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Source: (consider it)
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Thread: Children with special needs
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Lamb Chopped
Ship's kebab
# 5528
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Posted
I had the meeting. She suggests seeing a pediatric neurologist rather than the shrink the teacher and school counselor think is appropriate. Unfortunately the waiting list is months long, so we'll have to thole meanwhile. At least I have an idea of which specialty I need, which is helpful--and which simplifies the question of which insurance coverage I'll need too.
At this point there seems nothing to do but wait and pray. A special ed evaluation is in the works and I hope they know their stuff, what with that pair attempting to shove the situation in the direction of an autism diagnosis. Why they're so set on it I don't know, I'm not aware of any funding benefit to the school.
If he's got to be diagnosed with something official and medical, let it be the RIGHT diagnosis. Not the convenient or trendy one.
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Taliesin
Shipmate
# 14017
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Posted
quote:
Originally posted by Doublethink:
I think that would have been picked up by the opthalmologist.
Dyspraxia is a developmental disorder, it is more likely to be evident when the child is a little older - so it doesn't surprise me it wasn't picked up earlier. It just may not have been diagnosable at that point.
And, a headteacher said dismissively to a parent, 'Dyspraxia doesn't exist, it's just a fashionable word for being clumsy.'
Posts: 2138 | From: South, UK | Registered: Aug 2008
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Ruudy:
The only frustrating part right now is that we have to go have all this testing done and wait for two months before our next appointment. I want to get on with this and not wait around. I have to pray for patience and know that we are getting on with some interventions like OT and SL therapy.
Getting all the diagnostic stuff done can take many, many months. Sometimes a few years. Part of it is luck -- who you happen to see, what they happen to notice, what you tell them. Sometimes things that have become "normal" for you are really Big Red Flashing Warning Signs, but you don't know that, so you don't mention them.
Patience is absolutely required. And a thick skin. And lots and lots of prayers.
Which I am offering now for your family and for Lamb Chopped's family.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Qestia
Marshwiggle
# 717
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Posted
quote:
Originally posted by Lamb Chopped:
I had the meeting. She suggests seeing a pediatric neurologist rather than the shrink the teacher and school counselor think is appropriate. Unfortunately the waiting list is months long, so we'll have to thole meanwhile. At least I have an idea of which specialty I need, which is helpful--and which simplifies the question of which insurance coverage I'll need too.
At this point there seems nothing to do but wait and pray. A special ed evaluation is in the works and I hope they know their stuff, what with that pair attempting to shove the situation in the direction of an autism diagnosis. Why they're so set on it I don't know, I'm not aware of any funding benefit to the school.
If he's got to be diagnosed with something official and medical, let it be the RIGHT diagnosis. Not the convenient or trendy one.
I hope the fact you're on the waiting list gets the school off your back, at least. My son's diagnosis came from a very comprehensive testing at a developmental medicine center at a children's hospital. It was done by a team of a psychiatrist and a developmental pediatrician, so they looked at medical things, as well as doing behavioral screenings and extensive cognitive testing (IQ etc.). This could well work to your advantage--there's a lot of research out there showing that these quirks can just be a result of intellectual giftedness, rather than some disorder.
My son does sound similar in many ways. He's very smart, but struggles with negotiating the playground, falls out of his chair, "hoots." We're actually having a good fall with him. In addition to the speech therapy and occupational therapy he receives at school we are doing private OT, a private social skills group, and karate twice a week (and omega-3 vitamins). It's costing a lot of time and money but we've seen a lot of improvement from the summer. I've also been working with the school to make sure he has what he needs in class--fidget items, something to chew on, special cushions for the chair.
Some of these things might help your son, too.
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I’m on Aslan’s side even if there isn’t an Aslan to lead it.
I’m going to live as like a Narnian as I can even if there isn’t any Narnia.
Posts: 1213 | From: Boston | Registered: Jul 2001
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Sounds lovely! I hope we can find some resources here. (another minor frustration--the school has piled on so much homework this year that I am shaking my head in disbelief. My kid gets to eat dinner and that's basically it. The rest of the afternoon and evening (till an hour after bedtime!) it's homework, homework, homework. When exactly do they expect us to fit in these hypothetical social skills classes that may or may not exist?
