[wendyh]

in reply to: 3 year old with graves #1177611

Hi Kimberley
there seems to be many mixed reviews in the uk about treating children with graves. As you are aware my daughter relapsed when antithyroid drugs were withdrawn and she is back on block and replace. One doctor said to carry on with meds until she sixteen then surgery or rai.

the other doctor said it not safe for her to stay on meds as it could cause problems with bone marrow which is non curative. Very confused we have now been referred to a surgeon and radiotherapist to see what the pros and cons are. What do you think. There is not one child in wales at this age so it is very difficult. My husband wants her to try herbal therapy but I am sceptical to this approach as understand it can interfere with absorption of anti thyroid meds and this scares me. If I had the money I would consider

taking her to America

[wendyh]

in reply to: 3 year old with graves #1177609

Hi kimberley well it has been just 4 weeks since daughters meds were stopped and already she is relapsing. Doctor told me to restart carbimozale 25mg for two weeks then add levothyroxine at two weeks. I have heard that block and replace is not good for a young child. She is to be retested in 6 weeks then either rai or surgery or stay on meds. They dont seem to know if surgeons or radiotherapist would do anything now or wait til she older. Are the risks of side effects higher second time round. Your opinion would be very much appreciated. Thanks kimberley

[wendyh]

in reply to: 3 year old with graves #1177607

Hi. Havent been in touch for a while. Last week my daughter who is now six has been taken off her block and replace meds as endo feels she has been on it too long (since age 3) and wont do her any good if kept on too long. He said he is highly expecting her to relapse due to the severity of her condition when diagnosed and high volume of antibodies that were present. I have to monitor her for signs of relapse. How long could relapse signs start and will they be severe at first of will it start gradually. She is being retested in 3 weeks and is surgery best over rai at thus age. Any advice would be appreciated.

[wendyh]

in reply to: 3 year old with graves #1177604

Hi all

My daughter just had mri scan for suspected brain tumour thank goodness there was no tumour. However, there was an abnormality showing up on the frontal lobe of her brain which causes speech problems, emotions etc. I was told this could be inflammation or a reaction to something or just a defect that has always been there which I find strange. Do you think this could be caused by graves disease and do you think a brain specialist would ge a good person to see. She is having another scan in three months to see if there are any changes. Any advice would be appreciated.

[wendyh]

in reply to: 3 year old with graves #1177601

Hi it has been a while since I updated you on my daughter who is now 4 years old. She is on block and replace now 30mg carbimozale and 25mcg levothyroxine. Her levels seemed ok 5 weeks ago but lately her appetite has increased again plus she has lost 6lbs in weight. She has become very hyper again and sweaty. She saw a thyroid eye disease specialist who want her to have a mri scan as something wasnt right with her eyes. It may be retina damage or something pressing on the optic nerve. Is it safe for a little one to have general anesthetic with graves disease. The endo said they have to try and get her to 8 or ten yearsold when she will have to have rai or surgery. Is there anyone who can advise me I am concerned of the safety of having general anesthetic with her condition. Many thanks

[wendyh]

in reply to: 3 year old with graves #1177598

Hi kimberley

Just wanted to update you on my daughter. She was put on 30mg cabimozale for three months but this ceased to work. The endocrinologist has gone one step further and wants me to increase the dose to 35mg in divided doses for a month and if still jo joy put it up to 40mg for a month to see if this stabilises her vondition. I am very worried as it is over the maximum dose recommended and what side effects could it cause.

The deadline is december and he said that rai would be next option but we need yo speak to a radiotherapist first. Very worried as she is very uoung to undergo this and noone seems to know what the risks involved are long term. Surgery is also an option if performed by an expert hut still that carries risks also. In such a dilemma as why do some doctors say rai and others say surgery is better taking in to account she only 3 years old.

