His doc is shocked.

Posted by: JustAMom

His doc is shocked. - 05/28/11 05:22 AM

Hi everyone. I'm hoping someone would have an idea that would lead me towards the right direction. I thought of listing the various things I've been hearing from teachers to his doctor because, it seems everyone is confused.


  • My DS18 has been ID gifted since kindergarten.

  • His psych doc dx him ADHD combo type in 9th grade. Medication seem to improve poor grades for lengthy assignments.

  • Participated in university study on Twice Exceptional behavioral research where they had said he has an extremely fast processing speed.

  • Last two years of high school he has not had consistent grades (extremely low then extremely high grading pattern)

  • Teacher has continually said, he is highly capable when he can focus.

  • He took himself off of meds in January.

  • He started having attendance and grade issue due to sleep problems

  • He went to truancy court for 16 non-consecutive days of absences. I thought this was a choice he made with poor sleeping habits and giving himself a day off for waking up late.

  • His gen practitioner thought poor sleep habits and gave suggestion to help incorporate better sleeping habits.

  • Psych doc supports 'no med' decision son made.

  • Thoughts of Asperger like tendencies and behavior. Psych doc and psychologist suggested further testing.

  • He went back on med through my urgent concern. He was more successful and had fewer sleep issues when he was on them.

  • In the past 6 weeks, his grades significantly improved and he did not have problems getting to school on time.

  • The judge urged the school and myself seek further testing to explain why a student who obviously enjoys school is having issues with grades and attendance.
  • He does not use recreational drugs and has been tested for it when he was summoned to truancy court.

  • Son starts having sleep issues again. It seems like he is caught up in the excitement of graduation and interacting with his peers online before everyone goes off to college.

  • He has a grand mal seizure waking up in the morning this week. He never had one before

  • Paramedics had difficulty transporting because he went into an explosive angry fit. Sedation was difficult.

  • ER Neurologist wants to wait before assigning a dx.

  • Psych doc seems troubled. He has not had a patient who has had a seizure under his care and took him off of meds. (he now takes Keppra as neurologist prescribed)


From an exhausting week I am now very confused on what to think anymore. confused
Posted by: aculady

Re: His doc is shocked. - 05/28/11 06:47 AM

Well, I agree with the ER neurologist that further evaluation is in order. I'm assuming that they have done brain MRI, EEG, etc. to rule out tumors, infarcts, infections, and closed head injuries as possible sources of his issues. Do you have all the results back from these tests? If not, it is really too soon to start trying to diagnose what is causing the behavior or the seizures.
Posted by: JustAMom

Re: His doc is shocked. - 05/28/11 07:09 AM

Yes, he has done a CT, MRI, EEG as well as various blood and urine tests. They all report normal The neurologist released him the next day though I was concerned about his slightly unusual behavior. He was very euphoric, unable to sit still, and chattered random impulsive thoughts. The neurologist said this may be expected for a week and its so difficult for me to wonder if his medication, seizure or both is causing it. The next day, he was sluggish, a bit down, and extremely forgetful about what he was suppose to do next.

I guess I'm worried his afternoon sleeping spells could have been seizures as well as his poor ability to stay awake in the morning. I'm also wondering if he was having absence seizures instead of ADHD type issues.

Would the next course of action be .... finding a neurologist? Would most of them be aware of twice exceptional kids?
Posted by: Cricket2

Re: His doc is shocked. - 05/28/11 07:34 AM

This could be totally off base, but I am wondering if bi-polar has been considered or if there is any family history of that? Sleep issues, wildly fluctuating performance, and moods fluctuating from explosive anger to euphoric behavior could be possible symptoms.
Posted by: 2cool4school

Re: His doc is shocked. - 05/28/11 08:09 AM

I'm no expert (PLEASE let me stress this!), but I think finding a really good neurologist would be the next step. This sounds like a medical issue, and I personally wouldn't be thinking too much about 2E issues. Neurologists should be able to give you feedback on ADHD and Asperger's, as well. I knew a boy growing up who would sometimes zone out, and had some other behavioral issues. He was eventually diagnosed with epilepsy/absence seizures. Seizures can cause drowsiness afterwards. If he's having lots of sleep issues/ daytime sleepiness, you may also want to discuss a sleep study. Best wishes and hope you get some answers soon smile
Posted by: mnmom23

Re: His doc is shocked. - 05/28/11 08:09 AM

Like Cricket2, I was thinking bipolar disorder when reading your post. Has this been mentioned as a possibility?
Posted by: aculady

Re: His doc is shocked. - 05/28/11 08:30 AM

Cricket2, while some of this does sound like bipolar, these manifestations can also be symptoms of complex focal seizures.

This is a great link that does a good job of briefly discussing seizure disorders. Pages two and three are particularly relevant here, I think.

http://www.medicinenet.com/seizure/article.htm
Posted by: La Texican

Re: His doc is shocked. - 05/28/11 08:53 AM

Your baby's health is most important first of all, but have you spoken with his school guidence counselor about the doctors visits, tests, and homework and working out a plan about school attendance in the meantime.
Posted by: JustAMom

Re: His doc is shocked. - 05/28/11 09:19 AM

We had thought about bipolar a few years ago. After some time, it seemed his moods would change due to predictable OE reasons.

I am very happy with his school's,efforts in keeping him adequately challenged and accomodating. There is a small population of 2e students in his class. We had him on two separate intervention plans. One for the past two years. The gist of it is that he has to start advocating for his needs as well as attend an end of sclass day study period to check on his assignment progress, grades. Timelines, and ask for clarification or tutorials. He is allowed to retake failing exams if he requests so in a timely manner.

