Teaching3bears Posted January 12, 2019 Share Posted January 12, 2019 My two teen sons have severe special needs and severe sensory issues that imprison them. The oldest spoke thousands of words very clearly as a baby and stopped suddenly at the age of two. My second son was speaking in sentences and stopped before age four. They also developed very bad sensory issues at the same time which have increased over time. My oldest has his hands partially covering his eyes and ears all the time and my second son runs out of the room whenever people have a conversation. DS17 can only watch tv on his good days and though he LOVES food, lately he is having trouble eating in the sae room as anyone else and sometimes for other reasons that I am not sure of. Lately DS15 sometimes has trouble eating unless I feed him. DS17 loves the movement of a car ride but often won't get out when we go somewhere lately. There is so much more too. These are just examples. I believe that the not speaking is a sensory issue too, though it would take me a while to explain. We have seen various holistic/alternative doctors over the years, especially when my oldest was in the preschool years, lots of naturopaths, and a tons of interesting healers. In the end most of them threw their hands up. I used to spend hours every day and night researching. They have taken tons of supplements and treatments. They have gone on several very strict diets which we followed religiously for long periods. They are still on very very healthy diets but they are not among those kids who have special food sensitivities that get better when the food is eliminated. Many doctors think that diet is key (and it is for many kids) but in their case it is not key. For various reasons, I think that the root of their problems is an imbalance of good and bad bacteria in their bodies, as well as inflammation. The problem is that we have done so much to try to address this and it has not helped, and often it causes them to get worse. But ...life really sucks (see my other post where I ask for prayers) and I have to keep trying because the status quo is unbearable. Maybe there is a medical doctor who specializes in severe sensory issues that I have not heard of. Please note: I am not interested in therapy- occupational, behavioural, sensory integration. We have done so much and the therapists could not deal with my sons, it did not help and caused them to hit their heads and we could have bought another house with the money we spent on it. If their problems were milder it might have been fun but it's really their bodies that need to heal. Help me if you can please. Quote Link to comment Share on other sites More sharing options...
MercyA Posted January 12, 2019 Share Posted January 12, 2019 This is probably a long-shot, but I wonder if doctors who are known for treating PANDAS/PANS might be able to help. They might be more likely than other doctors to recognize a possible biological / inflammatory role in sensory issues. You can check if there are any near you here: http://pandasnetwork.org/us-providers/ 4 Quote Link to comment Share on other sites More sharing options...
Storygirl Posted January 12, 2019 Share Posted January 12, 2019 I'm sorry things are so hard. Have you seen a neurologist? I just googled to see if there are neurologists who specialize in sensory and found this, as an example https://neurodevelopment.ucsf.edu/neurology I don't know if there would be anything like that anywhere near you. 1 Quote Link to comment Share on other sites More sharing options...
itsheresomewhere Posted January 12, 2019 Share Posted January 12, 2019 (edited) Honestly, OT are the ones who are the best specialists for sensory issues. Neurologists who specializes in it usual send you to OT after the first visit.Finding one who is good and can work with you is difficult unfortunately. Has anyone ever suggested genetic testing for your sons? There is a few rare ones that can cause some of issues you have described. Edited January 12, 2019 by itsheresomewhere 3 Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 12, 2019 Share Posted January 12, 2019 I received far more help from a ND who specializes in this than my kids ped - who treated him like he was just being difficult (when he was terrified of the scale because it moves.) 1 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted January 12, 2019 Author Share Posted January 12, 2019 1 hour ago, MercyA said: This is probably a long-shot, but I wonder if doctors who are known for treating PANDAS/PANS might be able to help. They might be more likely than other doctors to recognize a possible biological / inflammatory role in sensory issues. You can check if there are any near you here: http://pandasnetwork.org/us-providers/ Thanks! We have seen a couple of these doctors and I recognize many names but there are so many new ones. Maybe one would be a good fit. 1 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted January 12, 2019 Author Share Posted January 12, 2019 30 minutes ago, Storygirl said: I'm sorry things are so hard. Have you seen a neurologist? I just googled to see if there are neurologists who specialize in sensory and found this, as an example https://neurodevelopment.ucsf.edu/neurology I don't know if there would be anything like that anywhere near you. Thanks! I really should look into neurologists as we have only seen a few local ones and it was not helpful. I googled this doctor though and she seems to deal with kids with milder issues and recommend diet, therapy and special video games which my kids can't do. Maybe there is someone else. Quote Link to comment Share on other sites More sharing options...
