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Post your childs diagnosis!! - Page 26

post #501 of 735


I've been reading through this thread, and it occurs to me that I'll never post anything if I wait til I get to the end!!

We have Cameron, who is 6.5 yrs old. He was diagnosed at nearly age 5 with autism. He is quite high functioning. Main difficulties include relatively mild echolalia that tends to come out mostly at times of stress, SID that has gotten much better over time, attention difficulties, inappropriate social skills (getting better!), stimming behaviors and safety concerns. That all pales when I think he didn't speak at all until age 3!!

Now.. I'm frustrated with his school. I feel like they're pushing meds but I disagree (did a trial and didn't like side effects). They tend to emphasize the negative rather than the positive.. gah. I could go on. And on.

I'm expecting our second child any time now, due around Jan 15th.. I'll make a separate post of that and ask some q's in the appropriate section. Nice to find this thread though!!
post #502 of 735

My Special needs boys dx

Hi, I adopted 3 little boys at birth, the first one is Elijah 8 years old, he is dx with Fetal Alcohol Syndrome, Alcohol Related Neurodevelopmental Disorder, ADHD, ODD, PDD, mental disorders NOS, possible bi polar, Nicholas is 5 years old and he is a little guy who had the cord wrapped around him at birth, he has some speech delays, and is small for his age but a real sweetheart, Joshuah 5(no not twins 3 months apart)is my really tough kid,, Joshuah was born a Crystal Meth baby with Fetal Alcohol Effects, We call Josh the Parrott, the PR man and a the 40 year old midget. He will most of the time repeat what you said, has no fear of strangers, will try and charm you the first time he sees you and never ever stops talking!
post #503 of 735
Hey fellow moms. My third child and only daughter was diagnosed with Kaposiform Hemangioendothelioma at 6 weeks of age. She had dozens of blood transfusions, 20 weeks of chemo, a few months of steroids, and now she's doing really well. Soon we'll be starting with an O.T. to work with her on crawling and stuff since her leg muscles are kind of weak from all the darned prednisone.
post #504 of 735
PDD-NOS and possible seizure disorder for Caleb (3)
post #505 of 735
been reading the SN threads because I count our family in that category now - my almost 8 month old daughter has a malignant brain tumor - Atypical Teratoid/Rhabdoid Tumor... nasty business, this cancer stuff. No cognitive or developmental delays so far - just lots of special needs on account of the surgery, and chemo, and eventually (hopefully!) radiation and recovery...
post #506 of 735

Port Wine Stain and Sturge Weber Syndrome

Hi, My daughter is 3 months old today however was born 7 weeks early. She was born with Port wine stain that covers her entire face and part of her scalp on the left side. 3 days ago she started having seizures which landed her in a Children's hospital. She was also diagnosed with Sturge Weber Syndrome. I was wondering if there are any other parents dealing with the same issues. Thank you!
post #507 of 735

New to this board

My friend Phoebe recommended this to me, and I joined some time back. Just haven't had the chance to introduce myself. Plus, it just seems like a circus when I start explaining all our differences. And all our children. Anyway, here goes:

Josh, nearly 13yo, aspergers, nonverbal learning disorder, sensory integration
Breanna, 10, autism, apraxia, sensory integration
Emily, 9, social anxiety disorder, sensory integration
Rachel, nearly 8yo, and NT
Sam, 6yo, adhd, dermatitus herpetiformus
Dan, 4yo, aspergers, celiac sprue
Avari, 2, and thankful NT, just basically ticked that the world doesn't revolve around her. lol!
post #508 of 735

Our kiddos...

I have a 14yo son with childhood onset schizophrenia, he was dx'd at age 6. They are now looking at the 'adult dx' of paranoid schizophrenia. Schizo kids are also on the spectrum, he was originally diagnosed with severe autism at 3. He also has Tourettes, was failure to thrive (he's adopted), OCD, massive sensory issues, communication difficulties etc. as well as attachment disorder. My 17yo, also adopted, has severe attachment disorder, dyslexia, and bipolar. So far my 6yo is neurotypical, and we're due in April with number four.

I saw one other mom with a schizophrenic teen, anyone else? I'm looking for anyone who understands this life!!!!

Talk to you soon
post #509 of 735
My 17 mo old son (13 mo's corrected) was a micro-preemie. He's doing wonderfully considering where he started. We're dealing mild/moderate delays in his gross and fine motor skills as well as chronic lung disease.
post #510 of 735
Hi everyone,