As far as behavior, I am really leaning towards his sensory issues. Light, sound and touch does irritate him.
Posted by: Claire2LilBears

Re: His doc is shocked. - 05/28/11 10:20 AM

Lights can set off seizures, just saying, so everything could lead back to seizures.

A little girl across the street has been diagnosed with just about everything under the sun: speech/language delay, autism, add, behavior disorder, intellectual disability, and when she was finally treated for seizure disorder one by one the other dx proved to be not so accurate although she is still understandably behind. When her seizure meds need to be adjusted, she once again has problems in school. She also has problems with heat (which isn't great in FL)
Posted by: JustAMom

Re: His doc is shocked. - 05/28/11 03:44 PM

Ok, I wanted to make a correction. The neurologist said all of his tests were "good" however, he wanted to look over and study the EEG test results before giving me his opinion. My son's grandmother was with me when I spoke to the neurologist and clarified what he had said. I guess I was a bit distraught over his seizure.

I feel awful for agreeing with the consequence of truancy court. Every time he missed school from oversleeping, I had him visit his psych doc and gen practioner who both thought it was more of a behavioral issue than medical. I understand why the school thought truancy court would encourage him to make better choices and start asking for what he needs in order to be successful. Now, I'm not so sure if he is capable of doing such because it seems as though he is unaware about what to ask or what he doesn't know. After the court ordered improvements asked of him, he did incorporate better study habits and started checking in with each teacher to see if he is doing what is required.

I am a bit afraid that the dx of ADHD was wrong this entire time eventhough his ADHD meds seemed to improve his academic performance while intensifying anger during the afternoon.

We have a seizure center nearby so I am hoping to get an appointment with them soon.
Posted by: Mam

Re: His doc is shocked. - 05/29/11 11:35 AM

This sounds fairly complex. Have you considered a second opinion in terms of the psychiatrist? I would definitely look into that as well as pursuing everything else.

Bipolar is many times misdiagnosed as ADHD, and the worsening anger while on a stimulant brings the BP back to the front of my mind. Aggressiveness and anger can increase in BP kids treated with stimulants.

(((HUGS)))
Posted by: JustAMom

Re: His doc is shocked. - 05/30/11 06:14 AM

I have some progress. I re-contacted a neuro-psychologist who was interested in accepting my son as a patient a few months ago. I think his expertise seems to be assisting ADHD professional adults/college students. He helped me understand why most neurologist and psychiatrist may not be able to diagnos and gave me a few recomendations to neurologists who specialize in adolescent onset seizures.

Can I say the insurance referal process is more than a pain? Why does it seem like their CSR's goal is to tell you "we can't help you because our policy for X, Y, Z, 1, 5, 2..... says you have to wait for a doctor to admit he doesn't know what he's doing? However, if you want a flu shot, they are free" They want me to start with a brand new in-network PCP and exhaust all regular neurologists and psychiatrists before he can see an epitologist. That sounds like 2-3 months later... he might be able to see an epitologist who may be familiar with what's going on if he/she takes this terrible insurance plan.

I was able to find a researching eptiologist for a September appointment but he's willing to look at doctor's and test results now if I have them sent to him.

I was very sad when I heard him say, "My whole class (AP/IB) is in the top 10-25%." He didn't realize it before graduation rehersals. I just told him when we get this figured out, perhaps we will know why his teachers had told him "This is so easy for you, Why can't you just do it?" He started hearing this as early as 6th grade.
Posted by: melmichigan

Re: His doc is shocked. - 05/30/11 12:57 PM

If you are comfortable what med was he taking for ADD? If not would you be willing to PM me?
Posted by: JustAMom

Re: His doc is shocked. - 05/30/11 04:12 PM

I'm okay with discussing meds. It has been a journey to figure out what would help him become successful in his academics as well as to learn how to advocate for what he needs.

He was/is diagnosed with ADHD-combo type w/anger and Asperger like behavior. He was taking Vyvance 60 mg most of last year. He insisted on taking med 'holidays' on weekends and summer. When his senior year started, he was able to tell his doc he would like to take 35 or 30 mg in the morning and another 30 mg around 11:30 because he seemed to notice that it wore off by 3 pm if he just took it in the morning. He also too Intuniv which he says helps him relax and go to sleep. sonata was prescribed as needed but he rarely took it but once or twice. He still had some irritability in the afternoon. If our dogs would play or if someone talked in his presence, he would complain and get angry. His doc suggested NAC... n-acytal-cystine, a supplement which can be found in specialty vitamin stores. I've read somewhere some autistic children has tried NAC in the past as an agent to de-toxify. He thought it worked in calming him but he didn't really care to take it anymore after a month. The first 6-months of school were overall pretty good.... consistent passing grades and perhaps one or two tardies here or there.

By January this year, he stopped taking everything. He didn't think he had any issues or needed medication to help him. That is where most of his more serious issues started to pop up.... the irregular sleeping, grades dropping, and truancy. Five out of the 16 recorded absenses was in accout of him arriving at school after 1st period and the school's policy is to count it as a full day. He didn't really complain about doing the court appointed counciling or community service. Everything improved after he went back on vyvance 30 mg in the morning and he recieved daily academic monitoring where he is forced to start the assignments in school. He had no problem completing them at home.

Posted by: Nik

Re: His doc is shocked. - 05/30/11 06:39 PM

Originally Posted By: JustAMom
Everything improved after he went back on vyvance 30 mg in the morning and he recieved daily academic monitoring where he is forced to start the assignments in school. He had no problem completing them at home.



