Does anyone ever feel that the drs are just not doing enough.......

[ticklebug74]

Where do I start...... a brief history of DS2 (now 22 months) who was born Feb09 with congenital pnuemonia and spent 7 days in hospital. Sent home and told he is perfectly normal and healthy and will have no ill effects. From the age of about 7 months he has been constantly ill. 3 confirmed cases of pneumonia (with x-rays) several more chest infections, ear infections and tonsilitis...... He has had antibiotics 10 times in the last year!!! He has also been constipated from birth (even when breastfed)and has only now been confirmed milk and egg allergy (although mild).

We are only now just under the care of a pedeatrician (for the chest and infection issues) and a dietician (for the constipation & food allergies) but only after I kept pestering the gp for a referal. But I just don't feel that anyone is really taking us seriously or investigating DS further.

Do you ever get the feeling the Dr's can't/ won't do enough for you on the NHS and go for more of the 'lets suck it and see approach'?

My poor DS has spent at least half of his 22 months so far being sick and it is pretty miserable. And my gut instinct is telling me there is something wrong that they are not finding.

So to sum up:-

1. constant chest &/or other infections
2. constipation since birth
3. Excessive drool 12 bibs a day, 3-5 tops a day - every day - not teething)
4. 10 doses of antibiotics.

It does not sound normal to me.

Sorry to rant, and am not looking for answers or anything but I just know that other mums will understand my frustration.

Yes, we were pretty much in a similar situation and after four months on the NHS since dd's birth have gone private. It was actually through our GP we found an excellent private paediatrician (friend of the GP ...). We now do virtually everything through the paediatrician even things like vaccinations, we feel more confident in him, he always does a thorough check up and makes sure she is fully up to date with everything, keeps good records, etc. But he does cost an arm and a leg and it is not covered by insurance. We found NHS services for young children totally inadequate, nothing good to say about it I am afraid.

Have they tested for the cystic fibrosis gene? Its just a thought, something you could bring up. It is possible the early lung infection to have caused some minor damage to the smaller airways, making him more prone to infections I think its worth getting a bit stroppy and asking some searching questions.

has he got bronchiolitis. i would kick up a fuss.

ticklebug sorry you and your family are going through this,its not fun when your child is constantly sick,i am not in the UK but i can understand a little bit when you say doctors do not do enough,,

mine is nothing compared to yours but recently i took DD to the doc with an ear infection,the doc told me that only one ear was infected so she would not recommend anything,dd was screaming her head off,we were told to wait it out,a few days later i went back coz she was not faring well,the doc told me that,that ear was worse and that the second one was infected too,said she would not recommend anything,but it was still ok to give the baby something,we didn't understand,she didn't want to give me a straight answer,and i felt the same way you feel right now,,please do your job and tell me what i need to do

I could have written your post, aside from the constipation by ds (1 tomorrow) is admitted almost every 2 weeks, usually with bronchiolitis but with a couple of pneumonias and utis thrown in.
I am sick of people asking 'so have they found out what's wrong with him yet?' We have had a sweat test at my insistence but the general attitude is that it's just bad luck. I have lost the will to live, have no answers but wanted to let you know I am in the same boat.
Must run as heading for another admission as we speak.....

I know what you mean. My ds2 has not had the chest problems, but has milk allergy (severe) and has been constantly vomiting on a daily basis since he was 6 months old. At some points he has been sick 5-6 times per day every day for weeks on end. He hates eating (probably because he associates it with constant vomiting) and at 2.7 years still only weighs 23 or 24 lbs (clothed). The doctors have been very reluctant to help and have simply taken the approach of "lets just wait and see."

It has been incredibly frustrating.

Hi Ticklebug, sorry you are going through so much. Your poor DS.

I would also say ask for a test for cystic fibrosis if it hasn't been done already. Apart from the drooling, it sounds very familiar to me as DD3 has CF and can be very ill with chest infections. She can swing between constipation and constant poohing too.

Trust your instincts definately, you know your son best. We knew something was up with DD3, she just wasn't thriving. Her eventual diagnosis was heartbreaking, and thankfully picked up very early but when you know what you are dealing with it's easier to cope I think.

I am the wimpiest person going, but when it comes to me DD's I will fight.

Keep going and I hope you get some answers soon for you poor DS. And for you too!

Sorry your going through this, poor you and poor ds :(

It does sound like CF but this is screened for as part of the heel prick test. If he had CF you would have been informed when he was only weeks old.

Just to see it from another point of view, dd2 was born with congenital abnormalities and required surgery on day 3. I knew on day 1 something was wrong but the dr's like to wait it out to minimise the amount of invasive investigative procedures the child will require. Also, on the three occasions I've needed them and fast I couldn't fault one member of the NHS.

Good luck getting to the bottom of this OP.

Thanks everyone, have not been on for a while as since I posted he has had yet another infection and more antibiotics and my poor DD is ill also. Someone pass me the wine!!!

Thanks for all the comments/advice and to know I am not alone. He has been tested for CF which was negative.

I am just so frustrated and whilst I hope to God nothing is wrong with him and he will grow out of at this magic age of 2 they keep referring to, in the meantime I will just continue to pull out my hair and cuddle by little boy.

I fear it is going to be a long long winter and I may investigate the private peds option.

Does anyone know a good private peds in London?

I feel so lucky to have such good peads services locally.

I have had some questionable experiences with GPs, but I think some of them just don't understand babies! Just 3 weeks ago I was told DS had a clear chest and just tonsilitis - 2 days later he was on oxygen!

We have a dedicated Peads A and E locally who can't do enough for you when you go in. The first time I took DS he was 8 weeks old within 5 mins of arriving he was on oxgyen and having blood gases done - in an hour we were settled into our room on kids ward. They also have a HDU which came in vital.

All our outpatient care has been top notch aswell, always willing to listen to me rather than guessing and ignoring me.