[bradybunch6x1]

in reply to: New on here, parent of child with gd #1064248

Hi,
I am going to try this again…for some reason it wouldn’t post. My name is Valarie, and I have a set of twins who are two that are not identical, but none the less still hard to manage. Our twins were born with Neonatal Graves, this is not the same things as what your daughter has, as it is a passing thing. We also have a 12 year old son that has Graves, as well as myself.
I would like to say that sometimes just letting others have there own thoughts about your children is easier than getting upset over it. It is hard for people to say things about what we know to be true. I have had people tell me they think our twins are identical, and that is so obviously not so. They have different color eyes, and are built differently. They do have the same hair color, but that is about it. I just let it go.
Do people always ask you "Are they twins?" They do us all the time. Once a lady did that as we were walking out for Walmart and I replied"No, they just had babies on sale."
As for the growth difference in your daughters, that might very well change on its own. Many children with Graves grow alot faster than others there age, but eventually they stop the growth, and the other catch up. You daughters will probably be about the same hight when they get to maturity, just maybe not threw childhood.
I can for sure understand the clinging part. We have one this way as well. I so know the feeling your having about hoping to not make the other angry because mommy is holding her more. We have actually bought a chair I can sit in with the both of them, so that we can fix the problem. I won’t hold one if they both want it, unless I can sit. I hope, and I am sure you do too, that they out grow this whole thing.
If you just need to talk or want to vent or anything let me know,
Valarie

[bradybunch6x1]

in reply to: Husband died of Graves #1066349

Hello Aimee,
I’m so sorry to hear about your husband. I can not actually say much of any that these people have not already said, but I do have one to mention that will help you in the future. I see that you had stated that you had a child. Please allow your childs doctor to know that there father passed from this disease, so that they can monitor the child.
Graves disease in a parent puts our little ones at risk for developing it. There percentange is 20% higher than the child that doesn’t have a parent that has it. So it is best to allow your childs doctor the information about there father. Just my passing thoughts on it all.
God Bless you, and your child.
Valarie

[bradybunch6x1]

in reply to: TSH levels always *out* #1066086

Hi,
I have beenhypo more than I would like to share, and let me say that it is just as bad as the hyper part of all of this. There are many different types of thyroid replacement on the market, and each one of them can and often do make you feel a bit different. The one thing that I learned along time ago is that if your use to the generics of these drugs it often is different brands that can be filled in the place of what we were taking just the month before. This sometimes can cause the yoyo effect. If your taking generics make sure they are the same brand each time. These drugs all have different levels of other products in them besided T4. Now as for the adding T3, this is often hard to have a doctor do, and it has become even harder since the current market for the pig thyroid they use has had issues being on the market. There are pharmacies out there that do compound the meds to give the compination of T3 and T4 together, but unless you have a doctor willing to write the prescription then that isn’t going to happen.
Also as far as the sleep goes I often was the same as you, but am so totally the oppisite now. That was when my thyroid levels were way out there before that the sleep was hard sleep, or none at all. As for children, that is concerning to any mother, and there are drugs out there that are made for sleeping issues, but I wouldn’t recommend any of them be taken until your thyroid is back in check. You will find that it will be easier to sleep, and easier to wake once these things are all back in place.
I also like to say that being honest with any doctor even if you think you will hurt there feelings is best. They need to know that you feel mismanaged, and they need to understand why. I have found many times that helps them help you. Also something I learned along time ago is that if I was going to take the time to find out about my health, I was going to take the time to write out the questions I had and take them in to them. It helps them understand, and you don’t forget. Also if they don’t have the answer for it right then they may want to make a copy, so they can get the answers.

