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Post your childs diagnosis!! - Page 36

post #701 of 735

Introducing myself

Hello! My name is Rhiannon and I'm the proud mom of an amazing 5 year old little boy named Carter Blaze. His main diagnosis is Duchenne Muscular Dystrophy (DMD), but he's had various different medical problems since birth. In addition to the DMD, his current diagnosis' are growth hormone deficiency, asthma and anaphylactic food allergies (milk, peanuts and cashews). Look forward to getting to know you all.
post #702 of 735
Ny daughter was diagnosed with Sensory Integration Disorder and a Sleep Disorder. She is also Developmentally and Speech delayed due to the sensory issues. That said - she had progressed in HUGE ways over the past 1.5yrs and I wonder if her delays are no longer. (or maybe I'm just a bias mommy. ) Either way, they are just labels....she is happy...and for that I am, as well.
post #703 of 735
All 3 of my children have low muscle tone, with varying degrees of delays. They are all gluten intolerant, my oldest son also has sensitivities to soy and dairy as well as an anaphylactic tree nut allergy.
post #704 of 735
welcome rhiannon, momrbh, and DanAbimytwomiracle!

: good to see some new faces.
post #705 of 735
My name is Amber

I have a 13 yo son with ADHD/ODD. It is a continuous battle. We have our good and bad times finding the best way to meet his needs and keep the rest of us sane... LOL

I also have two other boys aged 5 and 22 months. I also work in EI as a case manager with my local Regional Center.
post #706 of 735
Welcome to the SN board. You really see it from both sides, huh? As a SN mom and as someone who works in a profession helping other SN families. It's good to have you here.
post #707 of 735
Hi. I'm a Mommy of 3 amazing children. My youngest daughter is 14 mths old and has Laryngomalacia, Tracheomalacia, Hypotonia, Ataxia, Reflux, Petit Mal seizures, Cerebral Palsy, and many other health issues and birth defects. Her doctors believe she may have a syndrome since she has a few markers. She will most likely have airway reconstruction sooner or later.

I hope to get to know everyone and learn from some of the other CP Moms.
post #708 of 735
Quote:
Originally Posted by CPMommy View Post
Hi. I'm a Mommy of 3 amazing children. My youngest daughter is 14 mths old and has Laryngomalacia, Tracheomalacia, Hypotonia, Ataxia, Reflux, Petit Mal seizures, Cerebral Palsy, and many other health issues and birth defects. Her doctors believe she may have a syndrome since she has a few markers. She will most likely have airway reconstruction sooner or later.

I hope to get to know everyone and learn from some of the other CP Moms.
Welcome! That's so much to be dealing with.
I'm glad you found the forum!
My kiddo has a mitochondrial disorder that causes a lot of seemingly unrelated issues. In that way his diagnosis is similar to your daughter. But he's less affected than typically and we're just dealing with a few body systems at this time (though mito progresses).
post #709 of 735
Hi to all the brave parents.

My daughter was diagnosed with Biliary Atresia at 4wks old, liver deformity where there are no or blocked bile ducts to drain the toxins the liver filters causing chirrosis. She had temp corrective surgery (Kasai) at 8wks and was listed for liver transplant at 7 months.

She surpassed all the ominous predicitions given, never needing an NG tube, never having to live in the hospital waiting for her new liver. I atest that to the extreme prayer coverage we recieved.

She was transplanted at 14 months (we got the call on Father's Day). She has since been the epitomy of a healthy toddler, aside from the meds, doc visits, and having to be very cautious due to her immune suppression, she's a vivacious 2yo.:

I'm expecting our second, a boy, in Nov. I'm very nervous and am trying really hard to connect with this pregnancy better than initially.

Praying for a healthy baby boy.:
post #710 of 735
Congratulations on your new baby boy! Welcome to the SN board.
post #711 of 735
Hi! I'm Becky and I have 5 kids. My youngest is 3mos and he was born with 2 TEFs and EA (tracheo-esophageal fistulas and esophageal atresia). He had surgery when he was 24 hrs old to repair them but we are still dealing with the problems from his birth defect like GERD, narrowing of the esophagus, tracheomalasia and broncomalasia. He has a Mic-key button that we only use when needed, like after a procedure. Mostly he nurses like a champ! He also has VSD and ASD. He might have some urology issues, but we haven't seen the urologist yet.

