Re: signs

[Guest guest]

My sons PMG was found 3 weeks after birth at Riley hospital at 1st while inutero

his heart decelled they took him emergency c-section after a week in the NICU at

Cmmunity North they kept saying he was fine and healthy but he was not well we

got him home he was OK for 3 days then all of sudden he started crying and would

not eat he cryed for 24 hrs and it took me almost 2hrs to feed him 1 oz of

formula just so happend we had an appt with a pediatrician that next morning

well we got there and she told us that he was fine he was just having a bad day

we told her she was crazy so he was re-admitted into the NICU they kept saying

he was fine we didnt they did 3 cat scans and still said he was ok 5 days later

his heart rate dropped so they sent him to Riley hospital as soon as we got

there we got hammered with this it was scary his doctor said he had a small chin

and a floppy airway so they did a cat scan and they seen somthing abnormal so

they did an MRI that is when we got the diagnosis now he has a trach G-tube a

Nissen and has had 3 back surgerys in the last 4 months in the 1st 2 weeks he

had a stoke to the brain stem that realy messed him up in the 1st cat scans they

should have seen the PMG but they did not the doctor at Riley showed us the scan

it was like night and day.

Re: New to group and to PMG

My son's PMG was found accidently. He was 7 weeks early so they

thought most of his issues were typical preemie ones (hard time

eating, reflux, etc). At about 3 months his feeding got so difficult

that we were sent to a High Risk clinic for an evaluation. They said

he didn't have the proper oral motor skills to eat and he aspirated,

so we put in an NG tube. Then, at 4 months, he got very sick with

vomitting and diarrhea and was hospitalized. During that time he had a

head MRI for his opthalmologist as he was worried about optic nerve

hypoplasia. We found out his optic nerve was fine, but he had PMG.

The ball has been rolling since then

Good luck!

C

>

> I have a question for several of you. What symptoms did your little

> one have before you realized they had PMG? If they showed no

symptoms,

> what happened to cause you to find out? Thanks so much for the

> responses. You all have made me feel better already!

>

[Guest guest]

Hi,

I am Callista, I am new to this group. I am the mom of (3

months, DOB 09/07/05). She is the youngest of our four children.

She has three older brother, age 9, 7, and 3. All of her brothers

are completely normal and I had different pregnancies with the boys

as I did . My pregnancy with " Eva " , as we call her, was

complicated. I was sick the entire nine months and only gained 10

lbs. When I was 7 months along they found she had Left Ventricle

Dilation on her brain. We had more entensive tests ran with a

perinatologist and everything else looked normal. They also would

pick up a heart murmur one visit but not the next, and then again on

the next. When I was 37 weeks pregnant they did an emergency C-

Section because her head was measuring at 41 weeks, one leg was at

32 weeks and one leg was at 34 weeks. They said whatever was wrong,

that she would thrive better outside of the womb. She was born

09/07/05 weighing 7lbs, 6 oz, was 18 inches long and her head

measured a whopping 15.5 inches! Our entire world turned upside

down. She had wet lungs, respritory issues, (a.k.a., tachipnea),

PDA (Patent Ductus Arteriosis), splotchy skin all over her chest and

very visable mottling on her legs. She has a hemangioma

(birthmark?) on her neck and a two very small faint red marks on her

forehead. The RT hemihypertrophy was noticable immediately, although

they tried to calm me by saying it was adema and would go away (it

hasn't). There is a large space between her big toe and the rest of

her toes on both feet. She has a lot of hair on the right side of

her head and very little on the other. She had to be fed by NG

feeding tube for the first 18 days and I never got to breastfeed

because afterwards she always wanted to keep her tongue in the roof

of her mouth and had feeding problems. She eats like a horse now

though. She has an umbilical hernia. She also has

hemimegalencephaly, where the right half of her brain is larger than

the left, and polymicrogyria. Her head has frontal bossing and the

occipital area sags, this started 3 weeks after birth. It has

always appeared she has a hard time breathing and she gets congested

a lot with sinus problems. 3 since birth so far. At first they

diagnosed her with Klippel Trenauney Syndrome, but it has since been

changed to M-CMTC Syndrome. We take everything one day and doctor's

appointment at a time.

> >

> > I have a question for several of you. What symptoms did your

little

> > one have before you realized they had PMG? If they showed no

> symptoms,

> > what happened to cause you to find out? Thanks so much for the

> > responses. You all have made me feel better already!

> >

>

>

>

>

>

>

>

>

>

[Guest guest]

Callista,

I know where you are coming from. Reading this below sounds exactly like my

daughter. I had a horrible pregnancy with her couldn't keep anything down the

whole time. There were days that I thought I would die. They too noticed a

problem with her at about 20 weeks her 3rd and 4th ventricles were huge. So we

went to see a parnatologists and he would say everything was fine then we would

go to another check up and they would freak out again about her head. When she

was born it measured a whopping 41 cms I don't know how that converts into

inches but it was the biggest the hospital had ever delivered. Lucky me I

insisted on delivering vaginal. My ob was awesome but boy was I sore afterwards.