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Josephine
Orthodox Belle
# 3899
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Posted
Lamb Chopped, when the school qualifies the little lamb for an IEP, you explain to them that, because of his medical needs, he has to have time for therapy, and he has to have time to rest. Therefore, his homework time must be limited to no more than X minutes per evening. Then you smile sweetly and ask them how they can best accommodate that? And then you wait.
And if they start to insist that homework is necessary, you repeat that, for medical reasons, it really isn't possible for him to do more than X minutes per evening, and tell them you're grateful for their flexibility, and ask them what, in their experience, is the best way to accommodate such a need?
They can figure out something reasonable.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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3rdFooter
Shipmate
# 9751
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Posted
Josephine - That stratagem rings so true and it amazes me the circumstances where you have to use it.
When we emigrated back to this country where smallest footer had previously had a statutory statement*, the education authority wanted to put him in a mainstream school without support while they sorted their lives out.
I requested a letter absolving me from all responsibility from any health and safety issues to staff or other students from the cherub losing the plot and lashing out. Lo, and support became available.
*UK legalism entitling you to educational support
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3F - Shunter in the sidings of God's Kingdom
Posts: 602 | From: outskirts of Babylon | Registered: Jul 2005
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Jane R
Shipmate
# 331
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Posted
quote:
And, a headteacher said dismissively to a parent, 'Dyspraxia doesn't exist, it's just a fashionable word for being clumsy.'
Ours thinks that Little J's migraines are psychosomatic... ![[Mad]](angryfire.gif) Fortunately the class teacher is more sympathetic. Especially after we pointed out that when she's having an attack at home she bangs her head against the sofa cushions, so leaving her unsupervised in a darkened room at school is Probably Not A Good Idea.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Jane R:
Ours thinks that Little J's migraines are psychosomatic...
Can you get a letter from the doctor explaining that migraine is a chronic neurological disease that is associated with significant levels of disability, and occasionally even kills?
Our youngest has developed severe chronic migraines. He has two to three migraines a week; basically, as one migraine starts to resolve, the next one cranks up. It is completely incapacitating.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Jane R
Shipmate
# 331
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Posted
We've given them a doctor's letter, Josephine, but it just confirms the diagnosis of migraine without going into details. I am planning to do a letter about Little J's migraine symptoms, what causes it and how we are currently dealing with it (with footnotes and references) next week while we're having our half-term holiday. I don't have time to do it now as I'm catching up on work after three weeks of rolling migraines, rather like what you describe. And we've got another appointment with the specialist in November to see if the latest adjustment to her preventative medicine is working.
![[Votive]](graemlins/votive.gif) for you and Littlest One.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Amorya
Ship's tame galoot
# 2652
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Posted
quote:
Originally posted by Jane R:
Ours thinks that Little J's migraines are psychosomatic...
Even if they were psychosomatic, they'd still be real physical pain. People keep trying to use the word to mean "all in your mind", but it actually means a physical illness brought on by mental factors.
Posts: 2383 | From: Coventry | Registered: Apr 2002
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Jane R
Shipmate
# 331
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Posted
Indeed. I am intending to provide an explanation of what a pyschosomatic illness is as well.
One of the things that does concern me is that she is being expected to stay in class and work as best she can during an attack. I have pointed out to the school that if she is having an attack it may be impossible for her to concentrate on her work, but as she is in the top group for reading (reading age two years above her chronological age), her writing is brilliant and she is doing reasonably well in maths I am not sure they are taking me seriously.
All of this is going in writing, though, so they can't say they haven't been warned.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Boss went after me regarding "too many medical appointments" on Thursday; marched straight over to HR and told them my tale of woe, and now have FMLA papers to keep the in-DUH-vidual off my back. I suspect that what's bugging him at root is that he doesn't know what the medical problem IS, and is legally not entitled to know, but he damn well intends to know anyway; and I won't tell him. So he's pressuring me.
