geezermom
06-04-2005, 05:42 PM
Hi all. My 4 year old was 14 weeks premature, weighed a little over one pound at birth, and became very ill with an infection that required nasty antibiotics. He was born 2 days before Labor Day and came home 2 days before Christmas - big time sick, but no brain damage was visible on any of his cranial ultrasounds. He also took a boatload of other drugs which are common to "micro preemies" - the ones who weigh less than 2 pounds.
Please? Do any of you have former preemies? I keep banging into other micropreemies who've gotten the PDD NOS diagnosis, and their flavor of PDD is really similar to my little boy's. I'm wondering if there is some brain damage or miswiring going on, and if so, should we be trying therapy like they use for stroke patients or Alzheimers patients, etc. We do this one singing technique designed for stroke patients and it works like greased lightening, whereas floortime, ABA, yaddayadda don't do much for him. Any thoughts?
Thank you!!! None of us wants our chld to be genetically predetermined to be autistic because that bodes poorly for our grandkids, if they ever materialize. I'm hoping prematurity/drugs/brain injury made him this way. I know you understand my denial. Thank you.
Please? Do any of you have former preemies? I keep banging into other micropreemies who've gotten the PDD NOS diagnosis, and their flavor of PDD is really similar to my little boy's. I'm wondering if there is some brain damage or miswiring going on, and if so, should we be trying therapy like they use for stroke patients or Alzheimers patients, etc. We do this one singing technique designed for stroke patients and it works like greased lightening, whereas floortime, ABA, yaddayadda don't do much for him. Any thoughts?
Thank you!!! None of us wants our chld to be genetically predetermined to be autistic because that bodes poorly for our grandkids, if they ever materialize. I'm hoping prematurity/drugs/brain injury made him this way. I know you understand my denial. Thank you.
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drasdma
06-11-2005, 05:35 PM
My personal opinion is that it is a combination of environmental and genetic which cause children to have these symptoms. I read about different theories all the time, there is a really good book by Stephen B Edelson MD and Deborah Mitchell called What your Doctor may not tell you about Autoimmune Disorders, very interresting stuff. Now recently the CDC (Center for Disease Control) announced that they were starting a study into autism because of the dramatic increase in recent years. It will be very interresting to see what they come up with. There is also a study going on right now with 5 year olds with autism who are being given prozac, now I cannot imagine doing this with my child it sounds insane to me. Be very cautious parents want their children healthy and there are people scrambling to find the cause, the cure, or the most effective treatment. And all of them want to be the first to discover these things or at least be a part of it (Medical History). Best Wishes! B
cazajacks
06-13-2005, 05:59 PM
Hi i have a daughter of 12 yrs old who was diagnosed aged 8 with Autistic spectrum disorder. she was born 12 weeks premature.( one of twins but only she survived) all through her life i kept saying something was wrong with her but they labelled me, neurotic mother, attention seeking etc etc. once she hit 8 i took her out of our area and to a specialist who knew lots about autism, she immediatly could tell what was wrong with my daughter and actually gave us a diagnosis. I am having great problems with her now as she has started senior school and it is NOT working out, ( i thought things would get easier to be honest) and also she suffers with stiff and painful joints, ( dr said some form of arthritus)
p_whalen
06-19-2005, 09:09 PM
i have a son who was also premie.he was 4 pounds at birth and now is 15 teen. he has been dx with pdd also and bi-polar.we have been on every med a person can think of with no luck.i still look on the computer for answers
geezermom
07-12-2005, 12:58 AM
Thanks for your responses. I did some digging into medical sites and found a study that showed high levels of bilirubin (jaundice) being linked to PDD NOS, but not to autism. Seems like the earlier your child is, the worse the jaundice is. Another study, out of Japan, showed that survivors of the Neonatal ICU were two times more likely to turn up with some flavor of autism
Hey, all you DAN fans will flip over this! I met a mom on a preemie website who has IDENTICAL TWIN sons, but only one is PDD NOS. He was smaller and sicker, so had many more antibiotics. Wonder what those drugs did to him?? He didn't fare very well in utero, though, which is why they had to do such an early delivery. Like my son, these boys were about a pound apiece at birth and were 14 weeks early.
We're headed to a neurologist in a couple weeks and hope to fgure out how best to help him. He's mostly fine, but daydreams/talks to himself, can't converse, and occasionally throws in a little wing flapping when he's laughing at something. From one pound to merely PDD NOS is still a miracle. Thanks.
Hey, all you DAN fans will flip over this! I met a mom on a preemie website who has IDENTICAL TWIN sons, but only one is PDD NOS. He was smaller and sicker, so had many more antibiotics. Wonder what those drugs did to him?? He didn't fare very well in utero, though, which is why they had to do such an early delivery. Like my son, these boys were about a pound apiece at birth and were 14 weeks early.
