Brain chemistry /Migraines and learning

[exercise_guru]

I have a very difficult situation I would welcome all ideas. My 12 year old had his tonsils out and had a terrible time with the opiod type red medicine they gave him for pain. Nothing else worked so we used it for the recommended 12  to 14 days.  He was very depressed and we atribure this to the anastethia and pain medicine plus anxiety. 

We had to take him off the concerta and now he is having massive anxiety and says he is dizzy. It Might take him. Awhile to rexover from. All this and get his brain right.  He is having school avoidance and has stopped reading books (which he loves) even video games are not getting play. 

Anyone have any experience with this? 

Update: my son was diagnosed with migraines 3PPD PERSISTENT POSTURAL-PERCEPTUAL DIZZINESS and Vestibular migraines. He is no manifesting Traditional Migraines that won't break with rescue remedies. I posted all the doctors and such later in the thread but wanted to post as perhaps a parent may have dealt with the migraine component and have some advice. 

Edited December 18, 2019 by exercise_guru
Update

[PeterPan]

Genetics, MTHFR status? Why off the concerta? Going back on? Anxiety would go up off meds, sure. And meds are methyl donor where drugs from surgery maybe depleted? Other methyl donors orange juice, tyrosine, quercitin.

Check half life of the pain meds. Might be loopy till they clear=6X half life

Ask doc about dizzy, call them.

[PeterPan]

My dd was total mess with wisdom teeth. Lay low till meds out of system completely. Do videos or audiobooks. No Fb or anything permanent. Probably can’t focus to read without the stim meds.

[Storygirl]

Can you call the anesthesiologist to ask if this could be a hold-over effect from the sedation? And/or call and talk to the surgeon's staff -- this might be a question for a nurse instead of the surgeon.

How long has it been since the operation, and since the course of pain meds has ended?

I just googled "opioid withdrawl" and found a few facts. First, that if someone has been on an opioid for two weeks, the body may have a harder time when stopping.

And secondly, that clonidine is a common med to use to help opioid withdrawl. Clonidine also can be used for ADHD. Perhaps it's worth talking to a doctor about trying it.

I don't know anything about opioids, other than general layperson understanding. So check out these things for yourself, of course, and consult a doctor. I hope you are able to get him back on track quickly. I'm sorry.

[Lecka]

A factor for my son was worry over falling behind in schooling and having too much work to catch up on — it became paralyzing. 

That was only one thing — but it’s possible teachers would work with him.  If you talk to a counselor maybe they can waive some of his work.  If he is starting to have school avoidance I think contact the school and see about options on that side.

Good luck, this sounds very stressful.  I am sorry he has to deal with this.  

[Lecka]

I also hope maybe your doctor can have some insight.  I would try that.  It doesn’t sound like he may be healthy enough for school?  

But in the meantime if he is worrying about schoolwork that is something where maybe you can talk to the school.  

This is one of those things my son never told me but it turned out to be something he was thinking.

I don’t know if he has a counselor or not.  My son ended up telling the school counselor about a couple of things that he never told me about.  

 

[Jentrovert]

I don't have any experience with opioids and children. Both my husband and I have had to take them a couple times after surgery. He (and this is a known side effect, more common in men) gets quite angry and kind of mean when he's on them (like saying mean things he wouldn't normally say) and he's very obstinate about things. He feels awful for several days after going off them. I get extremely depressed and weepy for a couple days after going off them. 

So I would consider it normal to have mood changes, but would probably still check with doc if it seems to linger. Especially with other med withdrawal in the mix.

[exercise_guru]

Thank you for providing some insight. We still are not sure if he contracted a virus that is causing labrynthitis or if it is the after effects of the anathesia and pain medications but the surgery was  10 weeks ago and he has had these dizzy symptoms for 5 weeks. His doctor had him see a vestibular PT but this was on a day he was doing very well and so she didn't know what she could do to help him. Then he slid back downhill and this week is having a lot of difficulty. 

I have him off of all medications. I am trying to get him lots of good sleep and good nutrition. He ofcourse is having anxiety which makes it all worse . 

[Storygirl]

I'm so sorry 😢. I hope they are able to figure it out soon.

[ktgrok]

I can say that going off ADHD meds made me miserable, sleepy, fatigued, cranky, depressed, etc. Same with my son, but less for him because he often skips a dose here or there and I never do. So just the Concerta withdrawal alone could cause that. 

[exercise_guru]

Hi everyone the challenge continues. My son 12  is attending school from 10 to 3 purely to ensure that he is not socially isolated. He still feels unbalanced and dissociated. They are thinking of trying prozac to help with the depression and CNS suppressant  because it causes the least amount of dizziness.  He continues to struggle reading where he usually reads a book every 3 days he has barely finished one in the past 7 weeks.

This is a new school and he has multiple doctors notes and a 504 but I fear its not going to work. The teacher just thinks he is being disrespectful when he says he can't do the work. His noncompliance and lack of work product is being interpreted as laziness or ADD.  I ask her what he would like him to say to her? His doctor has said that this can take months go get over and being nice to a friend is far different from producing an essay. I already had a child that struggled I don't know how this is going to go. 

The worst is I spent years teaching this child not to distract himself and focus on academic work. Now he has told me the only way he can cope with the diizzy unbalanced feeling is to try to distract himself

Edited November 15, 2019 by exercise_guru

[PeterPan]

I'm sorry he continues to feel unwell! This is just throwing an idea out there, no clue, but have you tried giving him glutathione? 

[ktgrok]

how is his blood pressure when standing? Could POTS be an issue?

Also,why is he off the concrete? Would trying going back on help?

[exercise_guru]

I could try glutothionine

 I tested him for B12 and he was high so I have laid off the B vitamins as I don't want to. Overmethylate him. I have the mthfr gene and undermethylate so I do B12 B complex shots. Wouldn't dare do that for him

Glutothionine and lecithan would be worth a try. My insurance actually pays for acupuncture so if I can get him to try it I am going to see if they can try balancing those limbic points. It feels like brain chemistry. I worry they  nicked something in that tonsil surgery or he just couldn't handle the anathesia. 

I welcome all ideas really guys I am flipping every atone right now

It doesn't look like he lost his retained reflexes or his progress from PT this is way different. 

I took him. Back to his vision therapist and he had tested him. In July now my son is testing 40 percent below what he was weeks ago with ocular motor. So. No diagnosis but he sent a letter of accommodations to the school. 

