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An updated "Post Your Child's Diagnosis" - Page 4

post #61 of 116
New here...I don't know why I never came in this forum...

I am the soon to be adoptive mother of two sweet twin 16 mo. old boys. They have been living with us since they were almost 8 mo. old.

Baby K - Tracheolaryngomalacia, reflux, chronic lung disease due to multiple aspirations following supraglottoplasty, hypotonia, bi-lateral hearing loss, global developmental delays, fed fluids through G-J tube. He is happy, interacts well, and the sweetest baby boy you ever met!

Baby I - Global Developmental Delays, reflux, constipation, weak swallow. This guy, though usually healthier is our "harder" baby. He is a pretty high needs, fussy fellow. He has some days where he is cognitively "with it" but some days you can't make eye contact or get him to interact. We just had our first meeting with the neurologist and have an EEG scheduled for next week.

And also mom to my sweet five year old M. She is spunky, never been sick in her life, and very smart.

I love my kids.
post #62 of 116
HI guys!

Dd1 (8) has no special needs

Dd2(11 months) has Tetralogy of Fallot with Pulmonary Stenosis and DORV (doubel outlet right ventricle). Shes had 2 open heart surgeries with no plans for more.

She also had Grade 5 VUR (kidney reflux). Her urologist is waiting on surgery til 2 or 3 but last time we had a renal u/s there was NO kidney dilation. Means it might be resolving on its own!

She also has mixed hearing loss in both ears. She wears hearing aids. (I use the term "wears" very loosely, she HATES them. We are doing some sign language and she signs mom and dad now!

Oh! and she has a gtube. She was out of it for so long int he NICU, she never learned to eat. Now she has a swallowing aversion and I believe it came from being scoped by the ENT with an adult size scope last time she was in the hospital. She was eating before she went in, now, refuses to swallow. (loves to eat then spit out)

Has slowly resolving GERD. Was puking about 6 to 8 times a day, 30ml each time. Now its once or twice a day 20mlish.
post #63 of 116
I have 4-year-old twin boys, former preemies (27 wks).

C had an interventricular hemorrhage (stroke) shortly after he was born, and he developed PVL (brain damage). He has some gross motor issues, but his main diagnosis is PDD.

D has SPD, maybe ADHD/anxiety, CAPD, etc. Suspected hearing loss.
post #64 of 116
Hey, new around here

DS1- Adopted at 24 months from Ethiopia, anxious attachment, PTSD and now confirmed SPD. We're starting OT on Weds and are hoping to see progress soon (oh please oh please!).

DS2- Adopted as a newborn domestically, so far neurotypical though he doesn't sleep well, has reflux, and is a big fusspot about being put down ever (Luckily I'm a babywearer ). We know he had some exposure to nicotine in utero but so far don't anticipate any issues regarding that.
post #65 of 116


Hi! I'm a newbie. My son is almost 3 and was recently diagnosed with PDD-NOS. It's a temporary diagnosis for 6 months. He starts seeing an OT this week. I'm very new to that dx, so I've got much to learn.
post #66 of 116
I realized it had been way too long since I did one of these threads, so I tried to find the most current one. I realized it when I posted a thread about River and only Ally knew any background.


Janelle-7 She has no current diagnosis, there was a point when our ped thought she had mild cerebral palsy due to poor upper body strength/tone, but I refused doing an mri/cat scan and it's no longer an issue. We've also had a diagnosis of PDD-NOS which I don't believe at all (this was diagnosed at her sleep study...and since it was part of a research project we didn't get the results till 18 months after her follow up study) and every other teacher suggests she may have ADD...her pre-school teacher thought she was fine, just bored and gave her harder work and that worked. Her first K teacher in Michigan thought ADD, her K teacher in Colorado thought fine, just bored, gave her much harder work. Her first grade teacher thinks ADD, her G&T teacher who she goes to for pullouts thinks bored... Since the teachers who give her harder work get positive results, I'm assuming they are right. She's also been diagnosed failure to thrive more times than I could possibly count, but has been moving up the charts consistently since getting her tonsils out (hence the sleep study) at 3 years old and hasn't had the FTT label since then!

