Post your childs diagnosis!! - Page 29

[LittleSaylorBoat]

My daughter Saylor has officially been diagnosed with Osteogenesis Imperfecta Type 1 which is a genetic disorder characterized by low bone density, meaning she can break bones by tripping over her own feet. It's challenging because she can't really ever fall ever or she could end up in a cast. So she must be watched constantly. And I get accused of child abuse a lot because it's weird for a 2 year old to have a broken leg.

More about Osteogenesis Imperfecta www.OIF.org

[homemademomma]

i don't know if i have posted in this thread yet. my daughter has ataxia telangiectasia. she turned 2 in june.

we just learned of her diagnosis (although we have suspected it since march), and i am still reeling from it.

[Momma Aimee]

Theo is 2 years and 8 months and has just gotten dx as expresive speach delay. We've been working with Early Intervention since he was about 20 months, at 2 years and 8 months he has less than 10 words and about 15 ASL signs.

his other communitcation skills are on targetr, and his recpetive language is actually a little ahead.

no other cog issues.

no real DX or WHY given.

starting speech threapy 3x a week -- twice one place and once one other place.

[maemaesmama]

Sophia Grace is 2. She was diagnosed with ALL Acute Lymphoblastic Leukemia. She is undergoing Chemotherapy, and responding well to treatment. I am looking for more information on pain managment, and diet.

[jaimemcallistr]

Cassidy Marie

My 14 month old daughter has CHARGE syndrome, a genetic disorder. Born at 7lbs and 2ozs, at 14 mos weights 11lbs. She has a trach from Choanal Atresia/stenosis. g-tube/nissan. moderate hearing loss, some vision loss.She has Coloboma os the iris muscle/tone problems. heart defects, she's about the age of not even 4 months. But she is the best thing thats ever happened to me!!!!!

[2boyzmama]

Welcome! My son has 22q deletion, called Velocardiofacial Syndrome or DiGeorge Syndrome, which in many ways is similar to CHARGE Syndrome. That was on our list of differential diagnoses when meeting with the geneticist. I think you'll love this group on Mothering, the special needs forum is the best source of support and information I've found yet! It kicks the pants off of any yahoo group I've been on

[Bens*Mommy]

My son, benjamin is 16 months old and was diagnosed 4 months ago with a rare genetic disorder called Hurler's Syndrome. He is being admitted into the hospital on August 4th and will have a stem cell transplant using donor umbillical cord blood on August 14.

[BlissP]

Originally Posted by mamapoppins

HUGS to all you mamas!!

I've been on MDC for a long time, but am just now posting here. Can we say denial?

I was just about to come and write this!

I'm Bliss - I haven't posted on MDC since Henry, my youngest, weaned nearly a year ago, but since then Jack, my oldest (he will be 4 in November), has been diagnosed - autistic disorder. His doctor definitely believes he is quite high functioning. He was diagnosed in April, and I still feel like we are trying to get our ducks in a row, but he's doing great. Language is one of his most significant delays, though he has always talked, but much of it was in his own language or movie scripts. However, since starting speech therapy in January, he has made HUGE gains in that area. He has also started occupational therapy to deal with some sensory issues, and in this area he seems to actually be having a tougher time right now, but I can't help but wonder if it's because he is having some sensory experiences that, up until now, he was able to avoid (he tends to avoid, rather than seek). In a few weeks, he will start attending a traditional preschool in an inclusion program - he and another little boy with autism will share a facilitator who will attend school with them every day (they are the only two "nontypical" kids out of a class of 14.) I believe he will enjoy the structure...I will miss him (he is going every morning.)

Anyway, glad I finally made it over here.

[BookGoddess]

Welcome to all the mommies.

Originally Posted by jaimemcallistr

My 14 month old daughter has CHARGE syndrome, a genetic disorder. Born at 7lbs and 2ozs, at 14 mos weights 11lbs. She has a trach from Choanal Atresia/stenosis. g-tube/nissan. moderate hearing loss, some vision loss.She has Coloboma os the iris muscle/tone problems. heart defects, she's about the age of not even 4 months. But she is the best thing thats ever happened to me!!!!!

I have a friend whose son has CHARGE syndrome. He is now in his teens. He has vision loss and some hearing issues. He goes to an inclusion school. He's a full member of his community and accepted by them.

My friend is active in a national CHARGE organization. If you want more information about her group, let me know.

[2 in August]

Welcome to all the new folks. This is a very supportive group. I've only been posting here a couple months and it feels so comfortable to talk here.