We removed his braces and had a brain MRI to make sure no tumor or stroke. Then he would faint sometimes when there is a loud noise and get lightheaded on standing. So we decided to over hydrate and push electrolytes. Still problems so we went to the ped cardiologist and had an ekg and echo. Heart and vessels are fine. He still has orthostatic issues. He has  those noise filtering earplugs he can wear and still hear the teacher. 

It's a charter school so with the 504 they can't kick him out but they can make us leave.  The school adminstrator is sympathetic but the teacher is pretty judgemental and has a tone of intolerance. This is crushing for my son 

I focus heavy on a good breakfast and good sleep. He is so foggy and unbalanced in the morning we feed him. Breakfast and then have him walk on the treadmill holding the sides to get the circulation. Dramamine and meclizine do nothing but make him fall asleep at his desk, it doesn't seem to be effective in that way.

Regarding concerta we tried it for 4.months a few  years ago he had taken it and while it didn't improve at all his auditory processing or attention it was well tolerated at a low dose. We tried It this fall as he is older now and with a new school it was worth exploring if there was any kind of add component. If there is that component it is pretty mild more like "if I am I interested  I will work twice as hard and sometimes school is boring or writing is hard so I will do what I can and fidget." he has a high IQ just can't hear in noise and needs clear directions. Well we only had him on it 4 days maybe it reacted with the anathesia from the surgery the month before or the Norco he was on after the surgery that we stopped 2 weeks before 

Timeline

Aug 12 tonsils, adenoids surgery 

Then 2 weeks Norco

 Sept 3Then started new school 

Sept 18 tried concerta thought he was coming down with a sinus infection and his sister was dead sick so took him off. 

September 22nd dizziness extreme couldnt walk down the hall.  Out 3 weeks of school going to specialist then 2 weeks attending like a zombie for a few hours a day. 

POTS is scary and yes if by January we may have to fly to. Austin and see if that is what is going on. The cardiogist told us it's too early to freak out about that yet. 

 

 

Edited November 15, 2019 by exercise_guru

[exercise_guru]

Sorry I am going to add a  bit more. Initially we thought it was the following. Maybe he got exposed to the virus in the hospital we wish we could go back in time that's for sure. 

In vestibular neuritis, by definition, hearing is unaffected. In labyrinthitis, hearing may be reduced or distorted in tandem with vertigo. ... The symptoms of both vestibular neuritis and labyrinthitis typically include dizziness or vertigo, disequilibrium or imbalance, and nausea. Acutely, the dizziness is constant.Apr 26, 2019

 

The problem is nothing seems to make it better. He wakes up in the night unbalanced . Moving his head doesn't make it worse or better. He can bend and love and sometimes even run and play with friend but then he is exhausted afterwards. 

 

His doctor told the school this could be a long recovery and to try to be as much of a 12 year old boy as possible. The problem iswe have encourages him to build new friendships in the new school and focus on building a repoir with the kids. We told him. If he even had tiny bit of ability to out his efforts there. Next we told him do the math all you can so you won't be held back. 

 

but the teacher sees him acting goofy with friend on the playground and bonding with them and gets persnickity and frustrated when he can't write an essay or. Do. All the work. She has taught for 15 years in public school. I just don't k ow how to get accommodations for him. In writing and math while he is recovering. They gave him medical release for PE and electives. 

Edited November 15, 2019 by exercise_guru

[PeterPan]

2 hours ago, exercise_guru said:

I tested him for B12 and he was high so I have laid off the B vitamins as I don't want to. Overmethylate him. I have the mthfr gene and undermethylate so I do B12 B complex shots. Wouldn't dare do that for him

I'm confused. If his b12 was high without supplements, odds are no MTHFR defects. And that wouldn't cause his methyls to go high anyway.

The glutathione just helps the liver detox out stuff. I was just thinking on a really basic level, that he got exposed to the anesthetics, etc. and is having a reaction. Some kind of reaction to the nitrous or other things that were used. So then glutathione and C to pull it out.

Why was his b12 actually high? Had he been on it? That's kind of odd.

[exercise_guru]

Oh yes and perhaps chlorella to detox that. 

I was radically low in B12 so prior to him. Beinf tested I had given my kids a low dose of B vitamins once a week. 

Both of my children are highly highly anxious. The doctor is concerned that the anxiety and the depression of being ill is going to be like kerosine on the dizziness. They didn't dare give him. Anything for anxiety because of this whole situation and you bet I am eating on the Prozac until after Thanksgiving to see if this calms down. 

He has a weightes blanket any ideas for anxiety. I have to really calm all this down. 

 

[ktgrok]

Has he had lab work to check for autoimmune stuff - inflammatory markers, lupus, etc? And lyme?

[geodob]

After so many weeks, this needs to be accurately diagnosed very soon!
Firstly, to identify whether his Peripheral or Central Vestibular System is effected?
As well as whether one or both sides are effected?
Though you wrote that 'moving his head doesn't make it worse or better'.   Which rather suggests that his Central Vestibular System may be effected?
But you wrote that on Sept  18, you 'thought he was coming down with a sinus infection'.
Then on 22 Sept, extreme dizziness couldn't walk down the hall.
Which raises the question, of whether this possible 'sinus infection' is significant?
I'll attach an article, which provides a comprehensive explanation of evaluating dizziness:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3613190/pdf/npj24.pdf

[Lecka]

Yes.  

At a certain point, dizziness and physical symptoms can be from anxiety, and then -- you would need to treat the anxiety.  

If you aren't treating the anxiety because it could interfere with another medical problem ----- that is putting off the anxiety treatment.  

 

[kbutton]

17 hours ago, exercise_guru said:

Hi everyone the challenge continues. My son 12  is attending school from 10 to 3 purely to ensure that he is not socially isolated. He still feels unbalanced and dissociated. They are thinking of trying prozac to help with the depression and CNS suppressant  because it causes the least amount of dizziness.  He continues to struggle reading where he usually reads a book every 3 days he has barely finished one in the past 7 weeks.

This is a new school and he has multiple doctors notes and a 504 but I fear its not going to work. The teacher just thinks he is being disrespectful when he says he can't do the work. His noncompliance and lack of work product is being interpreted as laziness or ADD.  I ask her what he would like him to say to her? His doctor has said that this can take months go get over and being nice to a friend is far different from producing an essay. I already had a child that struggled I don't know how this is going to go. 

