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Old May 14th, 2014, 13:19 PM   61
sequeena
Trying to conceive (TTC)
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Join Date: Jun 2009
Location: South Wales, UK
Posts: 33,315
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.



 
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Old May 20th, 2014, 07:25 AM   62
Jo_Bean
Pregnant (Expecting)
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Join Date: Nov 2008
Location: Bath, UK
Posts: 18,446
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.



 
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Old Aug 30th, 2014, 21:40 PM   63
delmeg10
Mum (Mom)
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Join Date: Mar 2010
Location: Maryland, USA
Posts: 830
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.



 
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Old Nov 19th, 2014, 07:40 AM   64
Feathers
Mum (Mom)
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Join Date: Jan 2011
Location: Yorkshire, UK
Posts: 517
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.



 
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Old Jul 9th, 2015, 02:22 AM   65
momof2babies
Mum (Mom)
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Join Date: Jul 2011
Location: us
Posts: 248
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



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Old Dec 11th, 2015, 05:52 AM   66
sethsmummy
Mum (Mom)
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Join Date: Aug 2012
Location: Castle Douglas, Scotland
Posts: 13,896
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



 
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Old Jan 14th, 2017, 14:12 PM   67
KateNicola
Mum (Mom)
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Join Date: Oct 2010
Location: BC, Canada
Posts: 2,249
User Name: KateNicola
Name:Kate-Nicola

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: ADHD and possible Autism

Doran: designated speech delayed at 2 (now considered loosely language delayed), ADHD/Autistic tendencies.

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.

Marie: Being that she is not yet a year, I have no idea if she will have any of the same issues as her brother, but I cant help but wonder...



 
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