An updated "Post Your Child's Diagnosis" - Page 3

[NightOwlwithowlet]

My son is seven and has been diagnosed over the years with PPD-NOS with MR, autism, selective mutism, ADHD, SPD, apraxia, anxiety, gifted and probably the most accurate diagnosis "Well a little from column A, a little from column B and some from column C, if only we knew what column C was..... So we'll call ADHD with an expressive speech delay and some aspects of SPD."

He's a very smart and funny kid. He has friends, loves our dogs, is all over the place academically, is a video game fiend, and refuses to eat cooked onions, but loves raw ones. Oh, and he has milk allergies.

[jondee0]

Two of our nine kids are extra-unique. Our 13-yr old daughter has congenital hydromyelia (essentially, an abnormal enlargement of the central canal of the spinal cord, which caused under-development of the nerves to her limbs and, to a degree, her trunk) and now has scoliosis, most likely due to the spinal cord issues. We have a consult at the end of March with her ortho to discuss spinal fusion surgery. She uses a wheelchair 100% of the time, and is a deep thinker, lover of all things Twilight, and homeschools. She's pretty cool.

Our 11-yr son came into the world with Down syndrome, and later picked up an autism diagnosis, as well. He is non-verbal, but communicates effectively with PECS and is experimenting with a voice-output device. He does a lot of stimming, and we have to redirect some self-injurious behaviors. I can't imagine homeschooling him; he's in a self-contained class for kids with significant learning challenges at a local elementary school. He is probably the happiest person I've ever met; no disappointment lasts long, everyone is a friend, and the smallest of things can bring a huge smile. He's pretty cool, too.

Joni and kids, incl. Michaela , 13, w/funky spinal cord, and Gabe , 11, w/Down syn. and autism

[k13]

Hi there all...

I have an 8 y/o daughter diagnosed with ADHD/ODD and probably some sensory stuff.

I have a 1 y/o daughter who is also extremely active/ high needs and is sensitive to at least gluten.

I also have a 13 y/o daughter (who has a different bio dad) she was an easy baby with no special needs...

They are all amazing and bright girls!

[remonb]

My daughter is 6. She has been diagnosed as Cerebral Palsy Spastic Diplegic (legs). Other diagnosis include: oral aversion, dysphagia, and developmentally delayed, and non-verbal. She is 100% g-tube fed and uses a wheelchair to get around. She has also been termed as self destructive because she likes to hit her head when she gets upset but the developmental ped doc just think she likes the sensation of it but I think he's wrong. Other than that she loves to give hugs and kisses to anyone who would ask. She also likes books. Even though she can't read she likes to flip through the books and then rip them apart. I guess she likes the feel of paper. She has been in PT, ST, and OT since she was about 6 months old. We have also tried the Kennedy Krieger Institute for the feeding issues but she didn't do so well. I'm hoping that she will be able to get back in there one day.

[Lollybrat]

DS will be 6 next month. He has highfunctioning autism with hyperlexia and dyspraxia. He is in the autism classroom at school and gets ST, OT, and APE. He is academically advanced, but very delayed in language (pragmatics and auditory comprehension), social skills, adaptive skills, motor skills, and self-control. Additionally, he has a form of albinism and has various vision issues due to that: extreme farsightedness, extreme astigmatism, reduced visual acuity, photosentivity, intermittent strabismus, and amblyopia. He is a visual learner with a mild visual impairment.

He is the light of our lives and a wonderful, sweet, funny, little boy!

[EarthyMamaofDaisy]

Originally Posted by 2boyzmama

Connor is the main reason I come here, he's 3 (next week!) and has a chromosomal deletion 22q11.2, a syndrome called Velocardiofacial Syndrome or DiGeorge Syndrome.
looking into it.

My Connor is almost 3 (May 8th) and he has 22q11.2 Distal Deletion. Not the same as VCF or DiGeorge though. He has a deletion in chromosome 22 but his deletion is more distal towards the q terminus. He is the 10th reported case of this type of deletion. He also has multiple heart defects, feeding/swallowing issues, growth retardation, developmental delay, microcephaly, reflux, and constipation. He's had one open heart surgery and will need one more, but we saw the cardiologist today and his heart has not gotten any worse since his last echo last June

[2boyzmama]

Originally Posted by EarthyMamaofDaisy

My Connor is almost 3 (May 8th) and he has 22q11.2 Distal Deletion. Not the same as VCF or DiGeorge though. He has a deletion in chromosome 22 but his deletion is more distal towards the q terminus. He is the 10th reported case of this type of deletion. He also has multiple heart defects, feeding/swallowing issues, growth retardation, developmental delay, microcephaly, reflux, and constipation. He's had one open heart surgery and will need one more, but we saw the cardiologist today and his heart has not gotten any worse since his last echo last June

Wow, small world!!

My Connor has some of the same issues, but no cardiac (a miracle!!) and add immune deficiency, hearing loss, apraxia, and pulmonary issues (laryngo/tracheo/broncho malacia and reactive airway).

[joyluc]

My DS is 13, he has had depression for the last several years, a year ago he was assessed at high risk of hurting himself or his stepfather. He was in counseling with a therapist he 'worked' and never let in until November when he took an overdose . He recovered with no long term damage.

He was initially diagnosed as bipolar and started on lithium and other meds. I read a lot about bipolar and didn't see the behaviors they described. He has since been dx'ed by another p-doc and his current therapist as Major Depressive with anxiety. He is having a hard time going to school, he is gifted and really bored at school so he focuses on the kids who really bother him.

He is a great kid who is trying hard to figure out how to live with all these changes.

