dd having loads of drop attacks this morning, whos childas then i want to ask a question please?

[trace2]

dd started having lots of drop attacks this morning i know some one on here said there child had them to ( sorry forgot who) well dd is then reaching( she carnt be sick had a opp to stop it) is it conected? or riven do you know any thing? do i ring her pead?

Hi Trace, DD has drop attacks, but no other symptoms such as vomiting. I can't remember your history but are drop attacks something your daughter is known for? Is it definitely drop attack you are seeing, or collapse? What I mean is, could she have a virus and be losing her balance, or does she just seem to be like a puppet with her strings cut?

hi thanks shes ok now no was drop attacks been seen by nurse still waiting for neuro to get in touch and no more reaching it was just after ever drop she did it! was really miserable and slept for a few hours so ok now.

Hi Trace2. My ds has episodes of drop attacks (amongst all the others.) He has Angelman Syndrome. They are usually breakthrough episodes ie his meds need changing/upping or hes unwell, He also retches/heaves alot without ever vomitting although it is not related to his seizures. There is a type of seizure that causes a person to retch but with him it isnt this either. It has been put down to chronic vomitting syndrome (or something like that)and he does it reaction to stress or anxiety. He constantly retched every time he went near the new baby, new situations, when we are trying to feed him and he doesnt want to eat etc etc. Its just something we got used to but I do sometimes have to explain to people that he isnt actully ill when he does it! (its great in restaurants or in a crowded place!!

What dx does your dd have?

monstermansmum dd dont have a name yet for her symtoms our pead sent us to genetics for guess what angelmans! but the genticist thinks may be some other rare genetic symdrom she as lots of diffrent types of seizures since birth plus other things but like i said dont know yet

plus dd as a gatric feeding tube

Why does she think it isnt Angelmans? I have read several posts you have written and thought she sound like its A.S. What is she being tested for? Retts, idic 15 and mowatt wilson syndrome sometimes 'look' similar.
Where are you in the country? If you are near Manchester you could ask for a referral to Dr Jill Clayton-Smith at St Marys. She can spot AS a mile off, as well countless other syndromes! (she is the national expert in Angelman Syndrome and other rare conditions) she is always happy to do secoond opinions-I know families that have traveled up from London etc to see her. Most AS kids have lots of different types of seizures and many also have feeding tubes, bad reflux, etc. Hope you get your dx soon. x

monstermansmum i sat crying reading your post to me ! dh thinks maybe she as a mild form, our friends ds as angelmans hes a loverly little boy he found out end of last year hes no speach, chloe as a little, getting better, he carnt walk,stand, chloe can in her own way but getting better, our genetic thought her speach was to good for a angelmans child, but said that she as many syptons of AS which could mean many diffrent gentics like angelmans. we have been asked in for a blood test from me and chloes dad tomorrow as they have an idea, all i know is they said they will do there best to find out.

chloe is obsessed with water,so much we have to watch her full on near it, it scares me, her hair is blond me and dh are dark, she loves the wind in her hair again excites her lots, she as a flat head at the back but growing out now, her eyes have a little fold under them, god i could go on for ever.

but i would like to thank you for replying to me and going to talk to dh about manchester its only an hour away, we are in south yorkshire

monstermansmum i would love to see a pic of your ds are you on spk?

Trace2, I'm sorry if my post upset you!! There are a few different 'ways' of having AS-deletion, mutations, translocations, and they have recently discovered a rare mosaic form where the deletion is only present in a few random cells rather than every cell. You can also have a clinical dx because it can only be AS even though the tests are inconclusive. Kids with Deletion are usually more severe, although there is huge variet in differnces-most del+ dont talk, most WILL walk but maybe late, their receptive skills are far better than their expressive skills. My Ds walked at 3.5ish, doesnt talk, but he has days when it seems that he understands most of what we say and ther days when we may as well not talk to him!! Kids with the other ways of havng it can talk (some almost 'normally', walk, their hair/skin colour is the same as the rest of the families etc. If you think its AS you need to talk to smene who knows about it really, most GPs/paeds only know the basics.
I have organised a family fun day at my sons school for families with AS, please feel free to come along. All the kids are welcome and any members of your family that may want to come with you. Even if your dx turns out not to be AS, at leaset youll have met a few families, learned abit about it and had a goood day! My email add is [email protected]. I can send you a couple of pics-I havent worked out how to put them on here yet!! My ds is a fanyastic little boy (arent all ds/dd's??). Hes a real character, has brilliant sense of humour, nd even though there are hard days and weeks, I really dont think I'd change him!! (except the challenges for him maybe please email me-I live in Bolton so were not too far away! (on facebook too) xx

oops!! What awful spelling!!! I have had half a glass of wine before my tea-can't you tell!!

once again thank you! we will consider the fun day ? is there a lot near you will AS? as was told its very rare.

im not so sure my self she as AS but i do think its genetic

DD also has drop seizures - they usually happen when she is sick and has a fever. Don't think she's had any when well in herself. They don't bother her much - I guess the biggest danger is falling and hurting herself.
Monstermansmum - fun day sounds great - don't think we'll be flying over though!!!

Angelman's is still classed as rare but they are 'discovering' that alot have been mis-diagnosed with CP or Autism+GDD. Plus theres 'new' ways of having it thanks to advances it genetics + science.Its about 1:20,000 aprox. ASSERT has about 500 registered families and I suppose there may be that many un-registered aswell???? We have bout 100 families in the N of England I guess .

Shame you cant fly over SJ, sure it not worth it for 5hrs!!! Is your dc AS aswell or are just trying to gatecrash???

SJ, Duh!!!! Sorry

well we found out today the reaching is a bug from respite

Hi montermansmum - yes deletion - we spoke before. I think you remember now. I will mail you again but we've had a hectic few months with DD in and out of hospital, but all is well now