MamaBearTeacher Posted March 2, 2017 Share Posted March 2, 2017 My 15-year old son has been suffering for most of his life. He hits himself hard in the head and moans very loud and when he does this it is usually because of pain in his gastro-intestinal tract. It is horrific and nightmarish. He has special needs and is nonverbal so it is hard to communicate with him and also, he is not very in touch with his body. When he was six years old I gave him an herbal tea and it constipated him a great deal. He calmed down a great deal and this made homeschooling so much more effective. At first, we thought it was the tea and then I noticed that the longer he was constipated the happier and calmer he was even without the tea. When he had daily bowel movements he started to bang his head a lot. He would go for over a week without having a bowel movement and be extremely calm. No doctors were able to explain this phenomena to me because people are supposed to be more uncomfortable when constipated. I tried to get him to be less constipated by gradually getting his body to go more often. "Gradual' was the key in order to avoid the head banging but this was hard to accomplish and he had bad times sometimes. I got him going every 3 days but it was harder to get him going more often. I felt that the constipation was really getting in the way of toilet training and sleep issues. About 2 weeks ago, I finally found a mild fiber supplement that did the trick. I gave it to him at a very low dose over a few days and he started going every one or two days. Unfortunately he also started hitting himself a lot. I stopped the supplement after a week but he is still going every two days and still screaming. All the bowel movements were good but now he has had a couple of very bad ones. Over the past two years, we have seen a pattern where he is very upset for a couple of days and then he has a mushy bowel movement that smells bad. We have also seen a pattern of about 3 weeks of happy, calm angel boy and then about 10 days of screaming and hitting himself. He does not hit himself all day but it comes up suddenly a couple of times a day. Sometimes it is about 40 minutes after a meal, sometimes when he is tired. He never seems to experience pain during a bowel movement or shortly after. It is usually the next day. Over the years we have done very strict diets with him and this is not about food or food sensitivities. At least we have eliminated any foods that bother him like sugar. This is not a gluten issue! We have seen many doctors. No, we have not done a scope. I spoke to the gastroenterologist about this and I just did not feel comfortable with the risks for my son. We have done lots of stool tests and they were all negative, though, apparently there are lots of false negatives. We have done stool tests with alternative labs and they always showed some bad bacteria and not enough good bacteria even though we gave him probiotics. The treatments they suggested for the bad bacteria never helped. Any thoughts and ideas would be much appreciated. I long for his comfort and happiness so badly. Quote Link to comment Share on other sites More sharing options...
Plink Posted March 2, 2017 Share Posted March 2, 2017 Does he have any sensory issues? I ask because my child with sensory issues is very un-in-tune with her body. Hunger = panic attack, tiredness = complaints of pain, needing to pee = screaming that everyone is being too loud, too close, or some other random issue. I wonder if he experiences regular bowel motion as pain/anxiety. For him, the discomfort is real, despite the fact that the doctors have ruled out medical issues. We are working with a PT, specifically focusing on interactive metronome. to get her inside world more connected with her outside world. I don't know if that is a possibility with your son's abilities, but we are seeing some progress. We also decided to look into anti-anxiety meds if necessary. 1 Quote Link to comment Share on other sites More sharing options...
MamaBearTeacher Posted March 2, 2017 Author Share Posted March 2, 2017 Does he have any sensory issues? I ask because my child with sensory issues is very un-in-tune with her body. Hunger = panic attack, tiredness = complaints of pain, needing to pee = screaming that everyone is being too loud, too close, or some other random issue. I wonder if he experiences regular bowel motion as pain/anxiety. For him, the discomfort is real, despite the fact that the doctors have ruled out medical issues. We are working with a PT, specifically focusing on interactive metronome. to get her inside world more connected with her outside world. I don't know if that is a possibility with your son's abilities, but we are seeing some progress. We also decided to look into anti-anxiety meds if necessary. Yes, he has extreme sensory issues! His sound sensitivity has been worse lately and there are times when he really cannot stand the sound of anyone talking. What does the metronome work involve? Quote Link to comment Share on other sites More sharing options...
matrips Posted March 2, 2017 Share Posted March 2, 2017 He does take probiotics every day? Have you switched up brands? There are so many different ones, and they're not all equal. Florastor is awesome. And then some of the refrigerated ones are powerful too. Does he take reflux medicine? When my mom was hospitalized (due to a fall), the doctors finally gave her Prevacid sp? And within a week, all her pains were gone. She used to be doubled over; it didn't seem like heartburn or indigestion. But what a difference. You've probably thought of these things already, so I doubt it helps. But hugs. It sounds so hard Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted March 2, 2017 Share Posted March 2, 2017 If he might have reflux, I would recommend deglycyrrhizinated licorice (dgl). It is a supplement and is available in chewable tablets as well as other forms. 1 Quote Link to comment Share on other sites More sharing options...
