Anonymous
Post 10/23/2023 23:08     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:Our son is 8.5 and has never been easy.
-low tone (didn’t walk until he was 19 months and still is weak)
-high anxiety
-low iron
-restless legs
-poor memory (as stated in his test results)

But as he ages, more things become problematic and pronounced…or maybe it’s just who he is and nothing is “wrong”…?

He’s very sensory seeking.
He used to be a great eater, now he’s cut his diet down to a handful of acceptable food.
He’s generally unpleasant and rude.
He is very stubborn and obstinate; it’s nearly impossible to talk to him and teach him things.
He’s wildly immature…we’re shocked he’s almost 9 but he truly has the manners and behavior of a toddler.

I don’t know where to start. We will have an upcoming visit with a developmental pediatrician, but I really don’t know what to ask for. He had some test when he was four, and I don’t even remember what they were. That’s where they nailed down the anxiety, and the very low memory.

Im just… Overwhelmed. He’s a nice and sweet kid but I feel like we’re not doing enough for him.

Please be kind.


This sounds nearly identical to my very difficult son who has been diagnosed with autism, adhd and anxiety.
He also has tremendous sensory and introception problems which lead to issued with knowing when he had to go, forgetting to drink water or eat when hungry. Couldn't bathe unless the water was exactly tepid, meltdowns, physical aggression etc.
He also had low iron saturation and low vitamin d. Very picky eater, etc.
He is now a very successful teenager both academics and with his interests. Has many friends though on the quickies side.

I suggest finding a practitioner who is familiar with hypermobility as most of his symptoms are classic signs of that. You will find the researcher in this area is sorely lacking but they have recently made some discoveries about things like the body 's inability to processes folate in kids of this type. * and so we supplement with methylated folaye or folonic acid. Note that a blood test will NOT show low folate. Folate is in the blood but not crossing the blood brain barrier. I suggest supplementing anyway since its a water soluble vitamin and there are few effects from taking too much.
* I am not saying your child has this problem, only that it is something to consider.

I am of the mind that most of the behavioral problems stem from a biological cause (low iron causing anxiety and adhd symptoms, etc).
You will find most every practitioner has zero experience in this area but researchers at Tulane are doing good but slow work. You will find some help on social media, the Tracy Rodriguez is an Instagram account that talks alot about hypermobility and its comorbidities.

Please be patient with your child. It sounds very much like they are struggling with a disability that even their doctors aren't able to diagnose or treat - yet.


pp are there any downsides to supplementing with methylated folate? I have been considering this for my child.


None, I asked pediatrician. It's just a more absorbable form of folate. Folic acid (which is a more stable and therefor cheap form of folate) should be avoided as much as possible because your body can only absorb so much folate. For lack of s better description- folic acid can "clog up" the receptors but not cross the blood brain barrier so results in even lower folate status. We watched where most folic acid was coming from and found it was mostly from pasts and bread. We easily switched to organic pasta and organic bread. Anything with enriched wheat will contain folic acid. Most multivitamins will also contain folic acid so we switched to methylated multivitamins.

Anonymous
Post 10/23/2023 22:00     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:
Anonymous wrote:Our son is 8.5 and has never been easy.
-low tone (didn’t walk until he was 19 months and still is weak)
-high anxiety
-low iron
-restless legs
-poor memory (as stated in his test results)

But as he ages, more things become problematic and pronounced…or maybe it’s just who he is and nothing is “wrong”…?

He’s very sensory seeking.
He used to be a great eater, now he’s cut his diet down to a handful of acceptable food.
He’s generally unpleasant and rude.
He is very stubborn and obstinate; it’s nearly impossible to talk to him and teach him things.
He’s wildly immature…we’re shocked he’s almost 9 but he truly has the manners and behavior of a toddler.

I don’t know where to start. We will have an upcoming visit with a developmental pediatrician, but I really don’t know what to ask for. He had some test when he was four, and I don’t even remember what they were. That’s where they nailed down the anxiety, and the very low memory.

Im just… Overwhelmed. He’s a nice and sweet kid but I feel like we’re not doing enough for him.

Please be kind.


