Post your childs diagnosis!! - Page 33

[onceagain]

I just learned out this site today and am happy to have found it. My 3 year old dd has a severe congenital heart defect and underwent her first open heart surgery at 5 days old, second at 6 months old, was tube fed until just before her first birthday and was also on reflux meds until about 6 months ago. Because of all this, she was developmentally delayed, but has finally caught up for the most part. She still has another surgery to come this summer which may induce delays again, depending on how it goes. She also has issues with loud noises/or spikes in noises and rough (usually boys) play, along with, of course, being quite sensitive to hospital environments-understandably so. I've had her checked and they seem to this it's related to her past experiences, as opposed to being a sensory dx, but we may get a psych consult too, just to be sure.

Anywa, so glad to have found this section.

[hollytheteacher]

Tetralogy of Fallot here.

[heliotrope]

My son (2 yo) is newly diagnosed ASD. We are exploring allergies, diet and therapies. I am pleased to find this section of MDC.

[Enudely]

ulnar mammary syndrome. At least probably...

[sunshinek67]

Autistic?

The first sign that something was amiss in my oldest son's social development was that he was not speaking by the age of 2. I was referred to ECI specialists that came to the home for speech and occupational therapy by age 2 1/2. One day out of nowhere during a session, a fresh young OT blurted out AUTISM. My life changed dramatically from that moment on. Jed spent his preschool-elementary years under a school system that labelled him PDD-NOS so that he could receive his intervention services, while being mainstreamed gen-ed. Every year it was the same spiel, medication was going to be the key to Jed's success. It took years of unsuccessful off and on bouts with an array of different meds to realize that Jed doesn't need or thrive from the containment of a little blue or green pill; no, what Jed needed was to be taken out of an organized school environment and placed in a very productive and successful homeschool curriculum. His focus on academics has increased dramatically, as well as his self-esteem. He has social interaction through church, music lessons, and local gym activities with a personal trainer. Jed, and his younger brother, Jamie, are joining a home-school coop in the fall of this year. New to community, thanks for viewing.

Mama to Jed, 13, Jamie, 10, and Maddie 4 mos.

[lakotaangel]

I am new but not to special needs kiddos. I am the mom of 9 kiddos :, 4 with autism, and of those 4, 3 are FAS/drug affected kids that also have autism. We are gf/cf and they have lots and lots of allergies. One of the kiddos has over 50 allergies...so life gets pretty interesting here sometimes.
Am looking forward to learning about yours and maybe find some ideas for mine.
Ronni

[Bayleesan]

Congential heart defects, ASD, VSD, and an overiding right arch.

[BookGoddess]

Welcome to the SN board.

[tisesmum]

new here

tise's my first child, he was born with a cleft palate and club foot. we've done a karyotype and the results showed nothing was wrong, he's almost 9 months old and still weighs 8lb 2ounces..
i found at 4 months he was lactose intolerant so i started him on soy based formula. he has recurrent chest infections. he doesnt eat much. have been to all sorts of doctors but they say he's ok i should try harder feeding him.
i would love advice from everyone, what i could do to help him eat more and gain weight. he's well developed mentally, babbles a lot and just cut his first tooth. however, physically, he cant support his head, or sit up.
i was told its because of his poor weight gain. please help with advice, i really dont know what to do anymore.
any high calorie foods or anything would do.

[BookGoddess]

tisesmum - Welcome to the Special Needs board.
I think you'd get more responses to your question if you opened a new thread on this board regarding feeding and weight gain. You can post the same information you posted below. It's just sometimes people don't always look at this introduction thread so the mamas who know the answer to your question regarding weight gain may not have seen your post here.

Here is a discussion that might interest you. http://www.mothering.com/discussions....php?t=1061733

Have you tried mashed avocados, cooking with coconut oil, giving him extra protein? Those things helped my daughter although her issues are different from your son's.

[Peg Graham]

My son, Porter, is 4 1/2...'5' in June.

•AUTISM
Porter was officially diagnosed with having Autism (3/27/08). He is starting on a Gluten Free/Casein Free/Soy Free/Low Oxolate diet to help heal his gut. We successfully got him off Casein and Soy since summer 2008 and noticed an amazing increase in his eye contact and verbalization. Removing Gluten is next. Porter drinks Dari-Free (24 oz. per day) and started on Pea Protein (Feb 2009) added to his Dari-Free to give him more protein to his diet. He takes food orally, but needs to increase his amounts and variety of healthy, organic foods. Porter started Bio-Medical Therapy/Probiotics/Supplements (Feb 2009). We want to end his diarrhea, heal his gut, help him communicate effectively and live as normal a life as possible.

