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Do you have a baby with congenital hypothyroidism?
I'm sending this out to any parent out there who may have a baby with congenital hypothyroidism. My fourth son was born with this condition and my husband and I are always looking for anyone who can relate. It feels like no one really understands because we are from a small town and my little one is the only one around with this. At his local doctor's office he is quite popular because anytime I bring him in they are very interested in anything he has done. He has been on synthroid since he was a week old. I would just really love to talk to anyone who can relate. Thanks.
Did read the Italian article. CMs did seem to be related to the initial T4 value at time of screening. The lower the value the more likely to have other problems - even though still a small percentage.
Thankfully, it is a small percentage. I do feel stressed with your info. Are we going to have to worry that our children end up in intensive care down the road? Do the studies make correlations between the different types of CH with respect to how major the maformations are (and how many)? At what age, are they seeing these problems in the CH kids? Was it before they figured out the correct treatment for the kids? How bad of a situration is your daughter in? Can it still be managed? Is your daughter requiring other medications/surgeries due to the malformations? With these studies do they feel that if they catch these issues early, they can fix the problems. What is the prognosis for your daughter currently? I know you said it was puberty causing a lot of problems. Thanks in advance. Any info is appreciated. Sorry I have so many questions.
Looks like I can't leave an email address. we'll have to talk through this site if anyone needs more details. The India paper does have the best references for other studies done around the world.
Hi- It is wonderful to hear about your daughter. What a great age she is at- old enough to be engaging and curious but still a bit young for the "no" phase. I am very glad to hear she is doing so well and life is so normal.
Thanks for checking with your endo - his response was verbatim what our endo said 6 months ago and we go to the #1 Children's Endo dept. However I just had a conversation with our doc this week and he is now acknowledging that although rare there have been studies done globally that do show that around 10% of CH kids do have other congenital malformations. If you are interested in looking at this further check out the references cited in the India article. With all the new information coming out it appears that my daughter does fall into this 10% subgroup of CH kids. Interestingly some european/asian studies still show cardiac as the largest secondary malformation but they have listed central nervous system and eyes as having congenital issues and for the last 10 or more years my daughter's ophthalmologist has been baffled by why her eyes get "funky" when she is sick. This new data might help understand some things with her. The thinking currently is that in this subset of CH kids there appears to be a gene or combination of genes that affect neural crest cells which play a role in the development of the thyroid, heart, eyes and other organs. Malformations can be major- (the NY study) or minor such as my daughter's pulmonic stenosis. So the CH did not cause her issues but when her thyroid didn't develop her heart and possibly other organs had similar, and thankfully minor, malformations. There is still a lot about my daughter that the docs are trying to figure out- not having a thyroid does complicate their testing/thought process since she does deal with other endocrine issues- which is not mentioned in the recent studies. I do feel better now that we are at least starting to hear that there are other CH kids out there that are having some similar health issues and studies are underway. For now we treat the symptoms.
I hesitate writing about this because I don't want you or others to worry about your children. Most of you have babies and are still struggling with so many emotions from the CH diagnosis. It is only a SMALL percentage of kids that seem to fall into this group. But I do feel that for the few that might have children with other malformations it is important to have this information out. I would recommend that any CH child with a heart murmur have an ECHO- the vast majority of murmurs are benign but if you do find another congenital malformation then you want to make sure your docs are aware of these studies being done and your child is watched a bit more carefully.
Since this is about small subset of CH children I don't want use this chat site to go into much more and worry parents unnecessarily so if you or anyone have questions and real concerns you can contact me directly at ***@**** and I will be happy to loop you in to what I am finding out.
Thank you for your prayers and support. Sometimes it does get a bit rough but we are very thankful that she has grown into a bright, loving and happy 18 year old and it might take a bit of time but she will be okay.
Thanks for checking with your endo - his response was verbatim what our endo said 6 months ago and we go to the #1 Children's Endo dept. However I just had a conversation with our doc this week and he is now acknowledging that although rare there have been studies done globally that do show that around 10% of CH kids do have other congenital malformations. If you are interested in looking at this further check out the references cited in the India article. With all the new information coming out it appears that my daughter does fall into this 10% subgroup of CH kids. Interestingly some european/asian studies still show cardiac as the largest secondary malformation but they have listed central nervous system and eyes as having congenital issues and for the last 10 or more years my daughter's ophthalmologist has been baffled by why her eyes get "funky" when she is sick. This new data might help understand some things with her. The thinking currently is that in this subset of CH kids there appears to be a gene or combination of genes that affect neural crest cells which play a role in the development of the thyroid, heart, eyes and other organs. Malformations can be major- (the NY study) or minor such as my daughter's pulmonic stenosis. So the CH did not cause her issues but when her thyroid didn't develop her heart and possibly other organs had similar, and thankfully minor, malformations. There is still a lot about my daughter that the docs are trying to figure out- not having a thyroid does complicate their testing/thought process since she does deal with other endocrine issues- which is not mentioned in the recent studies. I do feel better now that we are at least starting to hear that there are other CH kids out there that are having some similar health issues and studies are underway. For now we treat the symptoms.