The worst is I spent years teaching this child not to distract himself and focus on academic work. Now he has told me the only way he can cope with the diizzy unbalanced feeling is to try to distract himself

To get over what? This is crazy--no diagnosis, but the doctor is saying it can take months?! I would think that he needs to know what "it" is before making that kind of statement.

The dissociation sounds scary--that's like a trauma/anxiety thing, right? Or do they think it's entirely part of the 

16 hours ago, exercise_guru said:

Sorry I am going to add a  bit more. Initially we thought it was the following. Maybe he got exposed to the virus in the hospital we wish we could go back in time that's for sure. 

In vestibular neuritis, by definition, hearing is unaffected. In labyrinthitis, hearing may be reduced or distorted in tandem with vertigo. ... The symptoms of both vestibular neuritis and labyrinthitis typically include dizziness or vertigo, disequilibrium or imbalance, and nausea. Acutely, the dizziness is constant.Apr 26, 2019

The problem is nothing seems to make it better. He wakes up in the night unbalanced . Moving his head doesn't make it worse or better. He can bend and love and sometimes even run and play with friend but then he is exhausted afterwards. 

His doctor told the school this could be a long recovery and to try to be as much of a 12 year old boy as possible. The problem iswe have encourages him to build new friendships in the new school and focus on building a repoir with the kids. We told him. If he even had tiny bit of ability to out his efforts there. Next we told him do the math all you can so you won't be held back. 

but the teacher sees him acting goofy with friend on the playground and bonding with them and gets persnickity and frustrated when he can't write an essay or. Do. All the work. She has taught for 15 years in public school. I just don't k ow how to get accommodations for him. In writing and math while he is recovering. They gave him medical release for PE and electives. 

Have you had him tested for inner ear issues directly by an audiologist? I wouldn't guess yes or no by symptoms since you could have multiple things going on. Why an audiologist? They developed the science and treatment around vertigo caused by inner ear issues. Insurance does not always reimburse them though, as the physical therapy field took over that sphere or things (audiologists have developed a lot of things and then had the medical field take over with reimbursement--it's a historical issue). Some audiologists really specialize in this, and since you mentioned auditory processing issues, it sounds like you might have an audiologist already.

16 hours ago, exercise_guru said:

POTS is scary and yes if by January we may have to fly to. Austin and see if that is what is going on. The cardiogist told us it's too early to freak out about that yet. 

Is this same doctor that said it can take months to get over this undiagnosed "it?" If so, I think I'd be getting a second opinion. I am nearly positive I read just yesterday that POTS often has a triggering event. You can have a tendency that way, but then some medical issue can make it come out of the woodwork. I really think you need to get that part sorted. I don't have a link for the idea about a triggering event. If I run onto it again, I'll try to post it.

[ktgrok]

What doctors is he seeing? Just a GP or is he being evaluated by ENT and Neurologist? I think you said he already saw a cardiologist, wondering about the other two. Maybe an EEG is in order. https://dizziness-and-balance.com/disorders/central/epileptic.html

And I'd make an appointment with someone that can diagnose POTS as it can take a while to get in anyway. 

[Lecka]

It can be really hard for kids to come back from missing school.  There can be a big issue of getting behind or of not liking school or not being as good at some things.  Etc.  

Anyway -- my son had a big situation and he did have anxiety-related stomachaches.  It is very real to happen.

One of his friends had similar issues, but it started when he had a concussion.  He was supposed to come back to school in 2 weeks.  Then it turned into 6 weeks.  Then he kept telling his mom he had symptoms.  He was in and out of school.  She got multiple doctor appointments over a year to make sure he didn't have lingering concussion symptoms.  

In that time he was having similar issues as my son.  

In the end she never found out about any physical concussion-related issue past the 6 weeks.  Now, how do you ever really know?  

But it's just something to keep in mind, because of physical issues with anxiety.  It is a reason to treat anxiety if there is not another cause!  Otherwise the anxiety is not being treated.  And then if it was ADHD instead of anxiety -- same issue.  

I think there is a lot of leeway for your son and figuring things out.  I think you need to have more medical information and take it back to the school.  Whatever you took them at this point, they have said music and electives are optional.  Either go back and say it needs to be academics too, or get more guidance from a doctor to take to the school.  

I think it is so hard when physical causes haven't been ruled out, or it's hard to rule them out and know they are ruled out.  

But with everything that has happened with him, and knowing he has anxiety, it is something to consider, I think.  

Edit:  If kids have a stomachache, a headache, dizziness, etc, kids do not know if they are having it from anxiety or from being sick or having lingering concussion symptoms etc.  They cannot tell the difference.  They just know they don't feel good.  But if it is anxiety-related, then treating the anxiety is what will help.  And then if there is some associated factor with the anxiety then addressing/treating that will help, too.  It is really easy to get into a situation where whatever was originally going on, has resolved to some extent, but the anxiety is left.  

Edited November 15, 2019 by Lecka

[PeterPan]

Just to make sure, have they done the really simple things like rearranging the rocks in his ears (you can google this) and adjusting his neck at the chiropractor? Maybe it's something more basic, just not something an MD would necessarily notice?

Do you have genetics on the methylation, etc. to make sure he's not being treated for something unnecessarily? Kids' genetics can be very different from ours. Like I have two things and shared one to each of my kids. But it makes all three of us present differently, lol.

[exercise_guru]

On 11/15/2019 at 1:58 PM, Lecka said:

It can be really hard for kids to come back from missing school.  There can be a big issue of getting behind or of not liking school or not being as good at some things.  Etc.  

Anyway -- my son had a big situation and he did have anxiety-related stomachaches.  It is very real to happen.

One of his friends had similar issues, but it started when he had a concussion.  He was supposed to come back to school in 2 weeks.  Then it turned into 6 weeks.  Then he kept telling his mom he had symptoms.  He was in and out of school.  She got multiple doctor appointments over a year to make sure he didn't have lingering concussion symptoms.  

In that time he was having similar issues as my son.  

In the end she never found out about any physical concussion-related issue past the 6 weeks.  Now, how do you ever really know

 

This is something that is of big concern to our pediatrician. He knows it is very challenging to get a child back to school when something difficult happens health wise. My son is attending school from 10 to 3. I get him up and get him on the treadmill. I have told him that he needs to do this to not have to repeat 6th grade. We are also telling him to focus on math as much as possible because that is what will hold him back . he is basically existing at school as far as academics but I have told the teacher to just be patient and as the fog clears hopefully it will improve. We are pushing him strongly into a routine. 