•HYPOHIDROTIC ECTODERMAL DYSPLASIA
This is one of Porter's diagnoses (4/07). Due to this condition, Porter cannot sweat to cool his body and if overheated, could spike high fevers, vomit, and dehydrate and seizure...and possibly die. Therefore, Porter always needs to be in an air condition/cooled environment and ice packs applied when needed. This makes him 'Medically Fragile'.

•IMMUNOGLOBULIN G DEFICIENCY (B-Cell)
Another one of Porter's diagnoses through a Bacteria phase study from Duke University by Dr. Robertson (8/07). He started on IVIg therapy (9/07) and gets infusions of 10% Gamunex (5g protein in 50ml solution) once per month from a Home Health Nurse via Home Choice Partners, for the rest of his life, just to stay alive.

•TOTAL PARENTERAL NUTRITION (TPN)
-Porter had a Central Line inserted into his chest via CHKD (2/13/07) and started on a 40% pump of TPN (Total Perenteral Nutrition) at 520ml and also in a separate pump of Intra Lipids at 100ml for 12 hours of nightly feeds. This is to help build his immune system and help him grow. This has been our 'liquid gold'. Porter has not needed any hospitalization since being on TPN.

•SPEECH/OT/SCHOOL/ACTIVITIES
Porter receives Speech and OT Services from CHKD on a weekly basis at 1 hr each and also from the Chesapeake School System (Speech 1 hr week and OT 30 min week). Porter is also enrolled in a Special Ed Pre School Program 2 times per week at a 1 hr session Tuesdays and Thursdays and attends My Gym every Friday for play group activities.

[woodsymommyof3]

My 7 year old DS has Asperger's Syndrome and possibly ADHD. The ADHD is on his dx, but DH and I lean more to his sensory seeking behaviors being mis-dx'd as hyperactivity.

He is mainstreamed with a full time one-on-one and is in the 1st grade. He gets OT, pragmatic speech, speech therapy, social skills, and reading help through school. He also gets OT and social skills outside of school.

I have 2 NT teens (DS16 and DD14) also. Although some times, their issues seem more difficult than my 7 year old's. LOL

Debbi

[Momma Aimee]

editing our old answer

now

expressive lang delay (12 to 14 months currently)

and

possible SPD -- working on full assessment for THAT

[BookGoddess]

Originally Posted by woodsymommyof3

My 7 year old DS has Asperger's Syndrome and possibly ADHD. The ADHD is on his dx, but DH and I lean more to his sensory seeking behaviors being mis-dx'd as hyperactivity.

He is mainstreamed with a full time one-on-one and is in the 1st grade. He gets OT, pragmatic speech, speech therapy, social skills, and reading help through school. He also gets OT and social skills outside of school.

I have 2 NT teens (DS16 and DD14) also. Although some times, their issues seem more difficult than my 7 year old's. LOL

Debbi

I've seen your posts around. Welcome to the SN Board!

Originally Posted by Peg Graham

My son, Porter, is 4 1/2...'5' in June.

•AUTISM
Porter was officially diagnosed with having Autism (3/27/08). He is starting on a Gluten Free/Casein Free/Soy Free/Low Oxolate diet to help heal his gut. We successfully got him off Casein and Soy since summer 2008 and noticed an amazing increase in his eye contact and verbalization. Removing Gluten is next. Porter drinks Dari-Free (24 oz. per day) and started on Pea Protein (Feb 2009) added to his Dari-Free to give him more protein to his diet. He takes food orally, but needs to increase his amounts and variety of healthy, organic foods. Porter started Bio-Medical Therapy/Probiotics/Supplements (Feb 2009). We want to end his diarrhea, heal his gut, help him communicate effectively and live as normal a life as possible.

•HYPOHIDROTIC ECTODERMAL DYSPLASIA
This is one of Porter's diagnoses (4/07). Due to this condition, Porter cannot sweat to cool his body and if overheated, could spike high fevers, vomit, and dehydrate and seizure...and possibly die. Therefore, Porter always needs to be in an air condition/cooled environment and ice packs applied when needed. This makes him 'Medically Fragile'.

•IMMUNOGLOBULIN G DEFICIENCY (B-Cell)
Another one of Porter's diagnoses through a Bacteria phase study from Duke University by Dr. Robertson (8/07). He started on IVIg therapy (9/07) and gets infusions of 10% Gamunex (5g protein in 50ml solution) once per month from a Home Health Nurse via Home Choice Partners, for the rest of his life, just to stay alive.

