8 year old child mri & ultra sound results

[tantanl]

Hi can any1 help me(plz bear in mind he has been experiencing his difficulties b4 diagnosis of ONH),my 8 year old son has optic nerve hypoplasia(undeveloped nerve frm brain 2 eye) ONH can come with loads of other associated conditions,we are not sure at the moment if any of his difficulties are due to ONH, he is blind in 1 eye,he has severe allergies(antihistamines are not effective) he has loads of nose bleeds day & nite(no cause found),headaches,body cramps,stomach pains,stiffness causing him pain & discomfort any time of day especially on left side of body & his neck,fatigue,lethargy,unable to sit upright un assisted (theory they say its coz of the way his bones have grown without any test ??),plus toiletting problems day & night,he has great social difficulty,he gets so stressed till his nose pours with blood and he sweats till his clothes are soaked then he sometimes cannot remember anything or how he got into that state,he has sensory processing difficulties,he is on waiting list for full ASD assessment, So an mri of brain was done and ultra sound of bladder & kidneys,we haven't yet received the written report of US but radiologist said his BLADDER was THICKENED which shows he can only hold 5 table spoons of fluid but should be able to hold 25-30 tbl spoons before feeling the urge @ his age,& even after he goes toilet several times his bladder still does not empty (WHAT DOES THIS MEAN ?)... Now the MRI results of brain & orbits:- under developed optic nerve & high signal in T2. Elsewhere there are bilateral high signal small scattered foci in both hemispheres in periventricular regions which are non specific and of uncertain significance to patients age.(WHAT DOES THIS MEAN  CAN SOME ONE PLEASE HELP ME UNDERSTAND) we haven't had the greatest help from medical profs,my son has had difficulties since birth and seem to be worsening as he's getting older but the profs cannot seem to point us in the right direction PLEASE HELP ME

[tantanl]

And the saline drops is something that has never been mentioned so will defo ask the doc about that aswell,thanks

[tantanl]

Hi thanks for that info about a PCA,I have no idea what that is but any help is needed and much appreciated right now,so thanks I will definetly look into that :-)

[teddybears4ever2]

You know I have heard that you can apply saline to his nose daily to help with the nose bleeds.  Many times doctors will even give you it.  It sounds like you are overworked do you have a PCA.  If you don't know a PCA is a helper that is paid by the insurance company.  Look into this as they can be very helpful.

[tantanl]

Hiya,thanks 4 response,we have recently started OT so hopefully something will suffice from there, and we have been receiving therapy from CAMHS for 2 yrs now. Yes he enjoys swimming but unfortunetly we cannot go everyday but do try take him at least once a week,he loves playing his keyboard he taught himself and has recently started classes as I saw a natural talent and it keeps him so calm & happy. He also enjoys science stuff,experiments,and all that type of stuff so I do try take him to a museum or exhibition of some sort once a month. There is so many things he enjoys,it is quite difficult sometimes especially as I have an older daughter,and I am still learning myself about autism & optic nerve hypoplasia. So yes I think your right about writing everything down as it is really hard to remember everything when we go to his appointments,as far as medication goes that is something I would consider only after all avenues have been explored therapy wise. :-)

[skepticalpeach]

Sounds like you have a lot on your hands! Is he receiving any sort of therapy? Especially Occupational therapy for the sensory issues. This may help with the stress. What does he enjoy doing? Does he love to swim, play with play dough, sit in the tub, paint, etc? I would structure his day around these de-stressers. If that still doesn't work (I don't normally say this) but you may want to put him on some anti-anxiety medication. That would be something to discuss with your doctor.

In regards to your questions I would suggest writing them down, like you did here, and take them with you to his appointments. My daughter has autism and it is much easier to remember what I need to ask her therapists if I write it down and/or go over them with someone else before the appointment. It's about your child so you have the right to understand what is going on.