I hesitate writing about this because I don't want you or others to worry about your children. Most of you have babies and are still struggling with so many emotions from the CH diagnosis. It is only a SMALL percentage of kids that seem to fall into this group. But I do feel that for the few that might have children with other malformations it is important to have this information out. I would recommend that any CH child with a heart murmur have an ECHO- the vast majority of murmurs are benign but if you do find another congenital malformation then you want to make sure your docs are aware of these studies being done and your child is watched a bit more carefully.
Since this is about small subset of CH children I don't want use this chat site to go into much more and worry parents unnecessarily so if you or anyone have questions and real concerns you can contact me directly at ***@**** and I will be happy to loop you in to what I am finding out.
Thank you for your prayers and support. Sometimes it does get a bit rough but we are very thankful that she has grown into a bright, loving and happy 18 year old and it might take a bit of time but she will be okay.
Hi! So good to hear from you. My daughter is 2.5 years now and doing great. It is like you said in the past, it does not affect day to day life. In fact, if it weren't for the daily little pills, you'd forget she had CH. She is very smart, athletic, creative, etc - just so much fun. We thank God everyday. I wanted to wait to reply till after her Wednesday appt. to see if I could get some info for you regarding what the current thought is concerning abnormalities with the kidneys, heart, etc. Our Children's Endo Dept. is ranked third in the nation and her endo is head of the dept. He said that the viewpoint is still the same. For a CH kid to have other abnormalities is very rare. He said they have seen so many CH kids and it really is rare to have other issues. He believes that the problem would be something else, not CH. Just wanted to let you know what they are saying here. I will definitely keep your info in the back of my mind though if we end up facing some stuff. Also, I read those articles you cited. I saw how the article regarding India was with children that had not been treated with thyroxin at an early age so it made sense that since the heart and other organs are dependent on thyroid hormones that they would face some issues if not treated properly. Also, with the case in New York that data was comprised of kids 2 and under so hopefully if our kids have major issues they would catch it during the first years of life. I'm praying for your daughter. I hope it is not CH causing her problems but just something minor that will work itself out quickly and without any problems. Congrats on her going to Drexel. That is great! Hope to hear from you soon and that things are calm and having a great summer. Thank you for all your info. God Bless!
Hi All- It's been a while since I have checked in on how everyone is doing. I hope all your babies are doing well and making you a bit crazy with being so active. Post some updates when you have a chance.
We are still dealing with health issues with our now 18 year old- newly graduated from HS (Yeah!!!). I will not go into details because honestly it would just add unecessary worry to your life and what she is going through is very, very rare. It would never be a part of your life. Most CH kids just sail through the teen years- albeit it a bit rebellious at times with their meds but they get through. Her medical issues are greatly complicated by the fact that she does not have a thyroid so I do want to share two things I have found out that I think would be good to keep in the back of your head as your children grow. First teens can have freaky illnesses - I have found that there is a reason that there is a medical specialty called Adolescent Medicine. Teen bodies (which actually change and grow until the mid 20s) are very different from young children and adults. Teens with chronic illness such as our CH kids may need extra care and attention if they go through some freaky teen malady. The best thing I did for my daughter was to change her primary care doctor to an adolescent med doctor that specializes in managing teenagers with chronic health conditions. She is the team leader who confers with all the specialists and monitors her routinely. Hopefully you will never need this specialist but just in case it is something I wanted to let you know is available.
