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Children's health

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Original poster

feel like im going crazy after paed diagnoses of my 5 month old - please advise or reassure me??

70 replies

mad4myboys · 19/04/2009 08:54

ds2 is 5 momths old and i knew something was wrong with him very early on. I knew he had reflux (ds1 had it aswell) but took a while to get diagnosed etc. anyway after given meds etc i kept telling the docs something else was wrong. Paed finally agreed and almost 3 weeks ago he was in hosp having cameras put up and down him. camera down throat just confirmed damage to osophagus from reflux but when they tried to look into the bowel it was full of green sticky poo and paed said she couldnt see because of it and she couldnt take the biopsy she wanted to. anyway was given strong laxatives and told come back in 4 weeks for review. he was no different and so gp tried diff laxative which didnt work and then this week hosp over phone gave another which put him in agony. have just had another night sleeping on sofa with him in agony and writhing around. have rung on call registra who said i probably need to call back tomorrow but will try to get someone from surgical team to call today.

sorry that is long winded, trying type quick. WWUD?? On paper he isnt ill, weight ok, not dehydrated, tummy feels fine therfore they arent taking it seriously. Im at my wits end and cant cope another week like this. Im worried this could damage him if keeps getting left?? Any experience or idea what/why he has these probs?

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Original poster

mad4myboys · 20/04/2009 10:49

hes srinking water fine and he isnt dehydrated. Ive just tried giving him very watery milk but wont take it.

OP posts:

Rosa · 20/04/2009 10:50

I have no practical advice expect at my baby clinic a Hv said - the best doctor is a mum - they know when something isn't right and they sometimes just need help from the qualified ones to get it sorted...
Unless your Gp knows your case inside out - I know they read notes on computer but suggest you make a note of all dates / meds - advice you were given ( at hosp apts etc) and reactions or none after each one so you can try to paint a complete pic to the GP -
Good Luck and keep insisting !

Original poster

mad4myboys · 20/04/2009 13:15

gp has put him back on docusate and thats about it.......

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Elibean · 20/04/2009 13:47

mad4 I'm so sorry to see ds, and you, are still going through the mill....what a nightmare.

Wish I had something contstructive to offer, but I can't add to the wealth of experience already on this thread. Just wanted to add my thoughts and a big fat hug, and hope some relief happens soon, of some sort!

smurfette15 · 20/04/2009 14:01

Was it just a telephone appt with the GP?

I hate those so much and really think they should be banned for children under a certain age. A baby cannot describe what they are feeling and there is a lot to be said for actually looking at a poorly child.

Personally, I think I would demand that DS is seen if he doesn't improve.

Original poster

mad4myboys · 20/04/2009 14:58

yes over phone. he doesnt look any diff to fri when i saw him so i didnt want drag both ds up there anyway.he just said it'l take a few days to work. thats it. no one left to help me.

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pinkcorsage · 20/04/2009 15:17

Aw I really feel for you mad4, there is nothing worse than when you know your child just isn't right and no-one can see it because they don't spend every day with them like you do.
My only advice is that if he gets worse and you are really worried, take him to a&e, as a friend of mine who works there says that if they are under 12 months they need to be seen by a paed before they can go home.
I was fobbed off by the GPs about something, then ended up calling an ambulance and ds was admitted to hosp for 2 days - that's the only way I ended up with the paed clinic appointment!!
GPs didn't want to know.....

smurfette15 · 20/04/2009 15:27

I agree with pinkcorsage. If he gets any worse, go to casualty. I worked there too and it is correct that babies have to see a paed.

I really hope that things improve soon

Original poster

mad4myboys · 20/04/2009 15:39

we've only ever been seen by registra paed, is this the same?

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Original poster

mad4myboys · 20/04/2009 15:40

in a&e and assesment unit i mean

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pinkcorsage · 20/04/2009 15:42

Not sure personally, but smurfette might know? In any case, it might be better to have the chance of being seen by a different paed, as a second opinion?

smurfette15 · 20/04/2009 17:36

Yes it will probably be a registrar but it may be a different one.

How is he doing now?

ilovemydogandMrObama · 20/04/2009 17:45

DS had a CF test a few weeks ago. The pin prick at birth screens something like 95%. It's a sweat test which is not distressing. They put a chemical on the arm to stimulate sweating and then wait for about 30 minutes. The results time wise depend on how many other children are waiting as they do the tests in batches. Our results took 4 days?

Ask to see consultant. Discuss your concerns. I've never had trouble with consultants.

Original poster

mad4myboys · 20/04/2009 18:50

im pretty sure our paed is? Shes a paediatric gasterenterologist (sp!) surgeon.

He is currently asleep as is wiped out from lack of sleep. Wouldnt take any milk, just 1oz of water. Have been in to resettle as his belly is gurgling and popping very loudly

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HaventSleptForAYear · 20/04/2009 18:56

It all sounds really worrying for you.

