Special Needs Board Information Log

Discussion in 'Special Needs Support' started by Deb&Matilda, Nov 24, 2008.

  1. sequeena

    sequeena Winging it.

    Jun 20, 2009
    Likes Received:
    User Name: sequeena
    Name: Sarah

    Child/ren Name/s: Thomas
    Chid/ren DOB/s: 07/08/2011
    My Child/ren is/are fighting: Global Developmental Delay, Hypermobility/Ehlers-Danlos Syndrome, hypotonia, hypoplastic thumb, bilateral conductive hearing loss, eye problems, dysmorphic features (possible genetic condition probably a chromosome deletion syndrome), Raynaud's syndrome

    Any extra info: Just started the genetics journey. Has portage once a week and goes to a disability playgroup once a week. Also has SALT, physio (starting rebound therapy soon), waiting for an OT and he gets a wheelchair soon.
  2. Jo_Bean

    Jo_Bean Mummy to Olivia

    Nov 30, 2008
    Likes Received:
    User Name: Jo_Bean
    Name: Jo

    Child/ren Name/s: Olivia
    Chid/ren DOB/s: 4th Feb 2013
    My Child/ren is/are fighting: Hypotonia/low muscle tone. Gross motor delay. Working diagnosis of M-CM (rare genetic disorder)

    Any extra Info: We attend PT on a monthly basis, have a stander at home and are just waiting for knee supports. She doesn't bear any weight through her legs. Can sit unaided but not get herself into that position, can't crawl, roll or walk yet. We also have OT and Speech and Language Therapy on a regular basis.
  3. delmeg10

    delmeg10 Mommy of 2

    Mar 14, 2010
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    User Name: delmeg10
    Name: Meg

    Child/ren Name/s: Luke and Jake
    Chid/ren DOB/s: Luke - 6/19/08, Jake - 9/1/10
    My Child/ren is/are fighting: Luke was diagnosed with Autism in January of 2011. Jake has global developmental delays and has been undergoing genetic testing since January 2013.

    Any extra Info: Luke has had his ups and downs over the years. We recently talked to his doctor about his aggression, outbursts, and tantrums. The doctor saw a total uncontrollable meltdown in the office one day and decided to try him on medicine for the first time. He just started Guanfacine (Tenex) three days ago. I'm brand new to medication. Neither of my sons have ever been on anything besides daily allergy meds and the occasional cough/cold medicine. I don't really know what to expect. So far, he's just really sleepy all the time.

    I have had a very difficult time relating to other moms in the "real world", so I'm hoping that this forum gives me a new outlook on having friends.
  4. Feathers

    Feathers Mum of 2

    Jan 24, 2011
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    User Name: Feathers
    Name: Ari

    Child/ren Name/s: Olivia (03.09.11) and Paris (06.12.13)

    Olivia is fighting: Noonans syndrome (covers many issues) with global development delay

    Any extra Info: We are supported by portage, speech and language therapy and physiotherapy.
  5. momof2babies

    momof2babies Well-Known Member

    Jul 27, 2011
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    User Name: momof2babies
    Name: julia

    Child/ren Name/s: Noah 10/20/09 and Hailey 10/29/13

    conditions child/children are fighting:
    Noah-asd, epilepsy, global developmental delay, asthma, absent thymus
    Hailey- hypermobility, low tone, spd, staring spells believed to be absence seizures, and a neuro developmental condition not yet diagnosed.

    Any extra Info: Hailey has therapy weekly and making great strides
  6. sethsmummy

    sethsmummy mum to 3 beautiful boys

    Aug 1, 2012
    Likes Received:
    User Name: sethsmummy
    Name: tara (28)

    Child/ren Name/s: Seth, Ethan, Rohan

    Chid/ren DOB/s: 4-12-09(6), 3-5-13(2), 23-12-14 (almost 1)

    My Child/ren is/are fighting:

    Seth - Failure to thrive, childhood diorrhea, Hypermobility, Autism (encompasing a lot of the traits with sensory issues, voilent outbursts etc), speech delay, development delay, fine motor skill delay. He is still classed as failure to thrive due to very limited diet and slow weight gain.

    extra information - seth is very small for his age at 34lb at 6 years old, he was born at 40*6 at 5lb 14oz where his head was damaged with foreceps. he has an extrememly limited diet and suffers greatly with sensory issues. he is such a bubble little boy who was non verbal until he was 4 years old but is now progressing greatly

    Ethan - Ethan is being watched closely as we think he may be on the autistic spectrum also

    Rohan - asthmatic tendencies, Full duplex kidney and collection system (Right), grade 5 hydronephrosis and hydroureter of said kidney caused by a large ureterocele which almost totally filled the bladder, this was punctured under general aneasthetic in june and another scan showed we are down to moderate hyrdronephrosis. He has an MCUG in January/feb to test the function and depending on the results he may need surgery to remove the duplex if it is dead and non functioning. He may have hypermobility, feet at angles when walking (hoping this corrects itself). We are also watching Rohan closely for any other problems due to oxygen deprivation.

