It doesn't get any better
I wonder when things will ever improve. Had to take Ben to hospital last night. He had been in such awful pain, after 3 and a half years I think I know my son so we went to the emergency gp who happens to be one of my best friends. She was fab and openly admits I know a lot more about his condition that her. She was really worried as he was so distended, in a lot of pain and minimal bowel sounds.
So off we trot to the paed unit about 45 minutes away. What a twat of a registrar. The sho was lovely but not impressed no obs or bloods done. All I wanted was an xray to check for obstruction and his tube position and it was ok. They found his bowel quite loaded and blamed that plus an infection in his stoma that has probably gone into his stomach for the excessive pain. 3 hours later with a load of antibiotics we were home.
Then we got a letter from the LEA saying Ben would be assessed in a few weeks by the specialist teacher. No mention of funding which made me think we'd been turned down. Several phone calls later I was told another letter was coming out saying we'd been allocated 1.5 hours per session of 1 to 1 help. The session is 2.5 hours. OUr nursery will appeal but in the interim we will hopefully pay for the extra hour.
I am so fed up of everything being a constant fight. We know it will be to get the help at school.
Our dietician is ringing tomorrow to make our next plan and we see the physio tuesday.
The steroids seem to be helping Iz will just have to see what the next plan is with her.
Ben not going to nursery tomorrow. Between his infection and a tummy bug going round there it isn't worth the risk.
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oh Helen you poor things. what a mare! so sorry you had to take him to hospital. i hope the antibiotics are kicking in now? how frightening for you and him.
i am so cross about the funding. how can they expect him to only have help for half the session?! good luck with the appeal.
you shouldnt have to fight this hard just to get help and support for your son. the thing about EGID that makes me so cross is that everything seems to be a fight - most of us fought for years just to get a diagnosis. why is it like this? I know you have to chase medical professionals all the time and it's wrong.
i am thinking of you today. you are doing such a fab job - you really are. i hope today is a better day.
Love,
Kx
I was interested to read that you think you know your son and that your gp friend openly admits that you know a lot more about your son's condition than her.
A while back we were out walking on Boxing Day with our two children aged 8 months and 2 years 8 months. The older child took a running jump at the pram and managed to pull it over on top of himself, falling awkwardly. Thankfully I was holding the baby at the time! There was a scream of pain and then a lot of crying, and he couldn't stand up or walk. I told my husband we needed to go to casualty because he had broken his leg. We put him into the pram and walked home. My husband was not convinced about needing to visit the hospital, but the child still couldn't stand on his leg and I remained convinced that it was broken. We waited for ages in casualty and eventually saw a doctor. He told me he thought it was his hip that was hurting and that he didn't want to x-ray as it wasn't safe in such a young child. He sent us home. That night I decided to call the emergency doctor and tell him that I wasn't happy with what had happened at the hospital. He said to go straight back to casualty. We waited again, and once again were told it was his hip. I said I was certain that it was his leg, but they disagreed and decided to x-ray the hip instead (despite it not being safe?). It showed nothing so we were sent home again. The next morning he still couldn't stand on his leg and was screaming with pain. In desperation my husband took him to see a physio he knows, and she advised us to take him to the GP. I called the GP for an appointment and was told they were fully booked and couldn't see us unless it was a real emergency like a broken leg or something! I said it was a broken leg and so they said to come immediately! The GP took a look at it and asked if we could pay to see a consultant privately. We said yes and so he booked us an appointment at the hospital immediately. The consultant took an x-ray (2nd one!) of his leg and said it was a spiral fracture! He was set in plaster for 6 weeks. Don't ask me how I knew that he had broken his leg, I just did! It is called women's intuition or a strong maternal instinct. It taught me a very valuable lesson - that I know best and that doctors should listen to me! Some time later my Chiropractor told me that when he was doing his medical training his professor told him that when confronted with sick children he should always ask the mother for a diagnosis. He says he always does this and the mother is always right!
So to all you mums out there - trust your instincts and don't let anyone fob you off, no matter how qualified they are - you know best!
Hi.. I'm sorry to hear you have had such a hard time. I just wanted to reiterate that we do know best. I've been off the forum for a while as my little Ethan has been poorly. On top of his EGID last week Saturday before last, he developed a sore toe (big toe) and a fever and was very out of sorts. On Monday I took him to the GP who prescribed ABIO's, 2 days later the blisters and sores on his tow were spreading rapidly and becoming angry. I took him back, more ABIO's. SO on Thursday I took him to A&E and he was admitted to hosp and put on an IV of ABIO's. The tow was not getting any better and I was shouting lots for someone to do more ( i was worried he was going to lose his toe, it was that bad). Finally on Sat evening a senior Paed looked at him and tried to get him moved to GOSH but couldn't he said the toe was in danger of becoming gangrene. We eventually moved to a specialist plastic surgery hospital on Sunday at 8am - he was operated on at 12 noon as he was now in danger of losing his toe. THe surgeon told us that lost of his tissue had died and was removed. I'm so glad I shouted lots.
We still don't havbe answers as to what this was or what caused it , despite biopsies being done. - questions are being asked as to whether it's related to his EGID or steroid use.
Does anyone have a similar experience of infected digits that get out of hand and don't respond to treatment?
With love and hugs to all mums out there trying to get their little ones through this.
Donna x