I know you are used to reflux but DS2 had it badly and was permenantly choking and bunged up.

He had a permanent cough from damage to his oesaphagus.

It does take the oméprazole a while to start working.

What postition is he sleeping in?

At this age we had to strap DS2 in a baby carrier at 30 degrees (almost upright) to "sleep" at night.

Original poster

mad4myboys · 20/04/2009 19:07

yes the bariumm showed it was severe reflux. Was on omeperazole few months back but didnt help so was taken off it. They put him back on it 3 weeks ago after showing the damage from the reflux. How did he sleep in a baby carrier?? Wasnt that uncomfy?

He sleeps on matress with a wedge pillow underneath it. Tried amby bed but because of his breathing issues the hunched type positioning made it worse although was invaluable for ds1!!

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HaventSleptForAYear · 20/04/2009 20:47

I have a soft mei tei carrier, I used it to make a kind of harnass like this - several examples on that page.

TBH he wasn't sleeping much anyway, I had to carry him round upright for about an hour and a half after a feed (again the mei tei was good for this) until he fell asleep upright on my shoulder (pressing into his lower back all the time to get the wind out).

I don't think a wedge pillow is enough when they are really bad.

Are you "allowed" to start some solids yet?

We had some improvement after solids but you may not if there are allergy issues.

I was bf so possibly the solider stuff stayed down better than breastmilk.

Original poster

mad4myboys · 21/04/2009 06:26

i have started to wean as the weightof it keeps the sick down a bit better.
something else i have noticed is that he is choking alot. when he is drinking he has few mouthfuls and will choke, abit like a newborn with too fast teat. Never used to do it. He also crys when he passes wind

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youhadmeathello · 21/04/2009 09:07

The poor thing...he is obviously in quite a lot of discomfort. I know some doctors hate this, but have you tried writing down a list of all the things that are wrong and the time frames, and handing it to the doctor.
I did this once for something for myself and the doctor said that when he is presented with a long list like that, they feel that is the time to carry out extensive testing. Luckily for me it turned out to apparently be IBS, but they tested kidney and liver function, thyroid, total blood count, blood pressure, antibodies etc.
Probably wouldn't do those sort of tests for a baby but you might get some more tests done.
I definitely think you should ask for a second opinion. Be persistent, I had to ask about five times for someone to see my son, and in the end I think they got fed up with me asking and gave in !
Also, and this might sound patronising, but is soooo not meant to, try to stay firm and focused. When I had my IBS problem and was worrying about it, I used to end up in tears every time I saw the doctor and I think they kept saying that I was suffering depression - I probably was, but only through worry! One day, I decided to slap the make up on, dress well, and walk in there with total confidence and you know what, they completely changed their stance and that is when they started to do more tests. I know that is wrong, and very sad, but even in this day and age people are judged.

Original poster

mad4myboys · 21/04/2009 09:55

i have actually started a diary today. He is ok at mo, drinking prune juice but constant writhing and wriggling. i dont understand why he is worse at night. maybe because he is laying down?

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Original poster

mad4myboys · 21/04/2009 11:32

any idea why he'l drink water but not milk? as its neocate it is watery. am trying to give very watery mi;k

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Original poster

mad4myboys · 21/04/2009 11:46

probably nothing but yesterday and today he has had cold hands and feet but body warm..could that mean anything?

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mistlethrush · 21/04/2009 11:47

Ds suffered from really bad colic. I know that this is completely different from reflux etc. HOwever, he has also (more recently) suffered from bad congestion. We went for both to a cranial osteopath and this really helped ds - it sorted out the colic (it was like flicking an off-switch after the 3rd treatment, and it wasn't age - based on 'normal' age things he should have continued to have it for some time) and it also helped with the congestion.

The only reason why I am suggesting that you might want to consider it is that they might be able to help with some of the problems - and if they can't, I'm sure that they will tell you and you won't have done any harm anyway. We got our first consultation free.

I hope things improve - but you definitely shouldn't stand getting palmed off like this.

Original poster

mad4myboys · 21/04/2009 11:52

thanks yes he has been seeing a cranial osteo, he has never been any diff sadly. any ideas on cold hands/feet?

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youhadmeathello · 21/04/2009 12:06

Hi there - with the cold hands and feet- you prob know this but it can be a first sign of meningitis if he also has a temp? Have you taken his temp? If he has one pls take him to a and e to be on safe side. I read on here about a lady who had meningitis and that was her only symptom.
However, the cold hans and feet can also be because the body is diverting blood to the tummy to digest the food. Keep an eye on it - really feel for you.
Have you got a partner or friends that you can spend any time with? Things always seem bit better if you are with others.

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