[wendyh]

#1059726

Hi my 3 year old daughter has been diagnosed with gra es disease and a large swelling on neck. She dribbles most of the time when speaking a lot and on the go. She is on propanalol three times a day and carbimozale 5mg three times a day. Is there anyone else who has a child of same age with graves and is medication successful. Thanks a very worried mam

[Kimberly]

#1177073

Hello and welcome – I’m sorry to hear about your daughter, but I’m glad that you found us. It *is* possible for children to go into remission from Graves’ disease. And your daughter should see some relief from the goiter (swelling) as her levels stabilize.

Most of our posters here are Graves’ patients themselves, but there is a group over on Facebook for parents of Graves’ patients that you might be interested in:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.facebook.com/groups/265484340175004/ [facebook.com]

It not an official page of the GDATF, but was started by a couple of our members for parents to exchange information and give support. It’s a closed group, but if you ask to join and explain your situation, the moderators will get you approved.

If you are interested in learning more about Graves’, we have three presentations on children and Graves’ on our YouTube site:

http://www.youtube.com/user/gravesandthyroid [youtube.com]

Wishing you and your daughter all the best!

[wendyh]

#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.

[Kimberly]

#1177076

Hello – I’m actually not familiar with the drooling issue…I would suggest checking with your daughter’s doc to see if he/she can provide additional insight.

That Facebook site is the best way to connect directly with other parents, but if you can e-mail the GDATF at info@gdatf.org, we will see if we can put you in e-mail contact with one of the organizers. (I’m guessing you are overseas, since you mentioned carbimazole — a similar drug called methimazole is used in the U.S.. So phone contact would likely be a challenge with the time difference and the expense!)

Take care!

[snelsen]

#1177074

Hi Wendy, I am so sorry you and your three year old have to deal with all of this. It may be necessary at this time, but I encourage you to tell the doc that you would like to get rid of the three times a day medication schedule as soon as possible. That pill in the middle of the day is tough to do.

I assume you are not in the U.S, also. Connecting with other parents is a wonderful and reassuring thing to do.

I know you said that you do not use Facebook. But I encourage you to sign up.
Then you can use the site that Kimberly referenced. I think it would really be helpful. Also, if we knew which country you are in, perhaps you or we can connect you with parents in your country.

Is your daughter seeing a pediatric endocrinologist? Do you feel you understand a bit about the path of treatment? If she is taking the anti thyroid drug carbimozole, I would expect that they will be doing labs, for that, plus her symptoms, is how they determine the dose of the drug.

I wish you the best, and of course, it is just not fair for children (and you) to have to experience this. But she will get better, and will learn how to live with Graves’, and have a happy life.
Shirley

[AzGravesGuy]

#1177077

Hi Wendy,

Your daughter’s story breaks my heart. No child deserves to struggle with GD and I hope she responds to treatment sooner than later.

Does the goiter cause her any problems swallowing? This could explain the drooling. Also carbimazole can change the way things taste and cause stomach discomfort. When my stomach is upset or I am nauseous I produce a lot more saliva, so this could be something to consider.

You are both in my thoughts and I wish her a fast and full remission.

[wendyh]

#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.

[snelsen]

#1177079

Hello Wendy,
I want to clarify to you my comment, which was to encourage you to ask the doctor if it would be equally helpful if the medication carbimolzole could be given twice a day. I said that ONLY because it is very difficult to give that middle of the day dose. Much easier for you and your daughter to take a pill in the morning and in the evening. This does not mean giving fewer milligrams.

This is what I wrote in my last post to you, and thought I’d repeat it again:

“Is your daughter seeing a pediatric endocrinologist? Do you feel you understand a bit about the path of treatment? If she is taking the anti thyroid drug carbimozole, I would expect that they will be doing labs, for that, plus her symptoms, is how they determine the dose of the drug.”

Wendy, you are at the beginning of a very complicated medical situation for your daughter. YOu must be the one to work very hard to find the right doctor for her. So, it would be helpful for you to answer the questions I wrote above, and then try to find the right doctors. She will definitely need to have lab work done again (as mentioned above,)

Do read and watch the references Kimberly gave you.