Emma too had a hard time learning how to eat when she was first born we went to

the doctor every week for weight checks and she was eventually put in the

hospital for three days because she was not eating. I too did not get to

breastfeed her because we had to monitor her intake so closely. By the

time they said it was okay my milk had all but dried up from the stress of

everything. She was diagnosed with PMG at 6 weeks old. She is now a little over

10 months old and doing really well over all considering the grim outlook that

they gave us at 6 weeks. Her head is now a whopping 53 cm big and like your

daughter her forehead is bossed. All of the classical signs of hydrocephalus but

none of the pain. We just met with a neurosurgeon about a week ago to see if he

could say why her head is growing at such a fast rate. He didn't really tell us

much other than he feels it is her brain that is growing and not fluid on the

brain. Whether that is good or bad I don't know. She too has a space between her

big toe and her other toes and a herniated umbilical cord. As far as eating is

going she is doing awesome. She seems to be able to take whatever we give her.

She is still behind as far as gross motors skills goe and gets farther behind

each month. Luckily they put us in early

intervention at 6 weeks so she has a therapist that meets with her twice a

month. Because of him she is doing things that she may never have done with us.

Hang in there we all know what you are going through to an extent. Just keep

taking it one day at a time and cherish every moment you have with your specail

angel We are alwasy here for support at anytime. This is a wonderful group I

mostly just read the postings but it helps to know others are going through

extactly the same things as us. I would love to talk to you if you feel it would

help. Good luck with everything.

Cassey

Mom to Emma 10 months old bilateral PMG

Callista Barham wrote:

Hi,

I am Callista, I am new to this group. I am the mom of (3

months, DOB 09/07/05). She is the youngest of our four children.

She has three older brother, age 9, 7, and 3. All of her brothers

are completely normal and I had different pregnancies with the boys

as I did . My pregnancy with " Eva " , as we call her, was

complicated. I was sick the entire nine months and only gained 10

lbs. When I was 7 months along they found she had Left Ventricle

Dilation on her brain. We had more entensive tests ran with a

perinatologist and everything else looked normal. They also would

pick up a heart murmur one visit but not the next, and then again on

the next. When I was 37 weeks pregnant they did an emergency C-

Section because her head was measuring at 41 weeks, one leg was at

32 weeks and one leg was at 34 weeks. They said whatever was wrong,

that she would thrive better outside of the womb. She was born

09/07/05 weighing 7lbs, 6 oz, was 18 inches long and her head

measured a whopping 15.5 inches! Our entire world turned upside

down. She had wet lungs, respritory issues, (a.k.a., tachipnea),

PDA (Patent Ductus Arteriosis), splotchy skin all over her chest and

very visable mottling on her legs. She has a hemangioma

(birthmark?) on her neck and a two very small faint red marks on her

forehead. The RT hemihypertrophy was noticable immediately, although

they tried to calm me by saying it was adema and would go away (it

hasn't). There is a large space between her big toe and the rest of

her toes on both feet. She has a lot of hair on the right side of

her head and very little on the other. She had to be fed by NG

feeding tube for the first 18 days and I never got to breastfeed

because afterwards she always wanted to keep her tongue in the roof

of her mouth and had feeding problems. She eats like a horse now

though. She has an umbilical hernia. She also has

hemimegalencephaly, where the right half of her brain is larger than

the left, and polymicrogyria. Her head has frontal bossing and the

occipital area sags, this started 3 weeks after birth. It has

always appeared she has a hard time breathing and she gets congested

a lot with sinus problems. 3 since birth so far. At first they

diagnosed her with Klippel Trenauney Syndrome, but it has since been

changed to M-CMTC Syndrome. We take everything one day and doctor's

appointment at a time.

> >

> > I have a question for several of you. What symptoms did your

little

> > one have before you realized they had PMG? If they showed no

> symptoms,

> > what happened to cause you to find out? Thanks so much for the

> > responses. You all have made me feel better already!

> >

>

>

>

>

>

>

>

>

>

[Guest guest]

Carly had feeding problems from the start. She was breech and delivered by

C-section at 39 weeks. She had a large head, but it was discounted because

my husband and I also have large heads. She had an apparent eye problem which

turned out to be Duanes syndrome type II. She had very low tone. Like a

previous email, Carly had a heart shaped hemangioma on the back of her neck and

two small and faint red marks on her forehead. She also had a faint red

mark on the top part of her left nipple. My pregnancy was uneventful except

for

a cold I had in the first weeks of my second trimester. I ran a high fever

which might account for the PMG. We have no real evidence to support any

reason for the PMG. Oddly enough I think I knew from early on in my pregnancy

that something was wrong. This was my first pregnancy and I chalked it up to

nerves. I now know my instincts are fine tuned.

[Guest guest]

It's good that they're doing some testing. It's hard when a child is verbal to

imagine that autism could be involved. Some of her issues are signs of autism.

But, the real tell-tale will be in the testing of her communication abilities.

Without communication problems autism isn't likely.

You can see what the signs look like by going to the Autism Speaks website.

They have videos on there that you can watch to see the contrasts between a

neuro-typical child and a child with autism.

http://www.autismspeaks.org/

Go to the Autism Video Glossary.

