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-> Parenting our children
-> Our Challenging Children (gifted, ADHD, sensitive, defiant)
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amother
Puce
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 Sun, Oct 15 2017, 12:05 am
My 9 year old ds has a language disorder, and often has a hard time expressing himself. However, he is usually quite able to get his point across to our family. And he does it VERY LOUDLY!
I've been telling him not to yell. It's been happening all day for the past few months or so. I point it out every time and ask him to repeat what he said in a pleasant voice. Sometimes he does, but he often refuses. He also usually claims he didn't yell, even though the people on the next block probably heard him clearly.
Sometimes his yelling is not angry, and he just talks too loudly by accident. But often, he is very angry for no good reason. I am working on getting him to a psychologist- his old one doesn't work with him anymore- but I can't seem to get through to the therapist who was recommended for him. I'll probably have to start looking for someone new.
But in the meantime, I don't feel like I'm doing him a favor anymore by pointing out every time he yells. He is getting angrier and angrier, and I think this is only making it worse. I want to try stopping, though it has become automatic already after all these months.
What can I do instead? How can I help him, or at least learn to stop telling him every single time he yells?
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33055
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Sun, Oct 15 2017, 12:15 am
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Did you have his hearing tested?
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amother
Puce
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Sun, Oct 15 2017, 12:26 am
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Yes. I was told he hears better than you and I do.
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amother
Brunette
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Sun, Oct 15 2017, 12:31 am
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Involuntary change in pitch of voice can be a tic.
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amother
Puce
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Sun, Oct 15 2017, 12:38 am
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This child has a number of tics, so that's probably what it is. Is there anything I can do to help him stop it?
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amother
Lime
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Sun, Oct 15 2017, 12:41 am
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When he talks really loudly, you can try to lower your own voice when you respond to him. He will probably try and match your tone involuntarily- people in conversation tend to join with each other. This will also model to him a lower tone without shaming him.
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amother
Brunette
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Sun, Oct 15 2017, 12:45 am
| amother wrote: | | This child has a number of tics, so that's probably what it is. Is there anything I can do to help him stop it? |
A neurologist can help you treat the symptoms, but, coupled with the anger and language disorder, I'd say there's a good chance it's lyme or pandas or some other unresolved infection at the root of this. My advice is to start digging, and then treat the cause. For more immediate relief, NAC is a supplement that is supposed to help with tics. CBD oil has worked for some people too.
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amother
Puce
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Sun, Oct 15 2017, 12:54 am
You mean a neurologist would be better than a psychologist?
I guess it can't hurt to get him checked for lyme and strep, but I doubt those could be the causes. He's been having these issues since he's born, pretty much.
I never heard of NAC or CBD oil. I'll look into those. Thanks.
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amother
Puce
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Sun, Oct 15 2017, 1:14 am
This is so weird. I googled nac and read about it. It is used to treat overdoses of Tylenol, and some liver blockages. Also psychiatric disorders.
It immediately brought to mind that when this ds was a year old, he had terrible diarrhea for months. The doctor finally did bloodwork, which showed that his alkaline phosphatase level was over 2,000, instead of the normal 30-60. A couple of days later it was 900, and then it went back down to normal. He had some green stools then.
At the time, Tylenol recalled some of their children's tylenol because the dosing was completely wrong. I always wondered if we got a bad one and that caused the liver problems.
The question is if that problem that happened 8 years ago could in any way be causing the issues he's having today? If so, it seems like this is the drug he needs.
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amother
Brunette
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Sun, Oct 15 2017, 11:42 am
| amother wrote: | This is so weird. I googled nac and read about it. It is used to treat overdoses of Tylenol, and some liver blockages. Also psychiatric disorders.
It immediately brought to mind that when this ds was a year old, he had terrible diarrhea for months. The doctor finally did bloodwork, which showed that his alkaline phosphatase level was over 2,000, instead of the normal 30-60. A couple of days later it was 900, and then it went back down to normal. He had some green stools then.
At the time, Tylenol recalled some of their children's tylenol because the dosing was completely wrong. I always wondered if we got a bad one and that caused the liver problems.
