An updated "Post Your Child's Diagnosis" - Page 4 - Mothering Forums

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#91 of 116 Old 08-24-2010, 02:21 PM
 
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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
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#92 of 116 Old 08-25-2010, 10:12 PM
 
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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..

L, 5 years old, severe ADHD, giftedness
H, 3 years old, oral allergy syndrome, dermagraphism, multiple food allergies/anaphylaxis
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#93 of 116 Old 08-26-2010, 08:34 AM
 
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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.
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#94 of 116 Old 08-29-2010, 02:39 AM
 
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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.

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#95 of 116 Old 09-22-2010, 04:39 AM
 
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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.

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#96 of 116 Old 09-22-2010, 08:45 AM
 
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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.
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#97 of 116 Old 09-22-2010, 09:39 AM
 
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Originally Posted by amandanmv View Post
"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.

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#98 of 116 Old 09-23-2010, 03:53 PM
 
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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!

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#99 of 116 Old 09-23-2010, 06:11 PM
 
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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.
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#100 of 116 Old 09-24-2010, 11:01 AM
 
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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
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#101 of 116 Old 09-24-2010, 04:41 PM
 
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My son would straighten his legs and growl, loud, from birth. we could not bend his knees at all! It changed to holding his hands opened and fingers in a weird extention, arms flexed, and growling. Now there is all of this plus mouth contortion. We go back to the neuro next week.

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#102 of 116 Old 09-24-2010, 07:08 PM
 
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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! =)

Mom to Lovebug 2/10 and wife to DH.
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#103 of 116 Old 09-24-2010, 07:22 PM
 
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I'm a bit slow to respond, lol.

Andrew has Autism (or Asperger's depending on which DX you follow, Autism DX given by child specialist, Asperger's given by school contracted psych... both fit at times). He has major anxiety and SPD issues as well. We knew he was different at around age 2 for sure and that's when we started the process of getting evals and when he started ST and OT. He went from highly aggressive and non-social to now highly social yet extremely quirky. He's amazing!

Our youngest DD, Mackenzie, is just starting the eval process. Only official DX is her significant speech issues. At age 7 she is still extremely hard to understand. She has a lot of trouble with school, particularly reading. Many of her issues mimic DS's but present in a different way. She has absolutely no attention span, and is highly social despite her speech issues. She is a natural born leader! Unfortunately this has been her coping mechanism for falling so far behind academically. Also, instead of trying to fit her quirky personality into the social norms.. she made her quirks the norm. As in, she took her leadership abilities and used that to convince the other kids that she was the normal one. We love that she is outgoing and social, but using it to mask underlying issues doesn't solve anything so we are trying to figure out how to handle the underlying things to help her succeed. Her ST at school is starting the process to get an eval for her to cover everything from general LD, to ADHD to Autism spectrum disorders.

Oh, and I have Aspergers, lol.

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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#104 of 116 Old 09-26-2010, 09:02 AM - Thread Starter
 
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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! =)
Holy fudge! Wait, he can't eat fudge...um...can't say holy cow either

Okay, so he CAN eat...rice, some fruits, some veggies, fish? Oats? Seriously, what does he eat?

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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#105 of 116 Old 09-26-2010, 12:14 PM
 
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Oh yeah, and no yeast or sugar! He's staying away from beans right now too because they're harder to digest. Yes it's a lot of rice, fruits and veggies and not much else! No oats- we had issues with gluten contamination from oats. Fish is something we stay away from in general because of the mercury content and because we can't afford the mercury lite Wild Alaskan stuff. He can have lentils so we eat lentils a lot. He could have berries, but they are really expensive right now. I make a few other things for myself to eat (especially since I'm breastfeeding and need more than just fruits and veggies to keep me going). But right now I eat like him much of the time because I want to support him and I'll do anything to help him get better.