Anyway good luck, and Congrats on the baby,
Valarie

[bradybunch6x1]

in reply to: Graves disease in the funnies #1066133

I think that the reason my children support me is because it has actually become an everyday part of life for us, since our oldest was dignoised with Graves two years ago, and the three youngest were born with Neonatal Graves. So we live it everyday. It is possiable that one day it will affect the other children so they all need to know about it, and they all need to be aware of the things that all of the people with this disease struggle with so they too can be prepared. I don’t want my children to be blind sided by this disease like I was.
I myself also think that education about this disease is important as well. I have learned that with my children I just need to keep it simple, so I try really hard to make it understandable. The phrase Keep it Simple Stupid for some reason comes to mind, when dealing with the children. They get some of it, and in the future they will understand the rest, if need be. I have a grown relative that is not as aware of this disease as are my children, and he has Graves. He developed it when he was about 12. He now believe he doesn’t have Graves, that he is cured. He suffered from TED at the same time. He had his thyroid ablated, and still doesn’t even know what that means. Now that he is grown it is hard to explain the whole thing to him since he has gone so many years with these things being told to him. I don’t want this to be the problem for my children.
Anyway. Thanks for the praise! Ya’ll are nice.

Oh and I wanted to say this, have you ever thought to yourself the eye disease is a curse because your eyes look so big? Our 4 year old that was born with Neonatal Graves had the bug eyed appearance, and the one thing everyone commented on was"My what big eyes she has". It often brings to mind the story of Red Riding Hood.LOL she could of been the big bad wolf. That was the biggest thing on her! It also reminds me of the funny little cards you can buy with the animal faces on them and there eyes are so big! For that now it does make me giggle. They must find me strange when I laugh at there comments like that. I don’t usually explain it to them, because then they might be put into a strange situation. They don’t realize that our daughter looks that way because of a disease.
Valarie

[bradybunch6x1]

in reply to: Neonatal Graves Disease #1071113

I know what you mean as Ava is the same about the small percentages. Although most of the time she tends to show us what a fighter she is when it comes to that as well. Ava and Ella both also suffered from reflux, and were on meds, they soon out grew it. Ella’s was alot worse than Ava’s though, she appeared to be a fountain after eating, it was awefull. After about 4 months it was better.
The twins also because they were born premature would forget to breath when they were eating, it was scary, and we had to stop feeding them to let them breath and start back up. It was not something I want to relive again. The feeling that your baby has stopped breathing makes your heart race everytime.
Your Opth, should be able to answer some question concerning Kenleighs eyes, as that is how we started for Faith. Then for the twins we found a great doctor that was able to see both girls. He was awesome. He did refer us to a specialist that had seen children with these issues, but only for Ava, since her eyes were not tracking.
That is also something that ALL three girls seem to have a very small problem with. Faith failed that part of her eye screening to get into Preschool. So now we are going to have to take her and Ava into the Peds Opth here.
We just moved here a year ago from Idaho, so finding doctors isn’t very easy, as the largest hospital from here is 4 hours away.
We did have an awesome doctor that was a Peds Endo from Oragon that we saw he specialised in thyroid research and disease(not alot of them out there). We were also sent to see doctors of Genetics as they thought that Ava might have some type of dwarfism, but it turns out that every test they have run has been negative. I did however have a doctor from the dysplasia registery say it could be caused by a thyroid disorder(haha easy way out of a real answer). It was said and then put to the side. I don’t know if you have seen the link that I posted about Neonatal Graves, but it is really good, and tells you alot about it all. If you haven’t seen it, let me know and I will post it to you so you can read it.

Valarie

[bradybunch6x1]

in reply to: recurring pretibial myxedema #1066506

I have had ongoing issues with this same thing. I have had doctors check me out. They all say the same thing PM. Although as mammabear said, I have had a sono after a blood clot developed in my leg, after all this happened. So the pretty please stands to be what I want to agree with. It is good to have a doctor take a look again. My PM is continuing to attack the top and side of my feet, I even have my big toe getting it, looks as though it may be moving onto the fingers as well. From what I have come across it looks as though we can suffer from PM more than once, and it would also depend on what part of your body it wants to attack. It may not be your legs next, or even the tops of your feet, but your fingers or your toes.
Valarie

[bradybunch6x1]

in reply to: Graves disease in the funnies #1066132

Love it! Oh so funny. Maybe we all need a multitool that has that slogan on it!LOL Make sure it is green….LOL.

