Okay, so the ear fluid thing didn’t pan out, but I really don’t do well with the unknown, so I’ve been digging around to try and find some sort of decent direction to go. I don’t buy that this is hearing (we’ll see what the ABR says, but really, I doubt it will say anything much) and I don’t buy that this kind of change would happen without a reason.
So back to either stress from starting preschool or the flu.
Yesterday my friend Allison mentioned that her Mom wondered if instead of the flu, Dominic had had encephalitis back in Feb/March and had a resultant brain injury. We know it was the flu from the test, but that was an interesting idea. (hint #1 from the universe)
Way back when I first talked to my herblist friend Christie about what was going on, she mentioned a place north of Denver where they “rewire” autistic type kids brains using a combination of movement, light, and sound. I just filed it and when on about my business. (interesting coincidence)
The occupational therapist used the words Sensory seeking on Tuesday. So I went a’googling. I ended up finding the Sensory Learning Center in Boulder (turns out it’s the same place Christie had mentioned 6 weeks ago) I called and talked to the receptionist yesterday and found out that they offer a 30 day program, 12 of it in Boulder with 2 30min sessions each day for 12 in a row, and the other 18 at home with a portable light. Its expensive, plus there would be hotel and food for those 12 days. This morning, I got a call from the founder and director of it – she had come to read this blog, and she wanted to give me some more information. She was very curious about the flu we all had in Feb. She said that she’s seen virus’s eat the neural pathways in the brain, and that can definitely cause the symptoms we’re seeing. She offered a free experiential session on a weekend afternoon for us. (hint #2 - second mention of virus caused brain injury in 2 days)
The at lunch today, I had already planned a lunch date with my CC psych department friend (Hi Lori), who is technically a Neuro-Scientist. (yes, I know, the timing is pretty amazing). I had a long conversation with her, and the whole flu virus causing injury to the neural pathways in the Wernicke area of the brain is not unheard of. Rare, but not unheard of. She said from his symptoms he sounds very much like he’s got Wernicke’s Aphasia or Conduction Aphasia – both of which are brain injuries from something like a virus or stroke. She said it’s a very good sign that we’re not seeing it get worse and are in fact, having some better days. That could very much mean that his brain is potentially rewiring itself. She went back to CC and talked to the chair of the psych dept, who is a neuro-psychologist, and said Chair strongly encouraged us to contact the only pediatric neurologist in Colorado Springs. Apparently he’s extremely responsive to parents. She also strongly suggested an MRI. (oh goodie, another sedation event.). I’ve left a message for the Neurologist. He doesn’t work on Fridays. He’s apparently quite busy, so who knows when we’ll get in – but I name-dropped and used big words like Wernicke’s aphasia. Lori also is going to read the website for the Sensory Learning folks and let me know her opinion as a neuroscientist, but that a free session certainly wouldn’t hurt.
So,. we’ve checked our schedule and we’re going to go up to Boulder next Saturday for the free experiential session. I’m interested in what they have to say.
Friday, May 30, 2008
Wednesday, May 28, 2008
And the answer....is.... not.......
fluid.
Dr M. checked Dominics ears visually and with a tympanogram, and neither shows any indication of fluid.
Back to waiting for the ABR.
Dr M. checked Dominics ears visually and with a tympanogram, and neither shows any indication of fluid.
Back to waiting for the ABR.
Tuesday, May 27, 2008
Speech and Occupational Therapies Eval 5-27
Dominic had speech and OT assessments this morning at the Childhood Development Center. Rod and I were both very impressed with both therapists. they each got down on the floor and worked very well with Dominic. they have do their official tallying of the standardized tests, but both are going to recommend 2x a week. So he'll have ST 2x a week and OT 2x a week. each session is 30minutes, and they'll try to schedule an ST followed by an OT.
the occupational therapist had some interesting insight about sensory stuff. Apparently Dominic is a "sensory seeking" kid. he needs firm pressure - which explains why tags bug him, they're too gentle. It explains why he flings himself onto the furniture, it explains why he holds toys tightly when he sleeps. Why wraps himself tightly in things - towels, etc. She didn't really say what she would do to address the sensory stuff, but its definately there. Her bigger concern was he's not imitating. She warned us because that the standardized testing is all about having the child imitate a block pattern, and he wouldn't do it, that he was going to score very low.
The speech therapist called him a puzzle. Apparently to have this big of a regression past age 3 is odd. He's definately not checked out, tho (in the sense of being autistic). She was able to engage him, and get him to look her in the eye, and play. She also will wait with bated breath for the hearing test results.
