:confused: Hi all! My 8 yr. old daughter has quite a large lump on the top of her spine. It is hard, not moveable, doesn't hurt, and is not quite centered. It measures 2 in. x 2 1/2 in. (or more)in size. It is quite noticeable, especially when she puts her chin to her chest. The lump has been there for about 2 months and the first time it was checked, our nurse practioner said it may be a fat pad. When she had to go back for her yearly physical (2 weeks later) our NP said she needs to be seen by a ortho surgeon. She said it has something to do with her spine. She has always complained about leg and joint pain. She was also seen by a ortho surgeon when she was about 16 months old because she limped for about 3 months. The ortho xrayed from her hips to her ankles to check for hip displasia (sp?), spina bifida and some other things, but he said everything looked fine. Could you give me any insight on what this lump could be? Have you ever heard of anything like it? Thanks so much in advance for any info any of you can give me. Natalie

I am rather suprised that they haven't delved into this much further by now,given the past symptoms and the sudden appearance of a lump on the spine.Any sudden appearance of any kind of lump anywhere on the body needs to really be evaluated in depth.I would ask to be referred to a neurosurgeon for this eval,and not a neurologist.the NSs seem to be a little bit more knowlegdeable when dealing with spinal issues.at the very least, she needs to have an MRI done to see just what this lump consists of.is it some sort of tissue? a bone overgrowth? you need to get this defined so if she needs some sort of treatment, it can be started now rather then whenever the ortho decides to get his *** moving.it should not be taking THIS long to get simple answers.i hope things turn out to be nothing serious.Please keep us posted,K?Marcia

Thanks for your replies! She has an appointment on the 30th with the ortho. I tried to get her in sooner but they have no other openings, if one comes available they will call me. I just hate waiting so long, it seems to be getting bigger and is not painful for her at all. I'm just wondering if it could be scoliosis (runs in the family, my sister and cousin) or something with her vertebra in her cervical spine. I'll keep you all up to date. Thanks again. Natalie

Anyone else have any ideas on what this could be? Thanks Natalie

Update! My daughter was seen by an ortopedic surgeon on 12/30. He xrayed her entire spine and kidney's. He said they were fine (no scoliosis) and that he wanted a blood test to check her cortisol level. I asked him why and he said that the lump could be a "buffalo hump" and is checking her for Cushings' disease. I have not received any results yet. Anyone have any info on this disease? Thanks for your time! Natalie

Jayce

Cushing's syndrome is a hormonal disorder caused by prolonged exposure of the body's tissues to high levels of the hormone cortisol. Sometimes called "hypercortisolism," it is relatively rare and most commonly affects adults aged 20 to 50. An estimated 10 to 15 of every million people are affected each year.

Symptoms vary, but most people have upper body obesity, rounded face, increased fat around the neck, and thinning arms and legs. Children tend to be obese with slowed growth rates.
Other symptoms appear in the skin, which becomes fragile and thin. It bruises easily and heals poorly. Purplish pink stretch marks may appear on the abdomen, thighs, buttocks, arms and breasts. The bones are weakened, and routine activities such as bending, lifting or rising from a chair may lead to backaches, rib and spinal column fractures.

Most people have severe fatigue, weak muscles, high blood pressure and high blood sugar. Irritability, anxiety and depression are common.

Women usually have excess hair growth on their faces, necks, chests, abdomens, and thighs. Their menstrual periods may become irregular or stop.

Does you daugher suffer asthma or any other ailment that she takes medication for on a regular basis? Certain medications can have an effect on the bodies cortisol levels. I wish I could post a website for you but it is against the rules here. The thing that really stinks is when you do a random search on the internet you will usually get sites about cushings in dogs/cats/horses!

I pray that your daughter is well and this situation resolved quickly.

Sarah

Thanks for the info Sarah! No, my daughter does not have asthma nor is she on any medications. Her symptoms are: buffalo hump, thin skin (can see every vein in her body, they are very close to the surface), has always had traces of blood in her urine, she is a blonde and now has black hairs that are coarse and wirey feeling throughout her hair, stretch marks on her thighs, moon face, leg pains since she was little (limped for a long time <3 months> when she was about 13 months old) and very sensitive to hot and cold weather. I would like to know what the hair thing is all about. Any suggestions? Thanks again! Natalie

Natalie

Cushings is often caused by a tumor on the pituitary gland(most often benign/non-cancerous) or the adrenal glands. Often these tumors put pressure on the pituitary or adrenal glands and stimulate over production of ACTH (hormone). Any hormonal imbalance often leads to other hormone imbalances like to much testosterone, estrogen etc etc or not enough of one or the other and this can effect hair growth, color, thickness. The hair growth most women with Cushing's encounter is excess on arms, chest, breasts, stomach, face. Since your daughter is so young maybe (if Cushing's is the issue she has) it hasn't affected her yet except for her head. I don't think at this point there is really anything you can do about the hair, at least not to change it. If she has other hair growth issues that cause discomfort or embarrassment there are several hair removal products you can use. I personally suggest Nad's. I use it for legs and love it. Of course for a young girl this might be painful. If Cushing's is diagnosed it appears that once a successul treatment is completed and hormones are balanced (either artificially or naturally) these side effects should cease.