•TOTAL PARENTERAL NUTRITION (TPN)
-Porter had a Central Line inserted into his chest via CHKD (2/13/07) and started on a 40% pump of TPN (Total Perenteral Nutrition) at 520ml and also in a separate pump of Intra Lipids at 100ml for 12 hours of nightly feeds. This is to help build his immune system and help him grow. This has been our 'liquid gold'. Porter has not needed any hospitalization since being on TPN.

•SPEECH/OT/SCHOOL/ACTIVITIES
Porter receives Speech and OT Services from CHKD on a weekly basis at 1 hr each and also from the Chesapeake School System (Speech 1 hr week and OT 30 min week). Porter is also enrolled in a Special Ed Pre School Program 2 times per week at a 1 hr session Tuesdays and Thursdays and attends My Gym every Friday for play group activities.

It's great to have another mama who does biomed. We do a lot of supplements, special diet, some meds for DD who is on the spectrum.

[3-StarSystem]

ODS (5) - T.T.T.S. Survivor (donor twin), Infantile Seizures, Congenital heart defect (Since resolved.) and stroke with lingering right-side paralysis resulting in motor challenges, a speech impediment as well typical brain-injury related emotional challenges.

ODS (5 #2)- T.T.T.S. survivor with no lingering effects.

YDS (5) - T-cell Acute Lymphocytic Leukemia with C.N.S. 3 disease, some treatment related fine motor issues, chronically critical neutropenia, anemia and thrombocytopenia. (He has chronically "lazy marrow" as a result of treatment and often requires transfusions. We can do nothing about the neutropenia however and often can not leave the home for weeks at a time.)

We expect to face neurocognitive challenges in the future due to damage caused by treatment, but are still crossing fingers on that one.

He also has three intestinal hernias (Completely unrelated and almost laughable from our perspective!) that have yet to be resolved and won't be capable of being repaired until he's done with his cancer treatment at about 5.

[youngwife]

Hello!

My name is Rebecca, and I am a newb! I have six children, of whom, two have been diagnosed with Chiari malformation. My oldest also has Syringomyelia, mild Scoliosis, and Central Hypo-thyroidism.


We homeschool, so lots of chaos and a whirlwind of doctor appointments pretty much sum up our lifestyle.

I am glad to have found a site with other mom's that live with special needs kids.

Blessings to you all,
Rebecca

[sunflowers]

Originally Posted by youngwife

Hello!

My name is Rebecca, and I am a newb! I have six children, of whom, two have been diagnosed with Chiari malformation. My oldest also has Syringomyelia, mild Scoliosis, and Central Hypo-thyroidism.


We homeschool, so lots of chaos and a whirlwind of doctor appointments pretty much sum up our lifestyle.

I am glad to have found a site with other mom's that live with special needs kids.

Blessings to you all,
Rebecca

Hi Rebecca! My dd has a Chiari 1 malformation with syringomyelia (along with heterotopia but they are seemingly unrelated?). I was wondering if your children have any side effects from this yet. I was told to expect possible migranes in her ten years onward. Also if your children have had additional MRI's to track the syringomyelia (if it gets bigger or smaller)?

Welcome!

[BookGoddess]

A warm welcome to our latest additions to the board.

[pimms]

Hi Group!
I wish I knew about this site years ago! My son will be 6 the end of April and has been given the diagnosis of Charge Syndrome. He is currently in an integrated kindergarten class for 1/2 day and an inclusion class for the other half. He's made amazing strides in catching up to his peer group, with lots and lots of therapy. He is basically globally delayed, he receives OT, PT and ST.

Connor has Tetralogy of fallot and had a full repair at 4mos old. He had corrective surgery for Intestinal Malrotation and 8 mos old. He wears glasses for bi-lateral retinal colobomas. He is under the care of a neurologist for a random seizure last summer, although and mri revealed nothing abnormal. Unlike many kids with his same diagnosis, he does not suffer from hearing loss/impairment. He does struggle with his balance and coordination, expressive language and some other fine motor skills. We also see a urologist to keep a watch on a dilated kidney. We've had lots of other specialists, but thankfully as he's outgrown some issues, we've been able to cross them off or see them less frequently.

We started Early Intervention services before his open heart surgery at 4mos old and have been on the course ever since. We've been through lots of issues and stages, and are embarking on new phases too. I hope we can be of mutual support and information sources as we tackle these challenges!!

And lastly, I am so excited to be part of a group who knows what it is like to parent a child with some special circumstances!

Becca, Mom to Connor 5, Brooke 3, Tory 1

[BookGoddess]

That's quite a lot you've been through. Welcome aboard.