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-   -   Meet our SN kids (https://www.justmommies.com/forums/f50-children-special-needs/1516846-meet-our-sn-kids.html)

Ditzzy April 11th, 2009 04:33 PM

Meet our SN kids
Post a picture and tell us about your SN child(ren) here!

Deb April 11th, 2009 06:42 PM

Re: Meet our SN kids
Here's my doodlebug! :D He found his winter hat and wanted to wear it, so I told him to smile for the camera....this was the result! :lol:


Matthew has cerebral palsy, has been diagnosed with sensory processing disorder, and at this point we really think he may be high functioning autistic, or may have Asperger's Syndrome. It's mild whatever it is, so I'm resisting testing (with my ped's support) for right now. I'd rather give him time to get through the terrible 2's before we diagnose a bad attitude as anything else. ;)

~~~Sara~~~ April 12th, 2009 08:42 PM

Re: Meet our SN kids
Meet Carter, born 11/07 so he is 16 months as I write this, diagnosed with Mowat Wilson Syndrome.


This is from Wikipedia, please ask any questions you may have. I may edit this post later to add info, but at the moment I am tired.

Mowat Wilson syndrome is a rare genetic disorder that was clinically delineated by Dr. D. R. Mowat and Dr. M. J. Wilson in 1998.[1] This autosomal dominant disorder is characterized by a number of health defects including Hirschsprung's disease, mental retardation, seizure disorder, delayed growth and motor development, congenital heart disease, genitourinary anomalies and absence of the corpus callosum. Distinctive physical features include microcephaly, narrow chin, cupped ears with protruding lobes, deep and widely set eyes, open mouth, wide nasal bridge and a shortened philtrum.

quietsong April 13th, 2009 05:25 AM

Re: Meet our SN kids
This is Danny, born March 11, 2008! Forgive my long winded explanation, but I am very adamant about CMV awareness considering it is an avoidable congenital virus and this is a mommy forum, LOL.


Danny was born with congenital Cytomegalovirus (cCMV). Despite most people not knowing about it, CMV is very common, especially in daycares and preschools; once you catch it once, you develop immunity, much like chicken pox. In healthy children and adults with fully developed immune systems, it acts like a cold, or a bad infection develops flu- or mono-like symptoms. However, when a pregnant woman catches it for the first time, it crosses the placenta without so much as blinking. 85% of children with cCMV have no symptoms at birth, but go on to develop a progressive hearing loss and occasionally other problems.

Danny, however, landed in the other 15%. He was fortunate enough to avoid a couple of the worst symptoms (seizures and microcephaly, and death thank God), but he had a full complement otherwise: enlarged liver & spleen, enlarged ventricles in the brain, extremely low platelet count, petechiae (small spontaneous bleeds under the skin that appeared like a red rash covering his body), low birth weight, and difficulty eating and breathing. The infection also made it into the fluid surrounding his brain, leaving calcifications.

At this point, however ... we don't know exactly what the effects of all of that will be. He is profoundly deaf (using cochlear implants) and globally delayed. He is currently resisting table foods - strongly - but it's impossible to know right now whether that is a sensory/feeding issue or just a stubborn baby. He has a strong preference for his right hand, seeming to forget or dislike using the left, and will probably need foot braces because his ankles roll in when he's standing. He remains high risk for learning disabilities and processing disorders across the board, but it is too early to tell for pretty much any of them yet. We are playing a lot of "wait and see" right now on top of tackling the issues we do know about.

Ditzzy April 13th, 2009 06:48 AM

Re: Meet our SN kids
Meet Ava:


She has Cerebral Palsy, seizures, and defects that effect her larynx, trachea, epiglottis, palate, tongue, and skeletal system. Some of these defects obstruct her airway (severe Laryngomalacia and tracheomalacia). She will eventually need airway reconstruction. She has some GI issues that include reflux and bleeding. She has feeding concerns as well. It seems every time she sees a Dr, we find more wrong. Medically fragile, turns blue, passes out, etc.. She is a sweetheart with a cute personality. I love her so much.

(update 1/10) Ava was diagnosed with a metabolic disorder and has had her first airway surgery.

UPDATE 2/11 --- Ava's muscle biopsy came back positive for Mitochondrial disease (ETC1). She also has Eosinophilic Esophagitis, dumping syndrome and severe hypoglycemia. She is on continuous GJ feeds for her unstable glucose and feeding intolorance. She remains on oxygen for OSA and central apnea, when needed.

stacyp April 14th, 2009 06:17 AM

Re: Meet our SN kids
My peanut.....

Luke was born 05.28.08 with Trisomy 21 (Down syndrome). He has had open heart surgery to repair 3 congenital heart defects & also has laryngomalacia. He has hearing loss corrected with tubes in his ears.

docsmomma April 17th, 2009 05:53 PM

Re: Meet our SN kids
Meet Joey

Joey has Langerhans Cell Histiocytosis, which is a disease of the blood/immune system. His involvement includes skin, lungs, liver, and ears. He was diagnosed after 4 MONTHS of symptoms ignored by his doctor when we discovered a mass in his throat. There is no "universal treatment" for LCH. For kids with skin only treatment can sometimes be avoided, but ionvolvement other than skin is treated either with surgery to remove mass or with chemo, depending on where involvement is and how many systems are involved. LCH can affect the skin, liver, lungs, bones, spleen, Central nervous system, GI tract, really just about anything.

Joey's primary tumor is a "mediastinal mass", meaning in the chest, and had wrapped around his airway, displaced his heart, wrapped around all his major arteries and veins. He has been treated with Chemotherapy and is currently on modified maintenance. He still has a small mass left in his chest near his heart.

The reactivation rate for LCH kids depends on the level of involvement and areas involved. I believe Joey's chance of a reactivation is 50% but it could be as low as 35%. many kids with LCH also develop Diabetes Insipidus, developmental delays, learning disabilities, and a variet of other possible issues. Something as simple as a diaper rash or a headache could mean LCH is back and has to be checked out. Joey will need CT scans every 3 months for at least 1 yr post-chemo, every 6 months for another year, and then yearly for his lifetime. Also any indication of a recurrence reults in more CT scans.

Meet Melanie:


Melanie has some speech delays caused by "probable hearing loss" that seems to have corrected with steroids for 2 months. She was never cooperative for the second hearing test so they marked it as probable hearing loss in one ear. now however she is extremely sensitive to noise and if we raise our voice even a hair she plugs her ears and cries "too loud mommy". Not really sure what all is going on with her. We are also having her checked because she is constantly thirsty and hungry and nothing seems to work and no matter how much she eats and drinks, she has lost 4 lbs in 3 weeks.

Deb April 17th, 2009 07:43 PM

Re: Meet our SN kids
We have got the cutest bunch of kids I've ever seen in one group!!! :wub:

iamkc April 18th, 2009 08:46 AM

Re: Meet our SN kids
OMG I'll post later with pics and explanation, but I wanted to say that your kids are freakin' ADORABLE! What a happy group of little ones!

AlexKatieAiden Mommy April 19th, 2009 12:05 PM

Re: Meet our SN kids
This is Alex. He was diagnosed with mild to moderate autism last July. He was 3 1/2 at the time of his diagnosis but I knew he was different from birth. He displays sensory seeking behavior (so I believe he has sensory processing disorder though he was never diagnosed) , so he has to wear a chewie tube all the time (or he chews holes in clothing, toys, and other objects) and needs a weighted blanket for when he has meltdowns. He has made alot of progress in the past 9 months with the help of school, occupational therapy, and speech therapy.
This is Katie. She is my niece that I have had custody of since she was 9 months old. She is now 3 1/2. When she turned two I noticed she was having alot of behavioral problems, she was extremely active, she had some sensory issues, she was very inattentive, and she was extremely forgettful. She was diagnosed with Fetal Alcohol Effects this past January. I am in the process of getting her evaluated for special education and she recently started occupational therapy.
The baby, Aiden, is 3 months old. I am concerned he may have torticollis, because he only turns his head to the left. Other than that he has had jaundice, group b strep, thrush, a staph infection, and a yeast infection in his short little life.