This sounds nearly identical to my very difficult son who has been diagnosed with autism, adhd and anxiety.
He also has tremendous sensory and introception problems which lead to issued with knowing when he had to go, forgetting to drink water or eat when hungry. Couldn't bathe unless the water was exactly tepid, meltdowns, physical aggression etc.
He also had low iron saturation and low vitamin d. Very picky eater, etc.
He is now a very successful teenager both academics and with his interests. Has many friends though on the quickies side.

I suggest finding a practitioner who is familiar with hypermobility as most of his symptoms are classic signs of that. You will find the researcher in this area is sorely lacking but they have recently made some discoveries about things like the body 's inability to processes folate in kids of this type. * and so we supplement with methylated folaye or folonic acid. Note that a blood test will NOT show low folate. Folate is in the blood but not crossing the blood brain barrier. I suggest supplementing anyway since its a water soluble vitamin and there are few effects from taking too much.
* I am not saying your child has this problem, only that it is something to consider.

I am of the mind that most of the behavioral problems stem from a biological cause (low iron causing anxiety and adhd symptoms, etc).
You will find most every practitioner has zero experience in this area but researchers at Tulane are doing good but slow work. You will find some help on social media, the Tracy Rodriguez is an Instagram account that talks alot about hypermobility and its comorbidities.

Please be patient with your child. It sounds very much like they are struggling with a disability that even their doctors aren't able to diagnose or treat - yet.


pp are there any downsides to supplementing with methylated folate? I have been considering this for my child.
Anonymous
Post 10/23/2023 21:51     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:
Anonymous wrote:I too would recommend a neuropsych evaluation. Your son doesn't sound that dissimilar to mine (same age), who was recently diagnosed as 2e - gifted on several fronts, but with ADHD and dysgraphia, but the issues were kind of canceling each other out. The ADHD was masking the giftedness and given that he does not present as hyperactive, and could reasonably coast on his schoolwork, no one suspected anything. It was the social issues, the massive immaturity, the meltdowns, etc. that lead us to seek answers. He held it together fine at school, but melted down all over the place at home. Apparently this is not uncommon either, though certain "experts" at school didn't want to give weight to it.


Wow sounds very similar. Where do I even go for a neuro psych…?!?


PP from above here - frankly, it depends on how much you can afford to spend. If you need it to be covered by in-network insurance, you can get on the waitlists for Kennedy Krieger at JHU and Children's National Hospital, but be prepared to wait a year or more. If you have out of network coverage, you have more options, but expect to pay $2-3k with insurance and $5k(ish) totally out of pocket. Do a search here and you'll get a lot of recommendations, but many have long waitlists, though more in the 5-7 month range.

FWIW, we used Dr. Rachael Yates, who had a shorter waitlist and was a little bit less expensive and were very happy with the guidance we received. Many providers have looked at the report since and have mentioned that it was a well-written report that really speaks to/addresses my child's needs.

I can't remember if you mention whether or not you've sought the advice of a developmental pediatrician, but that may be something to consider as well given the physical symptoms you've described. We haven't done so yet, but I'm currently debating it as we try to figure out the ADHD medication piece of the puzzle.
Anonymous
Post 10/23/2023 21:38     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:I would see a specialist for the low tone and restless legs and anemia. And get a sleep study-- he may be sleeping really poorly.



Low iron saturation is highly correlated with restless leg syndrome and poor sleep and anxiety and adhd


DP. True this. I had rls that manifested in a bizarre way (horrible crawling sensations all night -- first just on my legs then on my whole body). Spent months trying to figure out what was wrong. Got very little sleep and started falling apart because of it. Neurologist ordered a sleep study and then told me "You should probably take some iron supplements, you were kicking a bit in your sleep." He didn't make the connection between the kicking and the crawling. But the sleep doc did. Anyway -- it all went away after supplementing iron.


Sorry pp that sounds horrible. I'm glad you figured it out.
Anonymous
Post 10/23/2023 20:38     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:
Anonymous wrote:I would see a specialist for the low tone and restless legs and anemia. And get a sleep study-- he may be sleeping really poorly.



