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My name is Jeni, and I have 3 children, Grace (9), Lily (6), Felicity (3), and Jack (17m).
Grace had several episodes of seizures at 14 months, and was diagnosed with an unspecified seizure disorder (because her seizures didnt show up on EEGs). In following up with her neurologist, we also discovered a lack of myelination (white matter) in her brain. Myelin is a much better conductor of brain impulses than water, and where Grace does not have myelin, she has water. About the same amount of myelin as your average 2 yr old). Several years passed, and we were curious where her lack of myelination might be showing up in her development.. was she behind anywhere? So we took her to the Center for Development and Learning at UNC and she was seen by a panel of psecialists.. OT< PT, developmental pediatrician, speech language pathologist, child spychologist). They said she was delayed 3 years in gross motor skills and almost that much in fine motor skills. They also diagnosed her with sensory processing issues. They recommended her for OT, PT, and Sensory Therapy. She graduated from PT after a year (YAY!!), and has been in OT and ST for the last few years.
She was officially diagnosed this past fall at our new OT with the following:
I suspect she also has Aspergers (or is right near being on the spectrum), an expressive language disorder, and maybe either cognitive processing or cognitive praxis issues... there is without a doubt a processing issue, but it doesn't show up on things like the Iowa Test of Basic Skills or the Woodcock Johnson achievement test just because of the way they ask the questions/type of testing.
Lily is my 6 year old, and she will likely be officially diagnosed with ADHD (hyperactive impulsive subtype) in the next year or so. We had her tested last fall, and she was just (94th percentile) under clinical diagnosis (95th percentile).
So far, Felicity and Jack seem neurotypical. Stay tuned. LOL!
Thank you BAM for my signature!!
Last edited by Frelle; March 31st, 2009 at 07:27 PM.
MY NAME IS CARA AND IM 25 YEAR OLD REGISTERED NURSE AND THESE ARE MY LITTLE ONES. DYLAN IS 2 AND A HALF AND ADDISYN IS 2 MONTHS AND SHE IS MY SN CHILD. SHE HAS A CHROMOSOME 2 INTERSTITIAL DELETION IN Q24-31. IN THE RESEARCH WE HAVE GOTTEN USUALLY COMES WITH SEIZURES, MENTAL AND GROWTH RETARDATION, MICROCEPHALY, CLEFT PALATE, FACIAL ABNORMALITIES, SHE HAS HAND CONTRACTURES THAT SHE WILL NEED FIXED WITH SURGERY, AND OTHER THINGS. SHE IS ONLY 2 MONTHS SO ALL THIS IS VERY NEW OBVIOUSLY AND LOOKING FOR GUIDANCE AND TO MAKE SOME FRIENDS THROUGH THIS BOARD I HOPE.
Last edited by carajean9999; June 2nd, 2009 at 10:21 PM.
Reason: DIDNT HAVE TEXT.
Hi I'm Justine mommy of 2, Seamus who just turned 4 and Kieran who is 15mo. Seamus is my special needs kiddo. We've been on a rollercoaster ride since he was born trying to figure everything out and why he is the way he is. The big thing our Pedi keeps looking at is High spectrum Autism(Aspergers, or PPD(? or PDD I get confused)). Recently he got into speech(after 7mo of waiting) and the very first day his speech therapist asked if he'd been evaluated for a Sensory disorder, which he hasn't yet. One of our sessions she had the OT that specializes in Sensory issues come and observe, and she asked me a few questions. The OT said he deffentally has some sort of sensory issue going on. We are looking at the end of August for an official eval since the OT is on vacation till then. But being a naughty me I went looking stuff up and found something that fits him so well its kind of scary Sensory Processing Disorder. So we'll see, but it would be nice to figure him out so we can learn how to help him learn(he's still pretty behind developmentally) and so we wont be as stressed with him.
I'm Harmony, mom to Thomas Joseph (Master TJ), who is 4 and also just found out I'm expecting #2.
Master TJ is my special needs child. He has cerebral palsy, developmental delay, GERD, a Nissen fundoplication and G-tube placement (due to the GERD) at 3 weeks.
Currently, he is attending special needs preschool, 5 days a week, 3 hours a day.
He also receives PT, OT and soon-to-be ST.
He currently has a wheelchair, a stander, a Rifton bath chair and a feeder chair.
Hi I'm Nickie single mom to my son Jake. We live in an apartment with two of my friends. We also have a rat terrier named Trey. I work 2 jobs and go to school for phlembotomy eventually hoping to be a neonatologist. My son is diagnosed as ECDD and Speech Delay with possible audio and sensory delays
Hello my name is Bethsaida, I'm 24 years old and new to the forum ( I introduced myself already, I have one daughter Romina she's 5 years old going on 6 in October.
Physically she's ok, she's perfectly healthy, she was a hard baby, always fussing, barely slept, one instant she was crying the other she would come up to me and hug me as if she hadnt done anything wrong. I thought this was normal for a 3 year old but then it started to become obvious that there was soemthingseriously wrong with her.
She has a mental disorder, we've gone to several doctors, we've travelled around Mexico and we even went to Los Angeles to see what the real issue is but we dont have a proper diagnosis yet but we are close too. So far we've got:
Early on set Psychotic Depression
Early on set Bipolar Disorder (less likely)
Childhood Schizophrenia (most likely)
I really hate the idea of giving my DD those medications that will have long last effects on her brain and development, yes she will be "better" but the effects that these medicines have in children when they reach adulthood is unknown. I'll have to come to terms with the fact that my daughter is mentally ill and that she needs to be medicated for herself and for others. Her hallucinations have been getting worse as she gets older.
I am Heavenly and I have one son Qwilleran who just turned 4 in march. This past winter my son got diagnosed with PDD-NOS and Sensory Processing issues. I started trying to get him tested in November and he was diagnosed in January with PDD-NOS and Sensory Issues. Once I get back home I am also putting Qwill in OT via doctors orders. They want him in OT to help him with his sensory issues. I also think that Qwill doesn't have PDD-NOS i believe he has Asperger's but not sure who to go to to get retested. I am currently going to started pressing his doctor to get tested for ADHD because it runs in our family and he has all the signs and symptoms with it. Unfortunately Asperger's, ADHD, OCD, Depression and a few other things all run in my family. My brother has Asperger's and Depression and ADHD so I do know how it is.