I believe HR told him to fuck off. I hope he does.
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Jane R:
One of the things that does concern me is that she is being expected to stay in class and work as best she can during an attack.
I was reading an article about caring for kids with migraine on a migraine support site, and they actually said that kids should be in school every day, migraine or no! I couldn't believe it. In addition to the headache and light and sound sensitivity, our boy has ataxia, dysphasia, and vertigo during his migraines. He can't be at school. He can barely function at home. ![[Frown]](frown.gif)
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Zacchaeus
Shipmate
# 14454
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Posted
That's ridiculous - I suffered from Migraine as a child and the only thing to help, was a darkened room and sleep. I might have stayed in school or class, but I was not functioning and learning.
I used to head bang at times too, it seemed to relieve the pain momentarily.
Has the teacher considered that she and her attitude, might be part of the psycosomatic (probably spelt wrongly) causes of the migraine?
Posts: 1905 | From: the back of beyond | Registered: Jan 2009
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Ruudy
Shipmate
# 3939
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Posted
For those of you with children who have had ticks, did the ticks ever just come and go? Or once there always there?
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Ruudy:
For those of you with children who have had ticks, did the ticks ever just come and go? Or once there always there?
One of ours had a throat-clearing tic for a while. It went away.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Ruudy
Shipmate
# 3939
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Posted
Tigger frequently blows air out of his nose. It's like he's blowing his nose but without putting a tissue to it. Normally not an issue, but this week he has a runny nose and the whole thing is unpleasantly messy.
On a possibly related note, the speech evaluator said one of his problems is that he channels as much airflow through his nose as his mouth which results in some of his speech "idiosyncrasies". The director of the speech and language evaluation gave some positive news: she had never before had a four-year old score 100% in the area of repeating grammatical structures. (I heard this second hand but am looking forward to a conversation with her this week).
On an unrelated note, Tigger said the EEG he had this week was "Great." I think he enjoyed getting to stay up to the early hours of the morning playing board games with Suusan and watching videos. Apparently we won't get an appointment to look at results anytime soon unless there is something urgently wrong. So that means - more waiting...
*mini-rant/whine* Why does it seem like every kid has to have their birthday at Monkey Joe's bouncy castle place?!? Tigger is persistent but just can't keep up. Crawling up to the top to slide down is a major accomplishment. The three year-olds zoom past him, or he causes a traffic jam. He seems happy for a while before tiring of it and just wanting to go home.*mini-rant/whine over* He did seem to genuinely enjoy it for a while, and I even wonder if we should go more frequently just the two of us when it's slow there so he can get the exercise and go at his own pace.
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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Boogie
Boogie on down!
# 13538
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Posted
My youngest son had a tic - a bit like a twisty yawn. the doctor told us to mention it every time he did it to get him out of it.
It worked!
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Garden. Room. Walk
Posts: 13030 | From: Boogie Wonderland | Registered: Mar 2008
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Lamb Chopped
Ship's kebab
# 5528
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Posted
... though this might be counterproductive in other cases. The tics that last the longest with my son are the ones people comment on (negatively). Stress i think.
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Boogie
Boogie on down!
# 13538
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Posted
We were advised to make no fuss and to be positive, just to remind him when he was doing it to help him stop. Like I said, it worked.
![[Smile]](smile.gif)
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Garden. Room. Walk
Posts: 13030 | From: Boogie Wonderland | Registered: Mar 2008
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Taliesin
Shipmate
# 14017
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Posted
thi is interesting actually. I have a kid at school who is distressed by his tics, and people have been trying to help him in all kinds of ways. One of these was to encourage him to substitute one kind of tic (spinning on the spot) for another kind that was more acceptable (apparently) like scratching his knee.
I felt uncomfortable about this though I couldn't have told you why, and now the kid is a smouldering ball of teenage resentment who isn't responding to anything - though obviously, there is more to it than just tic reassignment. I'm going to start working with him therapeutically next week... I'll feedback in very general terms how we get on.
