#149 Triplet L

"I included all three triplets [C, L and M] here because they all see the starbursts around lights, I am not sure about other visual symptoms for L [subject #149] (he has a diagnosis of autism) and M [subject #150] (she has a diagnosis of autism, ADHD, Anxiety-NOS, lazy eye, astigmatism in both eyes), they are not as verbal as C [subject #148] but they all drew the starbursts for me and they are all different number of lines extending from the light so I believe they are all really seeing them."

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, July 12, 2006; additions in square brackets by Klaus Podoll)

"When I realized that the starbursts I was seeing were not 'normal' I started asking people if they see starbursts, and asked the children if they see them. Everyone except my children said no. This was at about 3 yrs old. I drew pictures of headlights we were looking at with 4 lines coming from them and asked if they see this, they each drew more lines, each was a different number of lines."

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, July 13, 2006; additions in square brackets by Klaus Podoll)

L [subject #149], Headlights of car at night, 2006. © 2006 Wendi Triplet Mom (larger image see here)

"I got 2 of the triplets [L (subject #149) and M (subject #150)] to draw what they see when they are looking at lights, still trying for the third one. I'd like to scan them and send them to you, as requested. It is strange because L's drawing is very different than what he drew for me in the past, he does not seem to see the starbursts anymore."

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, October 18, 2006; additions in square brackets by Klaus Podoll)

"BTW there was snow on the TV last night and I asked my 3 kids if they can see the little black and white dots blinking on the TV. They said yes.

I asked them to look around the room and tell me if they see it anywhere else. They all said no. I asked if they could TRY to see it anywhere else. They all said they could only see it on the TV."

(Wendi Triplet Mom [subject #147], Ezboard forum Visual snow or static - Discussion - VS in dreams, June 12, 2007)

"My son [subject #149] keeps his light on all night because he is terrified of the dark, so that helps me be able to see in my room and the hallway, too."

(Wendi Triplet Mom [subject #147], Yuku forum Visual snow or static - Discussion - Do we all struggle to see in the Dark?, January 15, 2008; additions in square rackets by Klaus Podoll)

"I know migraine aura can be auditory. Can it be without a headache? Can it be the same thing, like a person's name, over and over several times a day, and even wake the person up at night?

My son [subject #149] (almost 8 yrs) has been having daily headaches the past few months and we are waiting for a neurologist appt. His CT came out clean. They don't seem to be migraines they are right in the middle of his forehead, but you never know... there are so many variations.

The headaches stopped 2 days ago (May 1, 2008) and at the same time, he started hearing 'a scary, invisible alien whispering his name in both ears at the same time'.

Yesterday 50 times (May 2, 2008), today he said it was more like 10 times (May 3, 2008).

At first he thought it was someone in his class playing a joke, but every time he heard it he spun around to see who it was and there was nobody there, so he realized it was not anyone teasing him.

I was with him a few times when he heard it... there is nobody saying his name.

Mostly this is happening at school, but while we were just at the pediatrician a few minutes ago he told her that it woke him up during the night last night a few times.

The pediatrician says maybe it is PANDAS [Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections], but I know what PANDAS is... it is strep related OCD and tics. This is mandatory for PANDAS diagnosis. He just finished a course of antibiotics yesterday for a really bad strep infection, but his OCD symptoms are no worse than ever and he has not developed any tics. He is autistic, very mildly so but not Asperger's, and has a lot of problems with anxiety, but the anxiety only worsens when he is actually hearing the voice, not all the time. He also has Central Auditory Processing Disorder, and I was thinking maybe he is hearing something and processing it as his name... but the times I was there I did not hear the same noise every time he heard the voice.

Anyway... sorry to go off on a tangent... but I just was wondering if this could be migraine aura even though the headache WENT AWAY at almost the same time the voice started."

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, May 3, 2008; additions in square brackets by Klaus Podoll)

According to Lippman and Lippman (1952), "An astonishingly large number of these people [i.e. migrainoids] report that in childhood they often heard a 'distant voice calling them by name.' Some thought it was their mother's voice; others simply heard 'a voice.'" (p. 41) The occurrence of verbal hallucinations (hearing of voices) has been confirmed as a migraine aura symptom in children by Schreier (1998) and Rubin et al. (2002).

"He cannot identify the voice. He has changed his description to 'an alien' (like from space), and the reason is that it 'does not sound human'. One of L's abilities is to be able to reproduce ANY sound he hears very close to the orginal... well up to this point anyway. He cannot reproduce this voice that is calling his name.

I don't know if he had it yesterday or last night. I have been told by the pediatrician and the psychologist NOT to ask him about it.

Problem is, he won't volunteer information unless he is terrified, and already he is 'used to' this voice calling his name. For example, he didn't tell anyone it was waking him up in the middle of the night until the pediatrician asked him about the voice, even though I have reminded him every time he talks about it that he should tell me whenever he hears it."

