community peads, help pls

[lucymum2four]

Ok dd 17 month was seen today, booked in for Eeg. and ultrasound for hips and spine..had bloods taken, for salts,ect.

dr thinking she has epilepsy so having the eeg.
also they are looking todo a mri. at later date?.

she is being referred to community peads after our results appointment,

as usual mind went blank so didnt ask what is the difference between pead we saw today and the community pead.

be gratefull if anyone could give me some more advice. thanks

From my experience the only ifference is that community paeds have clinics outside of the hospital, ours is in a local health centre. They are in places like childrens centres and local clinics, it just makes it easier to see the patients, also if the hospital covers more that 1 local authority it makes it easier as different ones have different rules.

For us it works this way:

dd has rare mitochondrial condition, the specialist paeds she sees every 6 mnths or so, who look at specifically her underlying condition, treatment, etc. They happen to be in GOSH.

Community Paed sees her every 6 mnths or so but organises local services and symptom management: eg physio, salt, bowel and sleep problems, wheelchair referrals, access into local services for CT scans, sleep studies, bloods, etc. Community Paed is also invaluable in pressurising social services for respite!!

does that make sense?

Yes tht makes sense. thanks. orignally i took her to dr as i was worried about her late to reach milestones and i accept yes that she is reaching them eventually..
but her feet/hands turn in. pead said she had noticed that herself. but said not much they could do at this point and community peads will be the ones to make desicions on how best to approach this..Just felt like i did,nt get many answers as to why and what is causing this?? but real quick to get the EEG for dd.within next two weeks.which i am pleased she will be seen so quickly Is it that they are just more concernd with getting epilepsy sorted for now? said she didnt want to start dd on meds, till sure what sort she will need. am i wrong for wanting all the answers now. also has clicky left hip and double squints.

The community paed can be your open door to lots of local health options you might not otherwise be aware of, and help you get services quicker than a gp?

I understand your frustrations with lack of answers, but the causes may not even be known to the specialists! We found that it was a case of treating symptoms, and by a barrage of tests, eliminating possible syndromes that the doctors know of, then narrowing it down to possible causes. That took years.

Remember that in spite of it all she's still your lovely daughter! Good luck with EEG and MRI.

HI Lucy

Our community paed is fantastic!!
DS2 has hospital paed to look after all medical needs but his overall care is the responsibility of the community paed.
She does any referals for investigations, therapy etc kicks arse chases when people liek salt, physio etc are dragging their heels.
Fantastically helpful with dla forms, helped get the correct people on board to get dx, co-ordinates his care.
She knows ds2 well now & is very informal, happy for us to phone if we have questions etc & she will phone us if she needs any info.
Now we ahve dx & support/therapy in place she sees him every 4 months just to keep an eye on things.

Good luck with the tests, I hope you get some answers

Thanks guys..sounds like it would be alot of help.

Pead rang this evening and said they have booked dd for the MRI on 25th aug at great ormand street
after disscussing her they feel it's needed sooner.

said they are having to go through possibiltys of all nuero disorders/conditions

so hopefully will get some answers then...
and possibly a diagnosis..

Be aware that an mri may not give the doctors clear answers - it is a picture, but not always one that they are able to interprete clearly. Thats what happened in our case, anyhow.

Thanks meltedmarsbars.(i have name changed)Hadnt even thought that we may not get the answers...It is so harding knowing somethings not right but not knowing what to put it down too..

I will deffinatly bear that in mind,would they still get a ruff idea as to whats wrong??