The question is if that problem that happened 8 years ago could in any way be causing the issues he's having today? If so, it seems like this is the drug he needs. | Yes, neurologist as opposed to psychologist for management of tics. BUT, most neurologists, unless they are pandas literate, will not be looking for infectious triggers, nor will they look at all the symptoms from a holistic perspective, rather they will look at each one on it's own. If you are in New York, Dr. Vargas at Columbia is a good choice. She takes insurance. You can see Dr. Shulman in Brooklyn too, but she charges per appointment, and mostly only looks for strep as a trigger, and newer research shows that many other infections can trigger the same symptoms as pandas, as well as environmental triggers such as allergies.
Does your child have any other of the following symptoms? OCD (can be hard to identify in kids), anxiety/separation anxiety, frequent meltdowns, mood swings, food pickiness, urinary issues, insomnia, hyperactivity, defiance, motor issues, regression (babyish behavior), sensory issues? If yes, all the more likely it's pandas/pans. I would start by asking the doctor to run titers for strep, mycolplamsa, EBV, lyme (keep in mind that standard lyme testing has a HUGE percentage of false positives), coxsakie, flu, herpes. And also test for celiac and allergies.
Re: the rest of your post, I'm not a doctor, and I'm not sure I understand where the tylenol comes into play. You didn't write when it was administered. Were they having fevers at the onset of the diarrhea? It's possible that this points to a liver detox issue that could potentially be causing neurological symptoms. But another possible angle to look at is that both the high liver enzymes AND the diarrhea were being caused by a common infectious trigger, like rotavirus.
In either case, this is absolutely the line of thinking I would be taking. Looking back in child's history and trying to find clues for when things started going downhill. Did this child have a lot of infections as a baby? Reflux? Always fussy -- maybe it's allergies or celiac? I know you wrote they were always like this, but tics in babies  ?
Lyme can be congenital. Pandas can have very early onset.
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amother
Red
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Sun, Oct 15 2017, 11:48 am
| amother wrote: | Yes, neurologist as opposed to psychologist for management of tics. BUT, most neurologists, unless they are pandas literate, will not be looking for infectious triggers, nor will they look at all the symptoms from a holistic perspective, rather they will look at each one on it's own. If you are in New York, Dr. Vargas at Columbia is a good choice. She takes insurance. You can see Dr. Shulman in Brooklyn too, but she charges per appointment, and mostly only looks for strep as a trigger, and newer research shows that many other infections can trigger the same symptoms as pandas, as well as environmental triggers such as allergies.
Does your child have any other of the following symptoms? OCD (can be hard to identify in kids), anxiety/separation anxiety, frequent meltdowns, mood swings, food pickiness, urinary issues, insomnia, hyperactivity, defiance, motor issues, regression (babyish behavior), sensory issues? If yes, all the more likely it's pandas/pans. I would start by asking the doctor to run titers for strep, mycolplamsa, EBV, lyme (keep in mind that standard lyme testing has a HUGE percentage of false positives), coxsakie, flu, herpes. And also test for celiac and allergies.
Re: the rest of your post, I'm not a doctor, and I'm not sure I understand where the tylenol comes into play. You didn't write when it was administered. Were they having fevers at the onset of the diarrhea? It's possible that this points to a liver detox issue that could potentially be causing neurological symptoms. But another possible angle to look at is that both the high liver enzymes AND the diarrhea were being caused by a common infectious trigger, like rotavirus.
In either case, this is absolutely the line of thinking I would be taking. Looking back in child's history and trying to find clues for when things started going downhill. Did this child have a lot of infections as a baby? Reflux? Always fussy -- maybe it's allergies or celiac? I know you wrote they were always like this, but tics in babies ?
Lyme can be congenital. Pandas can have very early onset. |
New amother here. Does Dr. Vargas treat differently than Dr. Schulman? Our child was on antibiotics for a year under Schulman's care and then we just stopped when it wasn't helping.
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amother
Brunette
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Sun, Oct 15 2017, 11:54 am
| amother wrote: | | New amother here. Does Dr. Vargas treat differently than Dr. Schulman? Our child was on antibiotics for a year under Schulman's care and then we just stopped when it wasn't helping. |
I'm not sure, we haven't seen her personally. Did Dr. Shulman not offer IVIG or plasmapheresis? I'm pretty sure both these doctors will order both of these treatments if they deem it necessary, though from what I hear Dr. Shulman will sooner do it for you. Personally, it's not the route I would take, unless my child was really, really sick and not functional, without trying other treatments first.
It's possible the abx you were on was not hitting the specific strain or infection you were needing to target. Or maybe there was more than one infection at play. Did Dr. Shulman test for other infections? Did you really see zero improvement? Why did you keep it up for an entire year?