ktgrok Posted January 12, 2019 Share Posted January 12, 2019 Has autoimmune encephalitis been ruled out? It has only really been known of for a short while in the scheme of things, so may not have been considered before. It can cause all those issues. 5 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted January 12, 2019 Author Share Posted January 12, 2019 31 minutes ago, itsheresomewhere said: Honestly, OT are the ones who are the best specialists for sensory issues. Neurologists who specializes in it usual send you to OT after the first visit.Finding one who is good and can work with you is difficult unfortunately. Has anyone ever suggested genetic testing for your sons? There is a few rare ones that can cause some of issues you have described. Yeah, we did extensive genetic testing and they found nothing. Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted January 12, 2019 Author Share Posted January 12, 2019 5 minutes ago, gardenmom5 said: I received far more help from a ND who specializes in this than my kids ped - who treated him like he was just being difficult (when he was terrified of the scale because it moves.) LOL my kids don't like scales either. Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted January 12, 2019 Author Share Posted January 12, 2019 (edited) 3 minutes ago, Ktgrok said: Has autoimmune encephalitis been ruled out? It has only really been known of for a short while in the scheme of things, so may not have been considered before. It can cause all those issues. It's always something we have thought about but maybe never saw a doctor for it. Who should we see? I guess the treatment is always steroids or IVIG.?? Edited January 12, 2019 by Teaching3bears x Quote Link to comment Share on other sites More sharing options...
ktgrok Posted January 12, 2019 Share Posted January 12, 2019 1 minute ago, Teaching3bears said: It's always something we have thought about but maybe never saw a doctor for it. Who should we see? I guess the treatment is always steroids or IVIG.?? Either a neurologist or sometimes a rheumatologist will deal with it. Treatment ranges from steroids to IVIG to plasmapheresis to targeted medications that knock down the immune system, similar to what is used for IBD or some cancers. It depends. This website may be helpful. https://aealliance.org/faq/ 1 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted January 12, 2019 Share Posted January 12, 2019 Are you anywhere near a Children's hospital? I would go to their neurodevelopmental clinic if they have one. Note: ours is a regional hospital and is very hard to get into. You have to be referred by another doctor. And there can be a wait. But it can be so worth it for out-of-the-ordinary conditions. 3 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted January 12, 2019 Author Share Posted January 12, 2019 7 minutes ago, Jean in Newcastle said: Are you anywhere near a Children's hospital? I would go to their neurodevelopmental clinic if they have one. Note: ours is a regional hospital and is very hard to get into. You have to be referred by another doctor. And there can be a wait. But it can be so worth it for out-of-the-ordinary conditions. Yes, we have but they weren't able to do or find anything unfortunately. Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted January 12, 2019 Author Share Posted January 12, 2019 1 hour ago, Ktgrok said: Either a neurologist or sometimes a rheumatologist will deal with it. Treatment ranges from steroids to IVIG to plasmapheresis to targeted medications that knock down the immune system, similar to what is used for IBD or some cancers. It depends. This website may be helpful. https://aealliance.org/faq/ We have seen neurologists but never rheumatologists. I could get our pediatrician to refer us maybe. They don't have all the symptoms like cognitive and memory impairments, movement problems, paranoia, hallucinations, movement problems numbness, balance and vision changes. Quote Link to comment Share on other sites More sharing options...
Kim in Appalachia Posted January 12, 2019 Share Posted January 12, 2019 3 hours ago, itsheresomewhere said: Honestly, OT are the ones who are the best specialists for sensory issues. Neurologists who specializes in it usual send you to OT after the first visit.Finding one who is good and can work with you is difficult unfortunately. Has anyone ever suggested genetic testing for your sons? There is a few rare ones that can cause some of issues you have described. This is what I was going to suggest. I would have a Dr write a referral to an OT clinic. Research and find one that deals with sensory issues. Meet with the OT. If he or she can't help you he/she may know an OT who can. 1 Quote Link to comment Share on other sites More sharing options...
Teaching3bears Posted January 13, 2019 Author Share Posted January 13, 2019 5 hours ago, Kim in Appalachia said: We have seen some really good OTs who really understand sensory issues and followed their advice. Unfortunately it did not change things much. This is what I was going to suggest. I would have a Dr write a referral to an OT clinic. Research and find one that deals with sensory issues. Meet with the OT. If he or she can't help you he/she may know an OT who can. Quote Link to comment Share on other sites More sharing options...
Daria Posted January 13, 2019 Share Posted January 13, 2019 10 hours ago, Teaching3bears said: We have seen neurologists but never rheumatologists. I could get our pediatrician to refer us maybe. They don't have all the symptoms like cognitive and memory impairments, movement problems, paranoia, hallucinations, movement problems numbness, balance and vision changes. I think the symptoms of AE can be varied. I currently work with 2 children with 2 different AE diagnoses. Their symptoms are entirely different. One has primarily physical disabilities, while the other has ASD-like symptoms. So, I don't think they'd need to have all of the listed problems to have suspected AE. Both kids are treated with IVIG and Rituximab. One also does regular treatments with IV steroids, while the other takes other medications I don't remember. One of the kids travels to Duke University for treatment. Apparently they're one of the top places in the country. 1 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.