Hi everyone. Just to update you on what happened today.
I took my baby son James to hospital to have a blood test to check his T4 and T3 levels. I have to say that it was the worst experience yet unfortunately. The nurses struggled to get a vein, they tried his hands and feet but could not manage to get enough blood to test. In the end james was so distressed that they had to stop. I was crying and felt so awful that I had to make him go through that. I would really like to hear from anyone who has experienced anything like this with a child as I find it so heartbreaking and I will have to take James for blood tests for ever and it gets worse each time. Could really do with some support.
We have to again next Monday now to try again.
On a plus side the Consultant said that he is developing normally and his brain is developing fine (with James' condition if he does not take levothyroxine his brain will not develop) They told me that eventually he will be on 150mcgm of levothyroxine. Does anyone know if you can get bigger tablets than just 25mcgm as I am imagining him having to take 6 tablets. Hope I have done my maths right!!!
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Rachel
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Rachel, I really do feel for you and James. I really hope that there is someone that has been through this that can give you some advice.
I don't understand how they can know how much levothyroxine James will be taking as everyone is different. Levothyroxine comes in 25, 50 and 100mcg sizes. There is also liquid levothyroxine.
I hope that you can get some further advice and that they can find a better way of drawing James's blood. Take care, Sue x
Thanks so much for your very supportive response. It really is much appreciated. Yesterday was so awful and I am dreading Monday when they try again.
Thanks for the information about the size of levothyroxine tablets. I am pleased that we won't have to give him loads of individual tablets. I have to crush them up at the moment into tiny pieces and give it to James on a spoon. It gets messy! Our Consultant told us about the liquid but advised against it as there is a sediment that can settle at the bottom so it has to be carefully shaken. In her experience she advised us to have tablets which was a nightmare giving them to a 12 day old baby! Take care. XX
Rachel so sorry about the trauma you have at the moment. Seeing your beautiful baby cry must be awful I can rememeber the Guthrie tests when my sons were born and so I know what a mothers instinct is like when baby is crying. Keep strong for James and maybe the tests will get easier for you both. Good Luck and keep us posted. PS Have you got someone taking care of you as a new Mum?
Hi Rachel, I have been reading about your experience with your son and just wanted to tell you that last week at a party I met a lady who had a 12 year old daughter who was born without a thyroid gland. I was very suprised as I had never heard of this before. She has been medicated since birth and is a perfectly normal, happy, healthy girl. I just hoped it may reassure you to hear this. I do hope that James is OK - have you considered giving him either homeopathic or Bach flower remedies to calm him before the blood tests? Not sure if he is old enough yet but it might be worth investigating.
Hi Rachel: My daughter was born 22 years ago with congenital hypothyroidism; she had a scan at about 18 months old and she has no thyroid gland at all. I know exactly what you are going through with the blood tests; it breaks your heart. On one occasion the Dr hit an arterial vein (I think this is the correct terminology) and the blood started spurting out and actually hit the wall on the opposite side of the room; it was soon stopped by pressure but it was very scary for me.
You will find you are always at the hospital as the doses need adjusting as the baby grows; I felt as if I lived at the dam hospital. If you need any help please just ask and if I know the answer I will certainly help.
You should be able to get different strength tablets; they are all small so I used to pop them into my daughters mouth whole just before popping the bottle in and she never ever noticed; Try it and if James is OK this is good as it will save the mess if he doesn’t like it go back to crushing them.
Rachel how old is your son and was he diagnosed with the Guthrie test?
Rachel just read the rest of your posts so now know he was diagnosed from the Guthrie test.
How does the consultant know his brain is developing OK? Surely this depends on the length of time the baby had the condition in the womb or if the problem started after he was born. I've already posted about my daughter today on somebody else's post; my daughter was born with severe congenital hypothyroidism, they did the Guthrie test then they lost it and she was 3 months old before it was picked up but the brain damage was done by then.
I don’t want to scare you as the consultant may well be correct but until he develops normally I don’t know how the consultant would know. Was he poorly when he was born? Was he jaundiced, sleeping all the time, cold, not emptying his bowels or was he OK at birth with no visible signs? If he had no symptoms at birth he should be OK as this may imply the problem started after he was born so it would be unlikely that there would be brain damage but lots of symptoms at birth imply damage has occurred whilst in the womb. The thyroid only affects the brain for the first 3 years of life; after that it plays no part in brain development. Before this condition was called congenital hypothyroidism it was called cretinism; the definition of cretinism in the dictionary is ‘mentally retarded dwarf’ thankfully all children are screened and started on medication before any major damage occurs unless you have our luck and they lose the test!
The scan should reveal further information; if he does not have a thyroid gland then some brain damage will have occurred when he was in the womb; however the damage depends on how much thyroxine he was getting from you and obviously the more he got from you the better; in my case my daughter did not get very much from me when she was in the womb and so she had all the visible signs of congenital hypothyroidism when she was born yet they never picked up on it and relied solely on the test; there was no backup system in place to check for babies that are missed; backups are in place now thanks to my daughters lost test but we are left with a child who will never work or lead a normal life thanks to their incompetence.
I am so glad that you have sent me that message. Thank you so much for sharing your experiences with me and also I have seen you have passed my detail onto someone else on here who has an 11 mth old. I'm really grateful. I really wanted to use this site to find people who have similar experiences with their children and so I am over the moon now!
I need to re read what you have put to take it all in but just thanks a lot for now.
Sorry I haven't been on here for a while so only just seen your message. Thanks so much for taking the time to tell me about the lady you met and her daughter.
Good tip about the homeopathic remedies. I will consider anything! I will post a new blog on here soon...
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