Low iron saturation is highly correlated with restless leg syndrome and poor sleep and anxiety and adhd


DP. True this. I had rls that manifested in a bizarre way (horrible crawling sensations all night -- first just on my legs then on my whole body). Spent months trying to figure out what was wrong. Got very little sleep and started falling apart because of it. Neurologist ordered a sleep study and then told me "You should probably take some iron supplements, you were kicking a bit in your sleep." He didn't make the connection between the kicking and the crawling. But the sleep doc did. Anyway -- it all went away after supplementing iron.
Anonymous
Post 10/23/2023 20:14     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:I would see a specialist for the low tone and restless legs and anemia. And get a sleep study-- he may be sleeping really poorly.



We did a sleep study which confirmed restless legs.


Right, so what can you actually do about the anemia, low tone, and legs? There might be medication that can help him. No wonder he feels crabby if he is anemic with poor sleep.


Isn't the medication for low iron, iron?


Not necessarily. Some people can't tolerate just iron because it causes constipation, so there are other options.
Anonymous
Post 10/23/2023 20:06     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:
Anonymous wrote:
Anonymous wrote:I would see a specialist for the low tone and restless legs and anemia. And get a sleep study-- he may be sleeping really poorly.



We did a sleep study which confirmed restless legs.


Right, so what can you actually do about the anemia, low tone, and legs? There might be medication that can help him. No wonder he feels crabby if he is anemic with poor sleep.


Isn't the medication for low iron, iron?
Anonymous
Post 10/23/2023 19:36     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:
Anonymous wrote:I would see a specialist for the low tone and restless legs and anemia. And get a sleep study-- he may be sleeping really poorly.



Low iron saturation is highly correlated with restless leg syndrome and poor sleep and anxiety and adhd


Yes this we know.
Anonymous
Post 10/23/2023 19:34     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:I too would recommend a neuropsych evaluation. Your son doesn't sound that dissimilar to mine (same age), who was recently diagnosed as 2e - gifted on several fronts, but with ADHD and dysgraphia, but the issues were kind of canceling each other out. The ADHD was masking the giftedness and given that he does not present as hyperactive, and could reasonably coast on his schoolwork, no one suspected anything. It was the social issues, the massive immaturity, the meltdowns, etc. that lead us to seek answers. He held it together fine at school, but melted down all over the place at home. Apparently this is not uncommon either, though certain "experts" at school didn't want to give weight to it.


Wow sounds very similar. Where do I even go for a neuro psych…?!?
Anonymous
Post 10/23/2023 18:46     Subject: Go looking for answers, or assume this is just his personality?
Note that RLS is seen in lowniron but they have found some patients with RLS also have a higher need for folate (which jibes withbthe above post about hypermobility)
From NYU:
https://froemkelab.med.nyu.edu/surgery/content?ChunkIID=21806#:~:text=Preliminary%20evidence%20suggests%20that%20symptoms,%2C%20iron%2C%20and%20vitamin%20E.

You would do well to seek genetic counseling because low iron and a higher need for certain vitamins can have a genetic cause.
Anonymous
Post 10/23/2023 18:33     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:I would see a specialist for the low tone and restless legs and anemia. And get a sleep study-- he may be sleeping really poorly.



Low iron saturation is highly correlated with restless leg syndrome and poor sleep and anxiety and adhd
Anonymous
Post 10/23/2023 18:31     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:I have never heard a neuropsych not diagnose something. If you get a neuropsych you get a dx - likely more than one


Huh? I certainly have.
Anonymous
Post 10/23/2023 16:15     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:Our son is 8.5 and has never been easy.
-low tone (didn’t walk until he was 19 months and still is weak)
-high anxiety
-low iron
-restless legs
-poor memory (as stated in his test results)

But as he ages, more things become problematic and pronounced…or maybe it’s just who he is and nothing is “wrong”…?

He’s very sensory seeking.
He used to be a great eater, now he’s cut his diet down to a handful of acceptable food.
He’s generally unpleasant and rude.
He is very stubborn and obstinate; it’s nearly impossible to talk to him and teach him things.
He’s wildly immature…we’re shocked he’s almost 9 but he truly has the manners and behavior of a toddler.

I don’t know where to start. We will have an upcoming visit with a developmental pediatrician, but I really don’t know what to ask for. He had some test when he was four, and I don’t even remember what they were. That’s where they nailed down the anxiety, and the very low memory.