Interesting, my DD17 has a lot in common with your son: ADD, borderline ASD, serious irregular sleep issues, oversleeping and missing class or being late, etc. Anyway, one thing that the diagnostician told me was that she had "trouble with her ignition switch" and that I may want to try "starting her homework with her" or "writing the first sentence" for her. I thought this seemed really odd, but my DD said she thought that might have been really been helpful. Of course we didn't get our dx till she was through with school so I didnt get to try it out.
Posted by: ElizaH

Re: His doc is shocked. - 06/04/11 07:33 AM

Im new here, I have no advice. But I feel for you. I hope you are having a better day today but really feel for you, it's so hard.
Posted by: ginger234

Re: His doc is shocked. - 06/05/11 07:26 PM

Originally Posted By: JustAMom
"This is so easy for you, Why can't you just do it?" He started hearing this as early as 6th grade.

I heard this at his age, too. This is a little personal about me, but I have been through some of what your son went through. It would take a long time to write it all out here. But I eventually was dx'd with a sleep disorder & bipolar disorder. And it took a very long time to get my diagnoses correct. (like, dozens of years) I am not saying that your son has the same issues. But you may both have to keep working to find the right dx.
I can share more if you wish, but it's a rather painful part of my life.

Posted by: Nik

Re: His doc is shocked. - 06/07/11 04:57 AM

Ginger, if you don't mind sharing, how did you finally get the sleep disorder dx and what helped? I am really starting to wonder if many of my DD's ADD symptoms might actually be the result of, or at least exacerbated by, lack of quality restorative sleep.
Posted by: Grinity

Re: His doc is shocked. - 06/07/11 07:08 AM

I think poor sleep can be caused by ADHD, and can cause children without ADHD to exibit the behaviors common to ADHD.

Here's a link to an article by Peg Dawson, author of 'Smart but Scattered' a very helpful book about helping kids develop their executive function.

http://www.nasponline.org/resources/health_wellness/sleepdisorders_ho.aspx

((hugs and prayers)) through this difficult transition,
Grinity
Posted by: Nik

Re: His doc is shocked. - 06/07/11 07:35 AM

Thanks Grinity,
I actually have that book...Guess I need to read it again. My DD fits the "delayed sleep phase syndrome" described on that link. I understand that people with ADHD don't produce melatonin so the suggested light therapy probably wouldn't be effective in that case. We have melatonin pills - I guess I just need to make sure she takes them regularly (which is hard to monitor because I fall asleep around 9:30pm whether I like it or not and she forgets to take the pills or chooses not to since she likes reading all night!)

Oh, where is the magic fix-it-all-now pill????
Posted by: Grinity

Re: His doc is shocked. - 06/07/11 07:58 AM

Originally Posted By: Nik

Oh, where is the magic fix-it-all-now pill????

www.appliedmeditation.org

and

Transforming the Difficult Child Workbook: An Interactive Guide to The Nurtured Heart Approach (9780967050751): Lisa Bravo, Howard Glasser

I will warn you that 'now' is a relative term (wink)
But, seriously, we have complete freedom of perspective, and almost always we can choose to see our circumstances a number of different ways. There is so much about life that we can't know, so 'back seat driving' eventually becomes less apealling, yes?

Love and More Love,
Grinity
Posted by: ginger234

Re: His doc is shocked. - 06/07/11 09:11 PM

I will try give you the cliff's notes version: Beginning in high school I had terrible issues with getting up in the morning. I also had a difficult time staying asleep at night. All through college I missed classes if they were scheduled in the morning. I avoided taking those offered during early hours as much as possible, but I went to a small school & it wasn't always feasible. Most people thought of it as laziness (that was painful). frown
Back in 1990 at the end of college I started seeing a psychiatric resident at a local university medical center for depression. She picked up on the sleep problem & realized I was dealing with something organic. This particular medical center happened to also have a sleep center & she got me in to have a sleep study done. I was dx'd with nocturnal myoclonus & periodic limb movement disorder; now pretty much just known as Restless legs syndrome. My legs were moving about once a minute for 5 hours. And I was having alpha-delta sleep. I have been on a couple of different meds since except when I have been pregnant. The medication I take now is one that Parkinson's disease patients might take.
This is a link to the Web MD info on restless legs syndrome: restless legs info They have good info on other sleep disorders, too.
If you have other questions I will try to answer them. Or you can PM me. sleep
Posted by: JustAMom

Re: His doc is shocked. - 06/08/11 06:13 AM

Ginger, it sounds quite similar to what my son is going through at the moment. I knew two of his favorite teachers were at their wits end trying to get him to graduate and they wondered why a smart guy like him was making decisions to procrastinate instead of ask for help. Lazy had been tossed around many times. While the consequence of going to court and mandated tutoring significantly improved failing grades to nearly perfect final exams, his math teacher ran to the school councilor's office to complain about my son missing her finals... the morning he had his seizure. The whole intervention committee was shocked as I was. I guess the conclusion would be, yes, he is highly capable and yes, he has an undiagnosed medical condition affecting his capabilities.

So far I've learned there is a very small number of neurologists who treat patients with ADHD, seizures, and can diagnose Asperger. We were given a recommendation to one who has an interest in patients with Asperger and seizures however, her waiting list begins in 2012! In the meantime, his current neurologist can send information for consultation.

Unique. I'm finding the statistics for my son put him in a very small percentage of the population: high IQ, ADHD, (possible) Asperger, had a generalized seizure. Even his response to keppra is a little surprising to the pharmacist. He is more impulsive and hyperactive like where he is usually absent minded, quiet, and shy. At least I know what he's thinking at the moment.

Nik - I want the answers "now" and I can't find my magic wand.
Posted by: Nik

Re: His doc is shocked. - 06/08/11 07:34 AM

Thanks for sharing Ginger, I'm sorry it took so long for you to finally find the right dx. I really would like to have a sleep study done for DD but the cheapest I can find is over $2K and I am not even sure my DD would be able to fall asleep in a strange place knowing she is being studied...she has a hard enough time in her own bed!