 

The anxiety treatment is prozac and I worry to start it until he sees the nuerologist ENT Monday then I will have to decide to start it once I get the all clear from him. I am going to ask him about the EEG as well. 

thank you for your input It was of great help. Could you share more of what advice you might have give reflecting on your sons experience and that of your friends?  Did the condition improve on the weekends? Did the child participate in activities outside of academics?

My son was so grateful he could go with his dad trick or treat for a few blocks. Was exhausted but glad he could go. He has gone to friends house and been goofy and enjoyed them but has not played video games becuase they are too disorienting but tries to stay on youtube alot but I take it away and restict it as much as possible. 

 

Edited November 17, 2019 by exercise_guru

[exercise_guru]

PP thanks for the follow up question to my recolection this is all I have done. 

Aug 12 surgery tonsils adenoids because of challenges with sinus infections and if he gets the sinus infections just messes up his hearing attention and auditory processing 

Sept 3 started a brand new school

September 18 tried Concerta for 3 days. 

September 22nd had fevers and started to have a bit of a chill. DR told me to try to keep it from going into his sinus so said to use sterile epi pot sutures had healed at that point and ENT from surgery was happy that all was well. My son was still dragging along and felt a bit tired trying to get back into school . decided to wait o the concerta

MondaySeptember 23th urgent care thought it was inner ear infection as balance was affected. At this point I was worried about him missing an entire week of school instead stretched for 5-6 weeks

September  26th Saw Surgery ENT as 6 week  follow up from surgery Balance severely affected couldn't walk straight. Room spinning while sitting or laying Doc gave him prednisone, Meclizine, tried Augmenton. 

September 30 saw his pediatrician. thought it was likely labrynthitis or vestibular neuritis wrote him out of school and I worked at home in keeping him walking around the block holding my arm etc. 

October 2nd.  Chiropractive very good kinisiologist who tried to access if it was worse looking a different direction and assigned the epley manuever and other manuevers for the inner ear then we would walk him holding my arm. Didn't see to work but we continued that for 2 more weeks and returned several times to chiropractor. 

Ocober 15th had an assessment 3 weeks from start of symptoms with Vestibular PT. She did not feel it was meneres thought it might be the CNS related as his eyes didn't spin etc he could walk toe to toe and jump off a step. didn't seem to matter which way he looked . Elevators and standing affect him as well as riding in the car. Laying down or sitting down do not make him feel better. He feels like he is sinking into the bed through the floor. 

October 15th saw personal counselor to help him with the emotion and stress. 

October 18th continued  from 2 weeks earlier to have Blood Pressure symptoms orthostatics he would become lightheaded while laying to standing his blood pressure dropped and he would almost faint. plugged him full of electrolites and water. Still persisted

October 21 removed his braces so we could get the MRI

October 23rd saw the cardiologist EKG and Echocardiogram normal but orthostatics continued so we took him off of meclizine and hydroxyzine etc because it didn't seem to be that kind of "dizziness" didn't improve on weekends laying down or sitting. Cardiologist said lets keep going and not look at POTS because it still was only 4 weeks in. 

October 24th MRI and blood work. All normal. 

OCtober 28th tried attending 10-3 up until this point he had been attending from 10 to 1pm as we could make work

October 30th Went to Vision Therapy Optomologist. He said my son's ocular motor was significantly impaired. He is going to retest him next week. Editing to clarify. My son had vision therapy with outstanding outcomes and as part of that he returns for yearly checkups and eye exams so we have a lot of data. He had his exam end of July so we have good data. I went back because part of this testing can access ocular activity and ability to read as well as brain assessment. They use these tests for Parkinson and concussions etc. But anyway we have good data to. Compare to so this is helpful data and shows that now he is having ocular motor impairment. 

 

 

Son continues to be dizzy and moody. Is not helped by the 12 year old  "Malaise"  I am getting grief from "cooperation" with the teachers but I honestly one week until Thanksgiving and then 3 until christmas break so we can ride it out and regroup.  As soon as I get the all clear from the Neurogist will try Prozac but I am concerned it is going to just increase problems . 

 

We will see an ENT neurologist 

 

Edited November 17, 2019 by exercise_guru

[Lecka]

My son did not participate in much of anything.  It was really not good.  It ended up there were a lot of stressful things plus some things at school not going great.  The school thought it was all because of my husband’s combat deployment to Afghanistan.  They were aware or other things and addressed other things, but they thought it was mainly a deployment thing.  
 

My friend’s son’s Dad was a pastor and their church had its own Boy Scout troop.  He continued in the Boy Scout troop all along (after the 6 weeks was over) at great effort to the parents.  He had ADHD and was having social issues before the concussion.  My son also had social issues.  They had been good friends in 1st grade and then quit being friends in about 3rd grade I guess.  However after about two months of him being back at school, I would pick up my son and be there early to pick my little kids, and see him, and he would act totally fine until he was with his mom and then he would have a sad look on his face and be leaning on her.  
 

Someone showed me an article recently that was what I was told with my son.  He (and this boy) were in the same resource room, it was a pull-out at the resource teacher’s discretion.  My son also was in the regular class with a 1:4 aide at the resource teacher’s discretion.  My son was totally shut down at times and was sitting and rolling pencils across his desk.  
 

Edited November 17, 2019 by Lecka

[Lecka]

https://jessicaminahan.com/wp-content/uploads/Helping-Anxious-Students-Move-Forward-Red-Work-Avoidance-Minahan_EL_1218.pdf

They said with my son they were seeing problems with initiation, he would sit and not get started and go in an anxiety spiral.  In the resource room the teacher could sit with him and help him get started and encourage him and things like that.  

[Lecka]

My son also did some CBT program with the school counselor, it was once a week for so many weeks.  

[Lecka]

If this is anxiety related — I think anxiety can explain all these symptoms.  That is not at all saying I think it does explain all these symptoms.  At some point you will think physical issues have been ruled out, or find out a physical issue, I think.

Okay, for me, with my son having physical symptoms from anxiety — I can’t ask him how he feels.  Just asking him will make him more likely to feel bad.  If he says he feels bad we talk about how when you feel nervous that can make x, y, z.  
 