He really liked both ladies - they're both young-ish (early 20's I'd say) and pretty. He likes pretty girls.
so we go back for the official parent conference on June 6 to be presented with their findings, and then therapy will likely start the next week.
the occupational therapist had some interesting insight about sensory stuff. Apparently Dominic is a "sensory seeking" kid. he needs firm pressure - which explains why tags bug him, they're too gentle. It explains why he flings himself onto the furniture, it explains why he holds toys tightly when he sleeps. Why wraps himself tightly in things - towels, etc. She didn't really say what she would do to address the sensory stuff, but its definately there. Her bigger concern was he's not imitating. She warned us because that the standardized testing is all about having the child imitate a block pattern, and he wouldn't do it, that he was going to score very low.
The speech therapist called him a puzzle. Apparently to have this big of a regression past age 3 is odd. He's definately not checked out, tho (in the sense of being autistic). She was able to engage him, and get him to look her in the eye, and play. She also will wait with bated breath for the hearing test results.
He really liked both ladies - they're both young-ish (early 20's I'd say) and pretty. He likes pretty girls.
so we go back for the official parent conference on June 6 to be presented with their findings, and then therapy will likely start the next week.
Monday, May 26, 2008
Bad day yesterday
Yesterday was not a good day. Dominic's little friend, Maya, came to visit. These kids have been such good friends for a long time, but Maya moved away, and they hadn't seen each other since Thanksgiving. It didn't help that Dominic was a bit sleep deprived (for whatever reason it took him much longer than usual to fall asleep), and it didn't help that when they arrived, the dog pulled D out the door and he reskinned his knee.
But all that aside. he would not interact with Maya. At all. which was just so sad to see, becase seriously, these kids normally hold hands and run around, and play and have a fabulous time. he did a little parallel play, but mostly wanted to be in a different room. Finally, at the end, 3 hours later, he did give her a hug and a kiss, but he just didn't dig playing with her.
There's been a noticable shift in socialiability, too. If thats actually a word. Last summer he wanted nothing but to go across the street and say hi to the neighbors. now he quite literally runs the other direction rather than go somewhere new.
so I am going back and forth in hoping that this is just a physical hearing problem leading to the speech regression and behavior shift, to wondering if I'm personally watching an autism regression as its happening. Its so frustrating. Maya's mom yesterday said watching Dominic now is literally like a completely different kid than she saw even in November. He's only sporadically even engaging with someone, and he used to flirt like mad with everyone around.
So. We will see. It was not a good day.
But all that aside. he would not interact with Maya. At all. which was just so sad to see, becase seriously, these kids normally hold hands and run around, and play and have a fabulous time. he did a little parallel play, but mostly wanted to be in a different room. Finally, at the end, 3 hours later, he did give her a hug and a kiss, but he just didn't dig playing with her.
There's been a noticable shift in socialiability, too. If thats actually a word. Last summer he wanted nothing but to go across the street and say hi to the neighbors. now he quite literally runs the other direction rather than go somewhere new.
so I am going back and forth in hoping that this is just a physical hearing problem leading to the speech regression and behavior shift, to wondering if I'm personally watching an autism regression as its happening. Its so frustrating. Maya's mom yesterday said watching Dominic now is literally like a completely different kid than she saw even in November. He's only sporadically even engaging with someone, and he used to flirt like mad with everyone around.
So. We will see. It was not a good day.
Friday, May 23, 2008
Wow. We've gone international
Through my ties to CC, I have been in touch with a PhD psychologist friend of mine about whats going on with Dominic (Hi L. – I know you’re reading!), and had asked her for her professional opinion about if a mild hearing loss could cause the sudden shift in speech development and behavior that we’ve seen. I know that she’s not a developmentalist, so I gave her permission to forward this blog on to any colleagues she might know of who would have insight – after all, it’s the internet, its not like anything I write is private.
Anyway, she contacted the woman who was the Psych department head while I was at CC, who is a developmentalist, who contacted a colleague of hers in London who did her PhD in biomedical engineering on assessing the auditory response cradle for newborn screening. Until recently, she was in charge of pediatric audiology for the North Thames region (about a quarter of greater London) – for roughly 20 years, to get her opinion.
This is and excerpt of what came back. I’m gobsmacked to say the least.
“The query you were asked was is it possible for a mild hearing loss in a child to cause dramatic changes in behaviour and language that in some ways resemble autistic spectrum disorder. At Hillingdon hospital I saw many young children who were driving their parents to distraction with behavioural problems that arose during episodes of just a mild conductive hearing loss. Some of these cases did indeed exhibit more extreme behavioural and language changes that resembled autistic spectrum disorder.
