my son who is 11 months has just been diagnosed help!

hi my son who is only 11 months old has been diagnosed with a thyroid problem he weighs quite a bit although eats healthly and has constant constipation hes waiting for more tests and referrals but im so anxious about it and dont know where to go for help to understand his condition he is late developing with sitting unaided and he might have a hip problem is this because of the thyroid i have so many questions but trying to find info about this problem in babies seems to be impossible

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  • I'm really sorry to hear about your son and can understand how worried and confused you must be. This is not an easy condition to understand.

    There is another member here who also has a young son with the condition. It might be helpful for you to read her posts.

    Here is a link to her profile where you can see her posts:

    thyroiduk.healthunlocked.co...

  • thankyou for replying i have sent her a meesage hopefully i will be able to understand a bit better x

  • slightlyconfused,

    My heart goes out to you - it must be a really difficult time.

    I know next to nothing about infant hypothyroidism so all I can really do is to try to identify some information 'out there'.

    First the leaflet from Great Ormond Street Hospital about congenital hypothyroidism:

    ich.ucl.ac.uk/gosh_families...

    Second a link to Mary Shomon's page about the same - with several onward links:

    thyroid.about.com/cs/childr...

    Please *** do *** post again with any questions you have. I will try to locate answers. But you really need the very best medical help you can get.

    All the best

    Rod

  • thankyou thay were helpful i will keep in touch x

  • My daughter was born with congenital hypothyroidism and she was very ill at birth with all the typical symptoms, jaundice, constipation she did not pass anything via her bowels until she was 3 days old, not feeding, hypothermia; they used 5 thermometers before they believed the readings! She looked like a little monkey with a mass of black hair & I was shocked at her looks when she was placed in my arms for the first time & I even said to my husband she so ugly; this may sound as if I'm an awful person but both my husband & I are blond & we have 3 other children who in my opinion were beautiful as soon as I saw them. However I still loved her dearly from the moment I saw her it was just a shock seeing her. She had the Guthrie Test (prick in the heel) as normal & this test is for detecting congenital hypothyroidism but they lost the test so she was over 3 months old & almost dead before they picked up on the condition; despite me knowing something was wrong & taking her to the Dr's at least twice a week but being told I was an over anxious Mum (for goodness sake she wasn’t my first child). Within 3 days of starting on the thyroxine she was so alert, looking around, smiling & the jaundice was gone it was amazing; within a couple of weeks the blond hair started to grow in but it looked so odd with the black hair; an old lady stopped me in the street one day when she was in her buggy and asked why I was bleaching the top of my babies hair! We kept trimming the black hair & eventually she became the full blond that she remains to this day. She is now 22.

    The thyroid affects the brain for the first 3 years of life so that is why it is extremely important to start on the thyroxine as soon as possible. Unfortunately it was too late for my daughter due to them losing the test; the brain damage had already been done while they were telling me I was an over anxious Mum!

    What exactly have they told you at the hospital about your son’s condition? I’m asking as I’ve researched this subject for 22 years and so may be able to help answer some of your questions as I know exactly what you are going through & I also know how hard it is getting explanations or an extra 10 minutes of time from the so called medical professionals; I took it upon myself to write to professors all over the world and I always got a reply with detailed explanations & these came in very handy when seeing the paediatrician as they soon realised I was not going to be fobbed off, in fact I think they thought I knew more than them in the end! I even bought a medical book on the thyroid, cost me £110 all those years ago & I used to take this with me to the hospital also; ha the student Drs were always borrowing it off me if they had to revise for exams.

    Let me know what they’ve told you so far and I will do my best to help you as sometimes just having someone to talk to helps.

  • Just wanted to say thanks for posting that very full response. Hope it helps slightlyconfused and her son.