I got guidance from school and the doctor — if he does not have a fever or a clear physical symptom, then assume it is anxiety.  Don’t let him be avoidant as much as possible (like — baby steps can be good, that is not total avoidance — but it doesn’t have to be expecting him to do something that will be a huge deal, either).  

He had an IEP at school.  They had initiation down as an executive functioning issue, he also got help with organizing things.  
 

He had various supports that you see on lists for initiation — help getting started, cues from the teacher, classroom seating, etc, that kind of thing.  
 

The school nurse worked with the school counselor and knew what kids were coming and saying they didn’t feel good.  She would talk to them in some anxiety recommended way and send them back to class and let the counselor know.  My son was not really going to the nurse anymore after he was working with the resource teacher.  
 

I read a book about parenting and anxiety and tried to follow the advice.  I was letting him avoid things which did make his anxiety worse.  I was also saying some “worst case scenario” things that I thought were helpful but backfired in how he heard them.  No anxious kind of thinking needs to come from me, I have to go out of my way to avoid it.  I have to see him as a capable and competent person.  
 

The thing is once the situation is there, it is very hard to get out of, it takes time to get out of, because it is gradual, and fragile.  My son was fragile even after — things “should have” been better.  But over time he has gotten a lot better.

They we’re always skeptical to say he had any diagnosis versus saying it was situational, they did think it was our family situation, basically, and not that he would have a diagnosis.  He did get a dysgraphia diagnosis, but nothing else.  They thought I was overly medicalising as i thought he might get an ASD-1 diagnosis for a lot of this time.  My younger son does have autism.  
 

To a great extent he was with boys with ADHD in his 1:4 group and I think he did better than them in some ways and worse than them in some ways, but they were a nice group of boys and the teacher encouraged them socially, which was a huge help also. 

[Lecka]

To be honest if “they” think you are going to go into a lot of alternative medical treatment, they can be less likely to say “he is fine, it’s anxiety.”  Which I think gives mixed signals.  But it was a concern I know they had with me — I could agree with them it was anxiety, or I could look more at going to doctor appointments for stomach issues of various kinds.  
 

But it was like — what they said to me about anxiety really rang true.  We didn’t have the same kind of situation as my friend whose son really did have a concussion.  
 

We moved and I haven’t kept in touch with her.  He was doing just okay when we left.

My son has turned out to do much better with the move and being at a less competitive school and being in all regular classes — being old enough now that classes are split between regular and advanced, he is really thriving in regular classes.  I think his school is still competitive but within the advanced classes and then it’s not competitive in the regular classes.  
 

It could also be that the fresh start did well for him, and my husband’s job has been more consistent with hours also, so — it is hard to say.  But he is getting up and ready on his own and does his homework, he is in 9th grade this year.  
 

Edit:  his resource teacher’s goal for him was to not need supports when he started 7th grade, and to be independent in his work and have me not get on parent portal.  She gave me advice not to get on parent portal for him, she thought it would be bad for him, so I don’t have a parent portal log in.  He had a student log in and my husband looks once in a while.  For the most part we get a progress report and a report card and that is all.  Edit:  to explain — she thought he needed to see he could make a mistake and it would be okay, and she did think his executive functioning was strong enough, but that he would feel helpless if I looked at it and then be prone to thinking he needed my help and couldn’t make it on his own, which would be getting back into an anxiety thought process for him — so the main thing is avoid the anxiety thought process.  Which — they don’t think he has general anxiety but since he had this circumstance we need to be careful and avoid any thing that could bring it up again.  

Edited November 17, 2019 by Lecka

[ktgrok]

Ok - so as much as anxiety can cause feeling faint, etc it can't effect, to my knowledge, his ocular motor ability. If the eye doctor saw vision problems that is concerning. I know usually vision therapist specialize in motor things, so I'd consider having him see a more general practice opthomologist if need be to follow up on that. 

And I am glad you are going to a neurologist - I really think that's the missing step here - not missing as in your overlooked it but as in still waiting for their input. 

[Lecka]

I agree but — unless it was tested before, there could be no change.  That could be a separate issue that is good to check out but maybe has always been there.  
 

My son also had OT for vision tracking issues — it can go along with a lot of things.  
 

I think it’s definitely worth following up on.  But it is hard to say it is the main thing going on.  And then if it is — great.  But if not how much time is wasted thinking it will be the answer to everything.  Especially depending on what the vision person says about what kind of daily life problems would be expected with what he is seeing.  

I think also when there are percentiles some kids are in lower percentiles and progress can be moving up into less-low percentiles.  It’s not always a smoking gun that can be fixed.

At the same time — yes following up on it and asking questions sounds good 🙂. 
 

But ime it’s not good to send kids messages like “I don’t know, you might not be able to do it, you might be a kid who can’t do things very well” is not good and kids need to have realistic expectations they can meet and not have to be stuck on either shutting down (it’s too hard) or avoidance (which feeds anxiety).  There is very likely some middle ground there.  
 

But just to add weeks or months of “I don’t know, you have something wrong with you maybe,” is going to have consequences with known anxiety and known coming out of having a medical situation.  
 

Which is a hard balance to find but I think probably the thing to look for.  

[PeterPan]

Is he still on the hydroxyzine or off? 

When you write all that out, it *looks* like a boy who doesn't feel well who is therefore pushing back (rightly). But I have no stinkin' clue. I guess you're the parent so you are the one to judge if it's mental/attitude or if something is wrong that they haven't pinpointed yet.

Do you have genetics to know where he is with methylation, etc.? And you're sure they didn't do something like knicking something or leaving in something when they were in there? And is his gut ok from all the stuff he was on? 

I have no clue. I agree with you it's odd for him to go from fine per the VT doc to totally whacked per the VT doc. That's really concerning. Which goes back to whether he's rightly pushing back because he doesn't feel right.

If you keep him home, can he work at home? 

The Epley thing should have felt better almost immediately if it was the issue.

What supplements is he taking? Anything at unusual doses or above RDA that could maybe be not right or not absorbed well? If I up my D without taking enough K2, I get dizzy like that.

If the ps put him on homebound, they would send a teacher out once a week or something to work with him, right? If he's able to go part day, doesn't seem like they'd want to do that.