MamaBearTeacher Posted March 2, 2017 Author Share Posted March 2, 2017 I don't think he has reflux. He used to have it a long time ago. I tried so many brands of probiotics in the past. Some made him bang his head, some did nothing, some calmed his tummy a bit. When he was younger, some made him speak for short periods. The past two weeks they have not done anything. Usually they tend to constipated him. I feel so stupid for not being able to figure this out. Quote Link to comment Share on other sites More sharing options...
RoughCollie Posted March 2, 2017 Share Posted March 2, 2017 Could he be lactose-intolerant? 1 Quote Link to comment Share on other sites More sharing options...
MamaBearTeacher Posted March 2, 2017 Author Share Posted March 2, 2017 Could he be lactose-intolerant? He is not lactose-intolerant because we took him off dairy before for long periods and it did not help. it is more likely bad bacteria. Quote Link to comment Share on other sites More sharing options...
Mrs_JWM Posted March 2, 2017 Share Posted March 2, 2017 I don't think he has reflux. He used to have it a long time ago. I tried so many brands of probiotics in the past. Some made him bang his head, some did nothing, some calmed his tummy a bit. When he was younger, some made him speak for short periods. The past two weeks they have not done anything. Usually they tend to constipated him. I feel so stupid for not being able to figure this out. You are not stupid. The doctors you've seen haven't been able to figure out our and they're supposed to be smart. You have tried numerous things to bring your son peace and comfort and you deal with the daily stress of setting someone you love suffer. Please give yourself grace. I'm so sorry you're dealing with this. Many, many hugs - you are an amazing mother. Sent from my XT1049 using Tapatalk 3 Quote Link to comment Share on other sites More sharing options...
gaillardia Posted March 2, 2017 Share Posted March 2, 2017 My thoughts and ideas: :grouphug: I can't imagine trying to cope with a situation like that. I hope you can find a doctor or hospital that can help your son. You shouldn't have to be on this road alone. :grouphug: Quote Link to comment Share on other sites More sharing options...
happi duck Posted March 2, 2017 Share Posted March 2, 2017 (hugs) Quote Link to comment Share on other sites More sharing options...
6packofun Posted March 2, 2017 Share Posted March 2, 2017 Is he on the autsim spectrum? (Sorry if you mentioned and I should know!) I was reading an article the other day about autism and the fact that gastrointestinal distress is very often comorbid with autism. Here is the article, which doesn't seem to be over the top anti-vaccine or speaking definitively, just making connections: https://healthcareinamerica.us/did-chinese-scientists-find-autisms-missing-puzzle-piece-2d50be5b9122#.3uxo1geog And here is a study the author cites about gastrointestinal issues (including leaky gut?) that may be helpful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897394/pdf/nihms543590.pdf Sorry, it's a lot of reading, but something in there may spark an idea that will lead to a solution! Quote Link to comment Share on other sites More sharing options...
Crimson Wife Posted March 2, 2017 Share Posted March 2, 2017 This page is geared towards families whose kids have autism but it's useful even if your child does not: http://www.tacanow.org/family-resources/the-poop-page/ I would also recommend having Great Plains Lab's Comprehensive Stool Analysis done if you haven't already. I know you said that you had stool testing done but I wasn't sure which one(s). Some individuals with stubborn GI issues have found relief through fecal transplants. :ack2: but might be worth trying. Quote Link to comment Share on other sites More sharing options...
Plink Posted March 2, 2017 Share Posted March 2, 2017 Yes, he has extreme sensory issues! His sound sensitivity has been worse lately and there are times when he really cannot stand the sound of anyone talking. What does the metronome work involve? Here is a study that explains the relationship between sensory issues, anxiety, and over-responsivity. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2980623/ Metronome works for use because it helps DD to pinpoint stimulus, and correctly respond to it. It intentionally works on avoiding over or under-reactions. We are also using lots of "yes that's normal, you are very observant" language at home to identify when she is incorrectly identifying a normal sound as a loud noise, or minor muscle ache after exercise an injury. Quote Link to comment Share on other sites More sharing options...
Acadie Posted March 2, 2017 Share Posted March 2, 2017 (edited) What kinds of probiotics have you tried? Most probiotics made things worse for my dd, but finally I found three that work really well for her: D-Lactate Free Custom Probiotics powder, Prescript Assist, and Align. Everything else gave her symptoms, but with these three both her GI tract and mood/behavior improved. I think with sensitive kids who have a gut flora imbalance, the generic advice to take probiotics doesn't always help. The Custom Probiotics website says people use it with autism, histamine issues and SIBO. Prescript Assist is broad spectrum soil bacteria that Chris Kresser recommends for histamine intolerance, and Align we get from Costco (best price I've found) and it also helps decrease histamine in the body. Also what kind of fiber supp do you use? With the soft stool I might wonder about histamine intolerance--diarrhea/abdominal cramping is a common symptom. If he's experiencing that and trying to hold back that could cause days of discomfort. Amy Edited March 2, 2017 by Acadie 1 Quote Link to comment Share on other sites More sharing options...