[bradybunch6x1]

in reply to: Neonatal Graves Disease #1071111

Your very welcome, that is why I am on this board. I know how hard it is when you have a newborn that is sick, and you have questions that seems like you won’t get answered. I have been there and done that and it’s not easy. I am still after having 3 born with this trying to figure out some of it.
I just thought of something that may sound a bit ahead of its time but figured I would mention it so as you have it. Now that you have had a child born with Neonatal Graves, you need to be aware that you are more abt to have another child with this. I know that is scary, but as long as you are aware, then you can take the proper steps in the future to have a healther pregnancy. It would best serve you to have a Maternal Fetal Specialist in the future. One that has experience in doing things like fetal blood cord sampling, and one that is very skilled at doing Ultra Sounds. Also one that knows a bit about pregnancy levels of the thyroid. So if you are intending on having another child it would be best to set these doctors up in advance than wait until the last minute. You can have a healthy baby, but the steps of getting a doctor with this kind of specialty is best so that they can make sure it is a healthy pregnancy. Also please if you do see a different doctor for any pregnancy that they know from the get go that you have had a child with Neonatal Graves. Also would be good if you change your Endo that the Endo is aware if you become pregnant again that you have had a child with Neonatal Graves, that way they can check the thyroid levels, as well as the antibodies early on in the pregnancy as well as in the second trimester.
If you come across anything that seems scary, or you think you need to ask, or even just want to talk I am here.
Oh you will find this of some interest. Our daughters(all 3)have seen an eye specialist. They checked Ella, and she appeared to have a slight case of lid retraction, and Ava and Ella both have lid retraction and lid lag. So it was often that we would walk in on them when they were sleeping with there eyes open. They haven’t had any serious issues with this, as it seems they have really grown into the eyes now.
So anytime just post or ask I will try my best to answer with what I have run across or even just have a person to vent to I am here.
Valarie

[bradybunch6x1]

in reply to: Neonatal Graves Disease #1071109

I think the biggest thing they missed was lack of chatter. None of them really made alot of noise. Ava and Ella at a month old were rolling over, and crying like they should. Ava couldn’t hold her bottle on her own until she was about 4 months(a 2 oz nursette). I think she was lacking hand eye corndianation. Ava could sit up, but couldn’t get herself into the postion like she should. You might want to actually check into early intervention in your state, since Kenleigh was born with this disease, they can monitor her for any developmental delays, and if it starts to appear they can come into your home and do therapy at no cost to you. Neonatal Graves puts babies at a higher risk for having developmental delays. Not always the case, but good to know. Neonatal Graves automatically quilifies Kenleigh for monitoring threw the Early Intervention, not to include the premature birth.

Also the big thing I want to warn you about that if your doctors haven’t told you about is the CT and/or MRI of the head. They wouldn’t allow our twins to leave the hospital without one, so if you haven’t had one don’t be scared if the doctors order one soon. It is to make sure that she doesn’t have Craniosynostosis(premature closing of the sutures in the skull). It is sometimes found in infants that have Neonatal Graves. It isn’t always though. Faith had a CT of her brain when she was younger also, but didn’t have Cranio. It’s good practice for the doctor to do this if for any reason it seems there head is of a miss shape. Also since Kenleigh was born premature a bit it is good for you to know to look out for this, since it may not really show until a bit later. Keep your eyes open. It’s better to be prepared for it all.

I hope that Kenleigh does well off the PTU. If the blood samples were done and sent off, then it could be several weeks, but if your doc doesn’t have them and after having Kenleighs off the PTU and she has to go back on, it might be the best place to look for an answer.

Also the part about the CT, I had one, was put on steriods(IMO I wouldn’t do that). Then given radiation of the orbits. That wasn’t to bad, but I also had developed some pressure in my eyes. The CT showed that the muscals around my eyes were affected, nothing to do except wait for the disease to go into the cold phase. So that is where I am at now.