How long was he on the hydroxyzine? We have used it on my ds to good effect, but it's very strong. It whacks his system and leaves him wetting the bed, etc. I don't know if it's a methyl donor? I really don't know. Sometimes it's the right choice for my ds, but I'm saying he could still be having side effects from medications if he has a persnickety system (slow metabolizing the meds, methylation defects, etc.) and was on quite a bit or for quite a while.

All doctors can do is say they ran their tests, it's in your head, shut up. If you want something beyond that they test, you have to figure it out for yourself, sigh. Even something as inocuous as the nitrous gas they use putting you down for the surgery could have been an issue. Like if you google it, you'll find things like MTFHR defects leading to hyperhomocysteinemia after N2O administration leading to psychiatric symptoms. It's not a crazy rabbit trail to be asking this stuff. 

[exercise_guru]

Thank you everyone for posting. I am  not going to get hurt or offended at all I welcome all ideas. I realized I had left details out as to why I took him to the eye doctor as the documentation to Tha was already in his 504. and that he is going to a ENT neurologist where we will discuss EEG and how to provide some PT to reset that balance syatem

 

Monday and a skilled private  counselor who are family has know since 2nd grade. She is working with him on the anxiety and communicating with the school to help keep him engaged as he recovers.  If I do acupuncture for vertigo /anxiety my Insurance pays for it and the school doesn't need to know. It can't hurt and it is free to me so I say do it

The original solid diagnosis concluded that at beginning this was likely viral labrynrthitis or vestibular neuritis. 

It can last weeks and weeks like 6 to 8 weeks at the beginning it was hell and pretty terrible but after 5 to 6 weeks he started to Smile and then have moments where he was  getting better now he is saying he is depressed and the only thing that brings him happiness is electronics.  He also hae moments where he is not distracting himself like laying in bed where he crys and says his head is still spinning.

The challenge is I work after he gets home from school. I can't be there to support and entertain him from 3 to 7 and we took him out of soccer and guitar for the fall. I don't like the idea of a depressed 12 year old home. With these symptoms.  There is an after school boys and girls club. But none of his friends go there anymore. And the kids who do are quite rough and would not be a good influence for my son. 

To make matters worse this dizziness and unbalance and disorientation can come and go for a long time. That is really hard for a kid just hitting puberty who already has auditory challenges  and extrinsic motivations and significant executive function issues. 

Really many of these kiddos have symptoms that dance on the border of add. In my sons case he is delightful if not at  school and boring work isn't involved. He can clean his room and perform at a high level given the right motivator. He is kind but likes to be close friends more than running in groups. The doctor days he likely has inattentive add but there is no way with the dizziness and oethostaric issues that we  an try concerta or anything like that. Strattera can cause oethostaric issues so that is out as well. I have not read up in all. Of the alternatives but there is a good natural path that I could consult. I have hit green smoothies and need to get the cruciferous sprouts up and going. 

The symptoms don't go away easily. It is r as hard to laugn and joke with friend as it is to write a full essay. He did make it through tricker treating and has played at a friend's house. He went bowling with friends, his sister was there and said he was having fun. He came home wiped and said it was fun but took more out of him than it gave in happiness. 

 

I share this because you are. Some of the most insightful parents and I think sharing what I can might stimulate more ideas. 

 

Now I am going to go back and read all of the posts just wanted to clarify 

[Lecka]

Anxiety is a real thing, too.  It is no joke.  

Edited November 17, 2019 by Lecka

[Lecka]

Really — I have no idea, how could I know?  But I do think it’s possible it’s anxiety and if that is the case — it is no joke!  It is no joke.  
 

But a lot of things can make anxiety worse or not make it better — it is just as worthy as being what is wrong as any physical condition.

Of course physical explanations are worthy, too. But it’s not some kind of — dismissal — to say “hey this could be anxiety.”

Anxiety is seriously no joke.  

[Lecka]

Do you think he could have more supports or services at school?  Do you have paperwork about the possible ADHD?  I know it depends a lot -- but when there are kids who can't take medication for ADHD ime they may be able to have an IEP and more services.  They may need more of somebody sitting near them and providing re-directs.  

Are you not wanting him to do any academics?  Is that what the doctor says?  

I think that can be accommodated at school if that is the recommendation you get.  There are times kids are having medical issues and do attend just for social/structure kinds of reasons.  I think that is fine if everyone is on the same page.  

Have you had a conversation with the school about him passing or being held back?  My son would never have been held back in 6th grade because they had a policy of social promotion through 6th grade.  There would be no reason to worry about that.  In 7th grade he could have been in a lower math level or (more likely) had a "math assist" period.  He wouldn't have been held back.  Do you know and are on the same page with the school on that?  

Just rhetorical questions.  

 

 

[geodob]

You wrote of a diagnosis of Vestibular Neuritis.
Which effects the Vestibular Nerve.
Where a Virus is more commonly the problem.
But their is some urgency with getting treatment?
As initially, this can cause an Inflammation at a point or points along the Nerve.
Symptoms will vary, in line with variation in the degree of Inflammation.
But the critical issue, is that this Inflammation.  Can cause a Lesion or Lesions along the Nerve.
Which cause Permanent damage to the Nerve.
So that if he currently has Inflammation of his Vestibular Nerve?
Then it is critical that this is addressed, to avoid any permanent damage!

A course of 'Immuno-Suppressants', could be a first line of treatment.   To reduce any inflammation.
Which will also help with diagnosis, if a reduction in Inflammation. Also reduces his Dizziness?

[Pen]

On 11/14/2019 at 4:25 PM, exercise_guru said:

Hi everyone the challenge continues. My son 12  is attending school from 10 to 3 purely to ensure that he is not socially isolated. He still feels unbalanced and dissociated. They are thinking of trying prozac to help with the depression and CNS suppressant  because it causes the least amount of dizziness.  He continues to struggle reading where he usually reads a book every 3 days he has barely finished one in the past 7 weeks.

This is a new school and he has multiple doctors notes and a 504 but I fear its not going to work. The teacher just thinks he is being disrespectful when he says he can't do the work. His noncompliance and lack of work product is being interpreted as laziness or ADD.  I ask her what he would like him to say to her? His doctor has said that this can take months go get over and being nice to a friend is far different from producing an essay. I already had a child that struggled I don't know how this is going to go. 

The worst is I spent years teaching this child not to distract himself and focus on academic work. Now he has told me the only way he can cope with the diizzy unbalanced feeling is to try to distract himself

 

This sounds like something is seriously wrong on a physical / medical level and that it needs to be figured out.  

