An updated "Post Your Child's Diagnosis" - Page 2

[LynnS6]

Ds (8) has SPD, and mild anxiety. He had selective mutism as a preschooler, though I didn't recognize it for what it was. He may also have trichotillomania (hair pulling) - it seems to come and go. He's also a bright, thoughtful, observant introvert with a great sense of humor.

Dd (5) appears to be typically developing, with allergies, a quick temper, and I'm beginning to suspect either gluten or lactose intolerance. She's highly sensitive and falls just on the typical side of the SPD spectrum.

[Linda on the move]

My DD is 13 and her main dx is PDD-NOS, but we are currently going through a complete evaluation progress so she'll most likely have new labels before long. She has lots of sensory issues. Since adolescence, she's developed anxiety and depression. She's also gifted.

We've homeschooled and public schooled, and neither seem to be a good fit. Private schools don't provide the kind of services she needs.

[clicksab]

My DD is 3 and her diagnosis is Childhood Disintegrative Disorder (on the autism spectrum). She also has food allergies, especially to tree nuts and peanuts. There is also some concern about absence seizures, so we'll see about that. She is a handful, but a joy!

[AndVeeGeeMakes3]

VeeGee has Pierre Robin Sequence (most likely as a result of 22q deletion syndrome --we'll know within a month); micrognathia and velopharyngeal insufficiency (mostly repaired through jaw distraction and pharyngeal flap/sphincteroplasty); severe apraxia and articulation disorder; SPD -- with extreme oral aversions and dysphagia; Hirschprung's; GERD; low tone; and fine motor delay. She seems cognitively gifted, though, because of the speech delay, it's hard to know for sure. She's 100% tube-fed (though her eating skills are starting to slowly emerge ), and had a trach until she was three.

She's hilarious and charming, a total nut.

[marieangela]

My older two children both appear to be typically developing. Ds1 is small for his age, has asthma and will be seeing an allergist soon.

Dd (one year old) is my reason for coming to this board. She has a diagnosis of 5p- otherwise know as cri-du-chat syndrome. I don't post much because, sofar, she is not really sn. She is doing amazing well. At one year, she is sitting, crawling, pulling up, spending a lot of time standing to play, and cruising. She nurses well and eats solid foods (although she has no teeth yet). She sees a therapist once a week (pt and dv alternating). She is still small for her age, but growing well. The only thing I'm concerned about is speech. We will be having her 9 m onth EI review tommorow and we'll see if she can be evaluated for speech or whether we should wait until she's older. So far, she doesn't have most of the issues that we were lead to believe she would have. Not sure what will happen as she gets older, though. Most of the children with her diagnosis tend to have speech issues, but as I said, she really doesn't seem to fit her diagnosis very well so far.

[hadleys_mom]

DD,6, was a 23 week preemie and as a result is legally blind due to ROP and micropthalmia. She also has mild hypotonia and has delayed fine motor skills as a result. This year we learned that she has has SPD. Overall, she is in great condition considering she started at 1 1/2 pounds and wasn't expected to make through the week.

[Mamatohaleybug]

My 7 year old DD has Dandy Walker malformation (brain cyst decompressed at 2 weeks old), dual shunted hydrocephalus (shunted at 2 weeks old, multiple surgical revisions), GERD, severe migraines, seizures, static encephalopathy, amblyopia and anisometropia. She also has dyspraxia, SPD and hypotonia. We think she also has non-verbal learning disability/disorder. She's been through the wringer with medical procedures, tests, therapies, special education, etc.

She is bright, sweet and funny. Doing quite well in 1st grade this year. I am incredibly blessed!

[Kathryn]

Dakota is 5 1/2 and is Autistic. She has quite a of speech, but about 90% is scripted. She can tell us about things (by reciting lines), but is not able to formulate her own thoughts into words yet.

Max is 3 1/2 and is Autistic as well, though he is quite verbal. His main issue is aggression.

Lily is 3 1/2. At 4 1/2 months old, she got RSV meningitis and had a massive anoxic brain injury, causing severe global damage. She has quad mixed CP, dysphagia, microcephaly, cortical vision impairment, gastroparesis, visceral hyperalgesia, Lennox-Gastaut epilepsy syndrome, dysautonomia, GERD, central apnea, and Ehlers-Danlos Syndrome.

She is non-verbal, non-ambulatory, 100% tube fed via GJ, and will be starting PN in the next two weeks after getting a broviac cath placed (along with the removal of the hip/femoral plates and screws and a left leg tendon release).