Kincaid-6 He had seizures from birth till 2 1/2, we didn't get any seizure control till 18 months, and he has a global developmental delay of 18 months...which, when we started with EI at 15 months old was HUGE, he wasn't even testable till 2, and at that point had a 75% delay, now at 6 it is a 25% delay, by 12 it will be 13% if we stay on track (no signs that we won't) which will be well within normal deviation. He was diagnosed with apraxia of speech at 18 months, global dyspraxia at 2, ASD at 2 1/2. He lost the ASD diagnosis this year at his 6 year IEP, though they did say they wouldn't be shocked if he gets an aspergers diagnosis at 9 or 12, but for now, no social issues what so ever, so no autism, he still has global dyspraxia that for him includes gross motor, fine motor, articulation (he has horrific articulation), sensory issues and an auditory processing disorder (his speech therapist and school psych showed me this year that he is now a pretty proficient lip reader...I had NO idea, so now that we know he has to see us when we talk to him it's been HUGE). He's a great kid though, has lots of friends, plays great with others, is hardly ever in trouble for any reason (and only ever at home, he has never needed to be corrected at all by a teacher since he was 2 years old, and he's been in school since then), loves my little ponies more than anything else in the world... He is doing things now that the doctors and such we saw at 2 and 3 didn't think he would EVER do, and he's only a kindergartener, I couldn't be more proud of him!

Travis-2, will be 3 in August. Umm...this is the one I dropped the ball on. IMO he was ok, he didn't talk, but he knew what we were saying, and he did everything else late as well, but then did it all at once...like he ran the first time he walked... So I didn't get him evaluated till he still had no words at 18 months, we started speech at 20 months old, and saw no progress, plus his ST saw a lot of other issues, so when we had a re-eval at 28 months old he was officially diagnosed with autism, he now gets aba therapy in our home for 6 hours a week, with DH and I doing another 12 hours a week with him, he also gets OT, ST, and will be starting feeding in august...he's a good eater, but he doesn't chew right and over stuffs his mouth, which causes choking/gagging/vomiting issues at times. He also 100% fails his hearing tests, we have to see audiology about this, as we've exhausted our ped, EI, and ENT's resources, we really thought it was due to fluid build up (he had a TON when they put in his tubes) but it hasn't made any difference. My gut says it's just like Kincaid, an auditory processing issue and there is nothing we can really do, but we'll see. He has 1 actual word (water) but he uses 30 signs spontaneously and will mimic about 100 others if you do them first. He's also amazingly good at problem solving...he can pick a lock with a pacifier... We put up new gates last night and 6 hours later he had figured out how to use a toy stuck through the holes in the gate to open a kitchen drawer, then he used that to climb over the gate... He's also tiny, did get 1 failure to thrive diagnosis that the specialists didn't agree with when he was 7 months old, but he's been on the same non-existent curve since about 4 months old, and grows consistently and at a proper rate, so there is nothing to worry about there as far as everyone is concerned now. He's a snuggly little guy, sweet and adorable, very very high maintenance, but cute!

River is 1, so far there are no warning signs for autism, he points, shows joint attention, has about 7 words that he uses correctly and spontaneously and about 10 signs, he is VERY social and outgoing. His issues are all medical... he has had numerous failure to thrive diagnosises in his 13 months, and unlike his siblings, he doesn't grow consistently, he will have a month or so where he gains 1lb per month, then he will lose 8oz and plateau for months at a time...he also has had 11 separate viral infections in the past 3 months. He was admitted for a full diagnostic work up on may 19th and we were discharged on the 24th. From that we know 1. he takes in enough calories for a 1 year old, and way more than a 13lb kid should need in a day. 2. he has very low growth hormone levels. 3. he has a lowered/compromised immune system now, but we were told these tests are not that accurate when a kid has been sick in the past 30 days, and really not accurate if they've been sick for basically the past 90 days straight, since that alone can give you a lowered immune system that would just be temporary, so we have to retest him once he's went 30 days with no fever...which at this rate will be never. 4. his kidneys are small for age and small for his overall size and misshapen, but except for a low bicarb level (that came up with 2 days of treatment) the are functioning 100% normally, and even that could be caused by nothing but the small size, as his bicarb level was still within normal range for a 6 month old. 5. his hands and feet are the size of an average newborn where as the rest of him is between the 4 and 6 month age range size wise... Genetics seems to be 100% sure they will be giving him a diagnosis of russell silver syndrome at our follow up in November they are just working on ruling out everything else right now, our ped isn't as sure, she thinks something else will come up on the array due to the # of really small people in DH's family.... He is 13 1/2lbs now at 13 months old...though since he caught a stomach bug on tuesday he's probably down back to right around 13lbs again.
post #67 of 116
My son has no diagnosis, and at the moment I`m not sure we will try to get one either. (Long story.)

