An updated "Post Your Child's Diagnosis" - Page 5

[laurata]

My son was diagnosed this spring as being mildly affected by autism disorder. He has made tremendous strides in language development over the past 18 months since going gluten (and garlic) free, and participating in developmental preschool and speech therapy. It's possible that he will "age out" of the diagnosis, but I suspect with will have social struggles for some time yet. My three girls are quirky in their own ways, but generally NT.

[DaughterOfKali]

Originally Posted by laurata

It's possible that he will "age out" of the diagnosis,

Unfortunately, you can't "age out" of autism. If it seems to disappear, then the original diagnosis was most likely wrong. There is no cure for autism, at this point.

[Eyelet]

Originally Posted by DaughterOfKali

Unfortunately, you can't "age out" of autism. If it seems to disappear, then the original diagnosis was most likely wrong. There is no cure for autism, at this point.

100% agree. Autism is a lifelong diagnosis. IMHO, if the autism was "cured" or aged out of, it was the wrong diagnosis to begin with. My son was diagnosed at age 2, he's 14 now, and still autistic.

[christinelin]

I started coming here to seek support after my middle child was diagnosed with Asperger's Syndrome almost 2 years ago. He is now 7 and is doing great. He has always been fully mainstreamed with no IEP, although we have done extensive private therapy.

We are in the process of getting my youngest, now 5, evaluated for ADHD. He is charming and socially gifted and incredibly physically demanding. He already gets OT for sensory seeking stuff and fine motor delays.

My oldest would say we have two special needs kids (ie: her brothers ), but we are also beginning to seek therapy for her for anxiety.

I tell our psychologist that we have the A's from the DSM covered: Anxiety, Aspergers, and ADHD.

[fairejour]

My daughter is 7 and has a bilateral, progressive hearing loss.

She was born with perfect hearing but was in the NICU for severe meconium asperation leading to persistant pulmunary hypertension of the newborn (PPHN) and was put on ECMO. She was also septic. After living through ECMO (which was a huge surprise to everyone) she was on a vent for 4 weeks, and then on O2 at home for 6 months. She had some mild physical delays which were taken care of by PT and was discharged from EI at 1 year old......and then the other shoe dropped!

At 12 months we began teaching her baby signs. She had around 5 words, and would say "ookie" with the sign for cookie, and "moe" with the sign for more. At 15 months she had the same 5 words, and I asked the doctor if that was ok, he dismissed it. At 18 months, she stopped voicing with her signs and still only had the same 5 words. I called Early intervention and told them I thought my daughter needed speech therapy, they asked if we had had her hearing tested, I said yes, once in the hospital and a follow up ABR at 6 months old, both of them showed normal hearing. They sent us for another test.

At 18 months Miss Kat was diagnosised with a mild sloping to moderate (20-60 db loss for those who know and care) and was fitted with hearing aids at 20 months old. She received very little benefit from her hearing aids. We continued to learn signs and do speech therapy. She gained no spoken language but ASL became her first language.

At age 5 she had lost enough hearing to become a cochlear implant candidate. She was implanted in her right ear in Nov. 2008, at age 5. She gained tremendous spoken language benefit from her CI. She was bilaterally implanted July 2010, and will be activated August 25th.

Miss Kat now hears in the normal range with her CI and can hear and discriminate all the sounds of the English language. BUT she is still profoundly language delayed in English. She can hear, but needs to learn the language. Her language delay has effected her reading as well. (But her IQ testing shows her in the high average to mildly gifted range)

[laurata]

Originally Posted by DaughterOfKali

Unfortunately, you can't "age out" of autism. If it seems to disappear, then the original diagnosis was most likely wrong. There is no cure for autism, at this point.

Originally Posted by Jaki

100% agree. Autism is a lifelong diagnosis. IMHO, if the autism was "cured" or aged out of, it was the wrong diagnosis to begin with. My son was diagnosed at age 2, he's 14 now, and still autistic.

No, I know. I think the autism doc was just trying to express that... because he is doing so well and making progress, that he may not meet the diagnostic criteria for autism down the road. We don't know if it is just developmental delays that happen to match with enough symptoms of autism to warrant the diagnosis, or if he will continue to struggle. Clear as mud?

[cdahlgrd]

It has been awhile for me too, so here I go:

Ds1: born with "siezure like activity" and on meds until 9 months old. Severe allergies to tree nuts, and animals. Allergies to chocolate, eggs, and soy. At 4 he was diagnosed with bilateral hearing loss, that has since progressed. He was also diagnosed with non-verbal learning disorder, but it doesn't fit, ADHD, fine motor delay, and SID. He is now also wearing glasses, but they aren't helping, so I think he needs to see a developmental opthamologist (sp?). He is also a toe walker, and I suspect has a teathered cord. He is also gifted.

ds2: asthma and fructose intolerance and gifted.

ds3: fructose intolerant and gifted.

ds4: severe peanut allergy and asthma and isn't talking. so we are looking for ei services.

