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need direction to where i can get proper help

Hi for pass 3years my son has many health issues even before he was born I was told he had enlarge heart. He was born at 32 weeks was in special baby unit (nicu) for 3weeks. I was living in american and came back home to be with family when he was 3months between his health and his sister I need (MY MOMMYandpport) :) well Here things we been going though for few years
He forgot how to feed weeks after birth
Diagnosed with sickle cell trait
Reflux
Protein allergy's
Blank epioside ( doc say it resolve but no diagnosis and still has them and witness by health worker) had a eeg done it was neg. But I was told they only help if the having a fit as they testing) so that was no help
Slow digestion. He had a test done forgot name of test) shows his stomach takes longer time.
Constipation
Excessive sweating when sleeping
Twitshing/jerking (worst when sleeping everynight)
Can't settle in sleep always moving
Pain like screams ( can last for hours can't settle him got wait it out)
Falls ,stumbles
Tell me his legs hurts
After walking about 10mins he is hurting and wants picked up
Tip toe when walking (after walking or running a bit)
Drags left leg with left foot turn in and bend at knee. (When being active for short period of time)
*Told by physo that he both feet are flat foot , left leg shorter then right and possible left hip dislocation waiting for xray appt)
Prefer soft food *that when he eats chewy or meats food he won't do tried every trick
Speech delay (waiting for speech therapy appt)
Drools really bad
Low vitamin d and calcium
Anemia
Does a weird thing with his tounge ( in between his top and bottom teeth)
Can't hear certain pitch (told by the audiologist) he goes for a 3rd test in 3months. also licks on metal
Was fully potty trained 6mths plus night and day and now back in dipers
Was walking up and down stairs now crawls or bumbs down refuse walking down on his own
Involving movement
Can any one relate to our situation or point me in the right direction as his doc has a habit of resolving things with out treating, diagnosis or explaining and how when he still doing then same stuff. Only reason I got hearing and other test done is because I near had a nervous break down the her office.

Replies

  • RockyRocky Member Posts: 76 Listener
    Hi Tiffany, sounds like you are having a really difficult time getting the support and services your child needs. From what you have said about your son's symptoms, I would guess he has experienced some sort of neurological damage. You mention a Physiotherapist but are you also in touch with any other professionals such as Speech Therapist to help with drooling, feeding and speech? Is your son being seen by a Hospital Consultant or does he attend a Child Development Centre? Sorry, but your message generates lots of questions.
    You could give Scope or Contact a Family a ring, they may be able to give you more advice or put you in touch with local parent support schemes. There is lots of help around, it is just a case of finding it and finding the people that can give you information about local and national services and entitlements.
  • tiffany2014tiffany2014 Member Posts: 3
    Thank you rocky for responding. He is under a pediarician she is the one saying everything is resolved with out treatment or a diagnosis. But my son still has blank episodes and it getting worst lately. And everything listed above. Another exmaple of why i question his pedi doc. Something simple as a test for vitiamin deficiencys. I been asking for since he off this special milk cause I know he has protein allagry he may be lacking in vitamins just got that done last month After the test i got a letter saying he was low on vitamin d but didnt need no treatment But then get a call from gp a week later That pedi doc request him to have vitamin d . So i was confused. This not first time she went back on something she said and when i question her she make me feel like i have no right questioning her judgement .any referral i got from his pedi doc i request and broke out crying i been to his gp he wont even touch my son he just tells me go to pedi doc. He was referred to speech by his HV they seen him once and said his speech was OK when I told the HV she referring him back once again and said he need to be seen. So we are waiting for a appt again. His HV is amazing with us I guess cause she around him longer then 5min and see more also I understand she can only do so much. I am looking for support and guidence to the right ppl for straight answers cause his pedi not helpful. I apologies to my neighbour all the time for the screaming when he is in pain. I been luck to have understanding neighbour but it not far on them either. Its very stressful see him and also the affect it all having on my family and ppl around us. I just want some help for my son. But thank you I will give the scope a call
  • RockyRocky Member Posts: 76 Listener
    Thanks Tiffany, sorry to hear you are having such a difficult time. Don't forget that you know your child better than anyone so try not to become too discouraged. Try and hold your ground and keep explaining how your son is affected. It may be worth asking to be referred for a second opinion but I appreciate that can be difficult. Your Health Visitor sounds good. It may be helpful to keep a diary around how your son feels, how long he screams for, things he finds difficult etc., maybe even take some videos of him. This may help the Health Professionals see the bigger picture.
  • tiffany2014tiffany2014 Member Posts: 3
    Thank you again rocky. I do keep as much records as I can. sometimes it hard catching it on video I do my best to try get as much as I can. I haven't had time to call scope but I have list of call to do on Monday. Thank u again for ur advice
  • ReachingOutReachingOut Member Posts: 3
    Please also feel free to call The Newlife Foundation for Disabled Children. They provide trained professionals who can offer guidance, support and information on how you can get help for your child. Call free on 0800 902 0095 or newlifecharity.co.uk x
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