    Rod

  • hi thanxs for replying my son had the guthrie test at nine days old and the result came back negative but 5 months later i knew something was wrong he was constantly screaming he couldnt sleep hardly at all. He is a really happy and content baby in february this year he started suffering from continuous ear infections and diahorrea but it werent like my other child it just didnt seem to go away i saw a dr at my surgery regularly for 4 and a half months constantly asking what was going on as after 2 months of having the diahorrea it switched to constant constipation i was given suppositries diralyte lactolose etc but nothing seemed to mke much difference. my health visitor told me to give him the lactolose every day but after a month i was sick to death of hearing that i was just worrying for nothing and finally got to see my own gp i asked for callum to be referred to a dietician incase he was intolerent to anything he asked me why and i explained what had been happening after looking relatively shocked at the various answers i had been given and the lack of tests he suggested callum have a blood test for thyroid function and if that came back negative callum would be referred to a dietician. The results have come back that theres definetly a problem and he is being given a second blood test to check his think its tsh levels which they expect to say he has an underactive thyroid and then he will be referred to a peadiatrican my health visitor is looking up info for me but as the guthrie test came back negative he aint classed as having congential thyroidism i have asked where to get bigger nappies as callum has already out grown size 6 but im still waiting to hear back callum also does not sit unaided which he is waiting to be referred to a specialist for and for a possible hip problem. im a bit over whelmed at the moment family keep telling me not to worry but htat is easiersaid then done as my ex partners mum has this disease and has a poor quality of life heart breathing depression and the thought of my child having to deal with that justs breaks my heart. my health visitor mentioned something aboyut disability to help with costs etc but didnt seem to optimistic at the prospect of callum being awarded this i want to know my son is going to be ok and whart to expect when hegoes to the peadiatrican i dont want to not understand what they are telling me i dont even understand what the levels are about what is a good level what is bad im sorry if this is such a long list of things to answer but no one seems to understand why im worrying so much louise

  • The first thing you need to do is to get the family to stop telling you not to worry as you ain’t going to stop worrying; you need their support and they need to take his condition seriously as it is going to be hard at first. It is good that he does not have Congenital Hypothyroidism as this means he is extremely unlikely to have serious brain damage, hopefully he may have no brain damage at all but the thyroid has something to do with brain function for the first three years of life so the sooner he is started on the tablets the less chance there is that he will have brain damage.

    Within three days of him stating on the tablets you should have your ‘happy’ son back, it is unbelievable how quickly the medication starts to work. Do not worry about the blood tests and the TSH stuff as it is complicated; you will eventually understand it or bits of it; I still find it difficult to get my head around it after 22 years. Your main concern is your baby’s health and getting him on the tablets. When you get the tablets don’t mess around crushing the tablets just pop them in his mouth just before you give him his bottle, give the tablets first thing in the morning when he is at his most hungry and he will swallow them with no problem when he sucks on the bottle. The tablets do not have a nasty taste so he won’t know they are there on his tongue.

    The tablets will not solve all the problems, my daughter still suffers badly from constipation and when she was a baby she screamed when having a bowel motion so you will likely have to continue with the lactulose. His development problems i.e. not sitting unaided should remedy itself fairly quickly after he starts taking the tablets and his growth should return to normal; obviously his size won’t reduce but he will stop growing faster than he should be growing and eventually he will be the normal size (hope this makes sense) – if he is 6 months old now but his size is that of a 9 month old baby he will likely be the size of a 12 month old baby when he is a 12 month old baby.

    You will be spending lots of time at the hospital as he will need lots of blood tests; as he grows his tablets will have to be adjusted however by the time he is 3 years old you will only have to take him for blood test about 3 times a year, then as he gets older the blood test are every 6 months & when he is an adult the blood tests are usually once a year. However if you notice any of the symptoms returning do not wait for the future appointment just call the hospital and they will arrange a blood test immediately and the results may show his dose needs to be increased.

    All you need to do is go see the paediatrician at the hospital and get the baby started on the tablets and you will notice a difference so quickly. Ask the paediatrician if he thinks there will be any brain damage as he has obviously had the condition for some time; as in all the time you knew something was wrong but the dam professionals thought you were ‘worrying for nothing’. Ask him how his development will be as he still can’t sit unaided, ask if they are going to do a thyroid scan and ask if they are going to x ray his bones, the bone x ray will tell them how far he has fallen behind as a bone is like a tree with rings that tell your age. My daughter’s bone age was always about 14 months behind her true age due to her condition in the womb and the time it took to diagnose her. Your son should only be a couple of months behind at the most, he may not have fallen behind at all if his thyroid is producing some thyroxine.

    I hope this helps a little; please let me know what happens next & you can ask me as many questions as you want and I will help if I can. When are you seeing the paediatrician?

  • Can u please help me . I need information on this as my daughter is being diagonsed with hypothyroidism at 9.month old.

  • Your post is perfectly fine. I am so sorry you need to be here for such a difficult reason.

    I suggest that you write a NEW post. This thread is five years old and your response on it might very well get missed by almost everyone.

    Also, if you are able to add some more information, it will help us to help you.

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