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need advise... think im going crazy

(5 Posts)
YoungMummy95 Mon 22-May-17 14:37:54

Im a young mum of 2 and will appoligise before hand this will be long, my first born hasn't had the best start to life when i was 12 weeks pregnant at my scan discovered that my baby's stomach hadn't fully developed and his bowel and intestines where coming out (gastroshisis) and would go for scans every 2-3 weeks to keep an eye on his progress, had rough pregnancy all day sickness, would suddenly black out when I would come back round I would be on the ground covered in sick, my iron levels were extremely low but struggled to get them up, at 35 weeks pregnant my waters ruptured but I thought that I was just dribbling little big few days later was in constant pain and was admitted to hospital then later dishcharge after another two day in pain I went back within 15mins of arriving at triage I was rushed to theater for an emergency cesarean my little boy was born at 4.08 with gastroshisis and was not breathing or able to breath on his own, they rushed him straight to a near by children's hospital when he was ICU hooked up to more machines than I could count, he had his first operation at 2 hours old and had another 3 operations during next tworking weeks, countless cannula's that continued to fail one after another until his tiny veins couldnt take anymore so the shaved his head and tried to fit two cannula's in either side of scull witch instantly didn't work so last option operation to insert a tube inside his jugular and bring it out his chest worked for 2days before it dislodged it's self so they tried a line in his foot which led to him getting blood poisoning his whole body dwelt up like a balloon but no one noticed, he was then diagnosed with acid reflux and a cows milk protein allergy at 3 months old he came home at just over 6 pounds the size of a newborn since then he has never really hit a milestone and always picked up bugs and coughs but had them 10 times worse than most, when he was just over one he had bronchiolitis for over 13 weeks before doctors did something about it since then he has always had a cough.

I will skip forward a bit

9 weels ago my son now over two became very ill just wasn't acting his self after countless doctors appointments and trips to hospital to be told it was viral he woke up one morning and fell straight to the ground and started having a seizure which was complex most last 6mins us all his lasted 19.29 and an ambulance still hadnt arived we couldn't get him to respond he was lifeless we eventually got to the hospital where after tests and xrays they said he had chest infection and fluid in lungs, and his oxygen levels were dangerously low 6 days in hospital it was time to go home, cough continued then few weeks later he would have numerous episode during day and during sleep where he would have like seizure movement's witcheck dc put down to boys being boys, he started getting numerous other symptoms that one after another got pushed aside as a viral, after more than 10 dc appointment and numerous calls to NHS and trips to hospital they started turning it on me asking if I was coping because I developed severe anxiety after his seizure and lost a lot of weight and wasn't sleeping but the just wouldn't listen to me my friends, my family my partner and everyone else made it out like I was loosing my mind until 2 weeks later when he began having some type of anaphylaxis got him to the hospital they thought it could be chronic swelling, still passing off symptoms to the side the gave me anti histomens and sent him home after more hospital visits and dc appointment last week my son stopped breathing and starting having another complex seizure which lasted 9 min's straight after that one had finished he began having another seizure which lasted 14 min's.

My partner made 4 calls to 999 which were all canceled due to my partner shouting due to them refusing to send a ambulance so I had to leave my son to phone for one, few minutes later police came though the door to speak to my partner about his language toward emergency services staff when they saw my little boy lying on the floor grey still have a seizure before the immediately called for abulance then 2 ambulances and one which just signed off rushed to my house and said that he need a mediate medical attention his heart rate was 189 and oxygen levels were very low, when arriving at hospital he was still drowsi and tiered slept through all cannula's and test being done before we got are own room got him settled then left for 30 mind to get him something, on arriving at hospital I received a call saying that he was having another seizure rushed up he seemed better this time little more his self, next morning he was back to being completely himself no symptoms so we're dishcharge on way home is temp was getting high fast so done everything I could to cool him down so phoned hospital and was told test results came back he has influenza and that it will go away on its own no need for any medicines he has been getting calpol and nurrafen every few hours due to high temperature then started getting rash when his body temp dropped to 35.5 so took him to hospital to be told it's just a viral it would get better before it gets worse.

Getting to the point, I know my son I have spent everyday with him and I know there is something just not right it's getting to the point I'm not sleeping, I only leave he house for dc appointment and to go to hospital and feel like I'm going to have panic attack a soon as I leave the house or go in the car, I can't phisically eat I look like skin and bone

I feel like it's going to take something bad to happen to my little boy before they will finally do something about it and actually realise there is something more to it than just influenza, he is 2 1/2 and he has been through more stuff than anyone I know has been through in a life time, he has been referee to be screened fr autism and epilepsy since everything has happened. I just don't kwow what I can do to make people listen without ending up having social work involved:/

Stormtreader Mon 22-May-17 14:41:59

"he has been referee to be screened fr autism and epilepsy since everything has happened."

It sounds like things are happening to try and find out what the issue is.

YoungMummy95 Mon 22-May-17 16:05:10

the autism think was through the first hospital stay with the seizure, he always has a temp and isn't acting himself he's coming out in rashes and loosing weight, they just put it down to the influenza but he has had it for about 6 weeks and hasn't went away but the won't prescribe antiviral medicine for him

Crazylou Tue 23-May-17 22:17:33

Have you asked to be referred to a pediatrician? Am going through similar situation with my DS he's 2 aswell 4 infections at one time every month long list of medical history, recently starting taking seizures one of them was that traumatic it broke me in bits seeing my son getting rushed through to A&E getting his clothes cut off him as he was blue struggling for oxygen thankfully he came round since I have demanded referral to pediatrician as I want a full medical done I totally understand how your feeling

YoungMummy95 Wed 24-May-17 10:18:41

yeah, they have eventually referred me two 3 different pediatritans, and epilepsy specialist, speach therapist and a behavrial theropist, just out of hospital he had 3 very complex seizures so there finally doing something about it now, he has influenza and adenovirus.

To be honest I'm actually think about trying to get him seen privialty and seeing how much it would be for them to screen for everything, he is 2 1/2 nearly and he weighs less than my 14 month old, have been waiting about 8/9 months to here back from the diatritions it's a night mare just one thing after another

All his seizures last about 10 minutes longer than they should but can't get anything for it just to keep taking him on to hospital every time he has one,
19 and a half mins it took for an ambulance to come the other day there he was grey blue lips barley breathing.

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