NMR: Need your expert opinions

[Guest guest]

I know as a mom trying to unravel the mysteries of what our children have before we had a diagnosis, that we all did a LOT of research. Our new baby, True, has quite a bit of physical anomolies and I am trying to piece them together. He's been referred to Genetics and Orthopedics but the appts aren't for a while yet. Any advice on what to look for would be good.

I am including pictures of his anomolies, except for a picture of his asymetrical skull/head/face and he also has GERD and swallowing problems at times.

notices the knot above my thumb. Docs are calling it subcutaneous cyst but they said they really don't have a clue

same place, different foot. Its bigger on the right. His head is bigger on the right too. Also he prefers to look on the right and has to work to look on the left.

Left side...green arrow shows a bump on his rib and white is a sunken place right under it

same thing, different angle

his spine gets larger about half way down. someone told me to look for a dimple or something, not sure this is one, but just in case someone knows....

His toe pads are triangular (which is nothing by itself but maybe a clue)

mom to (07.04.96-05.26.03) with Mitochondrial disease, complex I and IV....Gaige, 5, with High Functioning Autism...Bliss, 3, with very very mild cerebral palsy ...True, born 01.18.05, with GERD and married to one swell man! www.LifeofLoveProject.orgwww.debwells.com

[Guest guest]

Deb. :looks like some sort of cysts to me. guess they need to be evaluated.. if it is liquid or bony or whatever else. Love ya, Kathy

[Guest guest]

Deb. :looks like some sort of cysts to me. guess they need to be evaluated.. if it is liquid or bony or whatever else. Love ya, Kathy

I have no idea about the feet things...they don't really feel like cysts...more tissue-like but who knows? There are some spinal deformities (like Tethered cord syndrome) that can cause foot issues like this. The rib thing, she said it could be a calcification...our pedi wanted to do an xray of the ribs and CT scan of his head. However, she is a resident and her attending had a more wait and see approach. We found a great geneticist here with Gaige (unfortunately it was after had died) who is going to see him in May...she will order everything. I am going to be writing up a report to send to her with these pictures so she can think ahead. She's really great so I am sure she will have a lot of thoughts and ideas...AND if she tells me its nothing, I will almost certainly believe her. (I have had too many docs tell me in the past that was going to be fine--pre-diagnosis--to listen to that stuff.)

mom to (07.04.96-05.26.03) with Mitochondrial disease, complex I and IV....Gaige, 5, with High Functioning Autism...Bliss, 3, with very very mild cerebral palsy ...True, born 01.18.05, with GERD and married to one swell man! www.LifeofLoveProject.orgwww.debwells.com

[Guest guest]

Hey Deb,

Just wanted to weigh in on True. I don't recognize any of the issues you've pointed out but wanted to tell you that it could be the "dimple" on his back is a pilonidal dimple. Mitch has one, looks like a deep pin-hole kind of opening. My uncle also has one, and his looked sort of like the trough depression your pic showed. I'm including a link to webmd on it. Maybeit's a jumping off spot?

WebMD with AOL Health - Pilonidal Disease -- Symptoms

love

ruth

mom to Mitch (10 on this Tuesday...and survivor of his "skateboard" b-day party) and Lexi (now 7 and my princess), both mito affected and my treasures

[Guest guest]

I really have no advice on this one. Just wanted to let you know that I'm praying all this turns out to be a simple thing. I'm sure you already looked it up, but can some of this be from the sickle cell disease? Best wishes.

Download your favorite songs at MSN Music - Over 1 million songs for just 99¢ each

[Guest guest]

Sorry, no help here with what you are seeing, but I just wanted to

again say how neat it is to know, how even after losing , that you are

still open to caring for kids with special needs and adopting them.

There is such joy in caring for these little ones, isn't it. I am sure many

think we are crazy to purposely choose to adopt a child with a disorder,

but, if we don't, who will? And if you have the knowledge and ability to

care for them, and the desire to, then more power to people like you,

, and others like you.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

Re: NMR: Need your expert opinions

>

>

> In a message dated 4/3/2005 1:43:31 A.M. Central Standard Time,

> KAFoley2@... writes:

>

> Deb. :looks like some sort of cysts to me. guess they need to be

> evaluated.. if it is liquid or bony or whatever else. Love ya, Kathy

>

>

>

> I have no idea about the feet things...they don't really feel like

> cysts...more tissue-like but who knows? There are some spinal

> deformities (like

> Tethered cord syndrome) that can cause foot issues like this. The rib

> thing, she

> said it could be a calcification...our pedi wanted to do an xray of the

> ribs

> and CT scan of his head. However, she is a resident and her attending

> had a

> more wait and see approach. We found a great geneticist here with Gaige

> (unfortunately it was after had died) who is going to see him in

> May...she will order everything. I am going to be writing up a report

> to send to

> her with these pictures so she can think ahead. She's really great so I

> am

> sure she will have a lot of thoughts and ideas...AND if she tells me its

> nothing, I will almost certainly believe her. (I have had too many docs

> tell me in

> the past that was going to be fine--pre-diagnosis--to listen to

> that

> stuff.)

>

> mom to (07.04.96-05.26.03) with Mitochondrial disease, complex I

> and

> IV....Gaige, 5, with High Functioning Autism...Bliss, 3, with very very

> mild

> cerebral palsy ...True, born 01.18.05, with GERD and married to one swell

> man!

>

>

> _www.LifeofLoveProject.org_ (http://www.lifeofloveproject.org/)

> _www.debwells.com_ (http://www.debwells.com/)

>

>