Another hospital trip

[Laura78]

Keeping you all in our thoughts and prayers. Hugs to Aaron x

 

[Hope81]

Good job tweety on getting him fast to the doctors. He has been dg fast and given treatment immediately both very important for the late outcome.
Did he get injectable ACTH?
I have only seen a dozen of west syndromes until now but I remember how terrified the parents were
Thinking of you and your little man.

 

[Lynds77]

so sorry to hear that. But is the prognosis ok?

just in case you were not aware, there is a UK support group, and they have a forum too for help and support.

http://www.wssg.org.uk/

 

[Ashley89]

Hope the tests have gone ok for Aaron and yourself! X
Thinking about you both x x

 

[mrz85]

Thinking of u and ur OH much loveX

 

[tannic]

Fingers crossed the drugs work. Sending lots of love to Aaron, you and Mr tweety

 

[Rachaellius]

Massive to you and your family Tweets, it must all be so scary for you all
I am so glad you now know what it is though xxx

Sent from my GT-I9300 using Tapatalk 2

 

[tweetyfoo]

Good job tweety on getting him fast to the doctors. He has been dg fast and given treatment immediately both very important for the late outcome.
Did he get injectable ACTH?
I have only seen a dozen of west syndromes until now but I remember how terrified the parents were
Thinking of you and your little man.

ACTH is too expensive for the NHS ... It's like $30,000 per injection.

They tend to try other treatments first.

He's on prednisone 3 x 5mg per day


Please excuse any typos from my fat fingers!
Tapatalk madness!

 

[babyem]

At least now they know there is some abnormal brain activity they can look at ways to resolve it or control it.

Will they be prescribing meds after the course of steroids? X

tapatalking x

 

[Lolly85x]

Sorry about the diagnosis

Aaron is a tough little cookie I'm hoping the medicine can get this under control quickly.xxx

 

[Simoneh00]

Tweety I've been hiding recently huni and only just saw this. Can't believe there's yet another bump ib the road for you and poor Aaron!
You know what though? You guys are so strong! You can get through anything!
I'm glad they have a diagnosis and are on top of it right away. I had a Google and it looks like babies with DS get a really really mild version so that's good news?
Massive hugs xxx

 

[Gayle30]

I had hoped they would be wrong but as I said yesterday once you know what your dealing with its easier in a sense to tackle. And I absolutley know you will face this with the courage, strength and dignity you have shown along the way. Your a wonderful mummy and Aaron is a little champ. You will see, he will continue to be the most gorgeous and clever wee man. Hes a credit to you guys. always at the end of the phone. Xxxxxx


tapatalking

 

[michelle35uk]

my friends little girl had the injections for 2 weeks then the prednisilone and now on something else...shes doing really well and im sure aaron will too.she said her little girls appetite went through the roof and turmed into a milk monster lol

 

[FirstBabyEek]

So sorry to have just caught up on this. Aaron has smashed all of the 'he won't be able to' or 'he'll be limited to' boundaries that the Drs have expected him to be and that's down to your sheer determination and he clearly has inherited that from you. Hopefully he will continue to astound everyone as far as this new challenge is concerned.

Keeping you all in my prayers xxx

 

[Doob]

I'm so sorry you're all having to go through this tweety xx

 

[tiaflame]

So sorry tweety, but Aaron has always been a fighter and proved them wrong and will continue to do so I'm sure. Big hugs xxx


Sent from my iPad using Tapatalk

 

[Les1504]

Aww big hugs hun, I know it isn't the same and you have been through so much more but I felt the same way when Harry was diagnosed with Beckwith Wiedermann syndrome. Our little boys are so strong though and I bet Aaron won't let this get in the way of his amazing development. As someone else said, he has overcome so many hurdles and come on in leaps and bounds xxxx

 

[CARNAT22]

I am with everyone else Tweety.

Don't see this diagnosis as something bad, it's if it wasn't diagnosed you could be in real trouble???? Knowing is always better than not knowing IMO.

Aaron is a fighter and he'll cope with this like he copes with everything else. So will you hun

xxxxxxxxx

 

[KarenC]

Sending you, Aaron and Mr Tweety lots of love xxx

 

[twinkles]

Love to you all tweety, you can get through this sweetheart x