does your child have rare disorder or health problem

[hotsexymum]

does your child have rare disorder or health problem , if so what ? my little harry has a rare jean , and found it hard very hard , i like a rant and a cry as doctors in uk dont understand ,

My harry has xxyy toooo many gromozones , sorry can not spell , if your child suffers from any thing and any symptons it could help other people on hear and i find it good to talk .



my LITLLE HARRY has


Has XXYY Syndrome


Characteristics
XXYY is often mistaken for other syndromes. The most common symptoms and characteristics that would be noticeable by parents, teachers, medical professionals and other treatment providers are:

•Developmental delays
•Speech impairment
•Tall, considering family history
•Behavior outbursts & mood swings
•Learning disabilities
•Intellectual impairment
•ADD symptoms
•Autism, autism spectrum, PDD-NOS
•Scoleosis
•Clinodactyly (Curved-in pinky fingers)
•Low muscle tone
•Flat feet
•Sterility
•Delayed sexual development
•Undescended testes
•Low or no testosterone
•Dental problems
•Leg ulcers


Cause and Rate of Occurance

The cause of XXYY syndrome is still not completely understood. Since extensive studies have not been conducted on the cause of XXYY, there is currently very little information about whether or not there are environmental or other factors. However, there is no evidence that parents of one XXYY child are more likely to have other children with sex chromosomal variations. Sex chromosomal variations in general are actually quite common. The occurance of XXYY is 1 in 17,000 live male births. Klinefelter Syndrome, XXY, is 1 in 500.



Diagnosis
Diagnosing xxyy requires a genetic test called a karyotype. The test is done by drawing blood and an analysis is done on the cells of the blood to determine the boy's chromosomal make-up. In some instances, a boy can have some normal xy cells and some xxyy cells. This test is the only way to know for certain that a boy has xxyy.


harry will grow up to 7ft or more and will have many problems .

 

[Mamafy]

Thanks for that hun

My little boy Joe (4) has chronic lung disease as a result of prematurity/over ventilation
My little girl Katie (2) has kidney reflux in her right kidney, diagnosed last year but has had it from birth.

Joes condition is generally ok but when he gets ill, he can get really ill he also seems short of breath all the time but its getting better as he gets older

Katies condition causes kidney infection and undetected it could have caused kidney damage/failure. Katie has had various xrays/scans/dye tests and thankfully has no kidney damage. She is on a low dose antibiotic every night to help keep her urine as sterile as possible so when the urine reflux's up her little tubes it won't damage them. The specialists tell me that it should right itself by the age of 4-6

 

[hotsexymum]

Thanks for that hun

My little boy Joe (4) has chronic lung disease as a result of prematurity/over ventilation
My little girl Katie (2) has kidney reflux in her right kidney, diagnosed last year but has had it from birth.

Joes condition is generally ok but when he gets ill, he can get really ill he also seems short of breath all the time but its getting better as he gets older

Katies condition causes kidney infection and undetected it could have caused kidney damage/failure. Katie has had various xrays/scans/dye tests and thankfully has no kidney damage. She is on a low dose antibiotic every night to help keep her urine as sterile as possible so when the urine reflux's up her little tubes it won't damage them. The specialists tell me that it should right itself by the age of 4-6

thanks i think we al need to know what happens how we cope test ect and lern and teach each other , we can all help each and surport each other


My little girl Katie (2) has kidney reflux in her right kidney, diagnosed last year but has had it from birth.
My little boy Joe (4) has chronic lung disease as a result of prematurity/over ventilation


what help do you get , and any test what was done , ((((((HUGS))))) it must be sooooooo hard for you xxxxxxx

 

[Mamafy]

Not much help tbh, basically they hand you a diagnosis then expect you to deal with it

You can tell just by looking at Joes diaphragm, he has a dip in his lungs, his lung collapsed at 1 day old. My little man nearly didn't make it so many times and has been quite ill on/off in his first 1 1/2 years but he's not doing too bad now, getting stronger

