DH and I took DJ to the pead tuesday and its now 'offical' he has a 'global delay' but the pead thinks it could be more. due to DJ not walking, talking or even pointing at things. he's also a "ripped kid" (peads words) as in he's not got any fat on him at all. and this is a child who for brekkie alone eats 4 wheaties or a cup and a bit of oats!
so tomorrow we go for a blood test. the list of stuff to be tested is fairly long, and this is where my fear kicks in. how will they do it? he's a wiggle bum of a kid and he's not good with being held still for...anything. DH and I are going to take him - vic will be minded by my ILs. how do i keep him still? he cant seem to understand us as such...and i know it'll distress him...as well as DH.
we also have to send off for an MRI and come feb. we'll be starting at a special school type thing once a week for phyiso, speech and OT. we also have to book him in for an eye test and a hearing test. and we see the pead again in 6 - 7 weeks (to allow for the bloods to be tested ect)
i have no idea what to expect other then tears...how do you lovely ladies deal with it?
hey Dansta, my DD was originally diagnosed with global developmental delay, now CP. she has had hundreds of blood tests and they have always done a heel ***** or finger ***** (except when she had a line in). she is 3, had a blood test in December and they tried to do it the adult way with the tournaque (sp?!) and needle and failed miserably! she went nuts as soon as it tightened. they ended up doing the finger ***** - took waaaay longer but DD was fine, whinged when they first *****ed her, then was a bit squirmy so we sang songs, she played with a doll and my keys, and was overall not too bad. this was for 4 vial thingys of blood. the lady taking the blood and I had blood everywhere from her wriggling and pulling her hand away, but she was fine lol. for mri's DD still gets knocked out as there is no way she will stay still or really understand what is going on.
DD generally seems to handle tests etc much better than I do, but I think really picks up if I am anxious or stressed by it. She also goes to an early intervention program run by a special ed unit at our local primary school. she gets speechy, ot, physio, and there is a special needs teacher and teacher aide. until she was 3 i went with her, now she goes on her own and LOVES it!
Do you need to get genetic testing done also? eye and hearing tests are a PITA, and we are yet to get a conclusive results cos she is just too hard to assess. in regards to hearing test, too old for the newborn one, and too young (developmentally) for the older child one......HTH
Kane has had a few blood tests, and they put a type of splint thing on... its a solid board with elastic on both ends, they slide it up his arm so he cant bend it.
They have to hold him..... but he cant bend his arm and snap the needle into himself!
I find he copes better than me, but we explain everything thats going to happen so he knows. They should give him toys so his head turns the other way from the neele too....
Good luck sweets, I know its awlful..xoxoxoxo
He might cope better than you think too I had to take DS2 for blood tests when he was just under 2 and I thought it would be awful, but he was so good - he laid there super still and let her take the blood. I just had to hold his arm straight. For the MRI, they will probably sedate him, because even a placid child can move around in them and they are quite noisy too.
I just wanted to say too, that I'll be thinking of you as you go through all this because there will be times when it will be tough and it will suck bigtime, but it will all be worth it in the end when you find out exactly what is wrong so you can help him
My son has Down syndrome and is tested every 6 months to keep an eye on his thyroid and since he was about 9 months they had done it the adult way without any issues. yes he does cry but we just keep him occupied and they normally give him either a lolly or a teddy after (at his age atm 2.5 they give him either a lolly or a sticker) but they are always so great about it because he has such tiny little veins they get the older lady who has been doing it forever to do his good luck with everything. Xo
i know the MRI he'll be put under GA - the pead did tell us this which im fine about.
the blood test was a shocker. DJ *hates* being restrained like that. the poor kid was screaming while we held him down and more so with *both* needles. as the first one he rotated his arm and it came out. but after about 10mins he was ok. poor DH got to hold his legs and was worried about hurting him - i had to tell him three times to "keep his legs bloody still" now we wait for him to pee into a bag. he did kind of in one - but he some how pee'd OUT of the bag. so the second one is on. then we just wait. and hope he hasn't got pees that can escape - again!
i'm trying to get myself ready for the worst. and i some how have to get myself ready to deal with the "we told you so's " from my folks. yes they wanted this done 12 months ago. but they felt they could do it when ti suited them (inc. DJ having chicken pox) thank god we're moving 2hrs away from that side of things...i hate waiting :-/
What a tough time for you guys, hope you get some answers.
