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Post by kimnz on Jan 30, 2005 13:26:25 GMT -5
Hi there,
thanks for all your information and also your personal letter Bob. I have sent the lady a letter from the pull through association (Teresa) and am awaiting a reply. I have also looked at the site.
It is so nice having the support of caring people and I thank you for your concern. I'll let you all know when we are going off for our operation.
Kim
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Post by kimnz on Jan 29, 2005 0:10:30 GMT -5
Hi Debbie, thanks for your posting...in New Zealand we have a free public health system (however if you want to get something fast you can do it via medical insurance).
I had been complaining for years about how far inbetween Jordan's bowel movements were, he would store up for up to 12 days and the stool was very smelly, he would then fill nappy after nappy once it had pushed through. I asked a couple of years ago if it could be Hirschsprung's disease and was told no. I happened to see a paediatrician (in the public health system) who was taking the place of our regular paed for a period of time and she asked if I had heard about Hirschsprung's disease...this was when he was 5 years old. At this time I had had Jordan to the accute assessment unit re not being able to have bowel movement and abdominal distension. I was amazed that finally they were going to do some tests after all this time.
We had to take Jordan all the way to Auckland for the test which was a bowel biopsy under GA, it came back postive meaning negative for ganglion (nerve endings) so he then had to go back for further bowel biopsies to see how far up the absence of ganglion went. The surgeon wanted to do surgery on Jordan November 2004 but it took us a whole year to decide if we wanted this for Jordan (remembering we had come 5 years with this condition).
We have come to the point that we feel Jordan needs this operation as he has got to the point of generally not being able to have a bowel movement unless we use potent medication (eg. huge dose of magnesium hydroxide or picoprep). It then means we have to have him off of school while the medication is working, it also means he can't swim. So we have got to the point that we feel for him to have the best lifestyle we need to have the operation.
I am scared in case he comes out with a temporary colostomy and also in case the anaesthetic knocks off brain cells if you know what I mean! We have done much to help our son develop to his fullest potential in an area where many services are limited...not that this is the same for all over New Zealand and I'm not looking forward to him being under anaesthic for hours. Plus we do not know what the outcome will be.
He is such a happy little man and we love him so much, do not know what I would do without my Jordan.
Feel free to ask me any more questions, I am quite open to sharing anything.
Kim
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Post by kimnz on Jan 28, 2005 22:26:23 GMT -5
Hi there,
I am new to this site and would love to hear some of your peronsal information and insight in regards to short segment (the one that about 80% of sufferers get) Hirschsprung's disease.
Our son Jordan who is six years old (and also has ds) has been diagnosed with this, we have had years of constant bowel problems which far exceeded the normal constipation problems that a lot of children with ds have. At the end of February they are going to remove all of his rectum and part of his over stretched sigmoid colon.
Have any of you had a child with this problem and what did they do for your child and also how do you feel the outcome has been? Do you have normal bowel movements now or does the bowel leak? I value your comments. When they did an xray they also found Perthes disease in the left hip, which hasn't had treatment as yet.
Thank you,
Kim
New Zealand
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Post by kimnz on Jan 30, 2005 14:01:37 GMT -5
Hi CC and thanks for your welcome.
I used to be very shy but Jordan has taught me like you to be assertive and stand up for what I believe in or what I may think is right.
I too get sick of Drs and people (yes they are the same!) who put children with ds in a labled box. More than anything I wish for people to see my son for who he is, not a "down syndrome" or a boy with a disability, but "Jordan", a six year boy who just happens to have the ds attatchement.
There is so much problem with "labeling" and I think that is why our children's medical problems don't always get attended to in the way they should. Some of the Drs tend to think that certain problems just come with ds and forget to look for the real problem eg Jordan with his Hirschsprung's disease....all kids with ds have problems with constitpation due to hypotonia therefore is must be that when in fact it wasn't.
I can remember when Jordan now aged 6 was a baby. We knew before he was born that he had ds (about 11 weeks on) and when he was born I could see that there was a problem with his oxygen saturation, I knew also that there was something not right besides the ds they told me that there was something wrong with the machine and that it wasn't that low.
I asked for him to be looked at and they said he was fine. I knew he wasn't and asked for a blood test despite the fact that he was only brand new (about 2 days) in the end they relented and when they got the results they were all concerned. The rushed him into SCBU, under the lights, naso gastric tube in and talked of having to possibly transfuse him due to polycythemia (thick blood). Do you think when the paediatrican came around the next morning they aplogised??....Noton your life. They were about to walk away after checking him on their normal ward round and I said "so there was something wrong with him" they said "yes there was" and walked away.
Anyway the long and the short of it is "mother's know best" and go with your gut feeling. Yeah mothers!!! (and fathers).
Kim nz
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Post by kimnz on Jan 30, 2005 20:15:53 GMT -5
Hi there,
just thought I'd put my 10 cents worth in for what it is worth. My friends 6 month (who also has ds) old baby started doing just what you described with your baby.
Our babies at the time were about the same age. I really thought she was starting to have the beginings of epilepsy with the shaking and shivering...it was quite worrying to look at. However the paediatrician was not worried at all.
She also did it when excited and stimulated. Nothing at all eventuated from it all and she outgrow it about 6 months later.
I imagine that her brain was just getting excited with the stimulation.
Kim
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Post by kimnz on Jan 30, 2005 14:16:44 GMT -5
Hi Bob,
that is one cute little fella!!