Some years ago Prof Mark Haggard wrote a major document on mild conductive hearing loss which touched on the subject.
Joy says below that she "had a hearing loss.......found at age 6, but my parents assume it was there from birth - and I didn't have any issues with speech or communication". A congenital hearing loss does NOT contribute to behavioural problems in children in the way that an acquired hearing loss
does. Plus if with this particular child it is believed there might have been stress associated with starting pre-school, this would have added to the problems of mild hearing problems.
In reading the blog I gather that both mom and grandad had hearing loss diagnosed in their childhood. It is very likely that Dominic has inherited this. Does mom know if her and her dad's loss is conductive or sensori-neural? … Dominic could have a mild sensori-neural loss which, with the start of pre-school and being exposed to the usual coughs and colds of young children, has led to a further conductive overlay due to otitis media with effusion. This would be enough to cause behavioural problems and the regression of speech to babble.”
A link about Otis Media with Effusion: http://www.nlm.nih.gov/medlineplus/ency/article/007010.htm
I checked the calendar. Feb 28 – Dominic brought home a cold from school. He went back to school Friday, and then got sick with the Flu on Sunday. And we kept him home for a week (the same flu that landed me in the ER that week, yep, that one). I do not think that anyone has looked in his ears since then.
This could very well be the trigger we’ve been looking for. The timing matches. Almost perfectly.
I have made an appointment with the pediatrician for next week Wednesday, at 3:40 pm to check his inner ear for OME.
Anyway, she contacted the woman who was the Psych department head while I was at CC, who is a developmentalist, who contacted a colleague of hers in London who did her PhD in biomedical engineering on assessing the auditory response cradle for newborn screening. Until recently, she was in charge of pediatric audiology for the North Thames region (about a quarter of greater London) – for roughly 20 years, to get her opinion.
This is and excerpt of what came back. I’m gobsmacked to say the least.
“The query you were asked was is it possible for a mild hearing loss in a child to cause dramatic changes in behaviour and language that in some ways resemble autistic spectrum disorder. At Hillingdon hospital I saw many young children who were driving their parents to distraction with behavioural problems that arose during episodes of just a mild conductive hearing loss. Some of these cases did indeed exhibit more extreme behavioural and language changes that resembled autistic spectrum disorder.
Some years ago Prof Mark Haggard wrote a major document on mild conductive hearing loss which touched on the subject.
Joy says below that she "had a hearing loss.......found at age 6, but my parents assume it was there from birth - and I didn't have any issues with speech or communication". A congenital hearing loss does NOT contribute to behavioural problems in children in the way that an acquired hearing loss
does. Plus if with this particular child it is believed there might have been stress associated with starting pre-school, this would have added to the problems of mild hearing problems.
In reading the blog I gather that both mom and grandad had hearing loss diagnosed in their childhood. It is very likely that Dominic has inherited this. Does mom know if her and her dad's loss is conductive or sensori-neural? … Dominic could have a mild sensori-neural loss which, with the start of pre-school and being exposed to the usual coughs and colds of young children, has led to a further conductive overlay due to otitis media with effusion. This would be enough to cause behavioural problems and the regression of speech to babble.”
A link about Otis Media with Effusion: http://www.nlm.nih.gov/medlineplus/ency/article/007010.htm
I checked the calendar. Feb 28 – Dominic brought home a cold from school. He went back to school Friday, and then got sick with the Flu on Sunday. And we kept him home for a week (the same flu that landed me in the ER that week, yep, that one). I do not think that anyone has looked in his ears since then.
This could very well be the trigger we’ve been looking for. The timing matches. Almost perfectly.
I have made an appointment with the pediatrician for next week Wednesday, at 3:40 pm to check his inner ear for OME.
Monday, May 19, 2008
What you can do to help
There are a couple of ways to help.
We are so grateful to all of you who've helped by sending money to pay for ABA therapy at Alpine. Its going so well - we can see such a shift in Dominic and that makes us really happy
Here is the paypal button to donate towards Dominic's therapy fund. This goes into the savings account we use to pay for it. It is not tax deductible.
If you would prefer to make a tax deductible donation to Alpine, Please email me at domsjourney at gmail dot com. You can either write a check and have me take it to Alpine when we pay them (less paperwork for Alpine to keep track of, and it ensures we know where the donation is supposed to go), or you can contact Alpine directly (www.alpineautismcenter.org) and make an anonymous donation, asking that it be credited to the account of Dominic Whitcomb Valdez.
Alternatively, you can come to a Yoga class that Rod teaches Saturday mornings downtown at Yoga Journeys from 8-9:30am. (starting Sept 5). the $10 fee for the class will go entirely to Dominic's medical bills.
