The current situation for me is that dd - 26 months - is having multiple health issues that haven't as yet been diagnosed. We are currently seeing a number of specialists and allied health who are doing lots of investigations and blood tests but we are now just waiting for them to happen or for the results to come back.
Anyone else in a similar situation? It is very stressful and frustrating at times. It would be nice to chat to someone who understands what it is like.
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15-05-2013 08:47 #1
Anyone else waiting on a diagnosis?
15-05-2013 10:12 #2
This may not be what you'd like to hear right now (and might not happen to you!) but my DD is almost 7 and we're still waiting for a diagnosis
She's had heart disease, airways surgeries, gut issues including tube and TPN feeding, malabsorbtion etc, hypotonia, short stature, intellectual imparement, autism, add, odd, ocd, anxiety issues, and has just been diagnosed with Perthes disease as well. Nothing to explain an overall diagnosis though. It really does suck.
May i ask what your DD has had in way of health issues?
15-05-2013 18:23 #3
Hi there - thanks for your reply. Yes I do fear what you say about not actually getting a diagnosis. I have heard that from a couple of other people too. It is frustrating!
As for my dd - she has coeliac disease, swallowing issues, failure to thrive/short stature, speech delay, delayed gross motor, food intolerances. She is a very happy content child generally so from looking at her she seems perfect.
I have recently joined a my time group which has been great. I feel like we don't really fit in anywhere as she is not doing what her little friends are and it can be hard to see sometimes.
I hope you and your little one are managing ok. It is very stressful and tiring parenting a child with additional needs. I personally am so sick of attending medical appointments and I'm sure it's not going to end any time soon...
16-05-2013 09:22 #4
I can completely understand being sick of appointments! We had one yesterday, one today, 1 on the 24th 3hrs away and waiting on a letter for the next appointment (3 hrs away). Thats just what i know of so far, and medically. We also see speech, psych, ot, physio and behaviour specialists. Oh and dietitian early next month. grr
10-10-2013 08:55 #5
Hi I am sorry I know this is a old theard but I was wondering if I could join.
My DD is nearly 14months old & has just been diagnosed with Failure to Thrive & hypotonia. She has to go for a range of blood tests & then maybe a MRI done the track if the paediatrician wants to investigate more. She was born at 37weeks due to IGUR she had stopped growing in my stomach. All of this that is happening with her now could be from that we don't know and maybe will never know.
People just don't understand what it's like to be told all of this about your own child they say don't worry she is fine but they do not live with them for 24/7.
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11-10-2013 20:58 #6
Hi Cool Cookies. I'm sorry this is happening to you too. It was a hard road for us but we now have a diagnosis - in our case it's a rare chromosomal disorder. What I've learnt though is that by having a diagnosis doesn't really change anything. We have been able to access carers allowance and a health care card so financially things are a but easier but as far as management wise, we are still dealing with similar challenges. In our case because of how rare it is, there is no predicted outcome so we are still in the dark about what could happen.
We had several years of searching and completely understand it is very hard. However my advise would be to keep pushing the doctors to try to find out what could be happening. Don't let the doctors decide how much investigation gets done, keep asking and communicating with them. I feel that I have been a big pain sometimes probing, pushing and researching but it turned out to be a good thing. Early diagnosis for us means funding for early intervention earlier than it would have been.
11-10-2013 21:03 #7
Oh and yes I've found that noone really knows what it is like unless they have been in a similar situation. Being a parent of a child with extra needs is not easy but over time I have discovered some positives.
I joined a my time group and have made some great friends that are in a very similar situation to me.
Also I have learnt so much about services available and how to advocate for my daughter. I am a stronger person because of this.
I also feel very bonded with her - like as a family we are in this together.
All this has taken time though. Honestly it has been a very stressful time - I hope you are managing ok.
Feel free to chat here or pm me if you want to talk
11-10-2013 21:30 #8
I just wanted to pop in and say I'm here with you guys too. Although I've never waited months for a diagnosis. My dd is 10 months and she's has a rare genetic condition plus a complex heart defect. We've had surgeries. . hospital stays... OT PT and ST for feeding. ..dieticians...GI doc . metabolic doc cardiologist. .paeds...etc etc.
No one knows the stress of all this unless you've walked it yourself. It's a tough journey but so worth it with my daughter.
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11-10-2013 22:21 #9
My DD will be seeing a Physio, speech, dietician & Occupational T & developemental peadiatrican aswell as a normal peadiatrican.
Has anyone used a councillor for themselves to help them talk and cope a bit more?
I have got a feeling that when we went for a scan about 35 weeks the scan tech said that DD stomach was small but not small enough to worry about it & now I am starting to wonder if thats her problem. Even after heaps of meals thru out the day it's always skinny & doesn't look she has eaten at all. I am hoping to get her results from her ultrasound from the OB, but I am worried being 15/16 months ago or longer that I was pregnant with her I will have trouble getting the results.
When I was pregnant with her she was under the 3rd percentile & now @ 14 months old I think she is under 5th percentile for her age
11-10-2013 22:27 #10
Cool cookies. .. What is her diagnosis? Have you got any info on why??
She's about 14 months??? Have they got any suspicions as to what is going on?? How are you coping?
My dd has feeding/growth issues. She's never been in more than 3rd percentile. But she's put on weight recently so that's helped.
She's 10 months. .. we've been getting physio speech OT since 3 months. I've been lucky in that way.
I haven't really gone to a counselor. .. we had a social worker who helped us through her heart surgeries. I also have a social worker assigned to us through disabilities qld.. but I haven't really talked to anyone. I have found I haven't really needed it yet. Life has been so busy and v hectic with her!!
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