Help please, My grandson was born yesterday morning with suspected TAR syndrome... he has the missing radius bone in both arms... he has the lo platelette problem has already been giving two units of platelettes... has a heart murmur, because he was born c-section, from what we can tell, he had no bleeding in the head, so there for hopefully no mental retardation... His toes also are sort of rounded like what the papers say... We are at Texas Childrens, so he is in good hands....
We know most of what we are looking at, but some questions, and probably alot more as we go along..
In some of the research we have seen, it seems that we cant find any reports of anyone over the age of thirty... Is there a life expectency??? Can diet or supplements in any way shape or form help build up platelettes (I know my questions my sound confusing, but you who know me, I know you understand) I know we will have to build up immune system, becus viral infections can be dangerous.... how do you do this in a new born? We are reading that most tars children die of heart complications??? yes/no????
Where does this come from??? Is there no way to test and see if others in our family, or if his children carry the gene... we understand, that in order for a child to be born with this syndrome, the gene has to be in both parents.... so did both parents pass the genes on to the children??? Is this something my other children or even my sister's and brothers children will have to worry about???? Anything else you can give me, I am ready for..... We can do this.... I just need good info!!! thanks, everyone.... luv ya'll bunches!!!!
__________________ God is and all is well
~John Greenleaf Whittier~
I know nothing about this condition, but breast feeding is certainly preferable to formula for building immunity and general health.
Milk allergies are common according to a brief search I did on the disease.
It appears the hemorrhaging is mostly contained to the first 14 months of life.
Sorry this has happened. I am encouraged by your strength in a trying time.
It looks like breast feeding for at least a year is important, to help protect from viral illnesses.
I couldn't see anything about reduced life span - it mentions normal adulthood and work, but obviously, some forms of work would be unsuitable.
Thanks everyone for responding... we still have lots of reading to do..I got home late last night from the hospital, and did a quick glance, so will be jumping into reading as soon as possible.
My little tadpole (isnt that such a nickname!!!) is actually doing very well. He has had only one transfusion of the two units of plateletts on friday around five oclock my time. Before the transfusion, his platelette count was something like 17thousand.. (Im not sure I understand the count thing) after the transfusion, it was 120thousand, and last night at the 6 oclock count it was at 51thousand... they will transfuse again once the count drops below 50thousand... so one transfusion has so far lasted 60 hours (two and ahalf days) so to me, that seems good, and according to what I was hearing the nurses say, thats a good thing They did have to put in a feeding tube last night, because he is getting really gassy with the feedings and they are concerned with that idea... he can start bleeding so easily... Exrays and all the real testing will start today... Mom and dad are now with him, so I will be home for the week. If someone gets a nugget, I will be truly greatful for your sharing....
On the continueing of good notes, Little mr tadpole seems to have such a great personality... he hasnt been fussy, he just seems so very content and happy to just lay there in the warmth and love of His creator and the beautiful people at the hospital.. I have even seen a dimple and have seen little smiles on his face... He hears my voice, and I think now knows my voice.. when he would start getting fuzzy all I would have to do is start talking and he would calm down... I can see in his attitude, that he will excel in his walk of life
breastfeeding will not happen at all probably, because his mouth is not strong enough to take the breast(????) but, mom is pumping, and is going to continue pumping so he will be able to get breast milk....
when I get more results, I will let ya'll know
Just me - did he go to term? If not, how many weeks? Why C section?
And do you mind all these questions, in public? We can PM, of course, but I expect there are people here who may want to know about TAR.
Hi Xania, no I dont mind the questions, we want to search for answers, not only for us, but for anyone who might run into this problem.... He was delivered at 38 weeks, and only delivered that early because they wanted to make sure she didnt go into labor. All three of her other children were born c-section, early, (I think they said like in the 7 month) Because her blood pressure would go up sky high, and the high blood pressure would create migraines, so they would have to take the baby early... She was very blessed to be able to go full term, or as safely to full term as possible without risking the going into labor problem. And I need to go back and edit my first post... the c-section did not cause the heart murmer the way my punctuation made it look.... In all actuality, the c-section probably saved his life... His platelette levels were so lo, that if he had been born vaginally, it would have caused trauma to the brain, and would have caused bleeding in the brain, which could have caused severe mental retardation, and possibly death. So thank God for that c-section!!!
My little tadpole is coming home from Texas Childrens today.... The feeding tube lasted only long enough for them to realize that the formula they had him on, still had milk in it... They didnt believe me... I told my son to look at the ingredient list, and I was right!!! But, mom is breast feeding... she will breast feed as long as she can, and will also pump, so that he has enough milk to last a year. What a good mom.... He had a transfusion yesterday, and it was 6 days earlier that he had another one... So from what they are saying, he is doing very well... He has such an attitude... He is definitly going to be a handful.... I was talking to the brace company that we deal with yesterday, showed our girl pictures of Tadpoles arms, and she believes that if we can get him into an ortho, and maybe build some braces for his arms and thumbs, that it will go along way into helping him as he grows older... I have wondered about contractures, and she agrees that it could be a problem if we dont start dealing with it now... So any ideas... keep bringing them... Am posting pictures of my newest grandson, so that you can see what I mean about his arms.... I hope the size thing works out... if not, Xania or one of you smarter then me, please help me to resize them....
Also, while I am at it, My son said that Texas Childrens is low on platelettes, so if anyone in the vicinity wants to help out, Im sure they would love the donations!!!! We as a family are starting blood drives in November.... And while we wont get any type of credit for it, we still believe in replacing what we use, and know that giving blood is such a great honor.... I dont even want to imagine what would have happened if the blood hadnt of been there for him!!!!! So, do me a favor, roll up your sleeve and give a little bit.... we would greatly appreciate all the efforts!!!!!
I hope I did this picture thing right!!! Ok, Im not sure what I did wrong, but I cant get the white part off that picture... I cut the picture to get the other people out of it... is that why its that way????
Thanks so much for letting us see them - you are generous to share them with us. Sorry I can't help with the platelets - that would be quite a commute. I'm sure you will get a response.
That was encouraging news about the braces. When will they start to prepare them?
Im not sure if the ortho doctor will even see him.... We were told that an orthopedic doctor would not talk to them until the blood platelette issue was solved... But we arent talking surgury here, we are talking braces... So, all we have to do, is find a pediatric orthopedic doctor who would be willing to try the braces.... Since this is such a rare condition, apparently no one really knows what will work and what wont.... I need to make time for more reading of all the sites I have, to see if anyone has had luck with braces before....
If the orthopedic doc can't help, can you find a physiotherapist - sorry, I think you call them something else over there - at least as a starting point to find someone who can help? Physios meet so many specialist docs and clinics - they would know where is best to go.
Those pics - they look all right. What white part do you mean? You had to crop them to remove the other people, so maybe that enlarged and pixelated Tadpole - He looks good - we can see him and his absent radius!
for some reason when I was posting my computer wasnt refreshing the site.... Im not sure whats the deal... when I was looking at the bottom picture, it had a white frame around it... glad it worked right....
We are going to start with the ortho guys, and work our way around.. You cant get in to see any therapist without a recommendation from doctors, so if nothing else, maybe a chiropractor can recommend braces???? But, we shall see...
TAR Syndrome
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