Tap Posted March 2, 2017 Share Posted March 2, 2017 (edited) Has he ever worked with an OT on the issue? I would wonder about a miscommunication of messages coming from his brain. Similar to what others have said....maybe his body perceives gut pain or the feeling of needing to void (vs retained stool pain), as something else that provokes an anxiety reaction from him. I relate it to....I have an issue in my lumbar spine. Due to my spine issue, I get pain all down my leg into my foot. There is absolutely nothing wrong with my leg. But my brain perceives the lumbar pain wrong, and my brain labels it SI pain instead. (Nothing is touching the SI nerve in my back). I would also wonder if his feeling of constipation, is comforting to him. Like the feeling of being very full after eating a large meal. To some people, being over full is an amazing feeling....to others it is uncomfortable. It is just how our brain perceives it. Sometimes pain/discomfort releases hormones that release endorphin and hit the pleasure centers of the brain. Edited March 2, 2017 by Tap 1 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted March 3, 2017 Share Posted March 3, 2017 He is not lactose-intolerant because we took him off dairy before for long periods and it did not help. it is more likely bad bacteria. This might sound very weird and you might not find a doctor to agree but have you considered a fecal transplant? My dd had one after countless bouts with c-diff infection. She felt almost 100% within 24 hours. It requires a colonoscopy prep (which might be very difficult for you) but then the procedure is just a colonoscopy. You find a donor with very healthy gut health, lower BMI, etc. 2 Quote Link to comment Share on other sites More sharing options...
MamaBearTeacher Posted March 3, 2017 Author Share Posted March 3, 2017 This might sound very weird and you might not find a doctor to agree but have you considered a fecal transplant? My dd had one after countless bouts with c-diff infection. She felt almost 100% within 24 hours. It requires a colonoscopy prep (which might be very difficult for you) but then the procedure is just a colonoscopy. You find a donor with very healthy gut health, lower BMI, etc. I have read a lot about fecal transplants. I wish I knew if it would work for him. It is very encouraging to hear that it worked so well for your DD! How much compliance is necessary? I don't want to sedate him. Quote Link to comment Share on other sites More sharing options...
MamaBearTeacher Posted March 3, 2017 Author Share Posted March 3, 2017 Has he ever worked with an OT on the issue? I would wonder about a miscommunication of messages coming from his brain. Similar to what others have said....maybe his body perceives gut pain or the feeling of needing to void (vs retained stool pain), as something else that provokes an anxiety reaction from him. I relate it to....I have an issue in my lumbar spine. Due to my spine issue, I get pain all down my leg into my foot. There is absolutely nothing wrong with my leg. But my brain perceives the lumbar pain wrong, and my brain labels it SI pain instead. (Nothing is touching the SI nerve in my back). I would also wonder if his feeling of constipation, is comforting to him. Like the feeling of being very full after eating a large meal. To some people, being over full is an amazing feeling....to others it is uncomfortable. It is just how our brain perceives it. Sometimes pain/discomfort releases hormones that release endorphin and hit the pleasure centers of the brain. All of this is possible. When he was little he wanted to eat all the time - literally! He would be happy all mealtime and scream for for food as soon as he finished his last bite. He would attach himself to the fridge and scream for food. This went on all day, every day for years. We gave him all healthy food and he ate every single bite of every single food we gave him. Is it a special type of OT that works on these things? All the OTs we worked with only did bubbles, sensory toys etc. or daily living skills. 1 Quote Link to comment Share on other sites More sharing options...
MamaBearTeacher Posted March 3, 2017 Author Share Posted March 3, 2017 What kinds of probiotics have you tried? Most probiotics made things worse for my dd, but finally I found three that work really well for her: D-Lactate Free Custom Probiotics powder, Prescript Assist, and Align. Everything else gave her symptoms, but with these three both her GI tract and mood/behavior improved. I think with sensitive kids who have a gut flora imbalance, the generic advice to take probiotics doesn't always help. The Custom Probiotics website says people use it with autism, histamine issues and SIBO. Prescript Assist is broad spectrum soil bacteria that Chris Kresser recommends for histamine intolerance, and Align we get from Costco (best price I've found) and it also helps decrease histamine in the body. Also what kind of fiber supp do you use? With the soft stool I might wonder about histamine intolerance--diarrhea/abdominal cramping is a common symptom. If he's experiencing that and trying to hold back that could cause days of discomfort. Amy We have used the d-lactate free but not Align. I might try that one. Can the capsule be opened? How do I know if he has histamine issues? Quote Link to comment Share on other sites More sharing options...
wonderchica Posted March 3, 2017 Share Posted March 3, 2017 I have read a lot about fecal transplants. I wish I knew if it would work for him. It is very encouraging to hear that it worked so well for your DD! How much compliance is necessary? I don't want to sedate him. You have to be sedated for a colonoscopy. Quote Link to comment Share on other sites More sharing options...
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