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, May 5, 2008; additions in square brackets by Klaus Podoll)

"He hears exactly the same voice every time, always just saying his name with the vowel drawn out (when he tries to reproduce it, his one-syllable name takes about 4 seconds to say). In fact, he knew that his sister was playing games teasing him because it was different. (That has since been rectified! Nobody at my will be teasing him about this again!)

The voice is 'whispered into both ears at the same time'. This seems like, to him, the strangest part of it... because when someone whispers into your ear it is loud in one ear, not the same in both like this is. It confuses him how someone could be whispering right into both ears at the same time.

I think the reason his description changed from 'an invisible person' to 'an invisible alien'... not only is the voice like nothing he has ever heard before, but people cannot whisper into both ears at the same time.

About asking him... I was trying to avoid reinforcing the headaches by not asking him in case he was trying to get out of school (he does lie to get out of school sometimes). I found out MONTHS later that the headaches were still happening every day! He does NOT volunteer information easily, even about things that hurt. A sudden pain, yes he will, but if something becomes 'normal' like daily headaches, he will not tell me he has it.

The headaches started before Christmas 2007. I am not sure exactly when, but maybe the beginning of December 2007, could have been mid to late November 2007. They happen almost every day, usually starting in the evening and getting worse at night and sometimes they suddenly get really bad while he is sleeping and wake him up. Sometimes they are bad enough to require Tylenol to sleep, and he will want to go to sleep before his sisters. A few times he needed Tylenol to be able to go to school in the morning, but they are usually gone by the time he wakes up. The ones that require tylenol are usually the only ones he tells me about. I don't think the headaches are being used to avoid school because he did not fight me about going to school once he took the Tylenol.

Then, one day during a bad one, he got really frustrated and asked me why he has to have these headaches every single day. That's when I found out he was still having them every day.

I thought they had gone away after the round of antibiotics he was on in December 2007 because he stopped complaining about them. WHILE he was on the antibiotics in December 2007, they did go away. Then he mentioned them again during another bout of strep... again they went away during the antibiotic treatment and he did not complain of them again. So I was thinking this was related to illness, not something chronic.

During this last round of antibiotics (10 day course which ended 4/30/08), they did not go away at all and the CT showed no sinus problems (which was taken during the antibiotic course).

They are right in the middle of his forehead. I will get you his CT report when I can get to the pediatrician (which I'm sure will be soon with three 7 yr olds!).

We have an appt with a neurologist June 12th, 2008.

He also has been reporting seeing spots (actually he says he remembers seeing them since Kindergarten, which was 2 years ago), and I am trying to determine what these are. After some investigation, I think they are afterimages of bright lights he is looking in to as an autistic 'stimulation'. I am still working on this to try to figure out what is going on. It is very difficult to get information from him sometimes.

Is that all the info you needed? I forget what else you asked."

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, May 5, 2008; additions in square brackets by Klaus Podoll)

"Yes, self-stimulation. People with autism usually do certain things to calm themselves - the most commonly known are flapping hands or rocking. He stares at lights quite often - always has literally since he was born. It is sort of self-hypnotism in a way and very calming, especially when sensory information is too overwhelming and the person needs to shut off the outside world for a while. As I was growing up I used to think the starbursts around lights and how they spin when I move my head were really cool and could just sort of rock my head back and forth while staring at a lightbulb for a long time. He used to see starbursts but the last time I asked him to draw a picture of a car's headlights he didn't see them anymore (see your page).

He just mentioned the spots to me this week I think the day before the voice began, but says he remembers them being there since he was on the bus in kindergarten (approx. 2 years ago). He says the number of spots changes, and at night he does not see any black spots, he only sees black ones outside. The brown and grey spots he sees all the time, in any lighting, he says. Some of his story sounds like scotoma and I was going to send you the picture he drew, but when he is home and tells me the spots are bothering him I noticed he was just staring at a light bulb.

I know from my own experience that if you are having increased after-images, an image of a light bulb can be multiple colors depending on how long your eye was in that particular position... and there can be many, many 'spots' of many different colors depending on how long the bulb was within the visual field and how often you move your eye... and these can last a very long time. If he is looking at light bulbs in every room, he could have 'spots' almost all the time!

The confusing part is outside, where there are no light bulbs... but then again they could be afterimages that are lasting a long time. He did ask me a few days ago if he would hurt his eyes by looking directly at the sun, and I am suspecting this might be what he was doing.

Yes, I am making an appt with the opthamologist, just in case!"

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, May 5, 2008; additions in square brackets by Klaus Podoll)

"L had a severe headache on Wednesday, the 28th of May. After he recovered, the spots and voices were gone.

The thing complicating this is... he also had strep for the 3rd time in a row (finished a round of penicillian on Monday the 26th, and symptoms of strep started showing up on the 29th - the morning following the headache) and had a shot of Bicillian on Thursday morning, the 29th. The strep was 'resistant' to amoxicillian and penicillian and would recur within a couple of days off the antibiotics.

