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Old 11-15-2013, 02:19 PM   #16
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cakey09 HB User
Re: Anybody have children with dual diagnosis

Hello all im just wondering when anyone had a dual diagnosis of DS and ADHD. My son is 2 & 1/2, and he is definitely showing signs, but the doctors are just telling me that he's too young to be tested, this could be typical of children with DS etc! My partner also has ADHD, so this in turn increases the chances of him having it. Im at a bit of a loss at the moment, and its really starting to wear me down. This is my first child so I have no other experience when it comes to children or children with DS.

Below is typical of things he does that is making me question ADHD:

He will not sleep at night. He has to be physically restrained and held for a good half an hour, during which there is biting, screaming, pinching, hair pulling etc. If he were left to his own devices, he would literally keep spinning around in bed, for a good two hours, stopping every now and then, looking exhausted, puts his head down, has it on the bed for a maximum of 2 seconds, and then is off again.

constantly on the go, even when playing with toys, he has to be dancing when playing with them, throws them across the room, then might realise he wanted them, but on the way there finds something else, or stops and has a chat to himself.

teeth grinding to the extreme, has pushed his teeth back because he is constantly grinding,

screaming when he hears a noise that he wasn't expecting, which takes about 10 minutes to reassure him

pinching himself/poking himself in the eyes/putting fingers down his throat to make himself sick.

hitting other people, grabbing others, to the point he has had myself and his dad in tears as he has such a strong grip, and he seems to like the look on peoples faces when they are in pain, but continues with it trying to make it more painful. even when we are in the middle of a game, he will just lash out.

cant disciplined, tried different techniques, but they don't bother him.

These are just the things which have comes to the top of my head, Im sure there's more.

Im hoping that there are people out there has been where I am, who can give me some advice or who agrees that I have reason for questioning this, rather than me feeling like im doing the wrong thing.... many thanks in advance x

 
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Old 10-15-2014, 05:16 PM   #17
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ana2001 HB User
Re: Anybody have children with dual diagnosis

Hello I am glad that your daughter has now been diagnosed and being treated. I have a 13 year old sister named Anael who was diagnosed with HE about 7 months ago. I am seeking advice in wanting to know what type of treatments is your daughter receiving and how is her progress? I hope she is doing much better, I know how it feels to have a loved one diagnosed with this rare illness. My sister suffers basically the whole day with hallucinations due to HE. Her neurologist and rheumatologist have tried several treatments with her, but Anael doesn't respond how we would like neither have the medications. She is receiving intravenous steroids and IVIG every 3 weeks and we see no progress, she has been given a single dose of Rituximab and we saw slight improvement but no improvement at all with her hallucinations. Her neurologist has given us more options in treatments whether doing plasmaphresis or cyclophosphamide. We are concerned too because her neurologist has never treated a patient with DS. We have also been told that Anael is probably the first patient with DS diagnosed with HE in Houston. I would greatly appreciate a response and I am also willing to give any advice or help. God Bless you and my prayers to all the strong mothers and their children.

 
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