Hi my son has been poorly in one form or another since birth. He has server acid reflux, has had a hypoglycemic attack with a blood sugar level of 2.5, had pneumonia at 6 months which then led to all kinds of viruses. He has an inhaler and is extremely as sensitive to dairy. He hates any kind of sunlight and has days where he is so fatigued he doesn't even wan to get out of his cot! He is very unsteadY on his feet at times and has a thirst like nothibg I've ever seen! He also had the most outrageous mood swings! Once he contracts a virus his body can't seem to fight as well as it should and he is ether extremely poorly or extremely well there's no in between! Anyway after much debate and tests they found he had a random cortisol reading of 181 and he was put under a professor of inherited metabolic diseases who asked for a synathen test to be performed. Unfortunately they were unable to canulate him so we are now waiting for an appointment to try again buy this time sedating him. What they did manage to get was a blood cortisol which showed 211 this was at 8.30am so my question is those two readings, are they low? Does anyone know what it sounds like in say if what's wrong? Had anyone heard of a child so young having these issues before?
Any advice gratefully recieved!
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AmyBlake
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I think your baby has to be under the care of a good paediatrician. If you are in the UK you should ask to be referred to a children's hospital and endocrinologist.
I have given you a couple of links which I hope are helpful. It seems awful that your baby is now 1 1/2 and no-one has yet diagnosed him, yet left the new mother to deal with affects that aren't normal with young children.
Thank you so much for responding. I can't tell you how this has effected our whole family . I have known from day one there is something wrong with him. Bug it was very much a wait and see, will he grow out of it approach. At times I have felt like i have been loosing my mind! The difficulty has been he has had so many illnesses that they have just been dealt with at the time and never got to the root of the issue. When he had a hypoglycemic attack was when everyone took more notice. The professor he is under is from Manchester hospital and an expert in his field and he is under a paediatrician it's just everything takes so long and we arnt developing in terms of diagnosis and treatment. I just wanted some clarification on these readings and are they low, also getting two readings of that number different months but roughly same time does that indicate a problem?
I hope that someone who understands Cortisol levels will respond. You and your family must be out of your minds with worry. Theoretically, it seems that it should be easy to diagnose/treat your baby and whole family are suffering. We are relying on the doctors but sometimes it isn't forthcoming, i.e. the diagnosis and advice and help. I don't know if this link will be helpful:
I don't know how you cope without the help of some knowledgeable person dealing with a sick child. The stress and strain within the family must be horrendous.
It's not been the best of times I've had to fight as I just knew something wasn't right, the feeling was overwhelming! I used to film him screaming blue murder as I couldn't articulate to the doctors just how poorly he was and how much pain he was in. I am now back to work and have had to go part time as Blake can't be in nursery due to his low immune system so financially that's been a struggle and I've a good job that requires my whole attention so I have Blake on my mind and then work and no help from anywhere but I do finally think we are getting somewhere! I just admit though I have researched like an FBI agent and pretty much told then what's wrong but addisons does seem like a viable diagnosis and fits well with his symptoms . I think I just want some clarity and confirmation that they are low .
Thank you for your concern I appreciate u replying
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