Cooking at our home is a challenge!

[nyveronica]

My youngest child was dx'd with Fragile X Syndrome a few months ago (his cgg repeat is 600). He's 21 months old now and has been getting ST & PT for 7 months. We're phasing out PT now and adding OT/SEIT for the forseeable future.

He has ear tubes (9 ear infections last year) due to his low tone & AFO's for the same reason.

He can creep and crawl but he can't stand unassited or walk... yet. Climbs like a madman.

He's mostly non-verbal but he does point and say approximations of "this", "that" & "there"

He stuffs his mouth, hates being hot and goes BANANAS for dogs and babies

This kid is so sweet and loving and trusting. He never holds a grudge, would rather get a hug than anything else and may well be the first person on the planet to "cure" me of all my bad qualities

[lil_stinkyfeet]

Ds was born with hearing loss, hypotonia, and developmental delays. At 3 he was diagnosed with SPD and autism spectrum disorder. He is now 5 and about to enter Kindergarten.

[aslyn]

Been forever since I had the time to sit down and scour through the forums..I come to this one because of my ODD, she has an Intellectual Disability..currently she has speech therapy and occupational therapy. She spends all her days in the multi handicap resource room, except for homeroom. Shes 9 and on the emotional/social level of the 4-6 yr old age group..like everyone else here we have our good days and bad. We have 4 kids ranging from 9-10 weeks old..so life is a challenge for us!

edited: She is now only in gen ed class for homeroom

[skyebones]

I often lurk here... Sophia is 9 and has Pulmonary Atresia Intact Septum with multiple coronary fistulae, ADD and food allergies. She has had a total of 7 heart surgeries, 3 being open heart by the age of 4. She currently takes coumadin, but nothing for her ADD.

Laura

[fourfallbabies]

I'm new

Hi. I'm just new, although I have read a bit here on and off for awhile.

I have an almost 6 year old (DS) dx with severe ADHD, and I suspect SPD. He was also dx as gifted. He takes Concerta and sees a naturopath and also takes homeopathics. School is..a challenge for us. He's a very awesome kid, extremely bright and spiritual, scientific and creative. Asperger's has been thrown around over the past few years (mostly by professionals that are not doctors, ie teachers, friends) which has been denied by pedi and developmental pedi.

I have an almost 4 year old (DS) with a long extensive history of multiple/severe allergies (including anaphylaxis), mainly food. He also has dermagraphism (skin writing), oral allergy syndrome (not typical symptoms), recurrent periorbital cellulitus (caused by severe sinusitis). It has been a struggle to aquire help for him at times as he really is a case study (I'm not kidding) for our pedi and allergist. He also sees a naturopath and takes homeopathics. He will be starting JK September and he is the only child in the whole school with epipens (small school, 100 kids). So that will be a huge challenge..that and we currently have not figured out what the heck he's allergic to right now- I know it's preservatives, and I have my suspicions on a few, but...Allergist suspects possible auto immune disease..He's a kid that's loved by so many, he's quite easy going, often attracts older kids because of his personality (often teenager kids get a real kick out of him), he loves to play outside and is quite a simple child (compared to his brother).

I hope I fit in here..I can see others are dealing with a whole lot more than myself..although, IRL I feel like I'm dealing with a whole lot more than the typical family..so..

[fairymom]

Haven't really posted much on here till now. May lurk a bit and ask some questions.

ODS (15)- DX w/ADHD in the 2nd grade, went untreated till the 6th when he was given a full phsyc assement by a phsycologist and also Dxed w/ODD. Was treated w/Concerta till it started loosing it's effect now we're in the process of finding the right fit. Aderal doesn't work for him- side effect of irritability sets off ODD. So on it goes.

YDS (5.5)- was always my high needs kid. Has worn glasses since he was 2 and is having corrective surgery in a few weeks to fix his lazy eyes. Also was Dx w/Asthma (reactive to colds) at about a year. Just discovered he's lactose intalorant this summer. Was Dx last week w/ADHD and is having a full assement done soon. No Rxs for him at the moment- his Dr wants to start w/some play therapy 1st and wait for the results of the assement. (I think he may want to Dx him w/ODD but I'll fight that tooth and nail as having dealt w/one w/it I KNOW he does not have it) I believe he may have some sensory issues but not a prof so won't Dx him myself. He is very energetic and frustrates easily but always happy.