Surgery wise, she has had:
March 07 - G-tube placement (no fundoplication)
December 08 - G-tube switched into GJ tube
January 09 - Bilateral Hip/Femoral Osteotomy with screws/plates and SPICA for 6 weeks
July 09 - Endoscopy and Sigmodoscopy
January 10 - VNS implant

[lotusdebi]

DS1 has been diagnosed with high-functioning autism and SPD (primarily sensory-seeking). We believe he has an attention-deficit as well. He also has anxiety issues, which seem to be related to his autism. And he has tics, but they aren't interfering with his life yet. He's in OT and sees a psychologist, and will be back in a social skills group come Spring. GABA, Magnesium, digestive enzymes, and melatonin seem to be helping well enough so far. We have a strong family history of severe mental illness, so I'm constantly on the watch for symptoms of those.

[KatWrangler]

My daughter Gabrielle is 4 years old and has Lipomyelomeningocle, Tethered Spinal Cord, Neurogenic Bladder and Bowel. She has no feeling or movement below the knee on her left leg. She wears a KAFO on that leg and a hinged AFO on her right.

She had her spinal cord un-tethered and had her lipoma debulked when she was 4 1/2 months old and another un-tethering when she was 2.

She is re-tethered. Our NS takes a wait and see approach. But we will have to have her un-tethered again at some point.

She has had achiles tendon release surgery on her left leg. That happened when she was a year old.

She is cath'd every 3-4 hours during the day. We do a castile soap and water cone enema at night.

She takes Ditropan 3 times a day as well for her bladder.

Tests? Numerous MRI's, Renal Ultrasounds, Urodynamics, VCUG, X-Rays etc.

[MotherWhimsey]

Linden is 3 and has Mitochondrial Disease. This has caused swallowing problems, autonomic dysfunction, 2 congenital airway deformities, Chiari malformation, severe fasting intolerance, hypoglycemia, central hypoventilation, respiratory muscle weakness, gastroparesis, and poor colon motility.

He's a very typical 3 year old boy, he just has a crappy body. He's got a GJ tube with 24/7 feeds, he's o2 dependent, has BiPap, and has a portacath central line. We're working on scheduling a cecostomy soon because we've spent about 50% of our time the last 6 weeks or so inpatient due to GI issues, and if there is one way I could potentially keep him out for longer times then we want to go for it.

He's a very cute and diabolical little guy and I have been terribly impressed with how well he deals with all the crap he has to deal with. He's just very resilient and doesn't seem to let it get him down for too long. And I think his stubborness is what helps him beat the odds. He really does very well for a kid with his disease and originally we didn't know if he'd make it this far. And here he is, with his fair share of issues, but happy and thriving.

[7callmemom]

3 of my 7 have special needs.

DD10 had been dx'd with Asperger's until her therapist moved and the new one decided that she was just "unsocialized due to being homeschooled"...we're waiting on a 3rd opinion, but as Erin says, "How can my problem be unsocialization when none of my homeschooled siblings are dealing with the same issues?!" She is currently on no meds and doing great now that I am educated enough to know her limitations and why she is so uniquely who she is.

Then my 26 month old twin DS's both have Reactive Airway Disorder and Chronic Lung Disease/Bronchiopolminary Dysplasia because of RSV they both had a month after their 33 week birth. They were in NICU for just 9 days but in the PICU for 27 for RSV, 21 of those days on various forms of life support...

Which leads us to the biggest reason I read/post here. Malachi is rocking along perfectly other than the lung issues, but Seth apparently had a stroke while on the ventilators that kept him alive through the RSV. The dx's I remember are Cerebral Palsy, Cortical Visual Imapirment, Stroke, PDD, brain damage and Failure to Thrive. I suspect we'll know more after he finally gets in with a neurologist in May...an appt we've been fighting for since he was 8 months old.

Seth gets in home and in center PT 3 times a week and OT and PT in center 2x a week each as well as vision therapy in home through Soonerstart as often as they can get a therapist out here...which is about once every 6-8 weeks.

At this point Seth is beginning to roll over once in a while, and the therapists have gotten him to sit independently 3 times over the last few weeks for 20-30 seconds...a beautiful sight for sure!

