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  • Baby With Lump on His Back

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    Old 08-04-2005, 12:54 PM   #1
    HelpBaby
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    Question Baby With Lump on His Back

    Hi all. Looking for some help for a friend's son. Caleb is 9 months old now. When he was 6 months old, his mom noticed a lump on his back. It's between the L and T vertibre (spelling??) They just took him to 2 different hospitals and had MRIs done, 3 on his back and one on his skull. The doctors didn't show the parents the MRIs, and gave no name as to what is wrong. They said there is a cyst on his spine up near his head. This is not visible to the eye. What is visible is the lump lower down. It is getting bigger. At the end of the last visit, the parents were told just to come back in 6 months for a check up. When they pressed the doctor for an answer, he said Caleb is, "Abnormally normal". (No ~ I'm not kidding!) When she asked again about the lump, the doctor told her it is a muscle that sticks out farther when he bends over. (As far as I know, muscles aren't suppose to do this OR get visibly bigger as months pass...) The lump is now about 3 inches long and this is pretty big when you consider it's on a 9 month old's back.

    Has anybody got a name for this? Any suggestions for research would be greatly appreciated. The mom has 3 boys and not much time for computer searching. I said I would help. The closest guess I'm finding on the net is spinal bifida occulta. Caleb is totally normal except for the lump.

    Thanks in advance!

     
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    Old 08-04-2005, 07:19 PM   #2
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    Re: Baby With Lump on His Back

    helpbaby,

    For research, check out any of the sites listed on the sticky at the top of this board.

    Also -- you might want to post to the spinal chord disorders board here at HealthBoards.com to see if the symptom rings true with the others who post.

    Finally, the mother should consider asking to be referred to a pediatric specialist who would know more about such an "abnormal normality."

     
    Old 08-05-2005, 04:44 AM   #3
    HelpBaby
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    Re: Baby With Lump on His Back

    Thank you for the advise. I will have her ask for a referral and see if she can get copies of the MRIs to bring with her. I have posted to the Spinal Cord Disorders Board and will check out the Stickys at the top.

     
    Old 08-05-2005, 06:24 AM   #4
    feelbad
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    Re: Baby With Lump on His Back

    Has this child been evaluated by a neurologist or better yet a neurosurgeon?You definitely need to go this route if they have not done so already.The parents deserve much better answers than abnormally normal.Geez.they DO need to get copies of all tests and then also request every bit of paperwork that has been generated so far at any docs offices ,labs,radiology and the hospitals.All of it.Then keep it all in one of those expanding files that they can take with them to every visit or in the case of some sort of an emergency situation it is something they can grab as they are going out the door and when they get to the hosp all the info the docs need is all right there.believe me, as the mother of a chronically ill child, this saves alot of hassle and alot of precious time.The best advice i can give here is to tell them to not give up and to keep pushing things with the docs until they get the answers they need.It is very easy to become intimidated by docs, espescially those wonderful specialists,but they need to remember that all of the docs are working for them,not the other way around.Sometimes they may have to get a little icky with the doctors in order to get things done, but they have to hang in there as there son is counting on them to find him the help he needs.Were they ever told about just what type of 'cysts" this child has?it appears that they really have not been given any answers at all.This is where getting the records will help alot.They can read the docs actual notes he made after the childs visits and see what the overall impression of the doc is about the childs condition.All they need to do really is just call the places that this child has been seen at and ask for a release of information to be sent out.This is just a form thats asks for dates seen(they don't have to be exact dates,just ask for everything that is in the childs file,everything.)and then they sign it and send it back and in from a few days to about a week, they will arrive in the mail.Then they need to keep doing the requests like every month or two depending how and where he has been seen and what was done.They only have to fill out that request once a year so the next time they need the records, they can just call the place and they will have them in a couple days,no more paperwork until the end of that year.

    These parents really do need to get an actual Dx for their child so they know just what the heck this is and what type of possible risks are involved.the spinal cord is nothing to mess with.i have some very significant damage to my cord caused by the surgical removal of what is called a cavernous hemangioma that was inside my cord.i am wondering if this may also be what was found furhter up in this childs spine area.This is where having that MRI report would come in quite handy,it would state in there just what the radiologist saw and his impression of just what he thinks it may be.there are so many things listed in the MRI reports that the docs just don't tell you about.when I started getting my reports(I have had like 8 seperate MRIs done on my spine over the past couple years)i found all kinds of very important info in them that my docs never bothered to tell me about.

    I hope this all helps some.please keep me posted.i am on the spinal cord disorder board as well and you can update me there if you want.I wish the parents lots of luck.**
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 08-05-2005, 03:08 PM   #5
    HelpBaby
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    Re: Baby With Lump on His Back

    You are so sweet! Thanks for the info. I have a daughter with chronic daily headaches and also found that demanding copies of everything has come in very handy down the road! I'm going to forward your suggestion onto Mom and see what she can do about getting the records. I was so shocked by the doctor(s) lack of answers to the parents! I know she asked about the leaking spinal fluid and was told, "All children have spinal fluid." Duhhh! They were just given a total runaround and it's not fair.

    Thank you for your reply.

     
    Old 08-06-2005, 03:52 AM   #6
    feelbad
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    Re: Baby With Lump on His Back

    Time to find FRESH docs with new ideas and ones that actually know how to talk to and relate to the parents of a sick child.Please keep me posted on the other thread you have in the spinal cord board,K?We are not supposed to get too chatty here.Marcia

     
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