The pediatrician and psychiatrist are both calling this PANDAS.

My gut is telling me both the spots and voices are PMA, especially since he had absolutely no other symptoms of PANDAS other than the strep... even his anxiety level was NOT higher except when he actually heard the voices they would scare him. His OCD symptoms that go along with the autism did not increase either. No tics.

I guess the only way we will find out which it was is if he gets them again without strep?"

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, June 6, 2008; additions in square brackets by Klaus Podoll)

"L has not had a headache since the 28th of May... Oh I did scan L's spot drawing but I haven't had time to resize it to post on the web yet."

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, June 8, 2008)

On May 1, 2008, the last day of a 5-month-period of daily chronic headache, triplet L (subject #149) got his 2nd episode of persistent aura with daily seeing "spots" and "dots" (which he had experienced earlier since ca. 2 years) and daily recurring verbal hallucinations, hearing an alien voice calling him by name. After the recovery of a severe migraine attack on May 28, 2008, both the voices and the spot were gone, indicating full remission of the 2nd episode of persistent aura after a duration of 28 days. Interestingly, the only other subject participating in the Sofia Greene survey who reported a termination of an episode of persistent aura with a headache was L's mother, Wendi Triplet Mom (subject #147). "Over the past week and a half I started noticing an increase in floater 'activity'", she described her 4th episode of persistent aura of ca. 10 days duration, "and today I've had a killer left side migraine for the past 6 hours. Strange thing is once the pain started, the floaters [illustrated in the figure here] disappeared completely."

L's pediatrician and psychiatrist attribute the symptoms of his 3rd episode of persistent aura to PANDAS, i.e. Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. According to the information provided on the PANDAD website, "The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as 'Strep throat' and Scarlet Fever. The children usually have dramatic, 'overnight' onset of symptoms, including motor or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody, irritable or show concerns about separating from parents or loved ones. This abrupt onset is generally preceeded by a Strep. throat infection." (PANDAS website, June 7, 2008)

According to his mother's report, during the period of L's 3rd episode of persistent aura, L's "OCD symptoms [in autism] are no worse than ever and he has not developed any tics", i.e. L does not have an episodic course of OCD and/or tic symptom severity. PANDAS is only considered when there is a very close relationship between the abrupt onset or worsening or OCD and/or tics, and a preceding strep. infection. Thus, the diagnostic criteria of PANDAS, which is a clinical diagnosis, operationalized by 5 diagnostic criteria for the diagnosis of PANDAS (see here), are not fullfilled by L's illness.

"I think I am going to cancel the neurologist for this week, but keep the one scheduled for next month. I had made the second one first but it was too far in the future for my taste (with L having such frightening symptoms!) and so I made another appt with a different group of doctors and did not cancel the second one just in case I wanted a second opinion. The second one is the one that was recommended by the pediatrician, so I think I'm better off going with him.

Maybe by the end of July when we have the neurologist appt he will have another headache or aura episode.

I just feel really silly going to this appt and saying 'he had this but now it is gone' without giving it a little more time to see if it recurs. I have a feeling if I take him in now, the doctor will say 'come back in a month and we'll see how things are going'... this way we will have already done that.

Wow, really? Nobody else ever had persistent aura that ended with a headache? I'm really surprised! I have had so many things going on, you said I have had this, too? I don't remember a PMA that ended with a headache, only regular auras... but like I said I have had so many things happen it is possible I reported something while it was happening and just don't remember.

I have a feeling L's spots have not be consistent over the years. He says he first saw the spots on the bus to kindergarten (5 yrs old) but he has never reported them [again] to me before this episode."

(Wendi Triplet Mom [subject #147], Email to Klaus Podoll, June 9, 2008)

L [subject #149], Spots/dots, 2008. © 2008 Wendi Triplet Mom

"K, the image of my son's spots is up on my images page in Yuku. He was looking at the reddish/purple spot in the middle of the paper when he drew what he sees around that spot.

For all those who don't know (meaning everyone except K lol)... my son (7 at the time, now he is 8 yrs old) reported seeing these spots to me one day in May, but told me he had been seeing them for about 2 or 3 years. I think he did not see them constantly for all those years based on a few things he has said about them, and I do think they are an aura. He had been having daily headaches for a few months and the spots disappeared with a really severe headache one day and have not come back since. He had a very bad headache earlier this week and did not have the spots.

Wendi"

(Wendi Triplet Mom [subject #147], Yuku forum Visual snow or static - Discussion - My son's "spots" image, June 25, 2008)

References

Lippman CW, Lippman M. Understanding your migraine headache. Greenberg Publisher, New York 1952.
Rubin D, McAbee GN, Feldman-Winter LB. Auditory hallucinations associated with migraine. Headache 2002; 42: 646-648.
Schreier HA. Auditory hallucinations in nonpsychotic children with affective syndromes and migraines: report of 13 cases. J Child Neurol 1998; 13: 377-382.

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