Best wishes,

signs

Thank you so much for allowing me to join your group! I have a few questions

regarding the signs of autism. I have an almost four year old niece who is

displaying a few signs of autism.

[Guest guest]

It's good that they're doing some testing. It's hard when a child is verbal to

imagine that autism could be involved. Some of her issues are signs of autism.

But, the real tell-tale will be in the testing of her communication abilities.

Without communication problems autism isn't likely.

You can see what the signs look like by going to the Autism Speaks website.

They have videos on there that you can watch to see the contrasts between a

neuro-typical child and a child with autism.

http://www.autismspeaks.org/

Go to the Autism Video Glossary.

Best wishes,

signs

Thank you so much for allowing me to join your group! I have a few questions

regarding the signs of autism. I have an almost four year old niece who is

displaying a few signs of autism.

[Guest guest]

Hey Jill, welcome. It sounds as if your niece may be a difficult case

to diagnose. Usually the higher functioning a child it, the more

difficult it is to get a correct dx because symptoms are often so

vague. I would suggest, though I know what a diagnosis can mean in

terms of services and acceptance, to really focus in on the symptoms.

Like with shyness/social issues, does she warm up to other children

after a while? Is she in any sort of a preschool setting? For my

youngest she couldn't be called on to answer questions without her

face turning bright red and cowering. They were good about it & didn't

call on her but after a while she started wanting to participate. A

year later she won't shut up, lol! She does not have autism, she was

just shy.

As to the being wrapped, ballet, etc. I would highly suggest you look

into sensory integration dysfunction. She might not be participating

in ballet for a number of reasons, but if she has proprioceptive

problems it might be contributing to a lot of frustration.

Proprioception for me is easiest to think about in terms of reaching

out to grab something. For most of us we may see a cup on the table

and innately reach out & grab it. For kids with SID they may see the

cup and want it really bad but can't quite figure out how to get their

arm to move to the same spot as the cup, grab the cup, and move the

cup. An occupational therapist trained in SID can give an occupational

therapy consultation to help with this. I would suggest contacting a

local ASA group and ask to speak with other parents to find a good one

in the area. SID would also explain why she wants her feet wrapped,

that could be a tactile issue which is also involved with SID, along

with vestibular stuff, which is sort of like inner ear; in kids with

SID they may feel dizzy or unbalanced doing things. All of these

sensory things work together, too, so it's sometimes difficult to know

which part needs help.

Well, I'm notorious for getting into " book mode " so I'll end it for

now, lol. If your niece does have autism, it sounds so very mild that

interventions might help her overcome any deficits in no time. I would

also suggest that you all consider whether or not to vaccinate her at

age 5. I know vaccines are controversial and all, but I would

encourage you all even if you do immunize her to fully research the

issue and be absolutely certain it's something to do. I've read about

several kids on the board who had just a scattering of issues and got

their 5 yr old vaccines and had big changes for the worse. That might

not at all happen with your niece but I felt a need to mention it,

just in case.

HTH,

Debi

[Guest guest]

Hey Jill, welcome. It sounds as if your niece may be a difficult case

to diagnose. Usually the higher functioning a child it, the more

difficult it is to get a correct dx because symptoms are often so

vague. I would suggest, though I know what a diagnosis can mean in

terms of services and acceptance, to really focus in on the symptoms.

Like with shyness/social issues, does she warm up to other children

after a while? Is she in any sort of a preschool setting? For my

youngest she couldn't be called on to answer questions without her

face turning bright red and cowering. They were good about it & didn't

call on her but after a while she started wanting to participate. A

year later she won't shut up, lol! She does not have autism, she was

just shy.

As to the being wrapped, ballet, etc. I would highly suggest you look

into sensory integration dysfunction. She might not be participating

in ballet for a number of reasons, but if she has proprioceptive

problems it might be contributing to a lot of frustration.

Proprioception for me is easiest to think about in terms of reaching

out to grab something. For most of us we may see a cup on the table

and innately reach out & grab it. For kids with SID they may see the

cup and want it really bad but can't quite figure out how to get their

arm to move to the same spot as the cup, grab the cup, and move the

cup. An occupational therapist trained in SID can give an occupational

therapy consultation to help with this. I would suggest contacting a

local ASA group and ask to speak with other parents to find a good one

in the area. SID would also explain why she wants her feet wrapped,

that could be a tactile issue which is also involved with SID, along

with vestibular stuff, which is sort of like inner ear; in kids with

SID they may feel dizzy or unbalanced doing things. All of these

sensory things work together, too, so it's sometimes difficult to know

which part needs help.

Well, I'm notorious for getting into " book mode " so I'll end it for

now, lol. If your niece does have autism, it sounds so very mild that

interventions might help her overcome any deficits in no time. I would

also suggest that you all consider whether or not to vaccinate her at

age 5. I know vaccines are controversial and all, but I would

encourage you all even if you do immunize her to fully research the

issue and be absolutely certain it's something to do. I've read about

several kids on the board who had just a scattering of issues and got

their 5 yr old vaccines and had big changes for the worse. That might

not at all happen with your niece but I felt a need to mention it,

just in case.

HTH,

Debi