Katie had many tests, some tests lasted all day and I was so worried but you just deal with what you have to deal with

Keeping our kids pain free and happy is priority

 

[hotsexymum]

Not much help tbh, basically they hand you a diagnosis then expect you to deal with it

You can tell just by looking at Joes diaphragm, he has a dip in his lungs, his lung collapsed at 1 day old. My little man nearly didn't make it so many times and has been quite ill on/off in his first 1 1/2 years but he's not doing too bad now, getting stronger

Katie had many tests, some tests lasted all day and I was so worried but you just deal with what you have to deal with

Keeping our kids pain free and happy is priority

Keeping our kids pain free and happy is priority it sure is bless you hun your a fab mum it must be sooooo hard , there was no info at all and not well explained for harry , hows your little man now ? i know what your saying as i was just left with harry , and its like now what do i do so many queastions ect hope we can build and lern about our child heath and diagnoius , hugs to you xxxxx

 

[Mamafy]

to you too hun xxx

 

[Mervs Mum]

you're special mummys x

 

[hotsexymum]

you're special mummys x

 

[luvbunsazzle]

girls

 

[(Bex)]

Hiya, My daughter Niamh (she'll be 1 in 2 weeks) was diagnosed with Pierre Robin Sequence (PRS) type 2 at 2 days old. It isn't known why/how it happens but Niamh's bottom jaw didn't grow whilst in the womb causing her tongue to stop her palate forming, resulting in a cleft palate.
Niamh was tube fed for 3 months and is now fed with squeezy bottles as she is unable to suck. She would frequently stop breathing as her tongue would block her airway and she had to sleep on her side with her mattress on a slope. As Niamh's tongue sits so far back she is unable to lick it out or blow raspberries and she has limited mcontrol of her tongue muscle.
Niamh has had 1 operation to close her soft palate so she can start to talk and will have her hard palate repaired next year. Feeding has always been an issue but is getting better everyday. We still have a long road ahead and i'm still trying to come to terms with everything that has happened over the past year. You just don't expect this, after having a fab home birth and thinking for 2 days you have a perfect healthy baby who isn't feeding because she has a tongue tie.
But on a positive note, it does seem that Niamh has isolated Pierre Robin Sequence and isn't at present showing any signs of any of the other syndromes that often come with PRS, so in a way we are very lucky.

Also forgot to say PRS is quite rare. There were about 250 babies in the midlands born with a cleft lip and/or palate and only 9 (including Niamh) had PRS

 

[Mamafy]

Thanks for that Bex

 

[hotsexymum]

Hiya, My daughter Niamh (she'll be 1 in 2 weeks) was diagnosed with Pierre Robin Sequence (PRS) type 2 at 2 days old. It isn't known why/how it happens but Niamh's bottom jaw didn't grow whilst in the womb causing her tongue to stop her palate forming, resulting in a cleft palate.
Niamh was tube fed for 3 months and is now fed with squeezy bottles as she is unable to suck. She would frequently stop breathing as her tongue would block her airway and she had to sleep on her side with her mattress on a slope. As Niamh's tongue sits so far back she is unable to lick it out or blow raspberries and she has limited mcontrol of her tongue muscle.
Niamh has had 1 operation to close her soft palate so she can start to talk and will have her hard palate repaired next year. Feeding has always been an issue but is getting better everyday. We still have a long road ahead and i'm still trying to come to terms with everything that has happened over the past year. You just don't expect this, after having a fab home birth and thinking for 2 days you have a perfect healthy baby who isn't feeding because she has a tongue tie.
But on a positive note, it does seem that Niamh has isolated Pierre Robin Sequence and isn't at present showing any signs of any of the other syndromes that often come with PRS, so in a way we are very lucky.

Also forgot to say PRS is quite rare. There were about 250 babies in the midlands born with a cleft lip and/or palate and only 9 (including Niamh) had PRS

((((((HUGS)))))) xxxxx thank you for sheareing that xxxx