Feeling like I'm not being informed

[amyt878]

DD is almost 2.5. She has a Pituitary disorder which means she needs replacement hormones. She has been on that since birth, so that is not so much the problem.
She is only STILL eating puree, chews toast but does not swallow, drinks S26 Toddler, yoghurt, weetbix (watery) and thats IT.
I have a Paediatrition, Dietician, OT and Physio for her.
At the moment she scoots on her bottom, scoots to lounge and stands, says a few words (although not very clearly).
I have not had Speech Path as she is STILL on waitlist. Physio is maybe once a month or three weeks.
I just feel like we are standing still. NO one is helping or giving me a diagnosis.
She is sick often, does weird motions like kind of flips out on the floor (not seizures, more like flippant movements) lays on her back and watches tv with head tilted back and then goes crazy flapping arms and legs.
I am starting to wonder if she has maybe Cerebal Palsy to a degree. When is anyone going to tell us?
It feels like they are just seeing us and then kind of leaving it til next time. There is no plan or anything.
I am feeling very angry about it. SHe is MY daughter, relying on me and I feel like she is not getting all she needs therapy wise.
:mad:

[LivinOnAPrayer]

:hugs: I am going through EXACTLY the same sort of thing with my DD Alex.

It s not fair!!! Your right, were the ones looking after them, so when do we get told, and when do we get help!??? :banghead::hair::mad:

Ive been trying to get Alex seen for 3 MONTHS about her losing weight an even calls to brissy and newspaper story tmorow, STILL WAITING!! GGGGGGGGGRRRRRRRRRR

Mabye we should start a protest!! GRRR lol. im so frustrated.

[amyt878]

It is very frustrating and even though I do like her doctor, I just feel like she pacifies things instead of sort of going, "well, maybe it is this, I don't know for sure, so we will wait and see".
I just want to feel like everything relies on "when she is 5". When will it be too late? Isn't NOW crucial. GRRR

[LivinOnAPrayer]

IKWYM! I feel that the dr's around us are all nodding saying yes i see theres a problem, but not actually acting on it. even brisbane RCH has dissapointed us.

I think now IS crucial! Now is reality and if your not happy then they should have that as enough reason to do something more.

[ReecesMum]

I sort of know what you mean by not being informed.From the day Reece was born we had to look for answers,chasing docotors around to get answers only to get anything but real answers.Although now we know for sure that our DS is legally blind for 20 months we have had hopes of him being able to see but it would be between 2-70% vision.With RIDBC(deaf and blind) place having visits i have always thought it was positive tha he reacted to things but now to be told he has no periphial vision it just makes things worse.It also took docotrs till he was 14 months to tell me he has cerebral palsy due to not being able to use his muscles to do things for example at 22 months he still cannot walk.talk,crawl,sit up etc.Just like your DD he only eats purees/yogurt and only 1 jar a day,if that sometimes and is on Pediasure(High calorie formula) but that is all he has everyday.Do you see an endocrinologist as that should be someone you should be seeing if she has a pituatry disorder.Reece himself may have that too as he does not grow well at 22 months he is 8.5kgs/HC 43cm(36 at birth)/ length is 73cm but endo has suggested we see how the Pediasure goes before we do another growth hormone test.We to are waiting to see speechy well sometime in the next 50 years.LOL!(This year apparently).So we are still looking for answers in regards to these issues.The main answer i am looking for is is this the hospitals fault???As i believe it is.

TC

[kiwibird27]

It's really tough, To a certain degree we were lucky with DD, she was VERY VERY sick from birth and spent 3 1/2 months in hospital so it gave everyone time to figure out what was wrong with her. A diagnosis doesn't usually matter to the doctors cause the treatment is usually the same. You need to start demanding, get a referall to a geneticist

You can get some free speech sessions through your GP, If she is actually choking on food that will put u in the URGENTLY to be seen list too. Do u go to the children's hospital, If u do u van ask your paed to refer you to their speech department. Your dietician if she works at the kids hospital may be able to help with speech too.

Problem is the hospitals and services get filled quickly with kids that are aspirating on their food, not drinking, severe developmental delay category, leaving the kids in the middle on a never ending waitlists. In the fairfield / Liverpool DADHC there is only 1 Physio for the whole area!!!!!

Your PAED is the one u need to get working, if he or she doesn't start helping ask to be refered to some-one that can, would strongly recommend a paed at the childrens hospital, they usually make things happen quicker!!!

[Freya]

My sister (19) has a pituatory tumour I had no idea that babies were born with it too.:(

My heart goes out to you.:hugs:

[Nowhere]

HUGS must behard for you

Can i sugest going to see the parent advocate at the hospital you DD is under and asking to set up a team meeting with ALL her pead specialists so no one can pass the buck, ask all your questions and also while you are there ask for one of the drs generaly the pead will do this to be the team leader this dr is then responisble for your childs medical care and is responsible for kicking all the other drs u the but if they get lazy or dont get back to you when they should, make sure ALL her careis done at the same hospital as it makes things easier with many drs

and like stacey said go and see the genetics team at the hospital some even take self referals so maybe call today and see what your genetics team says if they dont get a referal when you meet with all your drs

[amyt878]

Maddy was in the hospital for 3 months at birth. She does have a diagnosis which is Panhypopituitarism/ Septo Optic Dysplasia, but, that does not account for some other things.
Maddy does see a Geneticist, but, so far nothing has come up. He told me he believes there is something as an overall diagnosis, but finding it/ labelling it- is not always a fast thing and sometimes never gets a "name".
She is 2.5 yrs old, weighs just over 9 kgs, gets sick all the time, misses daycare almost each week and I still pay, she turns off food very easily. She eats like that of a 6-9 month old. Does not stand unattended, but can get around.
I just feel angry sometimes. Especially when I know it is not easy for doctors to just know everything, wish they did :)

[ReecesMum]

Reece has septo optic dysplasia too.He has had periods where he has been sick all the time we went through it for 6 weeks straight it went from colds to slapped cheek to laryngitis to another cold and then to roseola virus.And as per my last post he is basically a big baby as we still have no major progress.Still not eating,growing,developing well.And believe it or not having a diagnosis may not make things better,they actually made things worse.My DP said to me but he hasnt changed its just a classification now.But to me it put even more doubt in my mind if things will get better.I do hope for the better but i also note the worst case scenario and for me it is death as it could happen for me.So to me having the diagnosis of SOD,cerebral palsy,severe brain damage,development delay and in relation to the SOD him being legally blind not to mention his lack of growing doesnt leave much hope for a better life for him.

You have a right to feel angry about it as you want answers and they cannot provide them to you at this time.

TC

[amyt878]

Do you think SOD accounts for Global Delay as a diagnosis and not because of vision impairment?