[wendyh]

in reply to: My 4 year old son just diagnosed with Grave’s Disease #1179991

Hi kimberley

Sorry to hear about your lille boy. My 3 year old daughter has graves disease, rapid and enlarged heart and a goiter. At the moment she is on 30mg of carbimozale and 15mg of propanalol. Her levels havent stabilised as yet. Due to repeat tests next week. She has had this for a year and been on medication for 7 months. There doesnt seem to be a lot of knowledge with graves in a young child. I know what you are going through it terrible watching their mood swings etc… the endo mentioned rai treatment but very afraid of this as there are risks later on in life. Is your little one on meds and how is he doing. I will keep u posted on my daughter and would be great if you keep me updated on jordan. Thinking of you -you are not on your own

[wendyh]

in reply to: Methimazole stopped working #1175308

Hello

I am going through the same thing with my 3 year old daughter. The endo has now put her on 30mg of carbimozale which is a very high dose. She has a goiter which seems to be increasing in size and a rapid heartbeat which should be under control with propanalol but this not working either. They are retesting in 4 weeks so I am hoping we will see a chane because I knoe rai treatment is getting closer which I am very nervous about.

Yes fery hyper behaviour with poor concentration span. It is very hard to watch your little ones go through this . What is the latest with your son and have your endo mentioned rai treatment.

Take care for now and you are certainly not alone.

[wendyh]

in reply to: 3 year old with graves #1177593

Hi kimberley

Thanks for your reply. I saw the endocrinologist and because who levels havent improved to what they would expect he has increased her meds to 25mg for a month. He states that if nothing has changed he recommends rai treatment. I dont know anything about this as it has not been done in the uk before.

I worry as heart rate not decreasing and propanalol is not helping. Can you give me any advice on what to expect should this be the only way forward.

Many thanks

A worried mam

[wendyh]

in reply to: 3 year old with graves #1177591

Hi everyone

My daughters cabimozale has increased to 20mg now. Her last readings are tsh 0.03, t3 34, t4 23.3. Are these results good or bad. Her goiter seems to be a bit bigger and her heart rate has increased. She is seeing an endocrinologist tuesday so I hoping he will do something to help her

[wendyh]

in reply to: 3 year old girl with graves disease #1177083

Hi shirley

I went to the docs today about my daughter dont feel any happier thinking about having a second opinion. She said the dry patches were just down to her even though she has had. no problems with her skin til now. Her increase of food and bowel movements again Over the last week she didnt think it was a problem.

She is having thyroid bloods on thursday do you think it necessary for her to have a full blood count as well. She had one before they increased her medication that is all. Also I was told if her levels were raised they would increase her medication again. I dont know what to think at the moment. Doctor said she seemed bright enough in herself but they dont see what she like on a day to day basis hyper one minute, lethargic the next. She is up and down. Her one eye also seems to be smaller than the other. One eye is open fully and the other closed slightly. I was told her eye movements are fine maybe it just the swelling.

I feel terrible contacting you about everything that going on but I dont know who else I can speak to and who understands what we are experiencing.

Thanks again, shirley

[wendyh]

in reply to: 3 year old girl with graves disease #1177080

Hi shirley

My daughter is seeing a pediatrician unsure what the difference is. Aren’t pediatrics qualified in this field! She goes back tomorrow to see the doctor and have more bloods usually on Thursday. Do you think she should have a full blood count done often as well as thyroid levels. I have a feeling her levels are going back up again as I am getting to know the signs. They detected a heart murmur and may be a slight narrowing in two arteries on left side of heart. I know this is part of the illness but will it rectify it in time. The doctor said there are two antibodies attacking the same gland one to slow it down and the other is fighting to keep it working. They don’t know why this second antibody has flared up

Have you heard of this shirley. It is only the last two days these dry patches have come up on her . Can’t understand why it only now happening. She been on meds since middle of january and worried they may not be working.

[wendyh]

in reply to: 3 year old girl with graves disease #1177078

Thank you for your reply. I live in south wales in united kingdom and have been told it is very rare for a 3 year old to have graves. I dont know of any groups here who are going through the same thing. You feel quite alone sometimes and living
On a day to day basis. The mood swings are awful to watch as she has no control. One minute she be happy and the next things go flying across the room.

Is there a reason why you suggest she should cut down on her medication to twice a day.
I notice of late she is getting a few dry patches on her face could this be related to her medication. Thank you for the support it is nice to know there is someone to talk to.

[wendyh]

in reply to: 3 year old girl with graves disease #1177075

Thanks for your reply. I dont use facebook but do you know of other people with a young child going through the same thing as I understand it is rarefor a child so young to have this condition. I am worried as I know the tell tales sign when the levels are starting to increase again. How much medication will she be on to settle things. She is having another heart scan soon so I am hoping there is no damage done. What about the drooling will this subside in time. Anyones advice would be greatly appreciated.

[Author]

Posts