|
Originally Posted by nicky85
 I am a first time mom to a sweet little 7 month old boy with spina bifida myelomeningocele, hydrocephalus, and Chiari II brain malformation. He has a shunt, but is otherwise completely normal, even ahead developmentally. He has use of both legs and urinary function. We have even been EC-ing for over a month now! We take him to a chiropractor regularly and it helps.
Can I count my husband as my other special needs child? (J/K!) He has rheumatoid arthritis, chronic fatigue syndrome and leaky gut. He is on a dairy free, soy free, gluten free, corn free, citrus free, egg free, meat free, peppers free, potato free, eggplant free, tomato free, chocolate free, nut free, oil free (except flaxseed and coconut) diet. But at last something works! =) |
My dd is 2 and has spina bifida mylomeningocele, hydrocephelus, a chiari malformation (probably II). Her shunt was placed withint 48 hours of birth. She also has a innocent (thus far anyways) functioning heart murmur, and most likely has some type of reflux. We will be seeing the doctor about that tomorrow. She is in a wheelchair full time, has no functioning below the hips. She will most likely have surgery on her bowels and bladder in the next few years. She is a very happy little girl although frustrated at times when she cannot do things.
Hi everyone...
I have a DS, 4 - typically developing.
My DD, 2, has a microduplication on her 1st chromosome that is the first of its kind recorded (thus, lots of unknowns). She was also diagnosed with Noonan Syndrome in March of this year. She is 100% G-Tube fed, though we'll be starting an intensive wean in January (keep your fingers crossed, everyone!!). She was on O2 for the first 18 months of her life, and her cardiac diagnoses have been: Atrial Septal Defect (repaired through OHS at 9 months), pulmonary hypertension, pulmonary stenosis and hypertrophic cardiomyopathy. The last three - thank you God - are currently well under control but I live in fear that they might change at any time.
She has low muscle tone - she walked at 19 months - she still can't run or jump with both feet. She has a wonderful vocabulary but can be difficult to understand. Cognitively she seems to be close to on track - perhaps slightly behind but not significantly.
She is very small for her age - she's not on the weight chart but is at 25% for height. She is well-placed on the Noonan's chart, though, so that's good.
She is one amazing kid. Amazing. We like to say that she has a massive personality stuffed into a tiny little body. 
Ok so out of my 4 kids only 1 has an official dx...
dd is 7 yrs old. She has Asperger's, a speech impediment, and an as of yet undiagnosed learning disability that we are in the process of finding. Apparently there is a disconnect between her IQ and her Academic something or other that says she has a learning disorder.
ds is 9yrs and has been unofficially diagnosed with OCD.
ds 13yrs is nt and a very supportive big brother to his sibs.
ds 4yrs is my mild mannered shy little boy who also seems to be nt at this time.
2 kids my oldest it typical i come here for my 3 year old. He has many diagnoses in his life so far they are, anxiety disorder, dsypraxia, apraxia, ataxia, sensory processing disorder, nonverbal, static encephalopathy, low muscle tone, movement disorder, tremmors and automatic dysfunction. he has had alot of ear infection and sinus infection. he is on his 4th set of ear tubes and has had one sinus surgery so far. he gets pt ot and st though the school system. O i forgot to mention he has feeding problems most likely related to his low tone. he wears smo braces on both feet since he was 12 months (before he was even walking) he sees a genetics doctor who is trying to tye all his stuff together and find something that fits so we are currently doing testing. hopefully we will have a answer soon. Considering everything he has gone though he is a very happy little boy.
I suppose I should intro myself here now. My older ds, Trevor (8.5), has asperger's, anxiety and probably dysgraphia. My younger ds, Isaiah (6), most likely has SPD...we're working on getting OT referrals for both boys right now. My daughter, Tessa (15 months) already seems to have some obsessions and reminds me a lot of Trevor at this age. Who knows what her future will bring, I may just be seeing things that aren't there.
Well, I am kind of sporadic with my visits to this board. Sometimes I'm here a lot for a few weeks and then I don't come back for awhile when life gets busy with other things.
I am a mom to 3 kids. DD (age 3) is the main reason I come here. She has Turner Syndrome, hypothyroidism, borderline hypertension, 1 Multicystic Dysplastic kidney and the other kidney with newly discovered cysts as well but I'm not clear on the official diagnosis yet, Renal Tubular Acidosis (which we are hoping she has outgrown- currently weaning off meds and so far so good), and multiple food intolerances / IgG allergies to milk and soy in particular and depending on the day you ask I will come up with the rest of the list - LOL. In addition to these official diagnoses she is getting ST and OT for sensory processing issues, mild deficits in postural stability, and oral motor coordination issues. She had Torticollis as a young baby/ toddler and that seems to still play a bit of a role.
DS1 has been identified as gifted and sometimes I think of him as having special needs, and other times I don't. He's certainly a challenge to us and I wonder if there is a diagnosis in there somewhere but haven't felt it necessary to have him evaluated so far.
DS2 is a regular little boy, gifted I think but not to the extent of DS1 and therefore fairly NT.
i'm kind of new, more of a lurker :)
My 5 (nearly 6yo) has been diagnosed with dyspraxia and SPD, we go to OT once a week. Our OT has reccommended that Luka (ds) go to play therapy for emotional immaturity and lack of social awareness issues.
I am new here. I am here with 2 of my 4 kids.
My oldest girl currently underwent genetic testing for Fragile X. We are awaiting the results. She is autistic, altho we have run the gamunt on that dx...from HF, to PDD-nos, to not autistic but mentally delayed with ADHD........ and right back to Autistic. She didnt walk until she was 27 months and she didnt speak until she was 4. She uses PECS well, mostly as a means of knowing what comes next.
She is severely globally delayed. She functions at the level of a 5-6 year old and she is 11. She will always have the mental abilities of a child and will always require adult supervision. We are currently homeschooling her.
She also has absense seizures and recently developed Reflex Anoxic Seizures with provoked syncope.
My youngest girl has several dx's. She has a genetic (passed down from me, but I didnt know I had it) connective tissue syndrome that has caused Pierre Robin Sequence. Its called Stickler Syndrome type III. She also has OCA 2 Albinism.
She was tube fed, but now is on mechanically soft foods. She is legally blind due to a cortical visual impairment caused by underdeveloped nerve pathways to her brain. She can read small print...but she cant tell if something is moving or still, if there are stairs, curbs, drop offs etc. She has no functional vision and gets VI services.
She also has an airway deformity and her airway swells shut whenever it becomes irriatated. SO, its been pretty scary.
She uses a white cane and newly fitted bilateral AFOs due to a signifigant limb length discrepancy ( 1 and 3/4 inches between her left leg and her right leg).
My youngest boy has the cleft palate and the connective tissue syndrome.....but he has had very few issues in his life, only some palate and speech issues.
My oldest boy is NT.
Follow Mothering