I think you need second, maybe third opinions.

Neurologist?

ENT? 

 

****Could he have Porphyria?***  (Coproporphyria or AIP for example... could easily have symptoms like that. It’s usually familial, but some cases have arisen from environmental exposures . ) It could explain troubles with tolerating medications, anesthesia, and his symptoms now.   It’s a relatively rare disease, but your description sounds spot on for it.    

(ETA: a long ago test for it can be done at home with urine . It’s not perfect, but would be very helpful information.) 

If he turns out to have that you can tag or PM me if you want as I know quite a lot on that.  

 

Personally, I would be trying to find medical help to figure out and heal the underlying problem, not cover up symptoms with Prozac... eta - especially if he does have Porphyria, the wrong medicines can make it worse, some can even be fatal, and it’s typically an encounter with a medication that first brings out symptoms . 

 

 

 

 

Edited November 19, 2019 by Pen

[Pen]

Also look at the other anxiety related threads up or search them for anxiety related ideas. 

[Pen]

On 11/16/2019 at 7:49 PM, exercise_guru said:

PP thanks for the follow up question to my recolection this is all I have done. 

Aug 12 surgery tonsils adenoids because of challenges with sinus infections and if he gets the sinus infections just messes up his hearing attention and auditory processing 

Sept 3 started a brand new school

September 18 tried Concerta for 3 days. 

September 22nd had fevers and started to have a bit of a chill. DR told me to try to keep it from going into his sinus so said to use sterile epi pot sutures had healed at that point and ENT from surgery was happy that all was well. My son was still dragging along and felt a bit tired trying to get back into school . decided to wait o the concerta

MondaySeptember 23th urgent care thought it was inner ear infection as balance was affected. At this point I was worried about him missing an entire week of school instead stretched for 5-6 weeks

September  26th Saw Surgery ENT as 6 week  follow up from surgery Balance severely affected couldn't walk straight. Room spinning while sitting or laying Doc gave him prednisone, Meclizine, tried Augmenton. 

September 30 saw his pediatrician. thought it was likely labrynthitis or vestibular neuritis wrote him out of school and I worked at home in keeping him walking around the block holding my arm etc. 

October 2nd.  Chiropractive very good kinisiologist who tried to access if it was worse looking a different direction and assigned the epley manuever and other manuevers for the inner ear then we would walk him holding my arm. Didn't see to work but we continued that for 2 more weeks and returned several times to chiropractor. 

Ocober 15th had an assessment 3 weeks from start of symptoms with Vestibular PT. She did not feel it was meneres thought it might be the CNS related as his eyes didn't spin etc he could walk toe to toe and jump off a step. didn't seem to matter which way he looked . Elevators and standing affect him as well as riding in the car. Laying down or sitting down do not make him feel better. He feels like he is sinking into the bed through the floor. 

October 15th saw personal counselor to help him with the emotion and stress. 

October 18th continued  from 2 weeks earlier to have Blood Pressure symptoms orthostatics he would become lightheaded while laying to standing his blood pressure dropped and he would almost faint. plugged him full of electrolites and water. Still persisted

October 21 removed his braces so we could get the MRI

October 23rd saw the cardiologist EKG and Echocardiogram normal but orthostatics continued so we took him off of meclizine and hydroxyzine etc because it didn't seem to be that kind of "dizziness" didn't improve on weekends laying down or sitting. Cardiologist said lets keep going and not look at POTS because it still was only 4 weeks in. 

October 24th MRI and blood work. All normal. 

OCtober 28th tried attending 10-3 up until this point he had been attending from 10 to 1pm as we could make work

October 30th Went to Vision Therapy Optomologist. He said my son's ocular motor was significantly impaired. He is going to retest him next week. Editing to clarify. My son had vision therapy with outstanding outcomes and as part of that he returns for yearly checkups and eye exams so we have a lot of data. He had his exam end of July so we have good data. I went back because part of this testing can access ocular activity and ability to read as well as brain assessment. They use these tests for Parkinson and concussions etc. But anyway we have good data to. Compare to so this is helpful data and shows that now he is having ocular motor impairment. 

 

 

Son continues to be dizzy and moody. Is not helped by the 12 year old  "Malaise"  I am getting grief from "cooperation" with the teachers but I honestly one week until Thanksgiving and then 3 until christmas break so we can ride it out and regroup.  As soon as I get the all clear from the Neurogist will try Prozac but I am concerned it is going to just increase problems . 

 

We will see an ENT neurologist 

 

 

I would be concerned about Prozac etc increasing problems too.  

Agree with seeing ENT and neurologist.  MS can also present as feeling “dizzy” or unbalanced and can have ocular effects. 

I Think you should do the easy, nearly free, home basic old fashioned test for porphyria too: 

nowadays is easiest to do with 2 matching white paper cups that you can throw away when done.   

 

Get him to pee in one and split the urine as evenly as possible between the two cups (reason for white cup and even amount is you’ll be looking for color change and that makes it easier.) 

Put one cup in a **dark** cool place. 

Put the other in as bright direct sunlight as you can. (I know if you are northern hemisphere it can be hard to find good sun, no rain or snow etc, but do your best. )   Compare the color of urine in dark to urine in sunlight at 24, 48, 72 hours.  See if there is any difference in their color.  Darkening , or really any unusual change, in the one exposed to sunlight will tend to indicate porphyria (though a few other things can also cause that, and it’s possible to have porphyria without color change manifestation).    If the urine starts out port wine or some such color even before starting test and he hasn’t eaten something like beets and isn’t dehydrated that’s also suspicious.  

 

[exercise_guru]

The specialist had him in an audiology booth. He is certain that this was vestinular neuritis that has developed into constant vesribular migraines. It's like he has an unbalanced dizzy feeling like a dial at a 5 but Fast motion, bright lights, strong smells all make it worse and turns the dial up to a 10.  The fire alarm at the school keeps going off and wiped my son out. 

I am just reading up on this now along with following up with some. Kind of OT or PT

 

 

[kbutton]

This came up on another thread and is probably a long shot, but it can cause vestibular issues: https://vestibular.org/cholesteatoma#

 

[exercise_guru]

Thank you for all of your posts. I am going to check on cholesteatoma and porphyria. I am worrying that this is a condition that is going to develop into something serious but if the symptoms don't continue to get worse I am going to continue to work the problem the best I can. 

