Post your childs diagnosis!! - Page 15 - Mothering Forums

Forum Jump: 
Reply
 
Thread Tools
#421 of 737 Old 05-21-2007, 02:13 PM - Thread Starter
 
Changed's Avatar
 
Join Date: Mar 2004
Posts: 7,146
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Thank you. Long time no see- how are you?
Changed is offline  
Sponsored Links
Advertisement
 
#422 of 737 Old 05-21-2007, 07:19 PM
 
wantingagirl2b#4's Avatar
 
Join Date: Jul 2006
Posts: 815
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
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.
wantingagirl2b#4 is offline  
#423 of 737 Old 05-21-2007, 07:24 PM
 
niki_73's Avatar
 
Join Date: Oct 2004
Location: land of raincoat, BC
Posts: 1,292
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by wantingagirl2b#4 View Post
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 :
niki_73 is offline  
#424 of 737 Old 05-21-2007, 07:50 PM
 
dianamerrell's Avatar
 
Join Date: Mar 2006
Posts: 255
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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
dianamerrell is offline  
#425 of 737 Old 05-24-2007, 06:38 PM
 
lunamegn's Avatar
 
Join Date: Nov 2004
Location: mountains
Posts: 1,068
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Jörð View Post
Thank you everyone.
I'm so sorry for your loss.
lunamegn is offline  
#426 of 737 Old 05-25-2007, 04:22 PM
 
wantingagirl2b#4's Avatar
 
Join Date: Jul 2006
Posts: 815
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
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!!
wantingagirl2b#4 is offline  
#427 of 737 Old 05-25-2007, 06:37 PM
 
MommatoMadison's Avatar
 
Join Date: May 2007
Posts: 16
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by txmama View Post
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 is offline  
#428 of 737 Old 05-25-2007, 09:23 PM
 
MommatoMadison's Avatar
 
Join Date: May 2007
Posts: 16
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
MommatoMadison is offline  
#429 of 737 Old 05-25-2007, 11:08 PM
 
2Peas14mnsapart's Avatar
 
Join Date: Aug 2006
Posts: 140
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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!
2Peas14mnsapart is offline  
#430 of 737 Old 05-25-2007, 11:34 PM - Thread Starter
 
Changed's Avatar
 
Join Date: Mar 2004
Posts: 7,146
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
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.
Changed is offline  
#431 of 737 Old 05-26-2007, 06:13 PM
 
kandace's Avatar
 
Join Date: Sep 2006
Posts: 51
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
kandace is offline  
#432 of 737 Old 05-29-2007, 04:48 PM
 
foreverinbluejeans's Avatar
 
Join Date: Jun 2004
Location: Tucson
Posts: 1,500
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

: Grandmother , 3 Adult Sons

foreverinbluejeans is offline  
#433 of 737 Old 05-30-2007, 04:20 AM
 
Kitsune6's Avatar
 
Join Date: Mar 2005
Posts: 2,729
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
Kitsune6 is offline  
#434 of 737 Old 06-01-2007, 08:11 PM
 
lil_stinkyfeet's Avatar
 
Join Date: Nov 2006
Location: In the Cold and Snow
Posts: 1,747
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by Jörð View Post
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.

Busy Mom raising 5 kiddos, 7, 6, 5, 2  and a brand new bundle!! (5/15/11)  cd.gifribbonpb.gifnovaxnoIRC.gif

lil_stinkyfeet is offline  
#435 of 737 Old 06-05-2007, 04:21 PM
 
Kerriemoe's Avatar
 
Join Date: Aug 2005
Posts: 342
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
Kerriemoe is offline  
#436 of 737 Old 06-10-2007, 01:46 AM
 
CrystalDawn25's Avatar
 
Join Date: Jun 2007
Location: NC
Posts: 7
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
CrystalDawn25 is offline  
#437 of 737 Old 06-18-2007, 12:10 AM
 
MARIE's Avatar
 
Join Date: May 2002
Location: NJ
Posts: 20
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.
MARIE is offline  
#438 of 737 Old 06-18-2007, 10:56 AM
 
kblackstone444's Avatar
 
Join Date: Jun 2007
Location: MA
Posts: 3,735
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 3 Post(s)
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?

I pray for the day Family Court recognizes that CHILDREN have rights, parents only have PRIVILEGES.  Only then, will I know my child is safe.
kblackstone444 is offline  
#439 of 737 Old 06-23-2007, 08:56 PM
 
gingerstar's Avatar
 
Join Date: Jun 2005
Location: The Room of Requirement
Posts: 1,531
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
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.

~*The days are long, but the years are short.*~
gingerstar is offline  
#440 of 737 Old 06-26-2007, 05:22 PM
 
ladonnaken's Avatar
 
Join Date: Dec 2006
Posts: 101
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My oldest DS was just diagnosed as having Asperger Syndrome, Hyperlexia, and OCD. He also has sensory difficulties. He is 3 years old.

