Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 I agree, it doesn't slack off. But I do think you get used to it. We have physical therapy Tuesday afternoon, Early intervention Wednesday morning followed by PT, Thursday is our day for OT(we start that in Feb), every third friday is our neuro day. I get my Monday's for kickboxing and my weekends. Just started 3 online classes so let the chaos begin. Our early intervention is basically addressing milestones and making sure we have the right referrals and keeping everybody in the same loop. If anyone would like to have a website to keep family and friends updated go to www.caringbridge.org Its free and simple my baby has a page just go to the site and under visit type in savannahmcdaniel. She has a guestbook also. Happy New year all and know that we are special people to have these special babies! Keasha carrie_and_kids wrote: Hi . So I guess the answer is no, it doesn't slack off? ;o) What I know about Quinn's lissencephaly is that it's primarily from the middle to the rear of his brain. The last time I discussed it with the neuro doc, he mentioned the seizure activity taking place in the left frontal lobe, " where there's more damage. " I still don't know what that means. I'd like to look at the films and talk about them with someone, but it can be hard to be taken seriously without that MD..... I looked at your site--what a *cutie.* Sounds like our boys have some things in common. my email: 5littleclassicalducks@... blog: www.duramater5.blogspot.com How did you become involved with the early intervention therapy? What kinds of things does do in IT? > > Welcome . > > > > I am also mom to five kids, 4 girls and my son who has IS and CBPS. > > My kids are older, ages 21, 19, 17, and 13, then little at 17 months. > > > > does sit by himself yet, he does sit up for brief seconds but when he > tips over he does not reach to catch himself. > > He is non-verbal. Does not crawl or stand on his own because his trunk is > too weak. In February will be 1 year SF > > He is a happy little guy generally. > > > > Our therapies are like this. > > > > Monday - 1 hour Early Intervention > > Tuesday - 1 hour Speech Therapy > > 1 hour OT/PT therapy > > Wednesday - 1 hour Early Intervention > > 1 hour OT > > 1 hour PT > > Thursday - 1 hour Speech Therapy > > Friday - 1 hour Speech/PT Therapy > > > > We take the weekends off > > > > Because is most likely going to not have a huge vocabulary and will > most likely not be able to use sign language because of his condition, we > are teaching eye contact rules, looking into buttons and such, voice boxes. > > As you can see...our days are typically busy but we get all the therapies in > while the girls are at work or school, so we do have the evenings for family > time. I had to quit my job and depend solely on my husbands income.... > > > > You said you were waiting for Dobyns to verify PMG. DO you know what > percentage? Or the area? > > > > > > Mom to the crew... > > <http://www.babyjellybeans.com/web/do/site?ID=5864> > http://www.babyjellybeans.com/web/do/site?ID=5864 > > > > > > _____ > > From: polymicrogyria [mailto:polymicrogyria ] > On Behalf Of carrie_and_kids > Sent: Tuesday, January 02, 2007 3:51 AM > To: polymicrogyria > Subject: Introduction > > > > Hi. I'm and I have five kiddoes, the youngest of which, > Quinn, has partial lissencephaly. Dr. Dobyns should have Quinn's MRI > now--the geneticist thinks it's likely PMG and is looking for > confirmation. > > Quinn will be a year old on Jan. 8. He's a happy baby, > developmentally around 5 mos. He'll start solids this week > (currently exclusively bfed). He is on Trileptal for seizures and > Prevacid for reflux. Quinn has Speech therapy twice a month, OT and > PT each weekly, vision therapy every couple of months or so. His > tone is low unless he's excited at which point he becomes fairly > rigid. He doesn't yet sit. He orients to sound and has begun to > scoot himself a little toward things he finds interesting--mirrors, > high contrast toys, sounds. He has intermittent exotropia and his > functional vision is about 20/310, so his visual input is > compromised. He loves pat-a-cake and peek-a-boo and most kinds of > music--he will " talk " to the organ at church. He doesn't often sleep > through the night--usually three hours is about as long as he goes. > His nap patterns are irregular. He's had 2 CTs, an MRI, two EEGs, > ultrasounds (and x-ray) which ruled out leaky bowel and inguinal > hernia. > > I've been " lurking " for awhile and am encouraged to realize that I'm > not alone on this path. There's not much info out there unless it's > from parents (as I'm sure you all know!). My husband left when I was > just beginning the second trimester with Quinn (before the ultrasound > showed the baby's abdominal ascites and enlarged rear ventricles in > the brain). He's an MD/PhD and in the past I've relied heavily on > him for medical/health info for our older kids. The situation rather > prevents that now. I'm grateful to have found you all and look > forward to learning more from and about you. > > I'm wondering what your days look like as far as therapies, > appointments, etc.? I'm pretty busy with all this (plus the older > kids)--does it slow down? Is there any such thing as " typical " with > PMG or does it depend entirely on the other diagnoses for each child? > > Thanks and Happy New Year, > > mom to 11yob, 9,6,4 yog and Quinn, 11 3/4 months > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 , As I'm sure everyone will tell you; ask to have Quinn's films and reports sent to Dr. Dobyns. He's the expert on Lis and PMG. I'm told he will consult with you and your Doctor. We live in the Chicago area and will be seeing him for the first time in March. In the meantime, ask if you can have a copy of the MRI and CT scan reports. These are written out usually by a radiologist not your neuro so I see them as kind of a second opinion. My husband was told by the Nuero that his daughter had Pachygyria but after reading the radiologist report they clearly stated it was PMG (a totally different diagnosis). I'm no expert or doctor either but from what I've been reading it is common for doctors to misdiagnose PMG as Pachy but not usually the other way around. I'm expecting Dobyns to provide the accurate diagnosis. The interesting thing though is that my step daughter's neuro has never mentioned PMG nor did he ever say that the radiologist report states something different or offer an explaination as to why it differs from his opinion (hmmmm). The report also mentioned an enlarged cisterna magna and lateral ventricle and grey matter heterotopia in the ventricles, None of this was told to my husband by the neuro. So yeah, ask for the reports, you may be surprised at how much more information you get from those than what you are being told. Same deal with CT scans, we found out that the seizure activity was coming from the opposite side of her brain than were the PMG is. The doctor didn't mention it until the next CT scan and I told my husband that the one taken 6 months earlier showed the same thing (the Dr didn't spot it until the next scan?!). They have a lot of patients and i'm sure they can miss things so I'm not blaming the doctor, but it may be a good idea to read these reports and ask or point out anything you see that looks unusual. ALWAYS ASK FOR A COPY OF THE REPORTS! Penny - Step Mom to nela (Marz) 14 yrs old. carrie_and_kids wrote: Hi . So I guess the answer is no, it doesn't slack off? ;o) What I know about Quinn's lissencephaly is that it's primarily from the middle to the rear of his brain. The last time I discussed it with the neuro doc, he mentioned the seizure activity taking place in the left frontal lobe, " where there's more damage. " I still don't know what that means. I'd like to look at the films and talk about them with someone, but it can be hard to be taken seriously without that MD..... I looked at your site--what a *cutie.* Sounds like our boys have some things in common. my email: 5littleclassicalducks@... blog: www.duramater5.blogspot.com How did you become involved with the early intervention therapy? What kinds of things does do in IT? > > Welcome . > > > > I am also mom to five kids, 4 girls and my son who has IS and CBPS. > > My kids are older, ages 21, 19, 17, and 13, then little at 17 months. > > > > does sit by himself yet, he does sit up for brief seconds but when he > tips over he does not reach to catch himself. > > He is non-verbal. Does not crawl or stand on his own because his trunk is > too weak. In February will be 1 year SF > > He is a happy little guy generally. > > > > Our therapies are like this. > > > > Monday - 1 hour Early Intervention > > Tuesday - 1 hour Speech Therapy > > 1 hour OT/PT therapy > > Wednesday - 1 hour Early Intervention > > 1 hour OT > > 1 hour PT > > Thursday - 1 hour Speech Therapy > > Friday - 1 hour Speech/PT Therapy > > > > We take the weekends off > > > > Because is most likely going to not have a huge vocabulary and will > most likely not be able to use sign language because of his condition, we > are teaching eye contact rules, looking into buttons and such, voice boxes. > > As you can see...our days are typically busy but we get all the therapies in > while the girls are at work or school, so we do have the evenings for family > time. I had to quit my job and depend solely on my husbands income.... > > > > You said you were waiting for Dobyns to verify PMG. DO you know what > percentage? Or the area? > > > > > > Mom to the crew... > > <http://www.babyjellybeans.com/web/do/site?ID=5864> > http://www.babyjellybeans.com/web/do/site?ID=5864 > > > > > > _____ > > From: polymicrogyria [mailto:polymicrogyria ] > On Behalf Of carrie_and_kids > Sent: Tuesday, January 02, 2007 3:51 AM > To: polymicrogyria > Subject: Introduction > > > > Hi. I'm and I have five kiddoes, the youngest of which, > Quinn, has partial lissencephaly. Dr. Dobyns should have Quinn's MRI > now--the geneticist thinks it's likely PMG and is looking for > confirmation. > > Quinn will be a year old on Jan. 8. He's a happy baby, > developmentally around 5 mos. He'll start solids this week > (currently exclusively bfed). He is on Trileptal for seizures and > Prevacid for reflux. Quinn has Speech therapy twice a month, OT and > PT each weekly, vision therapy every couple of months or so. His > tone is low unless he's excited at which point he becomes fairly > rigid. He doesn't yet sit. He orients to sound and has begun to > scoot himself a little toward things he finds interesting--mirrors, > high contrast toys, sounds. He has intermittent exotropia and his > functional vision is about 20/310, so his visual input is > compromised. He loves pat-a-cake and peek-a-boo and most kinds of > music--he will " talk " to the organ at church. He doesn't often sleep > through the night--usually three hours is about as long as he goes. > His nap patterns are irregular. He's had 2 CTs, an MRI, two EEGs, > ultrasounds (and x-ray) which ruled out leaky bowel and inguinal > hernia. > > I've been " lurking " for awhile and am encouraged to realize that I'm > not alone on this path. There's not much info out there unless it's > from parents (as I'm sure you all know!). My husband left when I was > just beginning the second trimester with Quinn (before the ultrasound > showed the baby's abdominal ascites and enlarged rear ventricles in > the brain). He's an MD/PhD and in the past I've relied heavily on > him for medical/health info for our older kids. The situation rather > prevents that now. I'm grateful to have found you all and look > forward to learning more from and about you. > > I'm wondering what your days look like as far as therapies, > appointments, etc.? I'm pretty busy with all this (plus the older > kids)--does it slow down? Is there any such thing as " typical " with > PMG or does it depend entirely on the other diagnoses for each child? > > Thanks and Happy New Year, > > mom to 11yob, 9,6,4 yog and Quinn, 11 3/4 months > > > > > > Quote Link to comment Share on other sites More sharing options...
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