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amother
Red
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Sun, Oct 15 2017, 12:33 pm
| amother wrote: | I'm not sure, we haven't seen her personally. Did Dr. Shulman not offer IVIG or plasmapheresis? I'm pretty sure both these doctors will order both of these treatments if they deem it necessary, though from what I hear Dr. Shulman will sooner do it for you. Personally, it's not the route I would take, unless my child was really, really sick and not functional, without trying other treatments first.
It's possible the abx you were on was not hitting the specific strain or infection you were needing to target. Or maybe there was more than one infection at play. Did Dr. Shulman test for other infections? Did you really see zero improvement? Why did you keep it up for an entire year? |
We didn't want to go with plasmapheresis which was mentioned.
The issues we are dealing with are anxiety and obsessive thoughts.
There was improvement up to a point and then it just stopped. We continued for a few more months because the doctor felt we should but after a while we just stopped on our own.
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amother
Brunette
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Sun, Oct 15 2017, 2:29 pm
| amother wrote: | We didn't want to go with plasmapheresis which was mentioned.
The issues we are dealing with are anxiety and obsessive thoughts.
There was improvement up to a point and then it just stopped. We continued for a few more months because the doctor felt we should but after a while we just stopped on our own. |
What are strep titers like (if strep was the trigger)? Did you try therapy (CBT)?
If I were you I'd start looking into alternative approaches at this point. If you are on FB there are some wonderful groups where ppl exchange a ton of great, useful information. You can also find an integrative MD but those generally cost $$$.
A good place to start may be b vitamins and magnesium. Gluten free, casein free, low sugar diet to reduce inflammation. CBD oil and omega 3's can help too, make sure they're good quality. Some pandas do well with vit D. You can have her tested for MTHFR polymorphisms as those can inhibit metabolism of folic acid and cause anxiety that way.
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cnc
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Sun, Oct 15 2017, 2:32 pm
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Has your child been evaluated for any processing disorders? (Spd, apd)
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amother
Red
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Sun, Oct 15 2017, 2:33 pm
| amother wrote: | What are strep titers like (if strep was the trigger)? Did you try therapy (CBT)?
If I were you I'd start looking into alternative approaches at this point. If you are on FB there are some wonderful groups where ppl exchange a ton of great, useful information. You can also find an integrative MD but those generally cost $$$.
A good place to start may be b vitamins and magnesium. Gluten free, casein free, low sugar diet to reduce inflammation. CBD oil and omega 3's can help too, make sure they're good quality. Some pandas do well with vit D. You can have her tested for MTHFR polymorphisms as those can inhibit metabolism of folic acid and cause anxiety that way. |
Are you writing this as someone who's cured pandas in a child?
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amother
Brunette
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Sun, Oct 15 2017, 2:59 pm
| amother wrote: | | Are you writing this as someone who's cured pandas in a child? |
No  but I am saying this as someone who has spent a lot of time researching the best ways to cure pandas in her own child, and has heard about these supplements being used with a lot of success straight from the people who are using them, and is coming to terms with the fact that whatever route we decide to take it will involve a certain amount of trial and error and money wasted until we find the combination of things that work best for our particular child.
I'm really not trying to be combative or pushy, just trying to share what I've learned.
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amother
Puce
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Sun, Oct 15 2017, 3:02 pm
| amother wrote: | Yes, neurologist as opposed to psychologist for management of tics. BUT, most neurologists, unless they are pandas literate, will not be looking for infectious triggers, nor will they look at all the symptoms from a holistic perspective, rather they will look at each one on it's own. If you are in New York, Dr. Vargas at Columbia is a good choice. She takes insurance. You can see Dr. Shulman in Brooklyn too, but she charges per appointment, and mostly only looks for strep as a trigger, and newer research shows that many other infections can trigger the same symptoms as pandas, as well as environmental triggers such as allergies.
Does your child have any other of the following symptoms? OCD (can be hard to identify in kids), anxiety/separation anxiety, frequent meltdowns, mood swings, food pickiness, urinary issues, insomnia, hyperactivity, defiance, motor issues, regression (babyish behavior), sensory issues? If yes, all the more likely it's pandas/pans. I would start by asking the doctor to run titers for strep, mycolplamsa, EBV, lyme (keep in mind that standard lyme testing has a HUGE percentage of false positives), coxsakie, flu, herpes. And also test for celiac and allergies.