[lucalisa]

child with epilepsy

Hi I just joined this forum. My son just got diagnosed with epilepsy. we are pretty freaked out, anti-meds and looking for people who don't give their kids meds in spite of seizures. Do you know of research that shows how bad seizures really are? Places to look for info? thanks!

[Annie37]

My son Gavin is 13 months old & has spastic diplegic cerebral palsy. I had placenta previa, reeand placental abruption that caused it.

[BookGoddess]

Welcome to you both.

Originally Posted by lucalisa

Hi I just joined this forum. My son just got diagnosed with epilepsy. we are pretty freaked out, anti-meds and looking for people who don't give their kids meds in spite of seizures. Do you know of research that shows how bad seizures really are? Places to look for info? thanks!

I know there are several mamas on this SN board who have children with seizures. I'm sure they could provide some information and sources for you to research.
Open a new thread in the Special Needs Forum with this question. Not too many people seem to see this thread because it's pinned to the top and doesn't move up and down in the forum. There is also an Epilepsy Mamas tribe here. I'll try to find the link for you.

[BookGoddess]

Here is the Epilepsy mama group. http://www.mothering.com/discussions...light=epilepsy

Here's a thread asking if a child has to be medicated. http://www.mothering.com/discussions...light=epilepsy

[O'smama]

My Child's Diagnosis

Hello, I am a new member, and would like to tell you about my SN child.

My 10 month old son, Oskar, was diagnosed at birth with congenital hypopituitarism. A rare condition (1 in 100,000 born with it) where the pituitary gland and hypothalamus do not communicate together to give out signals to the body to produce certain hormones. He is currently on 3 hormone replacement therapies (cortisol, thyroid and growth), and will eventually need a fourth (testosterone).

At birth (by c-section), he had persistent pulmonary hypertension and went into respiratory failure. He ended up on ECMO (heart and lung bypass machine) for 4 days, and a respirator for an additional week. He stayed in the PICU for the first two weeks of his life where he was diagnosed with hypopit.

In addition, he has torticollis, and works with a PT once a week. Which has improved greatly.

Sometimes I have to remind myself that he does have special needs, because since day 1 this is how he is. This is all that I know since he is currently our only child. I would not want him any other way--it what makes Oskar, Oskar!

Thanks for reading.

[MelKnee]

My dd has developmental delays. She is 29 months and tests at -
Cognitive - 15 -18 mos
Gross Motor - 15 -18
Social - 18 - 24
Language - 12
Fine Motor - 16 - 19
Self-Sufficiency - 18 - 24

She has chronic fluid in the inner ear. She will be getting ear tubes at the end of the month. The therapists and doctors think the fluid is affecting her hearing and coordination and once the tubes are in, she should catch up fairly well.

[2 in August]

Hi and welcome to you both! I've only been hanging out on this part of mdc for a couple months, but there are some awesome moms and dads who post here! I hope you enjoy reading and posting here as much as I do. I'm learning so much.

[ryrysmama]

Hi, I am new here. My son was dx last year with PDD-NOS and SPD.

His language skills are from 18-24 momths of age. He will be 4 in late September.

He has been in speech therapy since he was 19 months old, also is in ot, pt, feeding therapy, and sensory integration therapy.

I am having him checked via MRI for a rare brain malformation that I have called Arnold Chiari Malformation type I.

[ShadowLark]

Wow, this is a LONG thread!
Brendon (almost two) has been diagnosed with Global Delays. Beyond that, we're not sure yet - we just started on our journey.
But we know he does NOT have Celiac Disease! (Just got the blood test results today!) WOOHOO!!!!!

[guest^]

Originally Posted by ShadowLark

Wow, this is a LONG thread!
Brendon (almost two) has been diagnosed with Global Delays. Beyond that, we're not sure yet - we just started on our journey.
But we know he does NOT have Celiac Disease! (Just got the blood test results today!) WOOHOO!!!!!

ShadowLark-I'm sorry about your DS.
If you had concerns about whether or not he has Celiac, did your doctor offer for him to be scoped? I ask, because, from what I understand(there is a lot of Celiac on DH's side of the family), a blood test is not the definitive answer to whether one has Celiac-an Endoscopy through the small intestine is *the* definitive test. Many,many people test negative on blood tests, and yet, when scoped, they are a sure positive. Just wanted to throw that out there, in case you weren't aware. I'm sorry if I've just dumped one more thing on you.

mp