I know it must be painful to have everyone think you are just lazy, My DD has been dealing with that for many years "major procrastinator" "no work ethic" "super smart but lazy" "choosing to fail" even "passive aggressive" are what she heard regularly from many of her teachers. I only just recently woke up to realizing something else was at play, unfortunately, even with the formal dx we have, my DH and my ex seem to think I am just making excuses for DD frown

Good luck Justamom, with waiting lists that long, you would think more docs would realize the need and jump on it.

Have they ruled out the medication as the cause of the generalized seizure? I am sure they know what they are doing and I know nothing about this stuff but I read somewhere that when people go off the stimulants and then back on, they can have really severe reactions like heart attacks etc. I wish I could remember where I saw that.
Posted by: Grinity

Re: His doc is shocked. - 06/08/11 07:47 AM

Originally Posted By: JustAMom
We were given a recommendation to one who has an interest in patients with Asperger and seizures however, her waiting list begins in 2012! In the meantime, his current neurologist can send information for consultation.

Best Wishes Justamom. It's possible that the consultation request from the current neurologist will provide a quicker opening than going through the front door with the waiting list. Or it's quite possible that the current neurologist - with help from this specialist - will be able to do a good job.

There is a 'joke' expression in medicine: 'See one, Do one, Teach one' that actually points to the very good job that the training and enculturation does to help physicians be lifelong learners and teachers.

Love and More Love,
Grinity
Posted by: Grinity

Re: His doc is shocked. - 06/08/11 12:25 PM

Originally Posted By: Nik
Thanks Grinity,
I actually have that book...Guess I need to read it again. My DD fits the "delayed sleep phase syndrome"

My son also seemed to take f.o.r.e.v.e.r to fall asleep. The melatonin helped him fall asleep, and also, it helped him a lot to have a regular 'early' bedtime. It seemed that the more hours he slept the 'better' his quality of sleep, and the easier it was for him to settle in. We'd notice around age 12 that if he went up at 9:30 it was 74x easier for him to fall asleep than if bedtime was 10pm.
As DS has gotten older, we've been less determined to stick to this,
I'd give the meletonin when I go to bed and used to 'put the electronics to bed' around that time also. Boy it's been a tough issue. This year he is at boarding school and says up much too late, but I don't have to deal with any of it, and he seems to be tolerating it.

Smiles,
Grinity
Posted by: barbarajean

Re: His doc is shocked. - 06/08/11 01:02 PM

Just an update and a note

I just wanted to say that you post a lot of useful info. I keep seeing similar behaviors to my ds10. And this sleep issue is so true for my ds, and yes I think I am going to make an appointment with Dr Amend in Kentucky ( referred to in an earlier post), and hopefully get a plan to work on. So I guess now the next step is to organize all the behavioral info for the call. I'm concerned that I am going to miss info in the call. I guess I'm a bit intimated to make the first call but reading this forum is really, really helping to move to the next step.

By the way is there a spell to use on this forum?

barb
Posted by: JustAMom

Re: His doc is shocked. - 06/08/11 05:07 PM

Originally Posted By: Nik
Have they ruled out the medication as the cause of the generalized seizure? I am sure they know what they are doing and I know nothing about this stuff but I read somewhere that when people go off the stimulants and then back on, they can have really severe reactions like heart attacks etc. I wish I could remember where I saw that.


It depends on which doctor I ask. Sleep deprivation and excessive stress was most likely the cause. His psychiatrist who has been treating him the longest, doesn't want him on anything. His general practioner says he needs better sleep habits and get this checked out ASAP. He agreed with one neurologist that he may be "neuro-sensitive". It's not exactly a medical term but that is how the ER neurologist explained it (he also put him on Keppra with enough refills for 3 months) The ER neurologist didn't think my son should have stopped Vyvance which is a very small amount - 30mgs. (That is all my son would agree to take to improve his school situation) We went to the ER again for medical management until his appointment with a neurologist who will take my son as a patient. The 2nd ER doc also thought it was most likely sleep deprivation and stress. He says the amount of Vyvance my son was taking was the amount he prescribes for 10 yr olds and my son has been on vyvance since his freshman year at much higher dosages before. He says the tests they will do will deprive him of sleep in order to show irregular brain waves so having a seizure just tells us he has an underlying neurlogical condition that needs to be determined. All of them said he needs 10 hours of uninterrupted sleep daily.

The strangest part is his EEG. We can't find it. The ER neurologist had blocked it on the record "to be interpreted by neurologist only" and told us he would study it and get back to us in a month. The 2nd ER doc says we can get it on a CD disc the next time we come back to the ER. We went to another hospital the 2nd time because they have a seizure center there. The first ER neurologist is on vacation and his office cannot help because they haven't seen him there. The 2nd ER doc thought it was peculiar that he was put on Keppra for having a generalized seizure for the first time. He thought the EEG may show something concerning but I shouldn't worry because a neurolgist wouldn't jeopardize his career. crazy

Anyway, the neurologist he will be seeing in a few days is quite established. His office says if my son is needing a specialized epitologist, they will refer him out. My son says he feels great... though the rest of us think keppra is making him very loopy.
Posted by: JustAMom

Re: His doc is shocked. - 07/14/11 04:48 PM

We're getting closer to resolving his issues....

After ambulatory EEG testing, it was evident that he has complex partial seizures in his frontal lobe during his sleeping and waking phase.

He may or may not have ADHD and his neuro thought he may have had this type of activity for a while and may be a lifelong condition. His neuro was a bit surprised as he thought while he the EEG would probably report normal activity because he was already on a maintenance dosage of keppra.