That's what I got.

[beachcomber]

My 4yo DD was diagnosed with Autism Disorder last week. It's been a long process which started with us looking into help dealing with her severe separation anxiety. She has gross and fine motor delays, some SPD (mainly dyspraxia, under-modality, oral and sound) and significant social interaction issues. Currently she's receiving OT and speech therapy through a private clinic which (thankfully!) is on our province's RASP list, so we can continue there and even expand treatment to more fully address her social problems. She's of kindergarten age this fall but we've chosen to keep her at preschool an extra year while we work on her issues.

My 15 month old DS is shockingly neuro-typical. He's busy and interactive and vigorously plays with his baby toys. Having him come into our life helped us realize that our DD was working with deficits.

[greenluv]

Also new to this forum...

We have a new baby who was born profoundly deaf. Dd was fitted with hearing aids by 6 weeks of age but we're not sure how much benefit she's getting from them. She also has little skin tags by her ears which is suggestive of an underlying syndrome of some kind. We've seen a geneticist and are awaiting those results.

I've been noticing that my dd seems to have some facial paralysis which is subtle, but would correspond with a syndrome. I suspect she will need to have a kidney u/s to determine if kidney failure is in our future. Right now, we don't have any answers about what we should expect. I feel like we're stumbling along waiting for some Dr to decide it's time to move onto an actual plan, which is frustrating.

[amandanmv]

I've got 3 kids. Oldest daughter will be 11 in a couple days and she's NT (does have mild asthma). My younger daughter (middle child) is 9 and she was diagnosed with ADHD 3 years ago. She's taking Concerta and doing well with it. She also has asthma.

My youngest..my son (and the main reason I come here)...was diagnosed with SPD the beginning of last year. He had speech delays (many words, but you couldnt understand him), fine motor delays, was still mouthing objects and drooling constantly after age 3 and toe walking. We did OT and ST last year and this year and started PT this year as well for the toe walking. It got worse and the OT referred us to the PT. The PT prescribed AFO's for him at our 2nd visit with her. He's doing well with them. He just started PreK last month and it's a huge challenge for him. I changed pediatricians and we see the new doctor on Friday. After talking with my SIL (an OT and doing ABA with autistic children) I decided to persue another diagnosis. I do believe he has SPD, but I believe there's more. Possibly PDD and/or ODD. Praying that this doctor will give us a push in the right direction. Our former pediatrician dismissed all of my concerns with "Oh, he's just being a boy" or "It's just his little thing (his stimming that he's done since he was just a little baby!) Time to find a new doctor when yours won't listen to mother's instinct. He said his toe walking was fine because he COULD walk flat footed. Yes, he can..but he doesn't unless he's prompted and then not for very long....a few steps. Went to the PT after I demanded the referral (stupid HMO ins. lol) and PT found decreased range of motion..so it had already effected his muscles in his legs and the pediatrician was just going to let it continue.

He's having a LOT of behavior problems in preK and I fear they will not let him continue in the program. I'm hoping we can get the right help we need for him so that he can adjust to the setting of class.

[by-the-lake]

Originally Posted by amandanmv

"It's just his little thing (his stimming that he's done since he was just a little baby!)
.

What did he do when he stimmed? My baby stimms too.

[Birdie B.]

For all you strong mamas!

My daughter will be 2 next month, and still no diagnosis! We have been seeing specialists since she was born, but nothing has turned up yet. She was born with congenital glaucoma and other severe eye deformations. Multiple surgeries have given her some limited vision with her left eye (thank god!), but she is still severely visually impaired.

In addition, she was born with clubfeet and hip dysplasia, which have been corrected by orthopedics. Her muscle tone is very very low, and she has a diagnosis of FTT. Her developmental delays are moderate and due to low vision and muscle tone. She seems to have no neurological issues or intellectual impairments, so that is good. She is tough and amazing!

[Zan&Zav]

autism, spd, some ocd, gross motor and fine motor delays. Was born at almost 26 weeks. Hes awsome

still working on a diagnosis for my 6 year old, should know more next week.

[amandanmv]

Originally Posted by by-the-lake

What did he do when he stimmed? My baby stimms too.

It started out with what looked like he was riding a motorcycle. You know..hands cupped around the handbars and revving it up. He did it a lot. We used to laugh and point it out. It was cute. Then that changed to him clenching fists and then changed again to his hands being open and his mouth is involved. Here's a pic I took the other day of it. He does it a lot.

http://i273.photobucket.com/albums/j...DSC_1426-2.jpg