~~~Sara~~~ May 2nd, 2009 06:33 PM

Re: Meet our SN kids

Originally Posted by iamkc (Post 15423342)
OMG I'll post later with pics and explanation, but I wanted to say that your kids are freakin' ADORABLE! What a happy group of little ones!

I was so excited about Milo sitting up I came to read more about him, I hope you post about your kiddo!

iamkc May 2nd, 2009 09:38 PM

Re: Meet our SN kids

Originally Posted by ~~~Sara~~~ (Post 15639711)
I was so excited about Milo sitting up I came to read more about him, I hope you post about your kiddo!

Soon, I swear! That's part of the reason I asked people about Facebook-it's easier for me to put pics up there! :) I'm in the process right this minute of getting pics onto different servers so that I can put some on here! And I'll also tell Milo's story! Or, stories, I guess!

~~~Sara~~~ May 2nd, 2009 10:27 PM

Re: Meet our SN kids

Originally Posted by iamkc (Post 15641394)
Soon, I swear! That's part of the reason I asked people about Facebook-it's easier for me to put pics up there! :) I'm in the process right this minute of getting pics onto different servers so that I can put some on here! And I'll also tell Milo's story! Or, stories, I guess!

Yay, I would love to see pictures, but also just to know his story to be even THAT much more excited for his milestones, YAY!

stacyp May 6th, 2009 07:32 PM

Re: Meet our SN kids
Yes, Luke wants to read about his birthday buddy!!!!!! I don't do much with Facebook. I probably should.

iamkc May 7th, 2009 12:04 PM

Re: Meet our SN kids
Yes, stacy, you should. ;) I have so little time-fb is actually making it possible for me to keep in touch with people, or at least FEEL like I'm not so isolated! OK...pics and story coming within 24 hours here. Promise.

stacyp May 7th, 2009 12:45 PM

Re: Meet our SN kids
Maybe I'll work on it this weekend.

Tara0906 May 14th, 2009 09:07 AM

Re: Meet our SN kids
Justin 6 years old.
Diagnosed with mild C.P. at age 2.
Has a speech delay, sensory issues, adhd. He also has kidney reflux, strabismus (sp) "lazy eye".
He is in 1st grade.

Dacontay4 May 14th, 2009 11:34 AM

Re: Meet our SN kids
I'm enjoying reading about all your kids! Can I do this without pics? I don't like putting pics on public boards.

docsmomma May 21st, 2009 09:43 AM

Re: Meet our SN kids
of course you can do it without pics!

carajean9999 June 2nd, 2009 04:23 PM

Re: Meet our SN kids

ADDISYN IS 2 MONTHS OLD AND WAS DIAGNOSED WITH CHROMOSOME 2 DELETION q24-31 the day after she was born. this comes with mental and growth retardation, microcephaly, seizures, cleft palate, heart defects, mild-severe facial defects, and other problems in each case. so far she is very small only around 6 pounds 2 ounces and growing verrrry slow. she pretty much has to be forced to eat. the genetic dr said that her heart appears fine so no problems there and her palate is short but not cleft. she does have contractures in her hands and her facial defects seem to be one of the milder cases. seizures have occured in about 45% of kids with this. she has not had problems with this yet. lots of referrals already and we were told to just wait and she will tell us what she can do.

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