I think the next step is to manage the seizures before they start to address attention issues.
Posted by: MumOfThree

Re: His doc is shocked. - 07/14/11 08:06 PM

I think MON has covered everything I was going to say, including starting with the WOW. I do hope that having an explanation is of some relief to you, even if you would prefer your child be perfectly healthy it's got to be better knowing there is something going on.
Posted by: ginger234

Re: His doc is shocked. - 07/14/11 08:46 PM

Originally Posted By: JustAMom
After ambulatory EEG testing, it was evident that he has complex partial seizures in his frontal lobe during his sleeping and waking phase.

He may or may not have ADHD and his neuro thought he may have had this type of activity for a while and may be a lifelong condition. His neuro was a bit surprised as he thought while he the EEG would probably report normal activity because he was already on a maintenance dosage of keppra.

I think the next step is to manage the seizures before they start to address attention issues.

So his body is most likely not getting the restoration it needs if he is seizing while asleep. A layman's view, but I know how difficult it is to function when your body is not rested despite having slept. I hope the neuro will be able to find another med or adjust the dosage he is on to manage his seizures. I cannot begin to express the relief I felt when I at last began to get the rest I needed.

Continued blessings to you & your son.
Posted by: chris1234

Re: His doc is shocked. - 07/15/11 03:59 AM

Justamom ---
good for you and your son for continuing to look for the REAL answers, it's so easy to just give up on a kid who is having issues, especially when you think, hey they're an adult now! Very impressive MOM work.
There is a woman at my work, her step son failed his last quarter of classes as a Sr., is in peril of loosing scholarships etc., because he has alcohol and likely depression issues -- the dad refuses to get him counseling or other treatment. The kid is just falling apart and the dad assumes he just needs to 'pull himself together'.
Pretty off the track story, but the idea of sticking with your child is a big issue for me, not accepting a diagnosis of 'laziness' or 'immaturity' means being willing to do a lot of hard work for your kid, but it can be so gratifying to find the RIGHT answers. Best of luck to your family in moving forward from here!
Posted by: Austin

Re: His doc is shocked. - 07/15/11 08:46 AM

Originally Posted By: chris1234
Justamom ---
There is a woman at my work, her step son failed his last quarter of classes as a Sr., is in peril of loosing scholarships etc., because he has alcohol and likely depression issues -- the dad refuses to get him counseling or other treatment. The kid is just falling apart and the dad assumes he just needs to 'pull himself together'.


BIG MISTAKE.

A very good friend's son had a lot of issues when he got to HS. They tried a lot of things then they finally went for professional help.

The kid was put on a low dose of meds and had some behavior modification therapy in his Soph Year. His Sr year he was class president, got straight A's, captain of the football team, ya ya da.

A huge switch!

If your car was missing or running bad, you'd take it in right?

A comment I heard from the dad was that the psych said these problems tend to run in families and the same thing the kid suffers from often makes the parents not bring him in. The dad has been examining his life as a result, too.

Like on here, examining your kids help you to behold yourself...
Posted by: Nik

Re: His doc is shocked. - 07/17/11 05:11 PM

Originally Posted By: JustAMom
We're getting closer to resolving his issues....

After ambulatory EEG testing, it was evident that he has complex partial seizures in his frontal lobe during his sleeping and waking phase.

He may or may not have ADHD and his neuro thought he may have had this type of activity for a while and may be a lifelong condition. His neuro was a bit surprised as he thought while he the EEG would probably report normal activity because he was already on a maintenance dosage of keppra.

I think the next step is to manage the seizures before they start to address attention issues.


Wow! I am so glad for you that you have something concrete to work with, but at the same time, how frightening it sounds.

How do you recognize a complex partial seizure? My DD has experienced occasional "fainting" or "almost fainting" spells where she is able to lay down and avoid a complete black out or a fall, but I wonder if there is a connection to that and the sleep issues and the ADD symptoms. She also mentioned something strange that happens when she is in a car where the light shining through trees or roadside structures creates a strobe effect: she has to close her eyes and is afraid of pain or dire consequences if she opens them. Would I be MSBP if I asked her doctor to evaluate her for the possibility of seizures?
Posted by: aculady

Re: His doc is shocked. - 07/17/11 07:08 PM

I think that you would be totally reasonable and prudent to ask about the possibility of seizures, or at least to bring up the symptoms with her doctor and ask what might be causing them - seizures, migraine, problems with blood pressure, inner ear problems,etc.
Posted by: JustAMom

Re: His doc is shocked. - 07/27/11 03:01 PM

Originally Posted By: Nik
How do you recognize a complex partial seizure?


I have been asking myself this when my son's neuro told me his findings. While chatting with other teen parents who's children were diagnosed with CPS... it seems as though a number of neuro disorders were suspected until a seizure was captured on an EEG. I've learned this can be very difficult to do. The inconsistency of symptoms also seemed to make my son's psychiatrist doubt his original diagnosis but couldn't quite put his finger on what it could be. His pdoc is very experienced and accomplished for treating adolescent ADHD so we were puzzled why his treatment would work one week and fail the next.

Part of me is looking hindsight at all the other dianosis and doc notes from the time he was an infant. The thought of the possibility that he may have had this since infancy makes me venture into the 'What ifs" Why didn't his pediatrician, psychiatrist, school professionals, and I miss this... as it seems we all kept blaming the each other for his issues.

His neuro says this type of seizure would often leave the person completely unaware of them. I once tutored a student who had epilepsy in reading and he would have staring spells in mid paragraph. When i brought it to his attention, he looked puzzled as if I had made them up. This would continue after he read a few sentences. I know the nurse video taped the episode so they could show his neuro and it help in changing meds/dossage.