I am so glad to have found this forum! I wish all of you the best of luck on this journey.
post #712 of 735
Hi, I'm making myself official! I'm Mandy and I have 3 kids.

Eliya is 8 and has SID-she was released from OT at 3 but I'm thinking we are going to go back...she has problems self soothing and with balance that we just don't know how to cope with.

Isaiah is 5 and has a lazy eye that the dr's don't know how to get to work...we're seeing the second specialist in August, he also has speech delay and malrotation of the small intestines. He's never had them twist and we're praying that doesn't change!

Silas is 4 and has SID and Speech Delay, he's a booger and knows it.

Thanks for a place I can come and feel normal and not have to teach ppl a new vocabulary just to talk about my kids!!
post #713 of 735
A warm welcome to you both.


Quote:
Originally Posted by justmandy View Post

Thanks for a place I can come and feel normal and not have to teach ppl a new vocabulary just to talk about my kids!!
I know what you mean. It's nice to not have to explain everything. It's nice to have people who understand the joys and frustrations SN parents experience.
post #714 of 735
I'm Lisa, my 2 year old was diagnosed with autism a month ago.
post #715 of 735
My DD2 is almost 9 weeks old and has ToF with pulmonary stenosis, grade 3 kidney reflux, mild hypotonia, erbs palsy, etc, etc(seems like it never ends!)

She is still in the NICU (from birth), had her first open heart surgery at 6 weeks old and will probably be tube-fed when she comes home.

Because of shoulder dystocia and a misplaced ventilator, she was without O2 for 2 minutes. She had seizures on day 2 after her birth and went into cardiac arrest the 3rd day. She is doing well now and we dont know if there are any neuro problems (none seen so far). Its just a waiting game now!

Im so glad Ive found this board!!!!:
post #716 of 735
I have four amazing special needs children:

My oldest daughter is 7. She is a former 24 week micro-preemie micro-wonder. She is blind due to Retinopathy of Prematurity and has significant developmental delays and will require life long care. She has also been remarkably healthy and the most mild mannered, easy going of my crew!

My oldest son is 5. He was born full-term with Interuterine Growth Restriction. He has a growth hormone deficiency, various facial deformities that lead to tear duct reconstruction and chronic sleep apnea, and also has a diagnosis of High Functioning Autism. He is my Mr. Intensity and he does everything with 1000% enthusiasm.

My second daughter is delightfully two. She was born with multiple congenital heart defects, had her first interventional catherization in January followed by her first open heart surgery this May. She has been struggling with deteriorating function of her left ventricle and aortic insufficiency. She's been given an 70-80% 10 year survival rate, but we take that with a grain of salt. She is most precocious child and takes the world by storm.

My second son is also delightfully two. He is also a former 25 week micro-preemie micro-wonder. He has Fetal Alcohol Syndrome and was exposed to multiple illegal drugs in utero. He has ataxic cerebral palsy, brain injury, chronic lung disease, and developmental delays and is g-tube fed. He is consistently my Mr. Sunshine. Always laughing and always smiling about something...even when that something is provoking a sibling into screaming.

I am currently 20 weeks pregnant with kidlet number five. We are all eager to see what wonderful things he or she will be adding to our family.
post #717 of 735
My son is almost 2.5 years old, and has congenital hypothyroidism. His condition predisposes him to cognitive deficits. He has a language delay.. not sure if it relates to his condition, but in my opinion it does.
post #718 of 735
Welcome new mamas. I'm glad you found this forum. If you have any questions or you need help with something, please feel free to open a new thread in this forum.
post #719 of 735
Joined here 2 months ago when I was waiting for EI results. My son, 2.5 mos, was recently diagnosed with PDD-NOS. I love the special needs parenting forum. So there, coming out of lurkdom
post #720 of 735
That's the same age that DD got her PDD-NOS dx too.
Welcome to the board!
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