Post your childs diagnosis!! - Page 22

[Changed]

Thank you. Long time no see- how are you?

[wantingagirl2b#4]

Hello all mama's! I was wondering if any would interested in a little easier post to supplement this original thread? This is a great idea and I love it but just thought this would be easier something like this...see below

Patrick DOB-7/15/98 Diagnosis
SVT (Supraventrical Tachardia)
WPW (Wolff Parkinson White Syndrome)
Sensory Integration Dysfunction

I'm thinking more families can be matched this way. I know I myself subscribed to this almost a week ago and I am still reading with no match or pen pal for my son. What's everyone's thought's or ideas on this.

[niki_73]

Originally Posted by wantingagirl2b#4

Hello all mama's! I was wondering if any would interested in a little easier post to supplement this original thread? This is a great idea and I love it but just thought this would be easier something like this...see below

Patrick DOB-7/15/98 Diagnosis
SVT (Supraventrical Tachardia)
WPW (Wolff Parkinson White Syndrome)
Sensory Integration Dysfunction

I'm thinking more families can be matched this way. I know I myself subscribed to this almost a week ago and I am still reading with no match or pen pal for my son. What's everyone's thought's or ideas on this.

come and join the heart defects tribe :

[dianamerrell]

hello mamas

my son 2 1/2 has Autism
he is non verbal
he is happy, gentle cuddly
he loves kiss and hugs
he pulls out and eats his hair
he knows his numbers, colors, letters and some words
he uses pecs to communicate
he is loved

[lunamegn]

Originally Posted by Jörð

Thank you everyone.

I'm so sorry for your loss.

[wantingagirl2b#4]

Originally Posted by Jörð
Thank you everyone.

I'm so sorry for your loss and may God give you the strength you need just for your daily living and place people in your life to give you the strength you need in order to bless others lives. Tight hugs mama!!

[MommatoMadison]

Originally Posted by txmama

Hi all! So glad to have found this board. I've been struggling lately to find other moms with special needs kids. I've got lots of friends with kids that are really sweet and supportive but they really don't know what it is like and have a hard time relating.

My son doesn't really have a diagnosis yet. He was born by emergency c-section at 34 weeks due to lack of movement. It is believed that something happened with his oxygen in utero. He spent 5 weeks in the NICU and had hypotonia and seizures. Now he is 9 months. The seizures are gone and he now has hyperextensive tone. He also has no oral skills so he has a nissen and g-tube. Developmentally he is at a 3-4 month level. Recently we have found that due to his poor oral motor skills he is unable to swallow his secretions and has been slowly asperating on them so now he is on oxygen.

I am looking forward to getting to know everyone better here!

Have they tested for Prader-Willi?

[MommatoMadison]

Prader-Willi Syndrome

My beautiful daughter has prader-willi syndrome. She was born on 9-21-06 9 weeks premature. I came to this site hoping to find some other mammas with PWS kids for some support. She is a delightful child. She is currently placed at the developmental age of 1 month moving toward 2. Any input would be great.

[2Peas14mnsapart]

I just saw this and think it's wonderful.

My DD is Anastasia born 08/04/05 diagnosis:

Epilepsy (Tonic Clonic & Petite Partial)
SID
Asthma
Allergies to medicines (Chloral Hydrate anaphalyxis, Contrast medium, Penicillin)
She is on Topomax, was on Clobozam

Diagnosed at 6 months.

We are looking at starting her on the Ketogenic diet because she has started having breakthrough seizures after only 2 months of being on the new Topomax.

If any one has info on the Ketogenic diet or experience I would LOVE to hear it!

[Changed]

Originally Posted by txmama
Hi all! So glad to have found this board. I've been struggling lately to find other moms with special needs kids. I've got lots of friends with kids that are really sweet and supportive but they really don't know what it is like and have a hard time relating.