I'm still fustrated and sad but I know it is what it is. He will have to take medication for the next 5 years and if he doesn't have another seizure, it is considered in remission. Transportation, on the other hand, is a bit tricky figuring out when it is a good safe time for him to drive independently.

Thanks everyone for sharing your thoughts here. It really helped me feel a bit confident in my thinking as I had many of the same ideas and it gave me a few leads as where to look.
Posted by: Nik

Re: His doc is shocked. - 07/27/11 05:07 PM

Originally Posted By: JustAMom
Originally Posted By: Nik
How do you recognize a complex partial seizure?


I have been asking myself this when my son's neuro told me his findings. While chatting with other teen parents who's children were diagnosed with CPS... it seems as though a number of neuro disorders were suspected until a seizure was captured on an EEG. I've learned this can be very difficult to do.


It seems ambulatory eeg would be fairly easy to do and far less problematic than all sorts of medicine trials, I wonder why that isn't done more? Maybe it's expensive?


Originally Posted By: JustAMom
The inconsistency of symptoms also seemed to make my son's psychiatrist doubt his original diagnosis but couldn't quite put his finger on what it could be. His pdoc is very experienced and accomplished for treating adolescent ADHD so we were puzzled why his treatment would work one week and fail the next.

Part of me is looking hindsight at all the other dianosis and doc notes from the time he was an infant. The thought of the possibility that he may have had this since infancy makes me venture into the 'What ifs" Why didn't his pediatrician, psychiatrist, school professionals, and I miss this... as it seems we all kept blaming the each other for his issues.


I went through this too, and it's so not worth the emotional drain, we all did the best we could. I read a quote I liked today from Anne Lamont:

"Forgiveness is giving up all hope of having had a better past."



Originally Posted By: JustAMom
His neuro says this type of seizure would often leave the person completely unaware of them. I once tutored a student who had epilepsy in reading and he would have staring spells in mid paragraph. When i brought it to his attention, he looked puzzled as if I had made them up. This would continue after he read a few sentences. I know the nurse video taped the episode so they could show his neuro and it help in changing meds/dossage.


oh wow, my DD has those mid sentence staring spells but they are very brief and I only notice them when I am mid-sentence lecturing her lol, I think it's just her way of tuning out to send me a message but I'll have to keep a closer watch now.


Originally Posted By: JustAMom
I'm still frustrated and sad but I know it is what it is. He will have to take medication for the next 5 years and if he doesn't have another seizure, it is considered in remission. Transportation, on the other hand, is a bit tricky figuring out when it is a good safe time for him to drive independently.


Oh, that is a dilemma. Will the meds "cure" the seizures permanently at some point? Do they understand what causes them in the first place?

Best of luck going forward, I am happy for you and you son to finally know what is going on so you can focus on the right path going forward, I will keep you in my thoughts and prayers, thanks for sharing all of this.
Posted by: JustAMom

Re: His doc is shocked. - 07/28/11 04:45 AM

Originally Posted By: Nik
oh wow, my DD has those mid sentence staring spells but they are very brief and I only notice them when I am mid-sentence lecturing her lol, I think it's just her way of tuning out to send me a message but I'll have to keep a closer watch now.


.


grin I usually stop talking and stare disappointedly if my boys look like they are rolling their eyes and repeat from the beginning.

The staring spells for this guy appeared after he read a few sentences. One of the strategies we were working on are ways to go back to where you remember you last read and he would go back to the beginning of the paragraph again almost insisting he didn't read past the first word. There was a swaying movement that looked like he was going to pass out but when I asked if he felt dizzy afterwards, I would get a puzzled look and asked why I would ask him that. After my son's seizure, I read there was such a thing as reading induced seizures.

I really enjoyed your quote from Anne Lamont. Thank you.
Posted by: Nik

Re: His doc is shocked. - 07/29/11 06:22 AM

Hmm, I had a talk with my DD about this and she was surprised that it isn't normal, she thought it was something that happens to everyone. She said she is aware when these spells are happening and describes them as a temporary "pause" like a sudden onset of fog that lasts about 15 seconds, she usually shakes her head after it happens and apologizes which makes it seem more theatrical. I'm definitely going to mention this to her doc.
Posted by: Nik

Re: His doc is shocked. - 07/31/11 08:50 AM

Justamom, please update us when things settle down. I am very interested to know whether the ADHD issues go away with the seizure meds (i.e. if the seizures were preventing proper sleep and also causing episodes of inattention).

From what I understand, if there is ASD in the mix, there is likely a much lower threshold for reaction to medications and a higher tendency towards stress and anxiety (even if they don't realize they are suffering from stress) which sound like a common trigger for the seizures.

My DD is pretty happy with her ADD meds and they seem to be helping with her sleep schedule a bit too, so I would hate to make changes at this point. But now we are both quite certain she has been having simple partial seizures all this time and I am wondering what to do with this knowledge.

I did a web search on complex partial seizures which led to descriptions of different types of seizures, one in particular "psychic seizure" she says describes perfectly all of the mystery symptoms she has been experiencing for years (other than out of body experiences):

>These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).

I read that seizure episodes often just go away by the age of 20 so I am thinking she may be better off staying on the ADD meds for now and just keeping a journal on the seizures to see if she can find any pattern of triggers.

I found an epilepsy forum where someone posted a link to the different states laws on mandatory reporting and driving restrictions but now I cant seem to find it again. If I do, I'll post it.

Please keep in touch here or by PM, I really want to know how things work out moving forward. Is your son going to college this fall?