Posts: 2138 | From: South, UK | Registered: Aug 2008
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Ruudy
Shipmate
# 3939
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Posted
Thank you, Josephine. Very helpful site. I particularly liked the chart of common tics.
[ 30. October 2012, 14:30: Message edited by: Ruudy ]
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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Ruudy
Shipmate
# 3939
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Posted
Okay.... MONOLOGUING. How do you deal with your children when they monologue?
Do you point it out? Do you feign interest? Do you keep reading your book but nod and say "mm, hmmh" every once in while? Do you interrupt? Do you interject that it is selfish and inconsiderate?
After forty minutes of facts about tigers without a single pause, do you say lovingly to your seven year old that you really couldn't give a $%^& about tigers? Or do you look them in the eye and say "Please stop talking."? What do you do when your other three young sons can't speak to you or each other and one of them becomes visibly distressed to the point of screaming?
Experience, strength, hope or resources anyone? Cause I'll take whatever I can get. I've googled this to death and am coming up empty handed.
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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Curiosity killed ...
Ship's Mug
# 11770
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Posted
That sounds very ASD. He needs the social skills to not get murdered in life so you need to teach him this will not get him friends and influence people.
How about giving him time to talk but limit it using an hour glass? Start with a script that says, "I'm so glad you like tigers, but people can't listen for very long, you can tell me about them for as long as this hour glass (well 2 minute timer) runs?"
Suggest that he produces a scrapbook folder about his enthusiasm and shows you at the end of the day - and tell him for good practice he needs to limit it to 5 minutes, otherwise you can't take in any more?
And at other times, remind him that he has his scrapbook and that his teddies would be good to practice his 5 minutes on, because they can listen for ever, but humans can't?
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Mugs - Keep the Ship afloat
Posts: 13794 | From: outiside the outer ring road | Registered: Aug 2006
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Jane R
Shipmate
# 331
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Posted
Monologuing, eh?
(I must admit, my first thought when I saw that word was 'Before I kill you, Mr Bond...')
Ahem. CK's ideas are all good. I am not an expert on this type of problem, but maybe if he struggles with allowing other people to take turns in conversations you could have a stuffed toy or a cap or something that the person whose turn it is to speak gets to hold/wear? "It's Jack's turn to speak; he's holding the elephant" Or would he think that was babyish? I've forgotten how old he is... playing boardgames might also help with learning turn-taking.
Little J is going back to the migraine clinic next week - we're not doing very well here, she had a migraine a day during the half-term holiday and has had four this week. I am sticking straws in my hair whilst trying to catch up on my work. How is Littlest One getting on, Josephine?
Posts: 3958 | From: Jorvik | Registered: May 2001
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Jane R
Shipmate
# 331
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Posted
Sorry, just noticed you said he was seven, so the stuffed toy idea may be a bit babyish. Not having a good day here... (wanders off to stick more straws in the hair)
[ 09. November 2012, 09:39: Message edited by: Jane R ]
Posts: 3958 | From: Jorvik | Registered: May 2001
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Curiosity killed ...
Ship's Mug
# 11770
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Posted
Jane R - has anyone said CFS/ME? Migraine like headaches can be a symptom. Normal migraines tend to give you a break between them, don't they? (Well, they do me)
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Mugs - Keep the Ship afloat
Posts: 13794 | From: outiside the outer ring road | Registered: Aug 2006
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mdijon
Shipmate
# 8520
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Posted
Some unlucky people certainly do get migraines every day though.
Migraines are indeed "all in the mind" in the same way that strokes and Parkinson's disease are.
I've noticed a funny tendency for people to have limited sympathy for children complaining of pain without a visible external illness. Perhaps because children often moan about inconsequential pain and we think good parenting is teaching them to ignore it. Unfortunately for children who are really suffering this is very counter-productive.