My 2 1/2 year old son (never vaccinated) was recently diagnosed with classic autism. He is mostly nonverbal, demanding but very cuddly. He definitely has sensory issues. We haven't started any therapy yet, our choices are severely limited here. We have decided to follow a Son-Rise/Floortime type of approach in the home, but not nearly as intensive. I bought the Bounce DVD's I saw recommended here while lurking. We bought 35 different books we are plowing our way through. We bought the PEC's system, Boardmaker, Greenspan Floortime training dvd's, a series of ABA dvd's (though we decided against that method), and a bunch of other stuff. I am looking for speech therapist, and I would love a music therapist, but I don't think it's likely here. I found a Cranial Sacrial therapist but haven't taken my son there yet. Is anyone else living in latin america with a child on the spectum?
post #511 of 735
Hello. My DD is 13.5 months old and has Down syndrome. Thankfully she's doing really well and we haven't had to deal with any major health issues. As she gets older, we are noticing more of the physical and speech delays, though she's still on target for many of her milestones. She's our greatest joy!!
post #512 of 735
My son was just diagnosed with Velocardiofacial Syndrome, technically called 22q11.2 deletion syndrome. Other common names are: DiGeorge Syndrome, Sphritzen Syndrome, 22q Syndrome, and various combinations of cardial and facial (cardio facial syndrome, conotruncal anomaly face syndrome, etc) It's a deletion on his 22nd chromosome.

We were lucky to get a diagnosis at 11 months old, many others I know got their diagnosis much later. So far Connor doesn't appear to have any cardiac issues, we see a cardiologist next week for a full work up. His major issues are:

Swallowing issues, palatal dysfunction, low weight gain, small stature, small feet, Pierre Robin Sequence (small recessed lower jaw), ear deformity, conductive hearing loss, severe speech delay, slight gross motor delay, and laryngo/tracheo/broncho malacia.

Despite that impressive list, he's doing really well!! We're excited to finally have a diagnosis and will gladly talk to anyone else who has or suspects they have this syndrome.
post #513 of 735
I posted on page 23 that DS was delayed; this week he was "officially" placed on the spectrum. Now at least we have a direction to go in, to improve his communication.
post #514 of 735
I just stumbled across this website and thought I would join.

I have a seven year old daughter who still does not have a diagnosis. She has seizures, a small head, verbal apraxia, developmental delay, hypotonia, chronic constipation and an IGG deficiency. She appears completely normal, most people do not realize that there is anything wrong with her until they try to talk to her and she doesn't answer, but she comprends everything. Numerous doctors have not been able to figure out what is going on. My husband and I are both in the medical field and she has us all stumped.
Has anyone out there run across anything like this?
post #515 of 735
post #516 of 735

Nice to meet everyone

I am new to mothering.com. My son is 5 years old, and is Autistic. He was diagnosed when he was just over 18 months old. We have had him in Speech therapy, Occupational therapy, special needs playgroups, one on one therapy, ABA, etc. etc. He is currently in a wonderful preschool program for special needs kids through the public school system. There he receives speech and occupational therapy. His speech is close to a normal level. We are still working on answering "wh" questions (what, where, why, etc.). Recently he has been experiencing panic attacks, and behavioral issues that are uncharacteristic to him. Currently I am working with his teacher to help him through this.

Unrelated to my son, but also possibly beneficial to someone. I was born with exstrophy of the bladder. Several of the surgeries tested out on me are now performed on most children. For anyone out there that has a child born with Exstrophy of the bladder, I hope it gives you comfort to know that I am a 33 year old, healthy mother of two children.
post #517 of 735
Hi, I was wondering how you found an ABA therapist and what did you think about ABA?
post #518 of 735
I am new to this site and came accross your post. I know it has been a while since this post but my son was just diagnosed with pdd-nos and any and all info you may want to share would be so greatly appreciated.

post #519 of 735
I am new here. (Been a lurker for a couple months) My 5yr old son has Aspergers. We have a Medical diagnosis and are waiting for our school diagnosis. I am a para-pro at my boys school for an Early childhood special needs class and love it. I have learned so much.

I have loved being a lurker here. Just reading everone's post has made feel feel not so alone.

Thank you all so much.
post #520 of 735
Hi all, My name is Michelle I have 4 dd's (one is my step dd)

my 6 yr old was induced for IUGR/Faluire to thrive, she is still quite small for her age, tho advanced educationally she does have some severe issues with tantrums and behaviors she was dx with Mood disorder & adhd , and they say possibly bi-polar.. ped says she has typical middle child syndrome. She is in therapy but her meltdowns are getting worse (screaming, jumping, kicking walls, hitting her head etc.)

my 9 yr old has a sever metal/alloy allergey, we live as metal free as possible
she has to use platic lisverware, glass bakeware, wooden bed and foam mattress, our couch is the same.. I have to keep her jean buttons painted and I cover them with bandaids. she has meds and creams but she always has a rash. sometimes it gets bad and enters her bloodstrem which usually she ends up in the hospital drs say she my grow out of this so we are hopeful. She was devlopmently delayed as a baby she didn't crawl til 14 mts, and didn't walk til 18 mts I fully belive it was due to vax'ing and not knowing better. After she started walking she was fine, never educationally delayed (in fact she is a year ahead in school, she is very bright and a total tween drama queen LOL)

my 9 yr old sdd has learning disablities (we dont see her often but I hate to disclude her)

my 2 yr old is a peach, she exbits some of her 6 yr old sisters behaviors but I think that is because its what she sees kwim?

We are expecting #5 in Novemeber and thrilled
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