Our most immediate concern for him is the FTT. He weighs less than 17 pounds, can only eat from a bottle, has to have his liquids thickened to avoid aspiration pneumonia (which he's had a dozen or more of in his young life), has reflux that doesn't help his weight or aspirations and the plan for this summer is a feeding tube that would block off the top of his stomach to keep him from throwing up...also meaning he wouldn't be able to eat either.

He is the joy of our lives and we're honored to be his family.

Looking forward to getting to know you all better!

ETA: somehow I forgot to add Non-verbal to Seth's list...seriously, there's more dx's than I can keep up with!

[2boyzmama]

I'm posting on behalf of my mom...she just became the guardian of one of my cousins (not first cousin, more like third...) My mom just got her microarray results, she has 7q11.22 deletion and 16p11.2 duplication. Mom sees the geneticist next week where she will hopefully learn more, but from my quick googling, this is a very unique karyotype.

Catherine is 18, will be "graduating" high school this June. She is moderate MR, has speech issues, had *severe* scoliosis (had radical corrective surgery once and may need more), had some ear issues as a child (not sure what they were, mom is gathering records now), has some recurrent white blood cell issues (I can't remember if they are chronically high or low, but whichever it is, it appears to cause her no issues at all, she's ridiculously healthy), she has a strange gait to her walk, and she has fine motor issues. She's very sociable, but has problems controlling the volume of her voice, and doesn't seem to understand social boundaries.

[dpeacey]

I am here because of my youngest, DD. She just turned four and has Agenesis of the Corpus Callosum (she is missing the part of the brain bridging the two hemispheres). She had severe & constant sinus/ear/lung infections for the first 2 years of her life (less constant now). She has global developmental delays, but is doing great! She does everything "regular" kids do, but later and with much more repetition. She is a kid who truly enjoys life. She really is my sunshine. I do believe that she, with lots of support, do great things with her life.

My oldest, DS, almost 7, has a suspected DX of AS/SPD and possibly giftedness. (We are working through this now, due to difficulties at school). His SPD often makes him really grumpy but he can be so sweet and is intensely curious and insightful. I am trying to get DH to agree to a trial dairy/gluten free diet for him.

We live in Alberta (Canada) and are very envious that the US has the blessing that is Wright's Law!

[AllyRae]

Brandon, 6 years old, high functioning autism, SPD, and test results indicating he falls in the gifted range

Jocelyn, 3 years old, adopted from Vietnam, severe expressive & receptive language deficits (now mostly resolved), Reactive Attachment Disorder

Amelia, 1 year old, neurotypically developing, but has selective IgA deficiency/Primary Immune Deficiency

[smocklets]

DS3 is turning 1 this month He has Agenesis of the Corpus Callosum and Septo Optic Dysplasia. We are waiting on a muscle biopsy to see if there are any other issues. He has low tone and is legally blind. He is very sweet and happy, loves to cuddle and nurse. He is in PT, OT, speech, and we have a vision specialist.

[kme]

I have 4 kids - 2 are NT, one has mild ADHD. I come here for my 6 year old who has received the following dx at one time or another: ADHD, SPD, "possible" HFA, PDD-NOS, dyspraxia, "possible" dyslexia. I know he doesn't have all of these, but it is hard to determine exactly what the main problem is. I think he best fits with PDD-NOS with mostly sensory (sensory seeking and dyspraxia) symptoms.

[Aliyahsmommy]

I have two children Aliyah is 2.5 years old and Aidan is 3 months old.
I come to this board because of Aliyah who has Tactile Defensiveness Disorder, a sensory processing disorder. She was diagnosed a couple of months ago and she goes to weekly OT and we use the brushing protocol at home. I can say that she has made huge strides and most of her issues have almost disappeared or are significantly improved!!
Aidan is only "not typical" in the fact that he is by far the happiest baby I have ever met and the kid practically never cries Thus far we have not noticed any SPD in him or any other delays or issues.

[Heavenly]

My special needs child is my oldest, Elijah. He is 9 years old and was diagnosed with bipolar disorder and anxiety disorder when he was 7. He is now on 3 meds for it which sucks, but it's what it takes to keep him stable. He also has hypothyroidism and is on synthroid for that. The first...well, most of his life, was really a struggle but we have finally found a combo that seems to be working well for him and he is doing really well. He has learning disabilities as well but the school is working with him and he's doing good.

[BookGoddess]

I have a preschooler with a diagnosis of PDD-NOS (an autism spectrum disorder). She's high functioning, quite verbal, creative, funny, very cheerful child. I couldn't have asked for a better daughter.