I am amazed at the services that you all get (and very HAPPY for you all).... despite having to shake Jordan when he was little and unwell to make sure he was breathing we have never had sleep studies done. We also don't get many of the other services that people in America and Canada get eg OT, PT, VNT etc on a regular basis and this is due to prioritising of services where I live. It is not like this for all of New Zealand of course but we live in the North.
It puts a lot of the pressure back on to parents to help their child develop to their potentail without the full supports that they need. I think this makes for extra stress.
However - we had one wonderful woman come over from the UK who knew all about children with ds and transitioning them to school and since she has been around even though it is in the educational department.....things have moved forward.
Sometimes it seems just having one person with specialist skills makes a huge difference....heres hoping for some more in the health/hospital department!
Kim
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Post by kimnz on Feb 2, 2005 15:35:33 GMT -5
Hi,
it is wonderful to hear such excellent information both from regular Mum's (that's the nz way of spelling Mom) and the regular Mum's who are also professionals.
I am wondering (only WONDERING) if one (only one) of the reasons we may want to try out different therepies is not JUST because we want our children healthy and want to do the best for them but possibly because we are anxious to some extent about the "Down syndrome" componant of our children and want to try to dampen in down. I am not being very articulate I know. I hope I am not being too controversial and I apply the above to myself. Having said that I cherish and love my son the way he so I may sound a bit ironic.
It is not wrong to want to minimise the above but I am guessing that maybe we might do some of these things as our own defence mechanism to protect ourselves.
Having said that.... "yes" ....we have tried the vitamins and are still one them. We do not pay for them a relative does, they are very expensive to ship over to NZ. I have stints of giving them to Jordan and stints of abstinence. He has had them off and on since about 1 year old.
Something I have noticed (well I THINK I have noticed) when taking them:
Jordan appears to have more energy. His congnitive process MAY be a little quicker. When I take him off them initially he APPEARS to be a bit cranky and maybe not quite so much energy. I think I am a little scared having started them to take him off them completely....may be my own defence mechanism again. I like being open and up front, I just don't want to offend anyone.
I have not kept a diary.
I do agree that if you can give a diet high in antioxidents and a very healthy diet that this would be the very best thing. I have found that over here in NZ it is actually very expensive to live healthily (pardon the spelling, I can't find spell check on here).
I have a friend here and her daughter lives VERY healthily and she is almost 6 years old and has had hardly any infections at all....she of course also has Down sydnrome.
Kim nz
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Post by kimnz on Feb 8, 2005 4:45:21 GMT -5
Hi Pauline,
when you talk of venesection is this to lower the viscosity of the blood?
Jordan also had polycythemia at birth and with his approaching bowel surgery I voiced my concern to the surgeon in regards to this. There was talk of Jordan having to have blood taken from him when he was just born because of the polycythemia and mention was made also of the possibility of stroke.
After viewing your letter I will definitely be speaking to them about this before Jordan's operation.
I am sorry to hear of Nicky's health situation. I hope you don't mind me asking, is the pulmonary hypertension reversable especially when you mention chronic lung disease? I was under the impression it was not and if so I imagine that Nicky would probably be on oxygen from time to time.
I have a friend here whose little boy (now 11) was not diagnosed until some damage was done and he is on oxygen when needed.
It must be very tough to sit back with the "wait and see approach" when your son is obviously not a well boy.
If I am getting too personal please feel free to say so.
I am thinking of you.
Kim nz
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talking
Feb 1, 2005 13:08:56 GMT -5
Post by kimnz on Feb 1, 2005 13:08:56 GMT -5
Hi
well obviously this speech thing is really a concern to so many of us...I hadn't yet read your message and by then had already posted my own message asking for speech tips on the general forum.
I too think it is the hardest thing about Down syndrome. Not being able to talk so well or get your messge across is SO frustrating and also brings with it some behaviour problems which people interpret as being "naughty" .....that's the thing that bugs me, when a child acts up because of the frustration and teachers think he is being naughty. That's how they get a label!
Kim nz
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Post by kimnz on Jun 7, 2005 16:35:31 GMT -5
Hi there,
well we have been on a bit of a mission. Our son Jordan (now aged 7 years old) had surgery for Hirschsprungs disease resulting in a colostomy. He just recently had this closed they had to take the rectum and part of the colon as well as prolapsed colon so he now can go to the toilot like other children.
We are schooling him at home at present due to bowel issues but hope that possibly next year we will have him back at school.
The operation was not pleasant as you can imagine and it was really hard watching Jordan go through so much.
I am finding it difficult to find resources for schooling at home that Jordan will concentrate on, he understands alot but when it comes down to trying to get him to do any formal schoolwork, things are a real chore andf battle.
I do not have much support when it comes to formulating a proper curriculum for him and at the moment do not have any special teacher input. The teacher that we have on the correspondence school does not seem to have too much idea on how to teach a child with Down syndrome. I have 3 hours of teacher aide support in the mornings but the teacher aides are relying on me to give them the appropriate work for Jordan. It's tough as he is being uncoperative often when it comes to actual work. He will do the same type of activities if I use the computer, he is very good at this.
It's so frustrating having him refuse to do the work. I know that he obviously doesn't like it but trying to access appropriate schooling materials is quite a chore.
In desparation I phoned a lady in Australia and she thinks that the materials we have been given to use through the education system just aren't meeting his needs.
Any suggestions??
Kimnz
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