But it`s pretty clear that there is "something" about him, anyway. He has anxiety, both the panicky kind and general anxiety. He has sensory issues, too. And he shows signs of OCD, mostly triggered by stress. He also shows quite a few signs of Aspergers. (My mom is pretty sure he has it. She works with teenagers with Aspergers, and says she sees it in him.)
He is 9 YO; and homeschooled at the moment. School brings out the worst in him. He triggers easily, and the environment at school made him waaay anxious, stressed, OCD`ish etc.
post #68 of 116
Hi I have a 3.5 year old DS who was just diagnosed with ASD. We've suspected for about 6 months that he had asd, but finally have the diagnosis now. He was pretty nonverbal at age 3, but has gained a lot of words since then . He's got quite a few sensory issues going on as well...he's a major sensory seeker which is very challenging at times. He's creative, loves music and art, and is the best snuggler.

I also have a 1 year old NT DD who is a joyful little spitfire!
post #69 of 116
DS born 5/07, dx'd Autism Disorder 4/10, the glaring issue is his speech delay.
post #70 of 116
Originally Posted by moongazer View Post
My DS is the youngest of 5 and just turned 1. He was born with EA/TEF Type D. He had repair surgery when he was 24 hours old but has done really well since. He still has tracheo/broncio malacia, a partially paralyzed vocal chord and some gross motor delays.

My youngest was born with EA/TEF Type C. Repair on day 2 of life, has had 5 esophageal dilations in his 1st 6 months...none since! He is 20mo old & is an awesome baby. He also still has tracheo malacia. Hospitalized in December for pneumonia, and another pneumonia last week, but no hospitalization this time. He is doing well over all, does have choking episodes..stressful but we are working through it. He is such a joy to us & his big sisters
post #71 of 116
*bumping up for new parents*
post #72 of 116
DS is 9 months old, gross motor and speech delays, sensory processing, he stimms, and has a Chairi malformation. He has advanced fine motor skills and an attention span unseen in babies his age. He is super intense and focused. He gets PT, OT, and ST. Seeing the developmental peds Thurs.
post #73 of 116
Not new here but updating my initial post. My oldest is officially diagnosed with bipolar disorder, separation anxiety disorder and generalized anxiety disorder. He is on a combo of meds that are making his life manageable, but as it will always be with his conditions, it is not perfect. The update is that my youngest is now almost definitely going to be diagnosed with the same conditions. Her symptoms are the same, if not worse, than my son at her age. Life is very, very stressful right now as we are hoping to hold off on meds until she is older. Also the place where my oldest was diagnosed will not take them until they are 6 so we have to wait.
post #74 of 116
I have not posted too much on the SN forum, but i do read a alot.

I have a son, 14 months old, with mild Cerebral Palsy. He has PT, OT and ST, as well as a developmental special instructor. He is doing amazing. He has caught up on his physical development, and is only about a month behind. We are just starting speech now. He has no words, no constanant sounds. no mimicking us. There is no communication on his end, so life has been a big guessing game, in trying to find out what he is needing. He is sensory seeking. He has yet to sleep thru the night. he wakes about 10 times a night still.
With all that said, he is a miracle to us. He was one of 5 boys, i have had, and the only one that survived the pregnancy. That alone, tells me he is a miracle. Then, when he was 2 months old, I found him totally limp and blue, and not breathing in the co sleeper. and he woke up after i shook him. a lot. he had seizures that caused him to choke and aspirate. and a couple have been deems acute life threatening event.