As for the meds being cut, you can not say that your antibodies are lower, that is not always the case. Antibodies have nothing to do with our meds really. I can say this because my levels are normal, and have been for awhile, but I also had my thyroid ablated. but I still struggle with the disease, which is also indication that my antibodies are elevated.
Anyway here is praying for you and yours, I hope that Kenleigh does great without the PTU.
Keep us updated on you and her.
Valarie

[bradybunch6x1]

in reply to: Neonatal Graves Disease #1071107

Hi again,
I just thought about this, and it may or maynot help your doctors answer a question your having. I remembered the doctors did testing on the blood from the cord after our twins were born, this may help answer if your daughter has the transiant type of Graves or not. I don’t know if your doctors did do this, but they may have. Sometimes they don’t. Another thing they could check would be your antibodies now, to see if they are still elevated. See if your antibodies are elevated then the babies would also be if it is transiant, if yours were not(from the cord blood) and hers are then you have an answer as to what is going on. Although after having had the baby yours may not be that elevated. So this may or may not answer anything, but if they have already done these tests what would it hurt.
Let me explain a bit more because it would be possiable to have elevated antibodies and her also have them. But if she had them, and you didn’t then that would be an answer. Some doctors aren’t willing to do these tests(because they are not approved for clinical treatment), so you may of not had them. Also if you have your antibodies checked now, it may not answer the question because when your pregnant the antibodies rise, and then after birth they fall, for me though I had my antibodies checked at my 6 week check up and they were still very elevated(at least after Faith was born).
So it may answer something, but it may not. If these tests weren’t done by now, you may just have to take the wait and see approach.
Just something I remembered about what happened to me.
Valarie
Also I wanted to mention that while I was pregnant with Faith(our 4 year old) I started into a hot phase for the eye disease part of this, so if your eyes do start to bother you I would be for sure running to a doctor. Mine at first was alot of watering and burning. It got worse from there. So keep an eye on your eye health.

[bradybunch6x1]

in reply to: Neonatal Graves Disease #1071106

I just wanted to say that Ava gained weight during her early development, but it started to drop off. Kenleigh was pretty good sized for being 32 weeks, as Faith was. She didn’t have a hard time gaining. She did well. I can say the only thing that it has affected in her is speech. It was slow to start, but once it did look out. She didn’t have any Occupational therapy, or physical therapy. She did do speech for about 3 months right before she turned three. She does have some hearing issues, but we don’t know if that is related to the Graves, who knows with that one(it would be hard to tell). Other than that man she was a fighter. I do remember she and her sisters would get this funny looking almost like rash when they were little. It almosted appeared to be bite marks or welped bites. It turned out that they couldn’t tollerate the heat, the doctor did say it was something that was caused from the Graves. Heat intollerence is a common symptom, so for them it was kinda like a rash. They stopped dressing them in the NICU and poof it was gone. I recall that this happened often at home, and as soon as the babies had there clothes off for a period of hours it would go away.
As for the food allergies, peanut butter is something most Peds docs warn us against until they are older, so I would think that you eatting it could cause something of this nature, but that doesn’t always mean much. Just keep that thought in your head when she gets older, and keep a good eye on her if you do introduce the peanut butter. I would even ask the doctor before thinking about it later, never know they may want to check her for that allergy since it is often a very serious reaction if they are allergic. I have a relative that is allergic to corn, nuts, and tree pollen, as well as grass, and soy. She just found out this year, and she is 15, they told her if she didn’t take in any of these, then she may outgrow them. So I too also believe that you can out grow them.
Is Kenleigh’s heart rate high? Do they have her on beta blockers? Just curious.