Sorry this is jumping around so much, I am still trying to digest and sort all of this new information.
Posted by: JustAMom

Re: His doc is shocked. - 08/01/11 12:24 AM

Hi Nik,
It's a strange relieved feeling when I read posts of parents who's child has epilepsy and the other issues my son has. I suppose the coincidence is quite small if not extremely minute. There is still some hesitency from his psychiatrist and psychologist because it may be unfamiliar territory for them. Also, son's neuro is an excellent experienced doctor however, I'm still wondering if I should persue an epidemiologist who has expertise in autistic gifted patients. Insurance can be so difficult to convince when the person I speak to does not have the slightest clue what Asperger, epilepsy, and inconsistant brilliance has nothing to do with poor behavior choices.

The steps my son is taking is to first control his seizures. His doc increased his keppra and scheduled another eeg in 3 months. His brother and I notice this increase has made him irritable, impulsive, and argumentative. Hopefully in a couple of weeks, his body will get used to the new dossage and most of these negative symptoms will disappear. I thought after a month of taking keppra the first time, the side affects subsided, he became more thoughtful and able to focus more on his tasks. He was also able to rethink his angry approach and try another effective menthod of getting others to cooperate with him. This was something he didn't do in the past. He also became less tongue tied and articulated his words more clearly.

Sometimes, I can see where my son may have a 'psychic seizure' because this was where the inconsistancy of his ADHD dx occured. Sometimes he felt he didn't need his adhd meds and other times he thought he did because he can't think or get the words right. Right now he doesn't want anything to do with ADHD meds and his doc warned him about staying away from caffinated drinks. I'm glad he made up his mind and followed through with this for the past few months.

As far as school this fall, I had him enroll in a community college near our home so transportation wouldn't be too much of an issue and the courses would also help in determining how the meds are working. I wanted him to work on managing his academic habits and determine what is in his control and what isn't. The most fustrating part of all of this is.... the doctors don't really know either. His neuro says because the seizures originate in the frontal lobes where the executive functioning is...we can hope the keppra will take care of the adhd issues especially be allowing him to have more quality sleeping (time when most of seizure activity occur). I thought about asking my son's pdoc to write a letter to his college that would allow him the same type of adhd accomodations he has had last year. It allows him extra time on projects and tests 'as needed'. He usually tells his teacher where he is on his assignment, what issue he is having and reasonable time he estimates he will have it completed.

Have you spoken to a neurologist yet? I think the journal is a good idea. I write my observations down as well as sleep schedule.... he won't jot things down however, his texting log is very telling.

Posted by: Nik

Re: His doc is shocked. - 08/02/11 07:31 AM

Originally Posted By: JustAMom
Hi Nik,
It's a strange relieved feeling when I read posts of parents who's child has epilepsy and the other issues my son has. I suppose the coincidence is quite small if not extremely minute.


It is a very strange sort of relief indeed, My DD seems so thrilled to have discovered an explanation that really fits her and what she has been experiencing - especially the de-realization. She has taken it upon herself to do research and read up on this, including finding ways to help control it. She said one method was to squeeze ones fists hard at the onset and focus every bit of attention on one thing or thought as soon as you feel an "episode" start. Kind of like Harry Potter fighting Voldemort from invading his mind lol. While in the back of my mind I am thinking "what if it's a tumor?". frown


Originally Posted By: JustAMom
There is still some hesitency from his psychiatrist and psychologist because it may be unfamiliar territory for them. Also, son's neuro is an excellent experienced doctor however, I'm still wondering if I should persue an epidemiologist who has expertise in autistic gifted patients. Insurance can be so difficult to convince when the person I speak to does not have the slightest clue what Asperger, epilepsy, and inconsistent brilliance has nothing to do with poor behavior choices.


From what I have read, there seems to be little solid understanding or agreement among the medical professionals on causes or treatment, so I am hesitant to even try to get an official diagnosis. For now, I am hoping my DD will become an excellent detective to see if she can find triggers and coping mechanisms, now that she knows what is going on, she is in a better position to really examine it. I told her to keep a journal of each "episode" and everything that was going on when it happened, how long it lasted and maybe what she had eaten for the previous few days...She laughed and said she would never be able to stop writing since they happen at least daily...:(

Originally Posted By: JustAMom
The steps my son is taking is to first control his seizures. His doc increased his keppra and scheduled another eeg in 3 months. His brother and I notice this increase has made him irritable, impulsive, and argumentative. Hopefully in a couple of weeks, his body will get used to the new dossage and most of these negative symptoms will disappear. I thought after a month of taking keppra the first time, the side affects subsided, he became more thoughtful and able to focus more on his tasks. He was also able to rethink his angry approach and try another effective menthod of getting others to cooperate with him. This was something he didn't do in the past. He also became less tongue tied and articulated his words more clearly.


I really hope this works, I want to hear if the negative side effects do go away after a month as I have read alot of bad stuff about the anger and outbursts that come with Keppra but no one mentioned how long they had been taking it so maybe the people posting just quit taking it before they adjusted to it?

Originally Posted By: JustAMom
Sometimes, I can see where my son may have a 'psychic seizure' because this was where the inconsistancy of his ADHD dx occured. Sometimes he felt he didn't need his adhd meds and other times he thought he did because he can't think or get the words right. Right now he doesn't want anything to do with ADHD meds and his doc warned him about staying away from caffinated drinks. I'm glad he made up his mind and followed through with this for the past few months.


My DD said she feels much more able to think straight in general on the ADD meds but she doesn't think there is a difference in the frequency or intensity of the "psychic seizure episodes" on or off the ADD meds so???

I am curious now about the ADD diagnoses, I can see how many of the checklists and survey responses could have been actually due to the Psychic Seizure episodes rather than ADD but I wonder about the actual IQ test and weather the big spread between VCI and WMI/Processing speed still indicates ADHD regardless of whatever else may be going on (she doesnt remember having an episode during the testing).

