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Neonatal Graves disease

Valarie
0 Recommendations

Hello all,
I am trying to find anyone that has had a child with Neonatal graves disease that may need some support. Unlike most people that have children with this disease I am well versed in it. I have Graves, and have passed Neonatal Graves along to 3 of my 6 children. My 11 year old son also has Graves. The last 2 children(twins) were dignoised with Neonatal Graves at 18 weeks in utro, which is actually unheard off.
I have learned alot about this disease, and feel that I need to find others that may be dealing with this for there children.
Mind you I not only have been dealing with this disease for my children but for myself, and it can be a very complicated and life threating disease in infants as well as adults.
I hope to reach out to anyone who maybe facing this and help them threw it.
Valarie

Explore topics in this discussion:

MRSA Pain Craniosynostosis Speech therapy Graves' disease Ear infections Pregnancy Physical therapy

15 replies

Torismom

Valerie,

My 2 month old daughter was diagnosed at birth with neonatal graves. I suffer from graves as well but my daughter does not seem to be reacting as well to the medications as the doctors predict. I am concerned about the effect that this may have on her long term and wonder if you might be able to share some insight with me as this is a very rare condition and no one seems to be able to give me any idea what to expect. Any advice you can give would be greatly appreciated.

Valarie

There are alot of effects that the thyroid meds that your daughter is on can have. It all depends on which way she is heading with her thyroid levels. TSH can be supressed for along time, as my doc said for my daughters it may never return to normal(but it did). If the thyroid is to supressed it can cause alot of problems. So make sure the levels are monitored closely. Our daughters were done every week and meds adjusted if needed to be then. The twins were both very sensative to the PTU, and actually took way less than most children there size. The main thing you want to make sure of is that the your child doesn't go hypo because that is alot worse than hyper on a baby, due to developing brain. The PTU is ok and is usually used up to 6 months of age in some children, although all three of my children had there antibodies cleared by age 4 months. What tests are your doctors doing? How often are they doing tests? Is your daughter on a Beta Blocker(type of med for high heart rate?)Have your doctors been checking on your daughters skull making sure that she doesn't have Craniosynostosis? I would love to share some more info, if you would like please feel free to email me at icudoucme79605@yahoo.com and I will share a bit of what I know with you.
Val

kittycat71263

hi just a question my mom and sister have graves disease but i am fine is there a chance for me to still getit or pass it on to my kids?

NORDGeneticCounselor

The specific cause of Grave's disease in adults is not known but it is thought to related to a combination of both genetic and environmental factors. Since you have a family history of the condition, you may be at higher risk than someone without family history. Neonatal Graves disease occurs when a mother has Graves and passes thyrotropin receptor-stimulating antibodies (TSHR-SAb) across the placenta. The risk for this to occur depends on the antibody levels in the mother but is estimated to about 1-2%. Your regular doctor (and obstetrician, if you become pregnant) should be made aware of your family history so you can be monitored appropriately.

kittycat71263

Thank you so much!!

Rebecca76

Hi, I have Grave's disease, but had RAI treatment earlier this year. I have both antibodies for grave's and Hashimoto's. My three year old daughter is now hyperthyroid, but also has both antibodies, Graves' being dominant. She has not experienced any problems as far as her growth is concerned. I was told she had an irregular heartbeat when she was about 18 months old. Could these have been palpitations? I guess these are all questions I should ask the doctor. Although the Grave's antibodies are dominant, she shows more symptoms of Hashimoto's,The doctor's want to do an uptake to absolutely sure it is Grave's before the prescribe meds. Does anyone here have a child this young on meds? What type do they give them? Is it liquid form? I took PTU for many years and the taste is horrible!

Valarie

PTU is usually give it is compounded into a liquid form.

Boogie

On April 26th I went into early labor with my 2nd daughter at 30 weeks. She was born hyperthyroid. In 2005 I was diagnosed with Hasimotos and graves disease and had my thyroid removed. During my pregnancy my TSI went up to 406 no where close to the normal range. My daughter is still in the NICU and having her levels run every week since birth. TSH, Free T4, T4. I would be interested to know if you also nursed your children with these conditions? Her level for TSH is still all over the place.