I hope something turns out to work at the clinic.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
Posts: 12277 | From: UK | Registered: Sep 2004
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Jane R
Shipmate
# 331
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Posted
(to CK) It's probably not CFS/ME. In between migraines she is perfectly normal - riding, swimming and dancing in her spare time and she's just talked me into volunteering as a dog-walker for the RSPCA so she can help me take dogs for walks. Doesn't sound like chronic fatigue to me. My mother gets migraines as well; hers used to last up to three days with added vomiting, so it could be worse.
(to mdijon) I think that may be part of the problem with the headteacher. Her class teacher isn't quite so unsympathetic, but she's leaving at the end of the term and who knows what will happen after that... and it's a big class, with lots of noisy boys in it, so the chances of a small girl who goes quiet when she's not well being overlooked are quite high.
Thanks for the sympathy, both of you.
[ 09. November 2012, 13:35: Message edited by: Jane R ]
Posts: 3958 | From: Jorvik | Registered: May 2001
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Nick Tamen
Ship's Wayfaring Fool
# 15164
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Posted
quote:
Originally posted by Ruudy:
Okay.... MONOLOGUING. How do you deal with your children when they monologue?
Ruudy, I like CK's ideas. They sound very much like what we tried and had success with. I would probably add to the script, when appropriate, directions for other cues that he needs to learn to look for: "I'd love to hear about it, but do you see that I'm reading this book/trying to help your sister get dressed/cooking/etc.? That's a signal that I can't give you my full attention right now." The go on with the timer plan.
The thing about kids with ASD is that they can learn (and need to learn) to pick up on all of these non-verbal cues. They just don't learn them at an early age by observation like most kids do; they need to be taught them.
The only other advice I can give is try to have a sense of humor about it. Believe me, I know it's hard some days, but I always found that when I could keep some sense of humor, my blood pressure was a lot better off.
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The first thing God says to Moses is, "Take off your shoes." We are on holy ground. Hard to believe, but the truest thing I know. — Anne Lamott
Posts: 2833 | From: On heaven-crammed earth | Registered: Sep 2009
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mdijon
Shipmate
# 8520
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Posted
quote:
Originally posted by Nick Tamen:
"I'd love to hear about it, but do you see that I'm reading this book/trying to help your sister get dressed/cooking/etc.? That's a signal that I can't give you my full attention right now."
I've heard a father patiently explaining to his child that he knows that tigers (or whatever) are really very interesting and good to talk about, but asking his child if they can see that his sister isn't ready for school... and that he needs to help her get ready... and so is it the best time to talk about tigers? How might we tell when the best time to talk about tigers is?
It looked like a very well-rehearsed talk to me. I expect it requires a lot of patience if you have to do it very often.
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mdijon nojidm uoɿıqɯ ɯqıɿou
ɯqıɿou uoɿıqɯ nojidm mdijon
Posts: 12277 | From: UK | Registered: Sep 2004
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Ruudy
Shipmate
# 3939
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Posted
quote:
Originally posted by Jane R:
Sorry, just noticed you said he was seven, so the stuffed toy idea may be a bit babyish. Not having a good day here... (wanders off to stick more straws in the hair)
He is seven but with three younger brothers. They have all recently taken to several stuffed toys. This is age appropriate for him right now. Thank you. Praying for you and Little J.
Thank you all for sharing. I really appreciate your insights and will try to incorporate them. My post above was intended to display a certain sense of humor about things. Reading it now, I can see my frustration coming through. While it may not sound like it, Suusan and I are patient parents but are wearing thin in some areas. Our misdirected efforts to remain patient may mean we not have given our son some direction he needs.
quote:
Originally posted by Nick Tamen:
The thing about kids with ASD is that they can learn (and need to learn) to pick up on all of these non-verbal cues. They just don't learn them at an early age by observation like most kids do; they need to be taught them.
I am encouraged to hear this.
Do any of you have books you would recommend that teach parents how to respond to ASD traits? One question I am wondering is whether we should name it to him. Is there any reason I should not just go ahead and call it "monologuing" and point it out to him? We have not hesitated to name other behaviors when they arose.
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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Curiosity killed ...
