Apologies for length
Matthew came into the world unknown footling breech. Within a week of birth he lost 12% of weight and had weird twitches. On admittance to hospital at 12 days for faltering growth I mentioned the twitches and consultant confirmed seizures. He had an MRI scan and it showed two bleeds on the brain.
Hes medicated now for seizures and ended up tube fed high cal milk as by 12 weeks he was severely malnourished (don't ask! long time to get someone to listen that he wasn't feeding right).
Im trying to rush through the long winded stuff so going to jump to now..
Hes 6.5 months old. On Thursday we met the neurologist. Who blew us out of the water by saying that even though we have been led to believe the bleed has caused all of the following issues actually he thinks its genetic and we now have to see a geneticist.
Below are Matthews issues
- Seizures (currently medicated so not had for a while)
- severe poor eye sight cant see much or for a long time (awaiting second eye test at 9 months as could not complete recent one as his eyes wander too much)
- poor feeding (he has his ng tube on and off but we still struggle, we have to use one brand of bottle and keep hotting up the milk through the feed or he refuses.
- poor head control. Still cannot lift when on tummy, still wobbles a lot and lurches forward.
- extremely stiff knees - cannot straighten legs fully and knees seem enlarged although consultant claims this only appears enlarged as hes so thin.
- Severe reflux - currently medicated for this.
We knew the above, but whats destroyed us is the neurologist when I asked him for an honest opinion (wanted honesty but it was said so cold)
"Matthew will never be normal or appear normal it will be obvious theres something wrong with him. I would expect him to be the developmental age of 2 by the actual age of 5. He will need long term care and support"
Now what I want to know has anyone remotely been through this and I guess Im wanting to know if the above is the worst case scenario and is there actually any hope left.
Thanks in advance,
Matthew came into the world unknown footling breech. Within a week of birth he lost 12% of weight and had weird twitches. On admittance to hospital at 12 days for faltering growth I mentioned the twitches and consultant confirmed seizures. He had an MRI scan and it showed two bleeds on the brain.
Hes medicated now for seizures and ended up tube fed high cal milk as by 12 weeks he was severely malnourished (don't ask! long time to get someone to listen that he wasn't feeding right).
Im trying to rush through the long winded stuff so going to jump to now..
Hes 6.5 months old. On Thursday we met the neurologist. Who blew us out of the water by saying that even though we have been led to believe the bleed has caused all of the following issues actually he thinks its genetic and we now have to see a geneticist.
Below are Matthews issues
- Seizures (currently medicated so not had for a while)
- severe poor eye sight cant see much or for a long time (awaiting second eye test at 9 months as could not complete recent one as his eyes wander too much)
- poor feeding (he has his ng tube on and off but we still struggle, we have to use one brand of bottle and keep hotting up the milk through the feed or he refuses.
- poor head control. Still cannot lift when on tummy, still wobbles a lot and lurches forward.
- extremely stiff knees - cannot straighten legs fully and knees seem enlarged although consultant claims this only appears enlarged as hes so thin.
- Severe reflux - currently medicated for this.
We knew the above, but whats destroyed us is the neurologist when I asked him for an honest opinion (wanted honesty but it was said so cold)
"Matthew will never be normal or appear normal it will be obvious theres something wrong with him. I would expect him to be the developmental age of 2 by the actual age of 5. He will need long term care and support"
Now what I want to know has anyone remotely been through this and I guess Im wanting to know if the above is the worst case scenario and is there actually any hope left.
Thanks in advance,