Re: the rest of your post, I'm not a doctor, and I'm not sure I understand where the tylenol comes into play. You didn't write when it was administered. Were they having fevers at the onset of the diarrhea? It's possible that this points to a liver detox issue that could potentially be causing neurological symptoms. But another possible angle to look at is that both the high liver enzymes AND the diarrhea were being caused by a common infectious trigger, like rotavirus.
In either case, this is absolutely the line of thinking I would be taking. Looking back in child's history and trying to find clues for when things started going downhill. Did this child have a lot of infections as a baby? Reflux? Always fussy -- maybe it's allergies or celiac? I know you wrote they were always like this, but tics in babies ?
Lyme can be congenital. Pandas can have very early onset. |
OP here. My ds was a baby who screamed all day and night from the time he was 3 days old. Didn't sleep well. Woke up every time I put him down. Was diagnosed with sensory issues at 1 month old by an OT who was working with my other kids. He grew into a toddler who ran all day and refused to ever sit still. Even as a baby, he was always moving. When I held him he would climb over my shoulders and onto my head or down my back. He was non verbal until he was 3.5 years old. He was out to wreck the world throughout his toddler and preschool years.
He does have some symptoms of OCD, though was never diagnosed. He's a very picky eater who can't sit at a table with foods he dislikes. Used to be extremely hyperactive, though he isn't anymore. Extremely quick to anger. Was on reflux medicine as a baby just because he was so miserable, but it didn't do anything. He was given an ASD diagnosis as a 2 year old so that he could get the services he needed, though he didn't fit the description exactly. There are still some professionals who insist he's not autistic, while others believe he is.
About the tylenol: He did not have fever with all the diarrhea. I gave him tylenol a couple of times, I don't remember why. Probably teething or maybe he just seemed even more miserable than usual, if that was possible. Not sure how that could have been possible. Then came months of messy diapers and crying non stop. Finally, we discovered the elevated liver enzymes, just in time for the condition to correct itself. Our old doctor assured me we had nothing left to worry about with his liver, but now I'm wondering if the whole thing was somehow related to a bigger problem that is causing his anger, behaviors, and delays.
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amother
Brunette
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Sun, Oct 15 2017, 8:13 pm
| amother wrote: | OP here. My ds was a baby who screamed all day and night from the time he was 3 days old. Didn't sleep well. Woke up every time I put him down. Was diagnosed with sensory issues at 1 month old by an OT who was working with my other kids. He grew into a toddler who ran all day and refused to ever sit still. Even as a baby, he was always moving. When I held him he would climb over my shoulders and onto my head or down my back. He was non verbal until he was 3.5 years old. He was out to wreck the world throughout his toddler and preschool years.
He does have some symptoms of OCD, though was never diagnosed. He's a very picky eater who can't sit at a table with foods he dislikes. Used to be extremely hyperactive, though he isn't anymore. Extremely quick to anger. Was on reflux medicine as a baby just because he was so miserable, but it didn't do anything. He was given an ASD diagnosis as a 2 year old so that he could get the services he needed, though he didn't fit the description exactly. There are still some professionals who insist he's not autistic, while others believe he is.
About the tylenol: He did not have fever with all the diarrhea. I gave him tylenol a couple of times, I don't remember why. Probably teething or maybe he just seemed even more miserable than usual, if that was possible. Not sure how that could have been possible. Then came months of messy diapers and crying non stop. Finally, we discovered the elevated liver enzymes, just in time for the condition to correct itself. Our old doctor assured me we had nothing left to worry about with his liver, but now I'm wondering if the whole thing was somehow related to a bigger problem that is causing his anger, behaviors, and delays. | Wow, this is an awful lot to be dealing with. I'm so sorry. I haven't been through this myself, but I will say that your story is so, so similar to the many stories I've read about kids who were diagnosed with ASD, many of whom never fit the box 100%, and many of whom have actually recovered and lost the diagnosis completely. I don't know how much more I should say, because I'm not interested in being ridiculed on here for non-mainstream views, but I will say that the last sentence of your post is spot-on. There is always a root cause for neurological symptoms (very often gut dysbiosis, latent infections, immune deficiency, heavy metal toxicity), and they can be resolved or cured if they are treated at the root. Happy to point you towards potentially helpful resources if you are interested.
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