Ship's Mug
# 11770
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Posted
ASD resources:
Do 2 learn -this has a lot of activities to teach expressions and to read social cues, social stories - I think it might even be American (which is unusual for me to use in the UK)
OAASIS UK based Aspergers and Autism support group, lots of publications on there to download - those I'm both aware of from using them - the education stuff will be difficult to transfer though.
There's also Autism Support which seems good and looks international.
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Mugs - Keep the Ship afloat
Posts: 13794 | From: outiside the outer ring road | Registered: Aug 2006
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Ruudy:
Okay.... MONOLOGUING. How do you deal with your children when they monologue?
That brings back memories!
When Middle Son was in 5th grade or so, we were told that he needed to understand what monologuing was before we could really start to work on skills around it. So, the psychologist told us, every time he's monologuing, simply say, "Middle Son, you are monologuing." After a very long while (two or three months, maybe), Middle Son would stop himself during a monologue and say, "Am I monologuing?" We would say, "Yes, you are."
And that was when we started working with him on conversational strategies -- how to tell if someone is listening, or wanting to listen, how to take turns in conversation, and that sort of thing.
By the time we started working on those skills with him, the psychologist had also been doing some preliminary work with him on those skills. Gosh, that was a long time ago. I know one technique was using a "talking stick." When you're using it as a teaching tool, you sit with the child, and hold the stick, and say something and then ask a question, and hand the stick to the child. The child can then answer the question, and say something else, and hand it back. You can also use the talking stick to keep all of the sibling from going nuts because this one Won't Shut Up. It works best if you've been using it a bunch for games and low-stress times -- then if, at dinner, the Monologuer is monologuing, you can grab the talking stick, and say that everyone needs to have a turn, and give it to one of the other children. You might have to combine the talking stick with a timer at first. But it can really make a difference.
At some point, you have to teach explicitly "When I am reading a book, I do not want to talk with you about tigers," and that sort of thing.
quote:
Experience, strength, hope or resources anyone? Cause I'll take whatever I can get. I've googled this to death and am coming up empty handed.
It does get better. It really does. Middle Son is now in his twenties. He's interesting and funny and engages in appropriate conversations with people on a variety of subjects. He can even make small talk if he has to.
It was a lot of work getting to that point. But you've got lots of time.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Jane R:
Little J is going back to the migraine clinic next week - we're not doing very well here, she had a migraine a day during the half-term holiday and has had four this week. I am sticking straws in my hair whilst trying to catch up on my work. How is Littlest One getting on, Josephine?
Could be better, could be worse. He's still not well enough to go to school.
I'd be worried about the migraine-a-day thing -- it sounds like she's on the point of changing from episodic migraine to chronic migraine. Chronic migraine is far harder to manage. Hopefully the folks at the migraine clinic will be able to help!
Does Little J have a noticeable prodrome or postdrome? For Littlest One, those phases are far more disabling than the headache part, and they don't seem to be affected much by the triptan. (For anyone not familiar with what an entire migraine episode looks like, this summary is excellent.)
We're getting a pair of FL-41 tinted glasses for Littlest One, to see if they will help. I know another chronic migraineur who loves them -- they reduced his migraines from 2 or 3 a week to 2 in 6 months. It seems worth a try.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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birdie
fowl
# 2173
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Posted
quote:
Originally posted by Josephine:
It was a lot of work getting to that point. But you've got lots of time.
I needed to hear that just now, about lots of things! Thanks, Josephine.
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"Gentlemen, I wash my hands of this weirdness."
Captain Jack Sparrow
Posts: 1290 | From: the edge | Registered: Jan 2002
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Jane R
Shipmate
# 331
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Posted
Josephine: quote:
Does Little J have a noticeable prodrome or postdrome?
Difficult to say. She seems to get very lively and excitable just before some attacks - she'll be chatting away happily or playing with her toys or singing improvised songs and suddenly, BAM - we have the aura. But it's not a reliable sign, and sometimes she's just happy and enjoying herself and we don't get a migraine afterwards. The postdrome is even more vague - sometimes she's really tired and washed out, other times it's like flicking a switch - main attack over, back to normal straightaway. This is probably one of the reasons certain persons at the school are being sceptical - they find it difficult to believe that she can be half-comatose one minute and back to normal the next.