'I told you so's ' are just the worst. Moving away from that sounds positive got your family. I can't understand how anyone could add an 'i told you so' to such a personal, emotional and stressful situation. Poor you.
since the last post things went slightly different to how we thought. the first blood test meant that DH, myself plus two nurses had to hold DJ down as we needed alot of blood from him and the best way was via the vain in the arm. then a week later another blood test as two came back a little hinky. then about 48 hours after that DJ had a fit. it lasted half an hour (and thats with the use of drugs to top it) and they had NFI what triggered it. so we got booked in for an MRI and an EEG. (i keep typeing Egg the first time ) the EEG went fine. amazeing how food can distract.
then yesterday they tried to sedate DJ for an MRI. which was a fail. i know he can fight sleep but i thought sedation would knock him out - so we're trying sedation again in a week or two. if that fails we have an MRI booked for June at the RCH melb.
I talked to the pead yesterday about the bloods and the EEG and his words "annoying normal" and has (at this stage) ruled out the fit as epileptic. he said that there was a 'fit' of sorts while they did the EEG but it wasn't picked up on brain waves. he does how ever have alot of Delta brain way activity, but the bloods where all good. so now its a case of seeing if the MRI brings anything to light or not. it could be "just him" so for now we go to the special school (for bubs/toddlers) and treat DJ like a two year old.
Oh how scary, I know a lot of kids with autism have fits as well and often times it isn't until the MRI that they pick up Autism. Its quite scary. When my DD's had their testing for allergies, they had to take 4 vials of blood, around 8mls! I had to lay on top of DD1 and have 3 other people holding her limbs straight as they took the blood.
My DD1 had extremely high levels of mercury (apparently common in Autistic kids), iron defecient and had thyroid issues due to her body not digesting food properly, we also found out she was intolerant to a lot of foods and allergic to milk ... when we took her off all the bad foods she started digesting food and her body got heaps better as well as some of her developmental delays.
The paed said we will probably have to do an MRI at some point, but he is waiting to see if she does anything else to warrant it....
thats interesting christy. i know DJ's bloods where all 'normal' (after the second ones where done) we are only waiting on Vinus gases one to come back (???) but other then that they have nothing else to test him on - other then an MRI. talking to a student nurse on the way out from the hospital he said about a temp. but when i explained what happend he said it could have been the cold DJ came down with that triggered it - but he had no temp (just felt warm but all their temp taking showed a normal temp) the upside is he can now climb onto the coutch or peoples knee's which is something new...now to teach him to climb down in a way that dose not use his face as a brake.
he's been moved to a bigger hospital and is in and out of fits(well he was 2 hours ago) they'll be doing another EEG on him and eather a CT scan or an MRI later today. at least we'll know eather way i guess...
Hunny im so sorry, i dont know the whole story jsut read the last few comments. i am hoping everything is ok and DJ is home with you soon..
my thoughts are with you and little DJ
xx
Dj came home on the 11th - after being put on Keppra to stop any more fits and has been labeled epileptic. back in hospital in the wee hours of the 12th with croup. let me tell you i turned into a banchee at 7am thanks to some stupid doctors.
we went to the pead yesterday for the last lot of blood test results and to also upp the Keppra dosage.
all tests came back clear - bar one. the Genetic one.
It seems Dj is missing a chromosome. chromosome 15 on the cytogent band q11.2-q13.1 no idea what it means. but they also have no idea of its affects. could only 'see' this as of 2.5 years ago so they dont know in the long run how it'll affect DJ. DH and I have to have blood tests done in order to work out where its come from - or if its just a random muation. there are two syndromes that are assosiated with it - but until DH and I have bloods done we wont know which it is. so now we have more of an idea, we can help DJ as best we can. and by the looks of it Vic dosen't suffer from the same thing. but if eather of the boys have kids of their own they'll need to know bout it. (i'm guessing)
I'm sorry you have had such a rough couple of weeks, Dansta. I hope DJ is feeling better and you have the seizures under control.
Has he started at the kinder you spoke of earlier yet? The symptoms of both of the syndromes associated with chromosome 15 are managed with OT, physio and other therapies. I hope you have access to a really good kinder for DJ, there are some great ones around.
DJ sounds like a gorgeous kid and you seem like a beautiful, caring mum. I hope you get answer's soon so that you can all keep moving forward.
global delay but it could be more
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Ive read a few of DJ's posts (esp in regards to your mother) but just hoping for the best for him now. 
.. but he cant bend his arm and snap the needle into himself! 
good luck with everything. Xo
) the EEG went fine. amazeing how food can distract. 
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