We have also been weaning off the caffeinated sodas, switching to Hansen's natural sodas (which still have way too much sugar, but no benzoate so it's a step in the right direction). I have been reading that stress is the number one trigger and that working towards a healthier lifestyle is the best non-medicinal treatment to reduce episodes. Regular exercise, healthier diet and proper hydration...None of this could hurt so that's our first plan of action. I also suspect that because the the AS brings a lower tolerance for stress (higher levels of anxiety), this may be excessively triggering the episodes. It seems that this is one area where they could use their intellect to actively reduce stress or talk themselves out of the stress if they learn to actually recognize when they are feeling it. I read that for some people having an episode in a particular place can cause that place to become a trigger in the future...I am wondering now if my angry/disappointed voice has become a trigger since she seems to "check out" so often when I am talking to her about something she did wrong...Hmmmm, maybe I'll try a new happy voice for the next time she's in trouble...

Originally Posted By: JustAMom
As far as school this fall, I had him enroll in a community college near our home so transportation wouldn't be too much of an issue and the courses would also help in determining how the meds are working. I wanted him to work on managing his academic habits and determine what is in his control and what isn't. The most fustrating part of all of this is.... the doctors don't really know either.


That is a great idea for testing out performance improvements on the meds. Does he have friends going to the CC too? We tried the CC route before we had any AS or ADD diagnosis as I thought back then that my DD was just bored with HS classes (I still believe that is/was part of the problem) but she found the CC classes equally uninspiring and her performance was about the same. I wonder if it would have been better if she had already had the ADD dx and meds. Another element my DD was dealing with was depression and isolation due to lack of intellectual peers, that did not get better at the CC.

Originally Posted By: JustAMom
His neuro says because the seizures originate in the frontal lobes where the executive functioning is...we can hope the keppra will take care of the adhd issues especially be allowing him to have more quality sleeping (time when most of seizure activity occur).


I am most interested to hear the results on this, I do think lack of quality sleep is the strongest contributing factor to all of the difficulties. I think if I ever get good insurance or an influx of cash, I would like to have my DD get a sleep study done, I think that could shed a lot of light on things. We have a family history of sleep apnea and she stopped breathing in her sleep regularly as an infant (I spent many hours watching her with a mirror to her nose to see if there was any breath - scary times). I imagine a sleep study should reveal seizure activity as well as sleep apnea?


Originally Posted By: JustAMom
I thought about asking my son's pdoc to write a letter to his college that would allow him the same type of adhd accomodations he has had last year. It allows him extra time on projects and tests 'as needed'. He usually tells his teacher where he is on his assignment, what issue he is having and reasonable time he estimates he will have it completed.


I would definitely talk to the disabilities office at the CC about his situation ahead of time. My DD has no concept of time so estimating how much time she needs isn't a possibility for her. IF assignments get done, its hours till the deadline and the ink is still wet when its turned in (and that's IF she remembers the deadline). Now she has told me that she did actually know about deadlines she missed previously but didn't want to (couldn't) do the projects because of the writing involved, so she used not knowing the deadline as an excuse. We are still trying to get to the bottom of the writing hang-ups (which is actually what started my whole quest for answers in the first place). I don't know what kind of accommodations would help my DD since she seems to do well on timed tests (beyond writing) and I understand that the college she is going to does not have tests anyway. I am afraid that extended time for papers may just mean that much more procrastination as the few papers my DD has written seem to have been accomplished fairly quickly in one sitting on the morning of a deadline. I am encouraging her to talk to the counselor as soon as she gets there and describe what she has been struggling with and maybe ask for advice i.e. if she has an episode in class and spaces out, maybe she could have a study buddy who will fill her in afterward and if her teachers know this happens ahead of time they may be less inclined to think she is just behaving badly or disinterested.

Originally Posted By: JustAMom
Have you spoken to a neurologist yet? I think the journal is a good idea. I write my observations down as well as sleep schedule.... he won't jot things down however, his texting log is very telling.



No, we don't have insurance right now (beyond a high deductible catastrophe plan). We also don't have time for a new medicine trial, since she leaves for college in a few weeks. I think my DD is doing much better than she did in the past now that she is more self-aware and with the methylphenidate and melatonin she seems to be handling herself. My DD hasnt agreed to a journal but I am keeping notes and I think I can talk her into keeping a tally log at least so we can track the frequency. What is a texting log?

We are about to go on vacation and will probably totally mess up whatever circadian rhythm may have been established over the summer with the time change! Ahh well, gotta enjoy life...maybe we'll discover she was just meant to live in a different time zone ;-)
Posted by: LinCO

Re: His doc is shocked. - 08/03/11 06:14 AM

My SIL was diagnosed with a seizure disorder in her early 30s, had to deal with not driving for some time but is now completing her doctorate in psychology in her 50s. College did take a long time, but the epilepsy seems to have been a blessing. She'd still be waiting tables! She recently wrote her state's law regarding suicide prevention.

Posted by: JustAMom

Re: His doc is shocked. - 10/18/21 04:06 PM

I thought I would update what progress my son has made. He is nearly 30 and he is a successful system developer. It was officially determined to be on the spectrum and Lamictal, last I heard, seemed to be the best meds.
He is a different person while on Lamictal. He is less agitated and he is able to pick up social cues much easier and able to respond to it appropriately.
As an adult, he is happy and able to find colleagues he feels comfortable being around. If it wasn't for this forum, I would have been lost about receiving help with the struggles he faced in his school career.
Posted by: aeh

Re: His doc is shocked. - 10/20/21 01:45 PM

Thanks for coming back with an update! I wasn't even on these boards at the time, but I'm always happy to hear a success story. smile