We're headed to a neurologist in a couple weeks and hope to fgure out how best to help him. He's mostly fine, but daydreams/talks to himself, can't converse, and occasionally throws in a little wing flapping when he's laughing at something. From one pound to merely PDD NOS is still a miracle. Thanks.
sugebu
07-13-2005, 01:04 AM
My 21 month old autistic son WILL respond/pay attention to familiar music, chant and intonation. Pitch seems to mean more than regular phonemes. Please tell me about this therapeutic approach!!! :bouncing:
-Susan
Mother to Autumn and Jakob (21 months) and Sarah (21 YEARS) and Amanda (19 years)
ETA, the twins WERE preemies - 5 weeks, but Jakob was the 2nd twin, and was "abandoned" in me because the second doctor "forgot" we were delivering and left the hospital (they couldn't cut him out or try an extraction without the 2nd doctor present)...so he was born 44 minutes later, blue and not breathing. I've seen correlations between bad births and PDD in other studies. I wish that d*mn forgetful doctor would pay for all the intervention my son now needs!
-Susan
Mother to Autumn and Jakob (21 months) and Sarah (21 YEARS) and Amanda (19 years)
ETA, the twins WERE preemies - 5 weeks, but Jakob was the 2nd twin, and was "abandoned" in me because the second doctor "forgot" we were delivering and left the hospital (they couldn't cut him out or try an extraction without the 2nd doctor present)...so he was born 44 minutes later, blue and not breathing. I've seen correlations between bad births and PDD in other studies. I wish that d*mn forgetful doctor would pay for all the intervention my son now needs!
geezermom
07-13-2005, 05:43 PM
Susan - I can't believe the dr. forgot you had another kiddo waiting inside during delivery! He SHOULD be paying for your son's therapies - that's what the expensive malpractice insurance does.
Melodic Intonation is the technique we use to generate appropriate conversational responses. In essence, you have the child/patient memorize correct answers by singing them. Later, they incorporate those responses into their conversational abilities and it helps foster more verbal interaction. Stroke patients do this all the time.
What you do is, pick a song that's readily recognizable - even to a toddler - and insert conversational terms into it. For example, even before he was 1 yr old, my son could point to his photo or his image in a mirror and say "that's Cole!" when I asked him who that was. But when I asked directly " what's your name?", all I would get is a blank stare or him just ignoring me. He would not converse, even though he knew the answer.
We used the tune to Frere Jacques/Are You Sleeping and did "what is your name, what is your name? My name's Cole, my name's Cole. Wha-a-at is your name, Wha-a-at is your name? My name's Cole, My name's Cole."
We sang the song off and on for about 40 minutes, then stopped. During his bath, I sang it again a couple times along with my husband. The next day, I asked him (not sang to him) "hey, what's your name?". He lit up with a huge grin and practically yelled (not sang) "my name's Cole!!". He was so proud of himself.
The next week, we did "How old are you - I'm four years old" to the tune of Happy Birthday. Again, we did it for 40 minutes and less than 24 hours later, he could tell you his age. The following week we did "what's your phone number" to the tune of Frere Jacques, and by golly, he could tell you his number the next day. We did all this in the month of October and he still responds with the right answers.
This obviously ain't Nirvana, but the way you learn to speak French is to MEMORIZE how to ask "how are you" and respond appropriately. Later, you don't even have to think about what to say - it becomes part of your unconscious response. I liken our kids to people from Sweden being spoken to by people from Nairobi without the aid of an interpretor. They have to really concentrate to understand what the devil we're asking them. Memorizing bootstraps that comprehension early on.
Hope this helps! Let me know...
LeAnne
Melodic Intonation is the technique we use to generate appropriate conversational responses. In essence, you have the child/patient memorize correct answers by singing them. Later, they incorporate those responses into their conversational abilities and it helps foster more verbal interaction. Stroke patients do this all the time.
What you do is, pick a song that's readily recognizable - even to a toddler - and insert conversational terms into it. For example, even before he was 1 yr old, my son could point to his photo or his image in a mirror and say "that's Cole!" when I asked him who that was. But when I asked directly " what's your name?", all I would get is a blank stare or him just ignoring me. He would not converse, even though he knew the answer.
We used the tune to Frere Jacques/Are You Sleeping and did "what is your name, what is your name? My name's Cole, my name's Cole. Wha-a-at is your name, Wha-a-at is your name? My name's Cole, My name's Cole."
We sang the song off and on for about 40 minutes, then stopped. During his bath, I sang it again a couple times along with my husband. The next day, I asked him (not sang to him) "hey, what's your name?". He lit up with a huge grin and practically yelled (not sang) "my name's Cole!!". He was so proud of himself.
The next week, we did "How old are you - I'm four years old" to the tune of Happy Birthday. Again, we did it for 40 minutes and less than 24 hours later, he could tell you his age. The following week we did "what's your phone number" to the tune of Frere Jacques, and by golly, he could tell you his number the next day. We did all this in the month of October and he still responds with the right answers.
This obviously ain't Nirvana, but the way you learn to speak French is to MEMORIZE how to ask "how are you" and respond appropriately. Later, you don't even have to think about what to say - it becomes part of your unconscious response. I liken our kids to people from Sweden being spoken to by people from Nairobi without the aid of an interpretor. They have to really concentrate to understand what the devil we're asking them. Memorizing bootstraps that comprehension early on.
Hope this helps! Let me know...
LeAnne