Typically, he has a green smoothie, fruit like melons, peaches, or plums, and cucumbers for breakfast. For lunch I make rice and lentils or rice and vegetables and a second green smoothie (That's our big meal of the day.) Dinner is a green smoothie, more fruit and maybe some rice tortillas. He might have some dates, flaxseed crackers, or a thai coconut for a treat. It's a lot of the same, but he says he doesn't care if he has to eat like this for the rest of his life, as long as he feels better. It's the only thing that has worked and kept on working. Before he was having RA flare ups that lasted weeks and was hardly able to do anything. Now he is up and working every day, brimming with energy, and going for hikes and walks. His sleep is starting to even out too. People with RA and CFS often need to sleep like 10 or more hours and my husband is now starting function pretty well on 8 or 9. He's addicted to having energy and feeling good. Hallelujah!!!!!

We are expecting that after a while (maybe a year or so) he can slowly start to re-introduce foods back in when his gut has healed up more. Right now, the idea is to flood the body with enzymes from raw fruits and vegetables to help him have more energy and change the ph balance of his body from acid to alkaline to control and heal the rheumatoid arthritis. I read in Jenny Mccarthy's book "Warrior Mothers" about parents of autistic kids who had to put their kid on a hardcore elimination diet to see results, like beyond GFCF, and I would think, "Wow, how do they DO that?" I think I'm starting to understand...

Mom to Lovebug 2/10 and wife to DH.
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#106 of 116 Old 09-27-2010, 09:03 PM
 
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I am very new to this site and this is my first post/reply so I hope I am doing it correctly. My almost 1yr old son was just diagnosed almost 2 months ago with spastic quadriparesis cerebral palsy. He also has strabismus with esotropia and is moderately to severely farsighted. He turns 1 year old in just under 2 weeks. He does not sit, crawl, pull up, walk, etc. He can roll though and we think he just started clapping and waving (his versions of it). His lower body is worse then the upper body and the left side is weaker then the right side. He had a sedated MRI which revealed moderate PVL with Wallerian degeneration of the corpus callosum. We are in the process of getting him into EI for physical, occupational, and speech therapies. He is a pretty happy little man with the best blue eyes! He has a 2 year old brother who is finally starting to interact with him. Guess it took him awhile to figure out his little brother wasn't going anywhere!
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#107 of 116 Old 09-29-2010, 03:56 PM
 
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I'll join in too!
DS, age 8 has adhd. He was dx around age 5.5yrs. We did neurofeedback,play therapy, and tried things in the classroom. We started meds last year and he takes vyvanse. It has been extremely beneficial. He also takes a lot of omega 3's. We still have a lot of difficulty with behavior though
I'm always researching and read through this forum a lot!

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#108 of 116 Old 10-09-2010, 12:02 PM
 
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My oldest son was diagnosed with Aspergers/PPD
My youngest was diagnosed with Kawasaki Disease.
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#109 of 116 Old 11-17-2010, 07:31 PM
 
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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. 


M- Wife to E

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#110 of 116 Old 11-17-2010, 09:57 PM
 
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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. love.gif

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#111 of 116 Old 11-19-2010, 07:33 AM
 
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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.


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#112 of 116 Old 11-19-2010, 03:26 PM
 
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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.


Amanda Mom to Tayler 2-21-04 and Brayden 8-7-07 my boy with lots of medical issues but always happy
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#113 of 116 Old 11-20-2010, 05:12 AM
 
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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.  


Genie, mama to T (4/02), I (10/04) and T (7/09)
 
 
 

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#114 of 116 Old 11-21-2010, 07:57 PM
 
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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. 


Laurie Busy mama to Boo (10/02) DeeDa (10/04) and Belly (10/07) TS 45X
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#115 of 116 Old 11-22-2010, 03:38 AM
 
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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.


Mama to Luka - 22 February 2005, Tiisetso - 18 September 2010 & 3 angel bubbles
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#116 of 116 Old 11-29-2010, 03:09 PM
 
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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.

 

beenmum is offline  
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