Im just… Overwhelmed. He’s a nice and sweet kid but I feel like we’re not doing enough for him.

Please be kind.


This sounds nearly identical to my very difficult son who has been diagnosed with autism, adhd and anxiety.
He also has tremendous sensory and introception problems which lead to issued with knowing when he had to go, forgetting to drink water or eat when hungry. Couldn't bathe unless the water was exactly tepid, meltdowns, physical aggression etc.
He also had low iron saturation and low vitamin d. Very picky eater, etc.
He is now a very successful teenager both academics and with his interests. Has many friends though on the quickies side.

I suggest finding a practitioner who is familiar with hypermobility as most of his symptoms are classic signs of that. You will find the researcher in this area is sorely lacking but they have recently made some discoveries about things like the body 's inability to processes folate in kids of this type. * and so we supplement with methylated folaye or folonic acid. Note that a blood test will NOT show low folate. Folate is in the blood but not crossing the blood brain barrier. I suggest supplementing anyway since its a water soluble vitamin and there are few effects from taking too much.
* I am not saying your child has this problem, only that it is something to consider.

I am of the mind that most of the behavioral problems stem from a biological cause (low iron causing anxiety and adhd symptoms, etc).
You will find most every practitioner has zero experience in this area but researchers at Tulane are doing good but slow work. You will find some help on social media, the Tracy Rodriguez is an Instagram account that talks alot about hypermobility and its comorbidities.

Please be patient with your child. It sounds very much like they are struggling with a disability that even their doctors aren't able to diagnose or treat - yet.
Anonymous
Post 10/23/2023 12:06     Subject: Go looking for answers, or assume this is just his personality?
I too would recommend a neuropsych evaluation. Your son doesn't sound that dissimilar to mine (same age), who was recently diagnosed as 2e - gifted on several fronts, but with ADHD and dysgraphia, but the issues were kind of canceling each other out. The ADHD was masking the giftedness and given that he does not present as hyperactive, and could reasonably coast on his schoolwork, no one suspected anything. It was the social issues, the massive immaturity, the meltdowns, etc. that lead us to seek answers. He held it together fine at school, but melted down all over the place at home. Apparently this is not uncommon either, though certain "experts" at school didn't want to give weight to it.
Anonymous
Post 10/23/2023 10:58     Subject: Go looking for answers, or assume this is just his personality?
Anonymous wrote:
Anonymous wrote:Our son is 8.5 and has never been easy.
-low tone (didn’t walk until he was 19 months and still is weak)
-high anxiety
-low iron
-restless legs
-poor memory (as stated in his test results)

But as he ages, more things become problematic and pronounced…or maybe it’s just who he is and nothing is “wrong”…?

He’s very sensory seeking.
He used to be a great eater, now he’s cut his diet down to a handful of acceptable food.
He’s generally unpleasant and rude.
He is very stubborn and obstinate; it’s nearly impossible to talk to him and teach him things.
He’s wildly immature…we’re shocked he’s almost 9 but he truly has the manners and behavior of a toddler.

I don’t know where to start. We will have an upcoming visit with a developmental pediatrician, but I really don’t know what to ask for. He had some test when he was four, and I don’t even remember what they were. That’s where they nailed down the anxiety, and the very low memory.

Im just… Overwhelmed. He’s a nice and sweet kid but I feel like we’re not doing enough for him.

Please be kind.


Go looking for answers. Even if it is just his personality (meaning no diagnosable condition), you will still find professionals to help. And all of this stuff will start to impact him at school in later elem school and beyond. Plus, and this is important: your needs matter too. You can get help for him so that he isn’t rude to you and doesn’t demand special food at dinner, for example. It’s okay to think of the family as a system and seek help if that system is too weighted toward one person’s needs/desires or if another person is being forced to accommodate too much.


This. Your son needs your help. He cannot go on like this and live a happy life, and neither can you. And low iron is not a personality.

Since you have several physical concerns, I think you need to see a specialist to look for an underlying cause. And maybe a genetic test. He might have an issue that can be treated and helped!

You don't need to know what to ask for. You just have to bring him to the appointment, describe your concerns as you have done here, and listen with an open mind to what they tell you.