Regarding the dry patches, yes, that is probably associated with Grave’s disease. It is on the list of one of the symptoms.
**It is important for you to realize that it is critical for your daughter’s health and future for you to have good medical care for her, preferably a pediatric endocrinologist who is very familiar with Childhood Graves’. Also, it will take a while, but it is equally critical for you to begin to understand Graves’, the tests, and all that will be involved in helping your sweet little girl move toward being healthy again.

This is not something that she will get “over,” nor will she get better without medical help and your help. I hope you can take some of the questions that you are asking here, to the right doctor. It might be helpful for you to take a friend with you to take notes, and have your list of questions before you go.
*****Ask the doctors and medical community where you live, for permission from other parents of kids with Graves’. This is what you want. You are not going to know this unless you ask.

I wish you the best, sure am sorry that you and she are dealing with this disease.
Shirley

[wendyh]

#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.

[snelsen]

#1177081

Hi Wendy, you area doing a good job advocating for your daughter. Be sure to put all the questions you have written in this forum in a list so you can ask the doctor, the pediatrician. Yes it is very good that a pediatrician is her doctor, and I am sure he is very well informed on Graves’ in children. Sounds like it.
Glad she goes back tomorrow.
Here are some questions for you to ask, write down the answers. I suggest, too that you get copies of the lab results for your file at home. You may not understand all of now, but you will with time.
1. What are you testing with the labs?
2. Are there any symptoms I should watch for because of the medication (ATD or anti thyroid drug) she is taking?
3. Is it important to take the drug three times a day/ If so, that is fine, but would it work for two times a day?
4. Look at the dry patches. Can you explain this? How can I treat them? Is it part of Graves? Will they go away later?
5. What signs should I call you about, (and not wait for the next appointment.)
6. Do I have to worry about the slight heart murmur? Is it related to Graves’?
(WEndy, many people have a heart murmur that means nothing, so as about this for information and reassurance.)
7. Ask about the narrowing of the arteries in her heart. ( I suspect this is not related to Graves’ at all.” Ask if he is concerned about this at this time,and do ask if it is related to Graves’.
8. Ask the doc if you can talk with other parents of kids with Graves (he may say he needs to contact them first for their permission before he provides their names, which makes perfect sense and is the right thing to do.)
9. and if he has none in his practice, ask him to check with colleagues to see if they do.
10. Also do ask directly if he is aware of any support groups for parents. He may not know, and there may not be any, but worth asking.
11. Ask if you can get the blood work done ahead of the appointment, so there is something to discuss at the appointment, rather than waiting for the results after the appointment.
12. Say that you would like to have copies of the labs and the visits, for it is hard to remember all this information.
Hope this helps.
**Have your daughter drink water or any fluid before she has her labs. It is easier to locate the veins (I have drawn a lOT of labs on kids.)
Shirley

[Kimberly]

#1177082

wendyh wrote:

She been on meds since middle of january and worried they may not be working.

Hello – Shirley has compiled a great list of questions for you to ask your daughter’s doctor. Just a quick note that dosing with anti-thyroid drugs like carbimazole can take some tweaking — it’s not “one size fits all”. So it might take a couple of adjustments to get your daughter’s levels to where they are normal and stable.

I would definitely have a doc take a look at the dry patches to get an expert opinion.

Take care!

[wendyh]

#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

[Kimberly]

#1177084

Hello – I’m sure Shirley will chime in here as well. There is some controversy over testing White Blood Cell Count on a routine basis. The latest U.S.-based guidance says that you only need to test when starting anti-thyroid drugs and any time the patient is starting to experience a sore throat with fever. However, many docs (including my own) do this testing at every visit. It’s not that expensive, and can be done at the same time as the thyroid labs.

If you feel that your daughter’s doctor isn’t taking your concerns seriously — or answering all your questions — it’s definitely worth seeking a second opinion. For those of us with Graves’, our relationship with our doctor is a long-term one, so it’s important to find someone you are comfortable with! I’m not clear if this doctor is a pediatric endocrinologist, but if not, that might be a good avenue to try.

Take care!

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