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Just got back from great ormond street with ds

10 replies

brandy7 · 12/07/2007 22:54

well i was in there from monday till tonight. ds 2.9 was put through 3 dehydration tests to try and confirm the diabetes insipidus (hormone problem), it was pretty horrific, he dehydrated so badly that he had to be put on an emergency drip but because the results were inconclusive he had to be dehydrated twice more. he definitely cannot concentrate his urine and they are flummoxed as to why. they have told me it is definitely not a habit of water drinking which is fantastic to hear. we didnt sleep from tuesday morning till when i go to bed tonight as he wanted water, the nurses were fantastic. ive never met such caring, attentive nurses in my life. we were all so upset hearing ds say "mummy, water, water, please,please,please" and we had to say no.
they made me cups of tea all night long, wonderful wonderful nurses.

the mri scan, which the local hospital said was normal, was redone and read by the top man in the UK and ds has an undeveloped front part of the pituarity and the back part of it is mostly missing. that explains why he has the hormone problems with retaining water and the undescended testicles, and his slow growth. it is so good to be finally believed after being treated as a neurotic mother by the local hospital, my docs etc etc.

ds is now back on the injections ive been giving him for a year to help him retain fluid, hes on male hormone treatment muscular injections for the next 2 weeks to see if his testicles come down, if they dont they will operate to try and find them. more tests will follow to do with his pituarity gland and i await the results of some of the tests they did.

i really wish id gone to this fantastic hospital when ds was 3months old and his problems started. i just cannot big it up enough for the consultants and nurses for their persistance and kindness in getting my ds diagnosed.

OP posts:
CristinaTheAstonishing · 12/07/2007 22:57

It sounds like a long road to get to a diagnosis. Good to read of your positive experience of the hospital, though. So touching about your DS asking for water. I hope the treatment helps him. Well done for keeping going and asking for referrals and investigations, it must be exhausting.

berolina · 12/07/2007 23:00

Well done to ds (your poor brave little boy, the dehydration must have been horrible ) and well done you for getting through it.

brandy7 · 12/07/2007 23:04

thankyou its sooooo good to be home, even my teenager missed me,lol

little one asleep now, bruised thighs and hands from all the needles but will be a happy boy when he wakes up to get well pressies

OP posts:
eatyergreens · 12/07/2007 23:10

Hospital can be the hardest place to be with your little ones, and it can be the hardest thing to stay strong when they need what you cannot give. You have had a long road to diagnosis, but it sounds like the hardest work has been done.
Your DS has been a trouper and he has had you by his side, go give your boy a sleepy kiss and get some rest.
Well done to you all for getting through it.

Blu · 12/07/2007 23:10

Oh, how horrible the dehydration sounds, you poor things. (him and you). So pleased that it is over, and that you have conclusive results. I hope the new treatment works.

So....were you able to have a shower?

brandy7 · 12/07/2007 23:21

blu,lol

when i turned up they showed me to our "room", it was like an ensuite hotel room. new part of the hospital..... bed, sofa, funky electric reclining chair (which i slept in inbetween rocking the pushchair), bathroom with toilet,shower/bath.

mum came up tuesday and i had a shower and washed my hair......lovely.i gave ds a lovely shower/hair wash before we came home tonight as well.

i think it was because we were in all week we got one of the rooms, but it definitely made the stay easier as it was private,and comfortable, even with the lovely nurses coming in hourly for bloods/urine etc

im just sooooooo relieved that at last i am getting somewhere. im going to send flowers tomorow to all the nurses as it was a "nurse led" ward for investigations and basically the docs only appeared for the results, it was all down to these nurses and they were so young..unless its cause im getting old,lol

OP posts:
Blu · 12/07/2007 23:58

It does sound a brilliant hospital- we have only been for outpatient consultations, but I was impressed then.

DS has to have big surgery next year - his consultant works in collaboratiopn with GOSH - I am wondering whether she could actually do the surgery there. I would much prefer it as children's hospitals have a much lower rate of MRSA. Hmmm.

Anyway - you must be knackered - go to bed!

wrinklytum · 13/07/2007 00:02

Love to your ds xx

naswm · 13/07/2007 00:18

so sorry to hear aotu your ds brandy. But I will second the staff at GOSH. DS2 spent 2006 in and out ahving oops and plastic srugery. Lolvely place.

Really please you are home and DS is in his own bed tonght

{{{{{{}}}}}

CalifrauniusFudge · 13/07/2007 01:51

This reply has been deleted

Message withdrawn at poster's request.

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