[SoCaliMommy]

My 6 year old is currently being evaluated by the school,suspect she has ADD and she has speech problems, she also talks about things that happened years ago as if they happened very recently. We have a meeting set for the 17th to go over the results of the evaluation. We have seen a private psychologist that her dr highly recommended and we see him on April 8th since he wants to see what the school is doing to help her before he will preform any testing to lead toward a diagnosis for her.


I also have a almost 4 yr old who loves to line up cars when playing with them and has developed a issue with tags he can't stand having tags inside anything.

[BostonianBaby]

DS is a little over 2 and was diagnosed with ASD in November. He is cognitively advanced and his developmental ped and therapists predict he will be high-functioning, though he's still nonverbal. His sensory seeking has gotten more intense recently but seems to wax and wane. He's an adorable little bundle of energy who loves cars, books and puzzles. On the whole I feel we're very lucky.

We started him in 40 hrs/week of ABA therapy back in January and have seen amazing results: increased and sustained eye contact, imitation, social engagement, non-verbal communication, pretend play, and we're just now seeing some progress with speech. He's also in 2 hrs of OT and 1 additional hr of speech weekly.

Other issues include reflux, chronic ear infections, sleep disturbances (I consider myself blessed now that we have only one 2-hr. waking) and most recently, chronic strep infections. He had ear tubes placed last May.

We are GFCF and I also cut out corn and tree nuts after seeing connections between behavior/health issues and those particular allergens. We have upcoming appointments with: an allergist, a autism clinic specializing in biomedical interventions, and a geneticist.

[BookGoddess]

*bump for new parents*

[pimms]

My son is now 6 and has CHARGE Syndrome. Some of the medical issues we've dealt with are a heart defect (TOF), bilateral colobomas (retinal), hydronephrosis, trachealmalacia, intestinal malrotation and I feel like I am forgetting a few. He's had three surgeries and is globally delayed. But his is in a 1st grade integrated inclusion class in public school. He get ST, OT and PT regularly. His main areas of need right now are his experssive language skills/articulation/oral motor control. And his balance/coordination. We are on the cusp of some minor behavioral issues, lack of focus/impulsive behavior/attention span. Just starting to sort out some of that and what it normal or not, as it is impacting him in the classroom.

[JessicaS]

My child has Noonan Syndrome.

He has two VSDs, Pulmonary Valvular Stenosis and Stenosis of pulmonary artery.
He also has Von Willebrand (which is a common bleeding disorder) but we don't have all that testing finished yet.

[kalynnsmom]

Hi, I'm Celeste and have 3 kids:

Kalynn, 7: Neurofibromatosis Type 1. She has a large plexiform tumor underneath her tongue which raises up her tongue to the left side. Causes some articulation problems. Has an optic glioma (tumor on her optic nerve). She also has severe ADHD-combination type. I am pretty sure she has some sensory issues. She also has some visual processing problems which causes issues with her handwriting, which I'm trying to get her help now.

Twin boys:
Ryker 3: Neurofibromatosis Type 1. Developmentally delayed, speech delayed.

Ronin 3: Speech delayed and developmentally delayed but not as behind as his brother.


Both boys are in PPCD and doing very well.

[isisreturning]

My DD's special needs were caused by treatments she received in order to make an aggressive form of brain cancer go away. She has oral aversion (100% g-tube fed), moderate to severe hearing loss caused by chemo drugs (she wears hearing aids and we are learning & teaching her ASL), significant receptive and expressive language delays, and some relatively minor gross motor delays. Time will tell whether radiation has caused any additional cognitive/learning delays. DD is almost 3 now and we are simply delighted that she is alive. Now that we seem to be out of cancer-land, we are muddling along in specialneeds-land, and learning as we go. She is awesome, spunky and an expert climber.

[OhMyMama]

ds age 7 - adopted -Moderate MR due to Drug/Alcohol exposure in utero, not classic FAS. Tramatic Brain injury at 12 mos, Seizure Disorder. Functions at a 36 mos level.
dd age 10 - bio - Aspergers, ADD

[moongazer]

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.

[jen&james]

I have a almost 5yr old DS diagnosed with SPD and CAPD. His sensory issues have been there since the beginning but the auditory stuff has just become more apparent in the last year. Althought he was delayed I just thought he would grow out of it. He is sensory seeking and has some large and fine motor issues. He is going to ST and OT and also a gym class for kids with sensory needs. He is like a sponge and is above average in his class. He also has a love and interest in foreign language and always seems to know something I don't

[blackapple]

My son and I both have Ehlers Danlos Syndrome. We both have the typical symptoms, mainly joint hypermobility and hypotonia. He is fairly delayed gross-motor skill-wise and we are just now getting our official diagnose, and I hope the approaching therapies will help him. He has a typically-developing twin sister. He also has signs of IBS, he has flat feet, over-pronation, crossbite and a high-narrow palate, and some speech impediments from his palate. They were early, and though his sister was fine, he nearly died due to unexplained RDS. I recently found out he had acute chorioamnionitis and sudden-onset-sepsis which kinda makes me mad, I ASKED specifically about that and was told no, they had no idea why he was so sick. Maybe wires got crossed I guess, but it seems to be very pertinent info to me!

Regardless, we are on the right track now and I hope he doesn't have the problems I do.

[SpottedFoxx]

Hi all. First of all... love the site. My son Dylan is 4.5 and we aren't 100% on a diagnosis yet. He has a fairly significant speech delay. We may also be looking at central auditory processing disorder with a smattering of sensory issues thrown in for good measure. They also talked about PDD-NOS but we'll know more about that after our next appointment with the developmental pediatrician. In the meantime, he is the most amazing, adorable, funny little boy I've ever encountered. He's wicked smart and quite curious.