And here are some other ideas that would be helpful:
Gift Certificates to:
Whole Foods or Sunflower Family Market (For the nitrate free meats, GFCF waffles, and organic stuff...)
College Pharmacy (they're not covered by our insurance and all his compounded prescriptions come from them, as well as several supplements)
Kirkmann Labs (for this digestive enzyme)
New Beginnings Nutritionals (For Zinc, Copper, and MCT Oil)
We are so grateful to all of you who've helped by sending money to pay for ABA therapy at Alpine. Its going so well - we can see such a shift in Dominic and that makes us really happy
Here is the paypal button to donate towards Dominic's therapy fund. This goes into the savings account we use to pay for it. It is not tax deductible.
If you would prefer to make a tax deductible donation to Alpine, Please email me at domsjourney at gmail dot com. You can either write a check and have me take it to Alpine when we pay them (less paperwork for Alpine to keep track of, and it ensures we know where the donation is supposed to go), or you can contact Alpine directly (www.alpineautismcenter.org) and make an anonymous donation, asking that it be credited to the account of Dominic Whitcomb Valdez.
Alternatively, you can come to a Yoga class that Rod teaches Saturday mornings downtown at Yoga Journeys from 8-9:30am. (starting Sept 5). the $10 fee for the class will go entirely to Dominic's medical bills.
And here are some other ideas that would be helpful:
Gift Certificates to:
Whole Foods or Sunflower Family Market (For the nitrate free meats, GFCF waffles, and organic stuff...)
College Pharmacy (they're not covered by our insurance and all his compounded prescriptions come from them, as well as several supplements)
Kirkmann Labs (for this digestive enzyme)
New Beginnings Nutritionals (For Zinc, Copper, and MCT Oil)
Friday, May 16, 2008
IEP assessment update
This morning we had the IEP assessment with D11. It actually went Very Well. Everyone there was very nice. Dominic did well in the sense that he warmed up within about half an hour and was interacting well with the various assessors. We had a nurse, early childhood special ed person, psychologist, speech pathologist, preschool teacher, occupational therapist and physical therapist. They played with him, tried to get him to tell them what various pictures were, had him do some imaginative play (he fed a doll a bottle and some cheerios).
The overall consensus was we need to get the ABR test done (its coming, waiting for various doc's to coordinate and insurance, and then scheduling) because the psychologist thinks that the language delays are very likely the result of him not hearing all the cues he needs. That perhaps the hearing loss piece started during a pivotal language development time for his brain, and thats why we've seen the regression. So we get the test done and either rule the hearing in or out. What is fascinating to us is that he passed his birth hearing screen with no issues. I was 6 when my hearing loss was discovered by the school nurse and my father was 5 when his was discovered, so finding it at 3 is significantly sooner. And if we find that its very mild right now, and it gets worse, then perhaps its not a "from birth" kind of thing like we always thought. perhaps there's a physical component (this bone thing that they want to CAT scan him for maybe). If thats the case, i'll be asking my doc for a cat scan to see if I have it. Anyway, all that aside, i'm still clueless as to how i'd put hearing aids on a 3 year old.
They gave us an IEP for next school year that involves an hour a week of speech therapy in the classroom, 10 hours a week of extra focus from the teachers (basically the whole time he's there) and an hour a month with the early childhood special ed specialist. We were very pleased with the specific goals that they listed and the requirements (like gentle transitions, which we knew were a big problem, and a very regular routine, alternative communicationn method like pictures or sign language to bridge the gap before he speaks better).
The psychologist made the comment that she doesn't see autism spectrum for him, because he's communicative with his facial expressions, and interacts while playing, etc. So that was very encouraging. They all saw the stress level and frustration for him in not communicating verbally, so that was good. Basically, they saw him as we see him - which is not how the preschool teacher see's him.
Should be interesting to see what the private speech and occupational evaluators say.
The overall consensus was we need to get the ABR test done (its coming, waiting for various doc's to coordinate and insurance, and then scheduling) because the psychologist thinks that the language delays are very likely the result of him not hearing all the cues he needs. That perhaps the hearing loss piece started during a pivotal language development time for his brain, and thats why we've seen the regression. So we get the test done and either rule the hearing in or out. What is fascinating to us is that he passed his birth hearing screen with no issues. I was 6 when my hearing loss was discovered by the school nurse and my father was 5 when his was discovered, so finding it at 3 is significantly sooner. And if we find that its very mild right now, and it gets worse, then perhaps its not a "from birth" kind of thing like we always thought. perhaps there's a physical component (this bone thing that they want to CAT scan him for maybe). If thats the case, i'll be asking my doc for a cat scan to see if I have it. Anyway, all that aside, i'm still clueless as to how i'd put hearing aids on a 3 year old.