My son doesn't really have a diagnosis yet. He was born by emergency c-section at 34 weeks due to lack of movement. It is believed that something happened with his oxygen in utero. He spent 5 weeks in the NICU and had hypotonia and seizures. Now he is 9 months. The seizures are gone and he now has hyperextensive tone. He also has no oral skills so he has a nissen and g-tube. Developmentally he is at a 3-4 month level. Recently we have found that due to his poor oral motor skills he is unable to swallow his secretions and has been slowly asperating on them so now he is on oxygen.

I am looking forward to getting to know everyone better here!

Ya, i'd ask the geneticist about monosomy 1p also. It's believed to be one of the most common deletions but is only newly diagnosable within the last few years.

[kandace]

Jörð, I am so sorry to read of your loss.

I am new to posting so I thought I would pop onto this thread too! I don't have any kids, but I work with terminally ill children (largely with rare genetic diseases) and with a boy who has autism (relatively high-functioning--he is verbal, but uses PECs as well). Currently I am getting more training in ABA and learning a lot about developmental psychology.

[foreverinbluejeans]

3 children with Primary Immune Deficiencies (PID) (boy in the bubble disease)
all 3 have asthma
youngest has bipolar disorder

They are now 27, 24, and 19 and were diagnosed with PID (common variable immune deficiency) in 1988. The 20 year survival rate is only 64%.

I was diagnosed with adult onset PID while pregnant with my youngest.

[Kitsune6]

Nate is 3.5 yo
He has be diagnosed with SPD (seeking)
He is behind on language and probably ASD but we'll cross that bridge when we get there. He uses echolia a lot but always appropriately. He's my little mystery but we're doing our best to figure him out.

[lil_stinkyfeet]

Originally Posted by Jörð

Sadly, I am updating to report that my daughter Meg passed away May 5th, 2007. Thank you for your support over the last few years.

I am so sorry for your loss.

[Kerriemoe]

My DS has been diagnosed with a delay of about 14 months in adaptive development, cognitive development, and speech. He has physical delays and has been approved for a lot of services, including an all-day, all-week integrated preschool program, with OT, ST, and PT.

He has echolalia, both immediate and delayed, and some sensory issues.

Some days I think he may be ASD, other days I think there's no way. Maybe some day we'll figure it out; in the meantime, we're just struggling through all this new stuff and hoping to start his therapies soon.

[CrystalDawn25]

My DD's diagnoses

My DD was diagnosed with Positional plagiocephaly I am doing aggressive repo and its working wonderfully for my DD , My DD also has muscle tone of a 3 month old still not sure what is causing that yet seeing a ped neurosurgen and genetics to see if they can shed any light on that subject. She is now sitting up a bit unsupported but is still struggling with those muscle to crawl.

[MARIE]

I have a 9 year old that has uniocular vision (he only uses one eye) and is ADHD and another 7 year old boy with Sensory processing disorder with ADHD component also.

[kblackstone444]

Post your childs diagnosis!!

I'm new here. My son was just diagnosed with Asperger's Syndrome. He just turned twelve. I also have a "perfect" six year old stepdaughter, which doesn't help matters. Any advice or anyone in a similar situation? Anyone live in NY?

[gingerstar]

Nonverbal Learning Disorder

First I want to say Jord (I don't know how to make the special letters)
I am so sorry for your loss.

After reading through this loooooong thread, I am amazed at all the strong mamas, and I am grateful for the good health of my girls. I hardly feel like I belong in the same group, but I want to post in hope of connecting with other mamas of kids with NLD.
My eldest has asthma, hypothroid, and nonverbal learning disorder, which is now beginning to cause problems at school, so in the fall they are going to do testing. I asked them to last year, but they said she was doing well so they were not going to. I can work with most of it, but for me the hardest thing is seeing her social trouble. She wants to have friends, but not being able to read nonverbal cues, like body language, she does not do well socially. She was in an equine-therapy class for social behaviours which helped her but right now we cannot afford it, and she misses it.
It is such a rare disorder, I am always looking for others who are coping with it.

[ladonnaken]

My oldest DS was just diagnosed as having Asperger Syndrome, Hyperlexia, and OCD. He also has sensory difficulties. He is 3 years old.