Valarie

Hi Boogie,
I feel for you sweetie. It is awful when dealing with one in the NICU. I hope that she is a fighter. She must be to have made it this far. I'm glad that the doctors were checking your TSI. I hope that they knew how to do treatment for you. My TSI was well in the 800 range with nomal being >130. I didn't get to nurse when I had the babies as I was very ill after wards. I ended up with MRSA in my incision, so I was on some serious medications for pain, as well as infection. I was told by our peds Endo, not to worry about TSH as in infants sometimes the TSH is suppressed forever. The thing that should be being checked was the Free T4, and the T3. How much did you little angel weight when she was born? I am hoping that you have some doctors that have cared for a child with Neonatal Graves, as some tend to think they know what they are doing and don't. If they don't know what they are doing I hope they are consulting with someone who does. My daughters were not treated by TSH at all. Matter of fact it was there Free T4 that told the doctors what to do. If that is what is happening with you little angel, then you might want to have them consult with someone. I could recommend a good doctor via email if you would like.
Valarie

Boogie

Valerie,
Thanks for the response. Yes they are checking her T4 and Free T4. The neonatal dr's are consulting with the pediatric endo. She was 3lbs 14 oz! We where happy she weighed that much.
Boogie

Valarie

Yeah how great. Our little Ava was 3lbs 10oz. Your angel with make it, she will show you a few things. It's hard but she will. Ours is! I was told that I could nurse if I wanted to before I had the twins(before I was sick)Was told it would be the best for them acutally.
Valarie

Isabellasmom

I had Isabella at 31 weeks, so she is 5 weeks premature. She weighted 3lbs 6 ounces. I had Graves disease which was treated by a total thyroidectomy last year. So I didn't even know that she could get Neonatal Graves, but she was diagnosed shortly after birth. Her symptoms consist of increased heart rate (not all the time, her heart rate goes up when she gets upset or gets too much stimulation), she is having trouble gaining weight, and her direct billirubin is elevated. They have started treatment of Iodine and PTU. She is my first child and I am overwhelmed with all of this. I am so worried of what could happen.....anyone going through this or been through this and can give me some feedback of your experience. I am beyond scared/worried right now.

Valarie

Hello Isabella's mom,
I know how bad you must feel with the thoughts of what can happen. It is overwhelming at such an important time for a first time mom. It is hard to say what the outcome of all this will be for your family and your daughter. The outcomes can be so very different for each child. We have had 3 with a different outcome, but being treated early is what helps. It will for sure be hard to deal with all the labs being drawn once Isabella is home. For us it was a weekly thing. They will monitor her until her thyroid levels become normal, as well as her Billirubin. It is all very indicative of Graves disease, as well as some other complications that may or may not come from the Graves disease. We also are having a hard time with our daughters gaining weight, and that may or may not change in the future. Ava is 16 months old right now and only weights 15lbs 6 oz. She is still in size 0-3 month clothes and her sister Ella is only in 3-6months, about to brake into the 6-9 months.
Ava and Ella both are in Speech Therapy, and had Physical Therapy starting from the month that they arrived home. They have progressed well, and Ella is now walking. Due to prematuratiy as well as the Graves they are a bit developmentally delayed. Ava more so than Ella. Our oldest daughter was only delayed in Speech.
Isabella is a pretty sick little girl, and you really need to chairish each moment you get to share with her. I am wondering why they don't have her on a Beta Blocker for the heartrate though. I would like to share a link with you that may help you understand Neonatal Graves. It is great information, and there isn't alot out there on this subject that goes into detail, like this one does.
One thing I should caution you about is that they will probably do a CT of Isabellas head before you leave the NICU. It is to make sure that Craniosynostosis is not involved, but make sure that you yourself check Isabellas head every so often for the soft spot, and keep an eye on the shape of her head as well. This is sometime caused from Graves, and if born premature may not show up on a CT early on in the babies life. Ava and Ella and Faith all had CT's done, and none of them showed this problem. But later on Ava did develope the Cranio as well as hydrocephalus(water on the brain). None of that showed on the earlier CT but they were both there by 4 months. The neuro said it was due to the fact of the density of the bone in there heads at the time of the CT. So caution is best. If it doesn't seem right, more than likely it is not.
We were fortunate not to have to deal with the Billiruben of this disease, but I have seen that it can come from the Graves disease.
Well Isabellasmom if you would like to chat with me feel free to email me at icudoucme79605@yahoo.com, I am always willing to help another Graves mom in need. Here is the link I talked about.
http://books.google.com/books?id=HoOm6PuNcwwC&pg=PA1049&lpg=PA1049&dq=neona tal+thyrotoxicosis&source=bl&ots=lWaAP-UHBV&sig=aXVDdU4U98sVAYi8U4jtpZisF0g &hl=en&ei=O4NNSu_kIorflAed_ZCkBQ&sa=X&oi=book_result&ct=result&resnum=1
the portion about Neonatal Graves disease was actually written by the twins previous doctor.
Valarie

