re: A list of Disorders.

my baby boy has spina bifida

My first son Damien had downs syndrome. He did not make it past 32 weeks when I was pregnant. The doctors believe that his kidneys failed. At the time we did not know that he had downs. I was just wondering if there is anyone else who has a child with downs or their child passed away. It has been almost 4 years and still have a lot of problems dealing with this.

my oldest son has congenital mega ureter and congenital megacolon on top of that he was also diagnosed with intestinal nueronal dysplasia and hydronephrosis of the right kidney...he has a stabismis and adhd with chronic high impulsivity....he has some tics my three year old has chronic asthma and has stopped breathing three times before and been hospitalized for upper respiratory infections...my 1mnth old son has multiple vsds(ventricular septal defects) and a post foramen ovale...with swiss cheese effect he will most likely be having heart surgery before he is three one of the holes in his heart is only 21 mm which isnt that big but were waiting to find out how big the others are...my oldest sons got a gastrostomy or mic key button and is antegrade dependent... any moms who can relate?

My son has been diagnosed with Goldenhar syndrome any one else out there who has any information on this would be great

My son has been diagnosed with hypoplastic left heart syndrome

have 3 boys all special needs... Jacob is now 17 with ADHD, ODD, OCD, Aspergars, Dyslexia, phonological disorder, Auditory processing disorder, A platelet disorder, excema, reactive airway disorder, major allergies, immuno compromised, cronice pain syndrome , tons of allergies , hearing loss and if i do say so myself he is one of the best young men i have ever met!.

Drew is 12 and has high functiong autism, sever spd, dyslexia, immuno compromised, occular albinisim, food allergies, hypotonia and can be such a joy to snuggle!.

Col is 11 and has primary auto immune deficancy, occular albinisim, hypotonia, reactiave airway disease, tons of allergies, and a heart of gold!


I also have a hubby with major medical issues.. heart and lung issues as well as mental health issues... and blessed he is here with us today to see the joy our boys bring us. Life is all about the little things that others take for granet!

Hi, my name is sarah. Me and my fiancé david both have high level asperges. To us its not a disorder its what's makes our lives fun and exciting.

My son, Judah, has SPD. I have RA and SLE.

Quoting KB*in*the*Sky*with*Juju:" My son, Judah, has SPD. I have RA and SLE."

I was recently diagnosed with RA, too.

Quoting ♥KRJ + Me♥:" I was recently diagnosed with RA, too. "

I was just diagnosed too! It's only been a few months for both my diagnosis! That's cool--not that we have it but we have something in common. Have you started meds for it yet? I'm doing research on them both. I already knew about them because just about everyone-my mom, aunt, grandparents, cousin-in my family have autoimmune disorders....I'm gonna PT you, if that's ok.

Quoting ♥KRJ + Me♥:" I was recently diagnosed with RA, too. "

I was just diagnosed too! It's only been a few months for both my diagnosis! That's cool--not that we have it but we have something in common. Have you started meds for it yet? I'm doing research on them both. I already knew about them because just about everyone-my mom, aunt, grandparents, cousin-in my family have autoimmune disorders....I'm gonna PT you, if that's ok.

Quoting KB*in*the*Sky*with*Juju:" I was just diagnosed too! It's only been a few months for both my diagnosis! That's cool--not that ... [snip!] ... about everyone-my mom, aunt, grandparents, cousin-in my family have autoimmune disorders....I'm gonna PT you, if that's ok."

I was diagnosed in November, and sent the paperwork to the Rheumatologist. The closest appointment they could get me in was in January. Then my husband was laid off, and we lost insurance. So, I was not able to keep my appointment. I then started working, and my insurance through work kicks in this month! So, I will be calling to set another appointment as soon as my coverage kicks in!

My uncle has RA, so it runs in the family. Other than that, I don't know much about it. I was hoping that seeing the rheumy would help answer any questions.

To be honest, finding out I had RA was terrifying. It made sense with my symptoms, but I still cried when I got the diagnosis. How were you diagnosed?

Please PT me! And I will PT you back. But, we are moving starting tomorrow, so if you message me, it will probably be a few days until I can actually respond.

By the way, my name is Alicia.
 

Quoting ♥KRJ + Me♥:" I was diagnosed in November, and sent the paperwork to the Rheumatologist. The closest appointment they ... [snip!] ... so if you message me, it will probably be a few days until I can actually respond. By the way, my name is Alicia.  "

Hi Alicia! I'm Kristel.  
It's nice to meet you, considering the circumstances....
I was diagnosed in February and it's kinda ironic because my mom was diagnosed not even a month before me.  
I'm still awaiting the rheumy appointment too. The last one my dr wanted to send me to was over 4 hours away; there was NO way I would travel that far with my son, especially just he and I! lol
I already had Osteoarthritis, DDD (degenerative disc disease), spinal stenosis, bulging discs and ligament and facet join problems with my back. After the MRI confirmed all this, I started having more problems so my dr did blood work and and I was RF positive, my ANA was elevated and my WBC count was very low, which is a complication of RA called Felty's syndrome.
I'm on pain medication but that's about it, no immunity drugs so far. She say if I didn't find a rheumy soon--I'm like you, I just got my insurance back and can now afford to see one--she's going to prescribe medication to up my WBC count. I'm interested to see what the rheumy does...
I PT you so hopefully we can encourage and keep up with each other's progress.
Good luck with your moving!

I'm not sure if things are still being added. But my son has symbrachydactyly. He was born without fully formed fingers on his left hand. At first it was thought that it was ABS (amniotic band syndrome) but it's not.

I am MORE than willing to talk with anyone if they need support or such if your child has or ends up with the same  

http://en.wikipedia.org/wiki/Symbrachydactyly