    Any extra Info: Rohan was born at 36+5 weeks weighing 6lb 8oz. he needed nicu care for severe jaundice and group b strep. he was born grunting and blotchy. spent three days in an then released home. At 11 days old id noticed he was very snuffly and nothing was helping so asked a health visitor if he seemed ok and if the cough was anything to worry about and was told no. That night he had pauses in his breathing and the morning of the 4th jan he was extremely cold. later that morning he choked on vomit and stopped breathing, it took ten minutes between this first happening and an ambulance getting here (time to try get him breathing ourselves before trying to find a phone and call an ambulance). they got him breathing with oxygen but was hypothermic. Taken to resus where he had continuous apnoea episodes and sats would plummet so he was ventilated and sent to Yorkhill paediatric intensive care unit. He stayed ventilated for 5 days while they worked out he had RSV and bronchiolitis. he came off the vent onto cpap which lasted just over a week, during this time he developed pneumonia and his upper right lung collapsed, along with a bacterial infection. he was again a very sick baby and i wasnt allowed to touch him at all, the ventilation equipment was set up outside his room just incase it was needed. eventually off cpap onto high flow and then nasal cannula. we spent three and a half weeks in hospital in total. he featured in the UK cobhair chloinne programme on bbc alba.

    a busy household i have :)
  7. KateNicola

    KateNicola 1 BooBear 1 Button

    Oct 20, 2010
    Likes Received:
    User Name: KateNicola

    Child/ren Name/s: Doran William and Marie Aphrael
    Chid/ren DOB/s: 26/10/2011 and 25/01/2016
    My Child/ren is/are fighting: ASD/ADHD

    Doran: Designated ASD, ADHD and a language issue (he learns phrases rather than words)

    More info: He did not have many chances for social interaction due to the timing of our jobs and the times of resources where we lived and do live now. He is in Kindergarten and has fantastic support within the classroom, including a full-time aide. He recently began a daily dose of Dexedrine, with promising results. He still exhibits Autistic tendencies (I am a teacher with experience working with children on the spectrum). We are seeing the pediatrician in another week to touch base with the medication and see how the referral for a spectrum assessment is coming along.
  8. Shey

    Shey Mom of 2 TTC #3

    Feb 14, 2010
    Likes Received:
    User Name: Shey
    Name: Sheena

    Child/ren Name/s: Jayden
    Chid/ren DOB/s: 7.8.2008
    My Child/ren is/are fighting: ADHD, High Functioning Autism, Learning disability, developmental delayed

    Any extra Info: Jayden was diagnosed at 6 yrs of age with what he has. He does have an IEP (Individual Education Plan) and does get OT and Speech every week at school. He does get frustrated and does struggle.
  9. Rhio92

    Rhio92 Connor, Saskia, OH & Me

    Oct 25, 2010
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    Hi I'm new to this group. Been on bnb for years though :haha:

    User Name: Rhio92
    Name: Rhiannon

    Child/ren Name/s: Connor and Saskia
    Chid/ren DOB/s: Connor 13.11.10, saskia 21.3.15
    Saskia is fighting: juvenile idiopathic arthritis (JIA)

    Any extra Info:
    Only 4 months ago Saskia was like any other 3 year old. She was very active and sociable. She walked everywhere and was very independent.

    Then one day she started limping. Then her legs became swollen.

    She was treated in hospital but not even 3 weeks later she was swollen all over and in too much pain to move. She was treated in hospital again but we readmitted less than a week later.

    They had to do loads of tests to rule out cancers etc. She now has a diagnosis of JIA. We've been told hers is abnormally aggressive.

    So now we're learning to live with it. Some days she's very active and appears normal. Some days, like today, she's in a lot of pain and cant weight bare.

    On top of the pain and swelling, she's also tired and irritable more, and she's regressed slightly. She now calls me mumma, before she was starting to move on from mummy and I was frequently mum.
  10. Wobbles

    Wobbles BnB Co-Founder ~ Retired

    Aug 31, 2006
    Likes Received:
    Awww bless her. Mumma sounds more comforting doesn't it <3 my 10 year olds calls me Mama, I love it, no idea where it came from x
    Rhio92 likes this.
  11. Rhio92

    Rhio92 Connor, Saskia, OH & Me

    Oct 25, 2010
    Likes Received:
    It does! I love it but it's also heart breaking at the same time x

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