I also have a daughter that was just diagnosed with OCD, and we have known she has Aspergers, for about 4 years. She is 8 years old, and she is amazing. She is sweet, and sincere, and so very compassionate. She has obsessive thoughts about being kidnapped, and she has obsessive thoughts about me getting hurt, or killed. She has drawn pictures recently, of these people that will hurt us. She has compulsive behaviors that include cleaning her room, organizing her dresser. and keeping her shoes perfect. We will be starting cognitive behavior therapy and exposure and response prevention, therapy. She will also be seeing a psychiatrist in Ocober, to possibly start her on medication. The ocd is really making her life difficult. I never wanted to medicate her, especially so young, but with her struggling the way she is, i am not sure what other options i have.
post #75 of 116

I have 2 boys my 6 year old is typical with his only problem being that he gets migraines and he wears glasses since he was 2.

My 3 year old is the reason I am here. He is currently diagnoses with, Sensory processing disorder, anxiety disorder, ataxia, hypotonia, a brain injury, dyspraxia, he is nonverbal, globally delayed. And he is undergoing genetic testing and have not gotten the results back yet. He gets crontic recurrent sinus infections at least once a month and has had two sinus surgerys. He use to get cronic ear infections which he has had 4 sets of ear tubes and these last ones seem to finally be working. he has only had maybe 3 ear infection in the last 6 months so that is finally doing better. He also has tremmors that he takes propanolol for and that seems to help. He wear ankle braces for low tone and low enderence and pronanting and they help him alot. He has been in pt since he was 4 months feeding therapy since he was 4 months ot since he was 8 months and speech since he was 16 months. He just aged out of 0-3 so he will be starting in the school district in sept. we still have a lot of unanswered questions with him and if there is more going on hopefully genetic testing will give us the answer to that.
post #76 of 116
Since it's been a while:

William is 7 3/4, his primary diagnosis is autistic disorder. He was diagnosed with pdd-nos at 4 and was pretty severely delayed. He has made huge strides since then. He is also diagnosed with spd, anxiety disorder, articulation disorder, adhd, and has visual difficulties. He has some cognitive delays and is suspected as having bipolar disorder. He also has allergies and is anaphylactic to tree nuts and latex. Currently he takes zyrtec, risperidal, and adderal and the meds have calmed him down and brought down his level of violence. They have also stopped most of his stimming behaviors. He is in a special day class and gets private social skills training.

Parker just turned 6 and was diagnosed with pdd-nos at age 3. He is really bright and was very verbal. He has a lot of social anxiety and does not talk much to non family members. He has a slow processing speed. He is currently mainstreamed and is entering 1st grade. He is flagged at school to be watched because it is suspected that he will have learning difficulties down the road. He also receives private social skills training.

I have Ehlers-Danlos syndrome and have dealt with being physically disabled for as long as I remember.
post #77 of 116
My son had another full evaluation by a NeuroPsych. I get the results tomorrow (Monday.)
post #78 of 116
My son, David, has Down syndrome. He's just one month old, and I did not get the diagnosis until he was born, which was spectacularly hard at first. Now it seems to have faded away, and many days I have trouble even remembering anything is different about him, because he seem so "normal" and the most wonderful baby there could be. We've got early intervention services coming in and loads of tests to do in the future, and I have to say, though I know they are necessary, right now they feel like an annoying distraction.
post #79 of 116
Well, our diagnoses are changing. DS has been labelled FTT by his pedi GI and still suffers from GI distress. He also suffered vaccine-injury at 7 months, which led to moderate-to-severe autistic-like symptoms. Additionally, his pituitary gland stopped functioning which led to multiple endocrine hormone deficiencies.

We've had tremendous recovery with biomedical interventions for his autistic-like traits, but he still frighteningly regresses when sick. He still has some stimmy behaviors as well as some peculiar compulsions. We've also recently started Traditional Chinese Medicine techniques to treat his GI issues and for added aspects of detoxing his body.
post #80 of 116
I'm going to be a little vague but here goes:

* Autism Spectrum
- Sensory Processing Disorder
- Low tone


* "gifted"

All the above was diagnosed by a NeuroPysch who did extensive testing.

* Immune Deficiency (diagnosed by an Immunologist.)
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