 

So update We went to an out of state pediatric migraine specialist over Thanksgiving.  He was very familiar with Vestibular Migraines and 3PPPD (PERSISTENT POSTURAL-PERCEPTUAL DIZZINESS). He prescribed Prozac  and a Beta Blocker Polypronol . His symptoms certainly match the diagnosis but no explanation of why or how to resolve.  There doesn't seem to be anything that completely removes the dizziness but sensory stimulation makes it markedly worse. 

 

[Lecka]

I hope the medicine will help!

[exercise_guru]

Just posting an update. 

He was diagnosed with Vestibular migrains and Pesistant Postural Perceptual Dizziness. Now he has started to develop Traditional Migraines that will not break. He is currently on a Beta blocker Propranolol and Prozac as the migraine specialist said this can work over time. 

Anyone have a kiddo with Migraines. We tried a rescue with Trypson type medication and it made it worse. The doctor wants me to take him to the ER to try IV rescue Topomax and Magnesium. it may happen but my son is terrified of IV's and I am trying everything else first. 

I guess I am officially homeschooling if you can call it that. The school called last Monday and my son has been home with Migraines and not attending. He says the migraines ramp up the dizziness. Sorry guys I am in mom hell right now losing heart.  the Prozac helped with the depression and it is obvious that there is something serious going on as no medication seems to break the dizziness. My mom had this for quite  along time when it was Menieres and eventually abated. Our Vestibular therapist has not been helpful at all. She gave us a gaze fixing exercise to do and prior to the onset of the migraines I had started to work on home therapy and trying to retrain the brain to balance. Now these headaches are so severe I can't get much cooperation for anything. 

I requested a VNG to make sure that this is in the CNS instead of the cochlea ear area. Given his history of Auditory processing my working theory is that the auditory vestibular nerve was always weak and the surgery inflamed and agravated it to such a high level and that is why the symptoms are happening. 

Pen I will try to do that urine test but we have no sunshine here. The diagnostics for MS and nerve stuff are sucky they are sending him to a CNS neurologist now we went to a Neurotologist ( who diagnosed the Vestibular migraine and 3PPD) and then a pediatric Migraine expert .  I truly have no idea what happened, why this came on and how to help my son. 

MRI ruled out tumor or Cholesteatomas and any kind of brain tumor. 

Cardiologist said that POTS is unlikely as he has these symptoms laying down. 

Edited December 18, 2019 by exercise_guru

[J-rap]

Hello, I just saw this thread, and anything with the word "migraine" in it catches my eye!

I do think that sometimes certain bodies (brains) are just prone to developing migraines.  Who knows what suddenly starts them up.  With my dd, she was about 15 and watching a movie, when she suddenly felt sick, like the flu.  I think she might have had a fever.  She was with a group of kids, and the leader had me come pick her up because it was during the swine flu scare.  In the midst of it, she developed a horrendous headache and dizziness, and it never went away.  She eventually was diagnosed with chronic migraine.  We kept trying to figure out why it started when she had the flu-like symptoms, thinking it must be related and there must be something we could do to fix it.  She has been to about 6 top-notch neuro clinics, including Mayo Hospital, over the years, and no one can explain.  Just that some people are practically pre-determined to have migraines (due to their particular brains) ~ it's just a matter of the perfect storm to trigger that first one, which could be a mix of age, hormones, environment, sickness, stress, or who knows what.  For some people, it might be just a handful of triggers, but for my dd, her brain is so hyper-sensitive that it's almost like life itself is a trigger.  (Even thinking hard was for awhile...  so we cut homeschool down to bare basics for awhile.)

My dd has a lot of vertigo/dizziness too, and sometimes cognitive issues and a whole slew of other things.  Medicines don't help her at all.  She has also gone on elimination diets to remove every possible trigger, added supplements, upped her vitamin D, went through genetic testing, had chiropractic treatments and massages for months, acupuncture, you name it.   That didn't help either.   BUT, over time, she has found a lifestyle that helps a lot.  It's mostly eating clean (and foods that are simple and easy to digest), sleeping enough, gentle exercise, gentle daily routines, low-stress, staying away from bright lights and strong smells, changing positions slowly, turning her head slowly...  The chronic migraine brain is very, very sensitive to the environment around them and even to their own bodies.  Any subtle change is enough to set things off.   (Weather is a strong influence too.)  But, my dd has figured out a lifestyle that works well for her, has a job she enjoys, and is very happy.  (Just to give you hope!)  And probably her brain has just settled a bit as she has gotten older.  (Also, her case is very extreme;  most aren't so extreme!)

The two migraine books that really helped us a lot were Heal Your Headache by David Buchholz and Migraine by Oliver Sacks.  The first one was most helpful in addressing a migraine and learning about various triggers, etc., and the second one was most helpful in understanding the migraine brain.  

Oh, my dd has also been tested for auto-immune conditions, and she does have red flags for some.  One doctor told us that he considers chronic migraine to be in the category of autoimmune conditions.

Anyway, I don't know if any of that is helpful or not, but wanted to put it out there for you in case it is.  I hope he finds something that helps him very soon!

P.S.  Another dd has migraines too!  Hers began as abdominal pains off and on for a couple years, and eventually morphed into traditional migraine headaches.  They started out very intense, but she rarely has them anymore.

[Pen]

 

1 hour ago, J-rap said:

The two migraine books that really helped us a lot were Heal Your Headache by David Buchholz

 

I agree on Buchholz

I also recommend it. 

plus Mark Hyman’s Ultramind

plus Tom O’Bryan’s Autoimmune Fix

 

 

 

plus Yoga for Headaches (books and YouTubes)

plus Seal Breathing for headaches (see YouTube films)

 

 

I find Goody’s Headache powders in Cool Orange  (over the counter medicine) works as well as any other medicine I’ve tried  (not perfect but a help) ...  

I keep my magnesium up mostly with Epsom salts in bath (or let it at least be soaking on my feet during showers by shutting the drain), and Magnesium oil or lotion topically.    Vitamin D3 and B vitamins also make a difference for me. I use Ginger capsules and or activated charcoal if I’m having abdominal symptoms 

have plasma zinc, iron and copper levels been checked ? 

[Pen]

B2 Riboflavin ; CoQ10 ...   other vitamins and supplements. I can’t recall if Buchholz covers those or not.