[Anonymous]

#1076883

Hi Graves Mom,

Take heart! There are definitely other mothers of small children who HAVE posted here — though they may not hang around as often as they did in the beginning. That’s a good sign, because it means that they’ve got some sort of manageable result and no longer come here for constant support.

I can’t say I know how it feels (since I am the patient, not my child), but I’m sure it’s frightening to be facing this with a child so very young. There are a couple of things I can tell you.

About her eyes — the expert we heard from at a conference a few years ago (a pediatric endocrinologist) told us that children RARELY get the worst of the eye disease, and for the most part, any eye changes that happen in children do reverse on their own.

She’s lucky to have you as an advocate. Keep informing yourself, and keep standing up for her health. You’ll get there.

Since she’s so young, you may want to start looking into rules regarding concessions that schools can make for children with difficulties in class. Given the fact that her levels could fluctuate without warning, it’d be helpful to have a safety net for her — permission to take longer on tests, or authorization to get out of her seat for a short period of time if she’s feeling particularly anxious. I know, that seems a long way off, but you’ll be glad to have the information in your back pocket if and when you need it.

NGDF Bulletin #45 addresses Graves’ in children, so you may want to get that. I know we have other mothers checking in to the board occasionally, so expect to hear from one or more of them in the near future. (Check for posts from drakemm, they may go back a ways, but the information is just as good as it was the first day it was posted.)

Also, there is a section on Graves’ and children in the book that Jake & Nancy put together, “Graves’ Disease: In Our Own Words.” The book is a wonderful source of information.

Wishing you and your daughter much luck!

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1076884

Thank you so much for replying. I’m crying now and I feel so silly. It’s just sooo nice to have someone give you encouraging news besides your Endo.! I’m getting the book, I’m going to find post #45 and hopefully find a few other Mommies out there that I can bounce info. of all. You’re so right – knowledge is power. I would do anything to help my daughter (probably even more than I would myself). Thanks for all of your advice about the future too. She just started pre-k this past Monday. We’re in Florida and the kids start school early down here! I feel so fortunate to have found you! Thanks!

[Anonymous]

#1076885

Graves’ Mom.

Hello and welcome. Ski forgot to mention we have a support group leader for kids with Graves’ and their parents. She is listed under the Virginia support groups at http://www.ngdf.org/groups.htm and can be reached by phone. She has a son with Graves’ and can be of help to you.

My wife and I run the local support group here in Melbourne Fl. Are you close? Please feel free to contact me.

We are only a click away.

Jake George
On-line Facilitator
Co-author “Graves’ Disease In Our Own Words”
Author “The Red Man In Me”
Author “Grandfather’s Song”
Author “A New Dawn”

[Anonymous]

#1076886

two days ago my doctor told me that i have an over active thyroid, post partum, otherwise known as graves disease. My symptoms lately have been tiredness, difficulty in breathing, a lump feeling in my throat and anxiety. I didnt think much of it when my doc told me because he didnt seem worried at all, he gave me a script and said i should be fixed in a couple of weeks but may need to take the medicine for 6 months or a year.But now my tongue feels tired and my bottom lip is a bit numb, i dont know much about graves disease and was wondering if this is part of it or not.I am also getting very depressed because i have a 3year old girl and a 3 month old baby boy. I was breast feeding my son but was told to stop because of the meds, so every time i hold him now and he cranks his neck to feed, i just start crying because i feel so bad. We both were not ready for this, it just doesnt seem fare

[Anonymous]

#1076887

Hi. I am so sorry about the breastfeeding thing. I was diagnosed about a month ago. I was also told to stop breastfeeding due to the meds, but luckily my baby was 11 months old. I am so sorry! I will say a prayer for you. I know she didn’t understand why I had to stop, but I told myself that I was trying to get well so I could be a better mom to her and my son (who is 3). Just try to look at it that way. For me, that made things better. I don’t know about the other side effects you are having. Everything is new to me, too. But if you need to “vent” I am here to listen. I know what you are going through! Jeanette

[Anonymous]