MRI's are usually done to check for tumor but blood work is done first on cortisol levels and two other things I am not sure what they are. I do believe from my reading that these tumors can be removed with a very successful treatment rate. Sometimes they follow it with a radiation. I do believe that sometimes treatment with steroids may preceed surgery.

I am praying all this information is not relevant to your daughter and by the time you receive this message Cushing's has been ruled out.

Sarah

Thanks again Sarah for your reply. I forgot to mention that my daughter is overweight (about 103 lbs). She has a large upper body and gets red marks (maybe acne) on her face that lasts for 1 or 2 days and then pops up elsewhere on her face. I have been reading a little about Cushing's and they say to do the testing first thing in the morning. The doc didn't do her blood work until 11 a.m. Do you think this will make a difference in the results? I haven't heard anything on her results yet, I called and they said he was dictating a letter to me (that was a week ago!!!). Talk to you soon! :) Natalie

I am not sure about the blood work and time. I am more familiar with the urine cortisol test where they collect all the urine expelled throughout the day and test the cortisol levels. But maybe first they are taking some basic readings of several different minerals, hormones, etc in her body.
Is the doctor a pediatrician or general practitioner? Having dealt with endocrine problems myself I would personally suggest getting a referral to a endocrinologist as soon as possible (if a referral is needed). Cushing's is a very complicated disease and hormones a very sensitive thing in our bodies. An endocrinologist specializes in this and will know best. Maybe his "letter" is a referral? One would hope it would of been delivered to you a little more promptly :mad:


Sarah
My Motto, "I am my own best advocate"

Hi Sarah! I've been trying to look up the "hair color thing" she has going on, but I'm not having any luck! You said is has something to do with the hormones? Did you find it somewhere on the net? Let me know. :) I still have not heard a thing from the doctor. Oh, by the way she saw an orthopedic surgeon who is highly recommended. The day we went to see him he said "after all these years and the problems and specialists she has been to we will find out what is going on with her." She has been to him, a cardiologist, allergist, dietician, pediatric urologist, and of course her regular pediatrician. Hopefully, he will help us. Also, when she saw her cardiologist in December, she said that my daughters' tonsils and adnoids are enlarged! UGH!!! Just another specialist! Hope to talk to you soon!!! Natalie

Hi Natalie

I am glad to hear you are with a doctor who WANTS to find the problem. I personally have encountered doctors who I felt didn't really care if they ever figured out what was going on with my body! It is so good when you are with a doctor who cares!

About the hormones. Yes I have read this on different sites (can't mention them here;against board rules) and in books. Cushing's is an endocrine disorder and even though the hormone that in excess (cortisol) causes Cushing's doesn't directly cause changes in body hair it messes with the hormones that do effect hair.

So now you are onto the ENT too for her tonsils and adenoids!! WOW You are a super mom, I am so sure. All the frustration I am sure you have gone through and you keep plugging along.

Because I have a hormonal disorder myself when I initially read your post it just struck me so hard. Maybe this is weird but I think of this little 8 yr old girl that I don't even know quite often and truly pray that this is resolved.

All the best to you,
Sarah

Hi Sarah! Update! I received my daughter's cortisol blood work results today! Her level at 11 a.m. was 3.7. He wrote that is was not high at all. He also said "it is in fact in the lower normal range" whatever that means. Do you know what the normal cortisol levels are supposed to be in an 8 year old? I tried to look it up, but it says normal is usually 6-22. If that's the case then her's is very low. Thanks again Natalie

The normal range depends on the brand of test the lab uses. It could very well be in the normal range on the test that your specific lab uses. My understanding with the cortisol test is that it should be tested using urine that is collected over a 24 hour period. So each time one needs to go they store it in a fresh container and every container used in the day goes to the lab. I also don't know what kind of levels are normal for kids (>50-100 micrograms in adults is cushings) as I have only really ever been able to find info on adults and cushings and though the symptoms are the same I doubt the levels of cortisol are.

I read too much! I read about something called Metabolic Syndrome-X. I guess it has symptoms much like cushings but normal cortisol leves.

Sarah

Oh I also read that cortisol is normally secreted in different amounts during the day and night. It said that several times the test should be performed to try to eliminate the variable. It also said this normal variability is why simply checking the amount of cortisol in the blood is not a very reliable test. I wonder if you can insist on the urine cortisol check?

Hi Sarah! My daughter's doctor called the other night (10:08 PM!). We are off to see her cardiologist on Feb. 16th.for a follow up from December. She said the cardiologist can give me a referrel to the ear, nose and throat doctor. She also wants my daughter to see a pediatric endocrinologist. Do you know of any in the Utica/Albany NY areas? If you do let me know. Thanks again. Natalie