Thanks for the tip about tinted glasses - we will ask the specialist about that tomorrow. I was wondering whether osteopathy might help as well (the osteopath who treats my bad back is also qualified as a paediatric osteopath). We've been getting our information from http://www.migraineadventure.org.uk/ which is run by a British migraine charity, but I will check out yours too - more information is always useful.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Jane R
Shipmate
# 331
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Posted
(sorry about the double post, folks)
Ruudy: quote:
My post above was intended to display a certain sense of humor about things. Reading it now, I can see my frustration coming through.
IME you can be frustrated AND making jokes about it. The humour helps you to deal with the frustration... and thank you for the prayers.
Hope Littlest One's migraines get more manageable soon, Josephine. It must be very difficult for the rest of you as well, if he's too ill to go to school.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Jane R:
Josephine: quote:
Does Little J have a noticeable prodrome or postdrome?
Difficult to say. <snip> This is probably one of the reasons certain persons at the school are being sceptical - they find it difficult to believe that she can be half-comatose one minute and back to normal the next.
Our neurologists have said to expect exactly that. They said that some people with migraine have a very clear, predictable, each-one-exactly-like-the-next experience, and some people have migraines that vary wildly. And if you're taking a triptan or other medication that's intended to affect the migraine in progress, you inevitably get a lot of variation, because the effect of the drug is going to depend on exactly when during the progress of the migraine you took it.
Littlest One's prodrome is mostly irritability -- so, as you can imagine, that's hard to spot in a teenager whose life has been thoroughly upended by migraine. How do you distinguish between the prodrome and ordinary irritability? We can sometimes spot the difference, but not always. If he notices it, he can take a triptan, and that will (sometimes) abort the entire migraine.
The next step in his migraine is aphasia and light and sound sensitivity. If he notices that part (which is fairly reliable), and takes the triptan, the headache phase will be a lot milder, or even entirely absent, and he'll skip straight to the postdrome.
If he doesn't notice anything until the headache starts, then all he can do is ride it out.
His postdrome includes both fatigue and extreme brain fog -- almost like dementia.
quote:
Thanks for the tip about tinted glasses - we will ask the specialist about that tomorrow. I was wondering whether osteopathy might help as well (the osteopath who treats my bad back is also qualified as a paediatric osteopath). We've been getting our information from http://www.migraineadventure.org.uk/ which is run by a British migraine charity, but I will check out yours too - more information is always useful.
And I'll look at your site! In my experience over the years, sometimes research and practice in the UK are ahead on things, and sometimes it's ahead in the US. Keeping an eye on both is helpful!
Let me know what you find out about osteopathy. We haven't looked into that yet.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Jane R
Shipmate
# 331
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Posted
Brain fog? That rings a bell... sometimes Little J gets very angry and says things like 'I'm stupid!' when she's coming out of a migraine - though that's not saying much at the moment, she seems to be having them nearly all the time. I wonder if she's experiencing the same thing? Of course I've been telling her she's not stupid and she shouldn't say things like that about herself, but if it's a side-effect of the migraine maybe what she means is 'my brain isn't working normally at the moment'. She's usually very articulate, but her language ability seems to shut down when she's having a migraine; she can point to where it hurts but she can't describe what the pain feels like.
Osteopathy definitely works for bad backs and ordinary headaches - I've been going to an osteopath for years (when I can afford it; it's not covered on the NHS) - so it seems logical that it might help with migraine. But I'm going to check with the specialists first.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Jane R:
Brain fog? That rings a bell... sometimes Little J gets very angry and says things like 'I'm stupid!' when she's coming out of a migraine - though that's not saying much at the moment, she seems to be having them nearly all the time. I wonder if she's experiencing the same thing? Of course I've been telling her she's not stupid and she shouldn't say things like that about herself, but if it's a side-effect of the migraine maybe what she means is 'my brain isn't working normally at the moment'.