Secondly- when my daughter was born we were told that it is rare for CH kids to have any other congenital issue- even after my daughter was diagnosed with a mild congenital cardiac condition at the age of 10 I was told it was very rare for CH kids to have another congenital issue. Well the thinking appears to be changing on this- a small, but real, per centage of CH kids are at higher risk for congenital heart, kidney, digestive and skeletal issues. Here are some websites to look at: http://www.gghjournal.com/volume25/1/ab21.cfm and http://www.hindawi.com/journals/ijpe/2010/940980/ - this all seems to be fairly new thinking but backed by some strong data done in NY state. Not all doctors are on board with this yet- our nephrologist readily acknowledges that CH kids can have congenital renal issues, the endocrninologists are not as willing to make that statement but are keeping an open mind. All I know is that for us my daughter does have a cardiac condition, renal symptoms, digestive issues and a twisted spine. The digestive and renal symptoms are not showing any of the "usual" diagnoses expected with CH kids but there is a thought process that there could be some very mild defect that, because of what she is dealing with has now become an issue. I am seeing some call for ALL CH kids to have cardiac and possibly renal ultrasounds at the time of CH diagnosis. I would be curious if you are hearing anything from your doctors on this. Is it becoming more commonplace to screen in your babies generations? Since this all seems so new I would appreciate any information you may have from your doctors on this. It is NOT my intention to scare anyone- the vast majority of CH kids are healthy with no other issues but if something comes up in these areas that your doctor says he wants to just keep an eye on it might be a good idea to have a specialist take a look and catch something early if it is there.
Our daughter is being very well managed and we do have a bit of a rocky road ahead but there is every expectation that as she grows out of adolescence her body will settle down and thing will be back to normal. Come September she is going to Drexel University majoring in Nursing- and she is one nursing student who knows what she is getting into! She will commute so that we can keep an eye on her (and considering the cost of Drexel commuting is a great decision all around!). For now we are just going to enjoy the summer.
We are still dealing with health issues with our now 18 year old- newly graduated from HS (Yeah!!!). I will not go into details because honestly it would just add unecessary worry to your life and what she is going through is very, very rare. It would never be a part of your life. Most CH kids just sail through the teen years- albeit it a bit rebellious at times with their meds but they get through. Her medical issues are greatly complicated by the fact that she does not have a thyroid so I do want to share two things I have found out that I think would be good to keep in the back of your head as your children grow. First teens can have freaky illnesses - I have found that there is a reason that there is a medical specialty called Adolescent Medicine. Teen bodies (which actually change and grow until the mid 20s) are very different from young children and adults. Teens with chronic illness such as our CH kids may need extra care and attention if they go through some freaky teen malady. The best thing I did for my daughter was to change her primary care doctor to an adolescent med doctor that specializes in managing teenagers with chronic health conditions. She is the team leader who confers with all the specialists and monitors her routinely. Hopefully you will never need this specialist but just in case it is something I wanted to let you know is available.
Secondly- when my daughter was born we were told that it is rare for CH kids to have any other congenital issue- even after my daughter was diagnosed with a mild congenital cardiac condition at the age of 10 I was told it was very rare for CH kids to have another congenital issue. Well the thinking appears to be changing on this- a small, but real, per centage of CH kids are at higher risk for congenital heart, kidney, digestive and skeletal issues. Here are some websites to look at: http://www.gghjournal.com/volume25/1/ab21.cfm and http://www.hindawi.com/journals/ijpe/2010/940980/ - this all seems to be fairly new thinking but backed by some strong data done in NY state. Not all doctors are on board with this yet- our nephrologist readily acknowledges that CH kids can have congenital renal issues, the endocrninologists are not as willing to make that statement but are keeping an open mind. All I know is that for us my daughter does have a cardiac condition, renal symptoms, digestive issues and a twisted spine. The digestive and renal symptoms are not showing any of the "usual" diagnoses expected with CH kids but there is a thought process that there could be some very mild defect that, because of what she is dealing with has now become an issue. I am seeing some call for ALL CH kids to have cardiac and possibly renal ultrasounds at the time of CH diagnosis. I would be curious if you are hearing anything from your doctors on this. Is it becoming more commonplace to screen in your babies generations? Since this all seems so new I would appreciate any information you may have from your doctors on this. It is NOT my intention to scare anyone- the vast majority of CH kids are healthy with no other issues but if something comes up in these areas that your doctor says he wants to just keep an eye on it might be a good idea to have a specialist take a look and catch something early if it is there.
Our daughter is being very well managed and we do have a bit of a rocky road ahead but there is every expectation that as she grows out of adolescence her body will settle down and thing will be back to normal. Come September she is going to Drexel University majoring in Nursing- and she is one nursing student who knows what she is getting into! She will commute so that we can keep an eye on her (and considering the cost of Drexel commuting is a great decision all around!). For now we are just going to enjoy the summer.
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