Ladonna
Mama to Samuel (6) Gabriel (4) and Jacee (just born on 12/15/09 7lbs5oz 20.75 in)
ladonnaken is offline  
#441 of 737 Old 06-30-2007, 12:51 AM
 
my3peanuts's Avatar
 
Join Date: Nov 2006
Location: Northwest MN
Posts: 2,583
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My son has global developmental delays and was recently diagnosed with mild hypotonia and Generalized Seizure Disorder.


This was a while ago. He's recently been diagnosed with suspected mitochondrial disease and a secondary neurotransmitter disease.

Nicole, mom of 3. Mitochondrial Disease.: Epilepsy
my3peanuts is offline  
#442 of 737 Old 07-06-2007, 03:07 PM
 
supahero's Avatar
 
Join Date: May 2005
Location: Hamilton, Ontario
Posts: 19
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My son, Hayden (3 1/2) was diagnosed in April, and we're still waiting to hear where on the spectrum he lies and what therapies he's going to be eligible for.
supahero is offline  
#443 of 737 Old 07-06-2007, 03:53 PM
 
AndVeeGeeMakes3's Avatar
 
Join Date: Mar 2007
Location: In the Lovely South, Y'all.
Posts: 1,818
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My daughter was born with Pierre Robin Sequence. She has a cleft palate (two surgeries to repair, at least two more to go). She has a trach and a g-tube (mic-key). She is significantly speech delayed and has mild physical delays. She receives PT, OT, ST and Special Instruction. Later this summer she will have jaw distraction surgery to pull the jaw forward and, hopefully, facilitate the removal of the trach (within 1.5 years) and the tube (within 8 years - we hope). And, yet, with all of her problems, she is an utter delight! :

Wendy ~ mom to VeeGee (6/05), who has PRS, Apraxia, SPD, VPI, a G-Tube, 14q duplication, and is a delightful little pistol! I'm an English professor and a writer.
AndVeeGeeMakes3 is offline  
#444 of 737 Old 07-09-2007, 03:50 AM
 
plumpyellowchick's Avatar
 
Join Date: Jun 2007
Posts: 3
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Newbie here, hello all! My daughter Ava Jewel who is 18 months old was dx last month with William's Syndrome. Any other parents out there with a child that has William's Syndrome?

Warm regards

Anna
plumpyellowchick is offline  
#445 of 737 Old 07-09-2007, 04:04 AM
 
3_opihi's Avatar
 
Join Date: Jan 2003
Location: home
Posts: 3,721
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Welcome!

I'm pretty sure there are 1 or 2 families around here who have Williams Syndrome.
3_opihi is offline  
#446 of 737 Old 07-09-2007, 10:26 AM
 
aja-belly's Avatar
 
Join Date: Oct 2004
Location: North of Dallas, TX
Posts: 2,230
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by plumpyellowchick View Post
Newbie here, hello all! My daughter Ava Jewel who is 18 months old was dx last month with William's Syndrome. Any other parents out there with a child that has William's Syndrome?

Warm regards

Anna
hey there! our youngest has ws. i just posted to you on another list about 'self-feeding'.

Mama to Jet 6/05, Marvel 8/06 and Cash and Fox 2/09
Expecting Ada Marianne 11/14
aja-belly is offline  
#447 of 737 Old 07-09-2007, 08:01 PM
 
harrietsmama's Avatar
 
Join Date: Dec 2001
Location: Hesperia, MI
Posts: 1,627
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
I think my son is Bipolar. I am, my mom, aunt, my cousins, I think my Grandma, and there are stories of other family members. I have done a lot of reading about it. I am just not succeeding in getting any professional attention. He is very social and friendly much of the time and that is what most strangers see. They never get to see what it's like to have ten long intense sobbing sessions in one day. Hoping to find other parents w/ this issue and see what I can learn!

Heather, mama to Harriet, Crispin, in with Tom and 2
harrietsmama is offline  
#448 of 737 Old 07-09-2007, 08:05 PM
 
harrietsmama's Avatar
 
Join Date: Dec 2001
Location: Hesperia, MI
Posts: 1,627
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Hi there, I am looking to make contact with other parents of children that are or may be bipolar. How did you get a diagnosis and at what age?

Heather, mama to Harriet, Crispin, in with Tom and 2
harrietsmama is offline  
#449 of 737 Old 07-09-2007, 08:07 PM
 
harrietsmama's Avatar
 
Join Date: Dec 2001
Location: Hesperia, MI
Posts: 1,627
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)
Hi there, I am also looking for other parents of bipolar kids. Have you found any help? How did you get a diagnosis and at what age?

Heather, mama to Harriet, Crispin, in with Tom and 2
harrietsmama is offline  
#450 of 737 Old 07-19-2007, 05:19 PM
 
Angelx5's Avatar
 
Join Date: Jul 2007
Location: Wyoming
Posts: 13
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Our son(who passed away) had his esophagus disconnected from his stomach, he was also born with 4 fingers in his right hand and 3 in his left hand.

i will post more...

Well when i was pregnant I got a virus that it's called the vater virus, it affects several organs in the body, for instance, my son was born with his heart in the center, and he was born with scoliosis, but he passed away of another thing not of any of this.
Angelx5 is offline  
Reply

User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off