Well I better go for now.
Valarie

[bradybunch6x1]

in reply to: Neonatal Graves Disease #1071102

Ya do have a shred of hope! Many times it can be as long as 6 months, sometimes longer depending on the amount of antibodies that are in there system. For most of them it was around three months, I do believe Faith our oldest daughters was a bit longer than that something like 5 months I think. In most written liturature for this disease it is said to be about 6 months. So you have hope. As for the jumps in thyroid levels this too is also common. Our daughters were up and down all over the place. We were having to have blood drawn every week, so that they could adjust there PTU. When we got to the end of it, we actually were really only giving a drop! Even that little of an amount changes there levels. I think that you should be thinking about what the Peds Endo is saying as it is more common for them to know what is going on with the little one than our Endos that is why they speacialize in the treatment of Pediatrics. Also it is even more uncommon for a baby to be born with Graves that isn’t transient than for it to be transient, so the likely hood of that being the case is alot slimmer. I think you will find that sometimes in the care of our little ones we tend to think that the Endo that treated us isn’t the best choice for our children, as they are alot more complicated than us adults. Give it time your Kenleigh will surprise you and she will also teach you alot about this disease. It’s so different for them.
If you do not mind, could you tell me were your seeing these doctors? As I am often interested in finding out where the doctors are that are treating little ones with Graves.
Valarie
Oh P.S. I had to actually look at Faiths medical records to make sure I was right about it being that long, and I see now that it was about 4 and a half months, not the 3 I mentioned earlier or the 5 I mentioned in this. I guess I am not really good with my memory about the length it was, but medical records were here so I looked. I do however remember more than one doctor telling me it could be as long as 6 months, and even had a doctor tell me that the TSH could stay suppressed for our twins for as long as they lived…..found that strange, but for our children it was not the case.

[bradybunch6x1]

in reply to: Update on Ava and surgery and any advice? #1067009

Thank you for your response.
They did confirm this from pregnancy. I just keep running into the things some other doctors have said. If these dignoises that she has are going to stick around for life in her medical chart, then I wonder alot if I shouldn’t just go and get the Peds Endo to say yep this is all related, but that requires us traveling back to Idaho for that. I think your right, I should let it go.
The Genetics doctors have labled her as an undignoised syndrome….which I know isn’t the case, but they don’t know what they are doing when it comes to Neonatal Graves, they have said so themselves. I was actually told by the Genetics doctor here, that he didn’t know what Neonatal Graves was! I knew then they weren’t going to answer anything. We had seen two Genetics doctors, and had things sent off to the dysplasia registery(which are the top docs for dwarfism in the US)to have them all say well it could be a thyroid issue, and then turn around and say it probably wasn’t. I don’t know anymore, I just wonder what else they have missed.
Ava has so many things that I have read that is realated to the Neonatal Graves, and not one other Genetics test that has ever come back abnormal in any way. Matter of fact the OB specialist that I had while pregnant did Genetics tests on blood from the cord of the babies(which I didn’t even know about until after the test was already sent), to have every genetics test come back NORMAL. I just wonder how long the doctors are going to try having us running around in circles because they refuse to actually look at it all. So I guess I will let it go, because I know our Peds Doc is fine with the answers we already have.
Thanks for responding, it means alot, that someone else has a thought about it all.
Valarie

[bradybunch6x1]

in reply to: very confused about a bunch of stuff… #1066975

Trish,
I’m going to give you my opionion, that would be to get a different doctor. If you can’t talk with the man, then really there is no reason to think you will ever understand your medical problems. Find a doctor you can talk with, and one that will try to explain things in a way you understand. As for the tests, I can’t and wouldn’t even if I knew more about them say anything. It really is something you need to have explained to you by a practicing doctor. It really sounds as though you think you need a different doctor, but you are trying to assure yourself of the reasons, and I think you have plenty for that.
Good Luck,
Valarie

[bradybunch6x1]

in reply to: Congratulations Nancy and Ski #1067522

I’m very thankful that Nancy and Ski take the time to care so much for so many of us, and without you so many people would still be wondering what on Earth Graves disease is, and not even have a clue. So thank you both for being such wonderful people, and caring so much. Your awsome!! You so desearve much more than an award! Thanks ladies.
Valarie

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