ar4278

My son who is now 6 years old was born with Neo.Grave's. His case was resolved by 6 months. I am curious though, my son has been receiving speech therapy for articulation and I just met with his teacher regarding some delays in academics. I was told by our Pediatric Endo over 5 years ago that this case was resolved and my son needed no further treatment and saw no need for any concern for his future. I wonder if 1) should his pediatrician routinely run blood work to check thyroid throughout life (because they haven't) and 2) do any other members here have older children who had Neonatal Grave's and did you see any developmental delays? My son also suffers from ear infections that are enough to be a pain, but not enough that the ENT will put tubes in his ears, which may be a reason for the delays in speech and in school. I am at a loss as maybe all of this can be tied together.... I am worried that my son will always stuggle in school and is that in part to the Neonatal Grave's or I am just "looking" for something......
Any insight anyone has here would be greatly appreciated!
-amy-

Valarie

Hi Amy,
As you can see we have three children that were born with Neonatal Graves, and I will share what I know. Our daughter Faith has speech delay as well, and some cognative delay. She is in Preschool. Her sisters being born with Neonatal Graves were actually put into the system for early development before we ever left the hospital, due to the Neonatal Graves. It does cause developmental delays, which could be the very reason that your son is having problems in school. Although the thyroid part of the disease is resolved, that does not mean that the issues that this disease can cause to a fetus will not affect them when the are developing. For instance, Faith is now 4, and her Graves disease resolved when she was about 4 months old, she is still developmentally behind in certain areas, due to the development of the brain fron the Graves disease. Also another good example would be Ava, who has alot of medical problems that are related to the Neonatal Graves, but does not have any more thyroid issues. As for Ella, she too is delayed in speech. So I wouldn't say that you are looking so much for something, as you are seeing something, that has been slowly progressing with age. Early development in an infant with Neonatal Graves is for sure a concern, and if he has any developmental delays, you can almost be certain alot of it is due to the Graves disease. There isn't enough research into this disease to say, yes for sure it is that, but looking at all the problems that they list as complications from the disease, would inturn make you think that it is all related! If your Peds Endo is not a doctor that actually has studied thyroid disease more indepth, then you can be certain that they don't really understand most of it! The Endos that are for adults are alot like Peds Endos in the fact that almost NONE study thyroid disease to be specialized in the treatment of it. Since the disease is so rare, you can almost be sure that your Peds Endo may have only treated one or two cases in there carrer. Our Peds Endo is not like that though. He specialised in Thyroid disease in children, and is active in treatments of such things.
As for the thyroid testing, there is always going to be a chance that your son will develope Graves in the future, but testing is not really needed unless you see a change in him. You know what this disease does, so I would encourage you to just be mindful of what you experenced and you will know what to look for.
Also I forgot to mention that Ava, Ella, and Faith all are having hearing problems. May not be related, but could be. Hearing in a fetus is actually affected from the thyroid levels in the mother, so that is one of the reasons they say that our Free T4 levels should be maintained in the upper levels of normal in the early parts of pregnancy. So if your thyroid wasn't level, or you didn't have enough in the beginning of your pregnancy it could of caused some hearing problems.
Ava has tubes, Ella needs to see an ENT specialist about getting them, and Faith has been recommended to have them as well.
Hope I answered your questions, if you have any more I will try my best to answer them.
Good luck.
Valarie

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