The first time Littlest One experienced brain fog, he found it terrifying. He had been home wiht a migraine, and the attack had passed, so he thought he'd work on his math assignment before he went back to school the next day. And he couldn't do it. He couldn't figure out how to do things that he knew how to do, and should have been able to do easily. My mother had died of complications of dementia, and that's what he thought was happening to him.
Learning that it wasn't dementia, but just an ordinary part of a migraine made it far less distressing for him. It really does complicate getting back to school, though -- there's really no point in going to school as soon as an attack is over, because until the postdrome clears, he really can't do any schoolwork. He's tried, and it hasn't worked well at all. The teachers really don't understand that he can look completely normal, but not be able to answer questions or to recall things that he knows.
quote:
She's usually very articulate, but her language ability seems to shut down when she's having a migraine; she can point to where it hurts but she can't describe what the pain feels like.
Varying degrees of aphasia are also pretty typical during a migraine. For Littlest One, the aphasia lasts for pretty much the whole episode. It's worst during the attack phase, but if he comes into the kitchen and says, "Can I have a thingy? You know, a thingy in the thingy," we know to hand him his meds, and then figure out what it is that he wants to eat.
Again, for him, knowing that it's just a migraine thing makes it less distressing.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Curiosity killed ...:
(You do know brain fog, aphasia and non-epileptic seizures are all CFS/ME symptoms?)
I didn't know that.
What is a non-epileptic seizure?
Since CFS/ME and migraine are both diagnoses of exclusion, what are the symptoms that would tell you whether you had one, or the other, or both? Does CFS/ME include a one-sided headache? Does it include photophobia and phonophobia?
Is there any effective treatment for CFS/ME? What would be different about treating chronic migraine vs treating CFS/ME?
THanks!
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Curiosity killed ...
Ship's Mug
# 11770
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Posted
quote:
What is a non-epileptic seizure?
I've seen all the epileptic type seizures with CFS/ME (that's UK, US it's CFIDS) absences, grand mal, petit mal - but they were symptoms that came and went.
quote:
Since CFS/ME and migraine are both diagnoses of exclusion, what are the symptoms that would tell you whether you had one, or the other, or both? Does CFS/ME include a one-sided headache? Does it include photophobia and phonophobia?
Problems with diagnosis - the Canadian guidelines, linked on that page, give photophobia and phonophobia as symptoms. My daughter had both badly. Headaches are a frequent symptom. I would add to that, children as young as 5 have been diagnosed with CFS/ME in the UK and that because it's an umbrella diagnosis (at least 5 or 7 versions) other things tend to be swept up under that umbrella. I know some of the people who were diagnosed with CFS/ME now, several years on, have different complicated diagnoses or have had other things picked up later (like anaemia).
quote:
Is there any effective treatment for CFS/ME?
The headaches and sleep disturbance often respond to low dose amitriptyline. The NICE (National Institute for Clinical Excellence) guidelines here are disputed, basically because the research it is based on is skewed. Patient groups like pacing - starting by working out a baseline and then working up from there. The book I found useful was Darrel Ho-Yen's Better Recovery from Viral Illnesses
quote:
What would be different about treating chronic migraine vs treating CFS/ME?
Not sure how you would treat chronic migraine so can't compare.
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Mugs - Keep the Ship afloat
Posts: 13794 | From: outiside the outer ring road | Registered: Aug 2006
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Dr ( pediatric neurologist) says not enough there to give LL a medical diagnosis, though he mentioned several supportive things we could do to help him IF I can get the school to agree. They're not going to be happy with a diagnosis of weird but neurologically normal, probably bright and bored, with annoying tics when bored. In my uncharitable opinion, that's because a diagnosis of autism would have allowed them to continue blaming the victim for whatever difficulties he has, including the bullying; if he's got no formal dx, they have to consider whether some of the school systems themselves may need readjusting. And fixing systems is a bitch.
We still have to do school testing, and I expect them to slap an educational autism dx on him simply to package him safely into their system. Whatever.
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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