They gave us an IEP for next school year that involves an hour a week of speech therapy in the classroom, 10 hours a week of extra focus from the teachers (basically the whole time he's there) and an hour a month with the early childhood special ed specialist. We were very pleased with the specific goals that they listed and the requirements (like gentle transitions, which we knew were a big problem, and a very regular routine, alternative communicationn method like pictures or sign language to bridge the gap before he speaks better).
The psychologist made the comment that she doesn't see autism spectrum for him, because he's communicative with his facial expressions, and interacts while playing, etc. So that was very encouraging. They all saw the stress level and frustration for him in not communicating verbally, so that was good. Basically, they saw him as we see him - which is not how the preschool teacher see's him.
Should be interesting to see what the private speech and occupational evaluators say.
Wednesday, May 14, 2008
speech screen 5-14
We did the speech screen this morning. They tried to do another hearing test on him (this was the school district as opposed to the private office we'd already had it done at) but he wasn't in the mood for the big soundproof box.
The speech pathologist was very nice. She did a very simple test thing where she tried to get Dominic to tell her what the picture in a book was. He was about as cooperative for her as he is for us these days - not very. She did get to hear the babbling that has replaced most of his language, and from what she heard and saw, she recommended that we proceed with an assessment through the school. This is multiple specialist arena type assessment, where for an hour they watch him play and interact with him, and then the next hour they tell us what they think. At the end of this appointment we will either come out with an IEP saying that he needs educational services through the school, or we'll come out with paperwork saying that he doesn't need them.
They had a cancellation for this Friday morning at 8am, so we're trying to juggle our schedules in order to make that work (Rod's got to get a class covered, and I've got to get myself out of work for the morning.) If that doesn't work, then it will be sometime within 60 days (i guess that is their official clock - 60 days from screening to assessment).
so, we still know nothing. But we have another appointment.
The speech pathologist was very nice. She did a very simple test thing where she tried to get Dominic to tell her what the picture in a book was. He was about as cooperative for her as he is for us these days - not very. She did get to hear the babbling that has replaced most of his language, and from what she heard and saw, she recommended that we proceed with an assessment through the school. This is multiple specialist arena type assessment, where for an hour they watch him play and interact with him, and then the next hour they tell us what they think. At the end of this appointment we will either come out with an IEP saying that he needs educational services through the school, or we'll come out with paperwork saying that he doesn't need them.
They had a cancellation for this Friday morning at 8am, so we're trying to juggle our schedules in order to make that work (Rod's got to get a class covered, and I've got to get myself out of work for the morning.) If that doesn't work, then it will be sometime within 60 days (i guess that is their official clock - 60 days from screening to assessment).
so, we still know nothing. But we have another appointment.
Monday, May 12, 2008
quickie update
Called the audiologists office since we haven't heard from anyone about the further testing they wanted to do, and come to find out the letter she dictated was still in the transciptionists pile. It went to the pediatrician today. I expect to hear something scheduling related in the next week or so.
Thursday, May 1, 2008
Herbalist appointment.
Christie thinks the problem lies with the teacher, not with Dominic. She muscle tested him for piles of potential food allergies and got no indication that food is any part of the problem. A former daycare worker and a grandma herself, she tells me that her take on the speech issue is this is simply a growth spurt and his brain is moving faster than his mouth right now. His energy does not at all feel like an autistic kid.
Anyway. She did give us a couple of suggestions for some supplements to help calm down any brain chatter he might have going on. Both from Natures Sunshine – one called Focus attention and one called Gaba.
She did get a hit on him for environmental toxins, which given the world we live in is not at all suprising. She has a call out to a colleague who treats more kids than she does for ideas on treating that. All else fails, we can do straight milk thistle for a liver cleanse for him. We’re neither of us feeling a huge sense of urgency to start him on these herbs Right This Second, so she is going to wait to speak to her colleague before ordering.
Anyway. She did give us a couple of suggestions for some supplements to help calm down any brain chatter he might have going on. Both from Natures Sunshine – one called Focus attention and one called Gaba.
She did get a hit on him for environmental toxins, which given the world we live in is not at all suprising. She has a call out to a colleague who treats more kids than she does for ideas on treating that. All else fails, we can do straight milk thistle for a liver cleanse for him. We’re neither of us feeling a huge sense of urgency to start him on these herbs Right This Second, so she is going to wait to speak to her colleague before ordering.
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