#1076888

It is absolutely unfair. I think postpartum is a particularly awful time to develop Graves. You have a new little one so dependent on you and suddenly you are having trouble just taking care of yourself (physically, mentally, and emotionally). I was 8 months postpartum when I was diagnosed. For several months I had chalked up my symptoms as normal postpartum stuff for a new mom who was working full time in a high pressure job and still nursing to boot (fatigue, hair falling out, weight loss, muscle weakness I thought due to lack of exercise, etc.)Finally when I started crying at work one day and just couldn’t stop, I went to see my Dr (a family Dr who also does OB – she is also delivered by baby and is her Dr too) thinking I had Postpartum Depression. Well, we did consider that as a possibility and talked about how we would treat it if it was but she also did a bunch of bloodwork and checked my heartrate (which was tachicardic). The next day, she called me and told my I was hyperthyroid, started my on a betablocker, and sent me to an Endo.

My endo ran a TSI (to see if I had the autoantibodies that would indicate Graves) to determine what was causeing the hyperthyroid. He was considering two possibilities. The first (and most likely) was a condition called Postpartum Thyroiditis. This is a transient condition that happens to up to 10% of women sometime in the year postpartum. For PPT, they just treat the symptoms in the hyperstage (with betablockers) if needed as is only lasts a few weeks. Then the hypothyroid stage hits and they may give replacement thyroid if needed for a few weeks. For most women, then it whole thing is resolved.

I was not so lucky as my bloodwork indicated that it was actually Graves. (The endo did not want to do an uptake scan because that would have interupted the breastfeeding.) He started me on Methimazole and told me to just have the baby’s Dr monitor her thyroid levels. There was some possiblity that it could pass to her in the milk but he felt the benefits outweighed the risks in my case. Of the two drugs (Methimazole & PTU), more Methimazole passes through the breastmilk than PTU. The baby’s doctor checked with the pediatric endos at our local well respected children’s hospital and medical schools to find out how often (4-6 weeks) to check the baby and what to watch for but the feeling was that the risk to her was very minimal. That said, I think their advice about continuing to breastfeed depends somewhat on the baby’s age, weight, general health etc and the dosage of the medication you are on.

I am so sorry that you are going through this right now. The good news is that it will get better. My baby is now 19 months and we are expecting our 2nd in October. I am in remission right now (probably because of the pregnancy) but we don’t expect that to last after delivery again. At least this time my Drs will be watching closely so that I am not allowed to get so sick this time before treatment is restarted.

Just take it one day at a time and lean on this community when you need to. Just being a new mom is stressful enough without coping with Graves.

[Anonymous]

#1020360

Hi. I’ve been reading your posts for months now. What scares me so much is that I see NO OTHER person who has a child with GD. My daughter was actually 3 when she was diag. in Feb. Her thyroid was 8x higher than normal. We started PTU, beta-blocker and were doing great for about 6 months (July) when all of a sudden her blood work showed her liver enzymes increased. So we went off the meds for 7 days (can you believe she went immediately back to 160 heart rate within that time?!), did BW to make sure liver was ok and then started Tapazole. We just finished our 2-week BW check and all levels are normal. So thankful! I have noticed in the past few months (not in the beginning) that my daugther’s eyes are very buggy. I guess I should have seen this before but b/c I see her everyday I guess I didn’t realize it. We went to a funeral last week and people who have not seen her in a while all commented on her “beaufiul, big eyes”. I’m so scared it will continue to get worse. Does it improve on it’s own over time. She’s only 4 – I could never do eye surgery. I’m also praying so hard that the Tapozole will continue to work throughout the remainder of her 1-year treatment and then go into remission. I’ve tried reading so much to educate myself but when it’s your only little girl….I just sit and cry. I am very thankful this is treatable though. There are so many worse things out there she could have!

Also, her HR is still 130 even though her levels are normal. Her Dr. took her off the beta-blocker immediately. I have a call into him to let him know about her HR. Just looking for some support I guess.

Thanks a bunch – you guys are wonderful.

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