I would skip the psychologist and take him to a psychiatrist. All of his symptoms point to anxiety and depression. There are medications that can help this. There is no reason to allow your son to continue to suffer.

 

Susan in TX

[Momof3littles]

I would get the ball rolling on a consult with neuropsych or developmental ped. Those appts can be pricey and long wait lists are common. There could be a host of possibilities for the food stuff: sensory, low oral muscle tone, poor oral motor coordination, etc. An OT can likely help with several of your concerns and it would bridge the gap until he gets a full eval with neuropsych or developmental ped. OT may help direct you to other svcs as needed. I would definitely want dc to see neuropsych or a developmental ped with what you describe with restricted interests, possible sensory or feeding isdues, etc. Otherwise I think it is likely that you may end up going in circles, which in the end can cost more and be less effective.

[Laurie]

 

 

 

 

In the back of my mind, I have always wondered if he has a gluten or dairy intolerance. So many things that I read seem to make this a possibility. But with his pickiness, the thought of doing the elimination diet...oh my, it just stresses me out. I did discuss it with ds earlier today and he said that he may be willing to try if I thought it might help him to feel better. I really don't want to do that unless I really, really think it might help.

 

 

 

Both of my children are on the autism spectrum (just so you know we have those issues along with digestive ones).   One had YEARS of chronic diarrhea.  The other has always been a picky eater and had chronic constipation, then developed stomach problems as a teen.  Over the years, we've  visited the gastroenterologist, the children's hospital feeding clinic, I've driven fresh poop samples to labs all over town, etc.   

We finally found some answers when we went to a naturopath specializing in digestive problems.   My kids had food allergy testing (blood test) that showed that they both react to gluten and dairy along with a few other specific foods.    I know it may be "controversial" (our own pediatrician politely told me that this was not part of her own medical training when I tried to share the lab results from the naturopath), but I can say that this is the only thing that made any real difference.  The chronic diarrhea is gone!  The stomach problems and accompanying eating problems ended... The naturopath also helped with tapering off Prilosec once the offending foods had been removed from the diet.  

 

(You might be interested in reading Grain Brain by David Perlmutter MD.)

 

Just my 2 cents, but in my experience there's a lot of money to be made with drugs and lots of doctor visits that aren't doing anything but trying to treat a symptom and never getting to the real cause.  It's not always "all in your head", but it could be just in your stomach (the wrong foods).   I think it's wise (even if it's difficult, and I agree that it is!) to start simple and see if a diet change helps before surrendering to the pills, the therapy, etc. 

 

Good luck! 

[Jennifer132]

You might look at Dianne Craft's Biology of Behavior. It's a CD lecture. There is a ton of good information on it about biological issues that can be behind child behavioral problems, and it isn't that expensive. She also gives a very specific plan of attack with supplements etc. we have had alot success with it.

 

http://stores.diannecraft.org/the-biology-of-behavior/

 

From the website:

"The Biology of Behavior" explores the physical causes of behavior, attention, and sensory processing problems in children. Are you a parent that is searching for solutions to help your child? This 2-CD set is for you!

 

Many parents have successfully followed this step by step nutritional supplement program and seen dramatic changes in their child's ability to focus, learn, and handle everyday stress.

 

"Children behave how they feel," Dr. Sydney Walker, III, MD

 

Children who are struggling with BEHAVIOR and ATTENTION PROBLEMS are literally "screaming out" to us the REASON for their struggle. We just need to know how to "read" these signs.

 

Characteristics of children who are struggling with an upset body chemistry that seems to respond to targeted nutritional interventions:

 

Biological:

Sleep problems

Stomach aches

Canker sores

Sugar craving

Eczema

Athlete's foot

Leg pains

Enuresis

Constipation

Much antibiotic use

Allergies

Behavioral:

Angry, aggressive

Irritable, touchy

Inappropriate behavior

Mood swings

Attention/focusing problems

Depression

Hyperactivity

Restless, nervous

Fearful

Sensory Processing Problems "SI"

Bothered by tags, socks, foods, transitions

In this 2 disc series you will be given the latest brain and nutritional research plus a proven step by step program of natural supplements designed to help your child's body heal, and have an ample supply of the important "calming" neurotransmitters available. You will also learn of "natural medicines" you can discuss with your child's doctor, that are free from the side effects that accompany many prescription medications. One parent said that this CD set was like "having a nutritionist in your home." The detailed STUDY NOTES included in this set, give you all the information you need, including brand names, amounts, and resources.

 

Dianne Craft has a masters degree in special Education and is a Certified Natural Health Professional. She has 30 years experience teaching bright but struggling students in public and home school. During this time she developed programs that help even the "toughest" behavior and learning problems.  

[fraidycat]

I have zero medical training. I've done a LOT of "self-help" research re: health.

 

I do have experience going GF/elimination with kids. This I highly recommend. FWIW, I actually recommend paleo - just so you know the angle I'm coming from. My DD is a much more pleasant person to be around (mood and personality) when she is off gluten and dairy.

 

Also, my "shout it from the rooftops" that I believe every person and especially parent should know is EFT. Learn it. Live it. Do it with your kids. Yes, I'm rather bossy about it. I think it's THAT important.

[PeterPan]

Here's a webinar on anxiety a psychiatrist recently did for ARI (the Autism Research Institute).  It's all about looking for the underlying physical causes.  You've already been given a lot of good advice, so I'll just add that labels shift.  You wouldn't be the first to get different labels between now and the teen years, and you wouldn't be the first to have a kid who falls through the cracks, who clearly is struggling but who doesn't quite fit anywhere in the DSM.  The probably is the DSM, since the symptoms are clearly happening.