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Appointment Friday. What should we ask the doctor?
Hi all! Our last pediatrician told us that Rebecca (3 years old) has Alopiecia. His comment was that she will probably "grow out of it". At first I took that as an answer but as I have read on these boards and on other websites that is not neccesarily the case. Due to insurance we are switching doctors so I am going to be starting from square one with a new doctor. I plan to go in with a list of requests for testing and would like to know what I should be asking....I was looking at some of the discussion boards and so far my list is as follows:
Blood Test for Hormones, Thyroid, Vitamin deficiencies
Autoimmune Diseases
Biopsy of Head for assessment of presense of excessive white blood cells
Allergy Testing for Milk/Dairy, Shell fish, Soy, Gluttens etc.
Is there anything I am missing from this list?
Blood Test for Hormones, Thyroid, Vitamin deficiencies
Autoimmune Diseases
Biopsy of Head for assessment of presense of excessive white blood cells
Allergy Testing for Milk/Dairy, Shell fish, Soy, Gluttens etc.
Is there anything I am missing from this list?
Replies to This Discussion
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Permalink Reply by rez namra on
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Make sure its full thyroid panel, what they usually do is just test thyroid function, make sure you get full thyroid panel checked, which incluse T3 and T4, get the Thyroid Antibodies checked as well.
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Permalink Reply by Lara (Becca's Mom) on
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What other symptoms might be present on a Thyroid issue? I may sound really nieve here but is seems like Rebecca's only visible symptoms is the hair loss so I am trying to figure out what else I am missing to tell the doctor.
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I am not sure of the full list of the symptoms, but they do have linkage with hair loss.
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ask for ANA test (anti nuclear) good luck !
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Permalink Reply by BaldGirlsDoLunch.org on
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As a parent you want to cover all the bases and be fully informed. I suggest finding the most knowledgeable pediatric dermatologist in your area and leaving it up to the competence of that individual.
Having a new diagnosis in our own child is very challeging and worrisome to say the least. It's disappointing to hear this, but these are the facts: there are no tests that can tell you anything about the onset, course, duration , type, frequency or propensity to develop any form of alopecia areata. As a parent you want to do something and when a physican says wait it out it's hard to hear. But that is the standard approach. Physicians are not being callous when they say this. The truth is that there are very few effective things anyone can do to treat this condition. Some things work in some people some of the time. There are even fewer things to try on a child.
Taking tests just spends money unnecessarily and does not provide any useful information. Additionally, the trauma of subjecting a toddler to unnecessary blood tests is something I'd strongly discourage.
I know this is not the type of answer you were expecting.
My blog at www.baldgirlsdolunch.org posts the most recent updates to research studies from around the world. If something is tried and the results are published, I will post it there with a link to the publication regardless of the results of the study or how much hype preceded the funding for the study. Equal opportunity reporting.
Thea, founder
www.BaldGirlsDoLunch.org
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Thea, Although your post is discouraging I prefer the direct approach. I know specifically I do want to check into the food allergies just because I believe we may have a dairy issue due to our past history. I am not sure I need to be concerned about the vitamin deficiencies because we recently had blood work done to fulfill the requirement for WIC. I think that was mainly for anemia but she was perfectly fine. The biopsy to test for the presence of excessive white blood cells seems like a normal first step right? Isn't the whole point is to detect the auto immune disorder before you can begin to determine if there is a suitable treatment?
What is ANA (anti nuclear)?
-Lara
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She is probably right about what she said, but i would still insist for getting every thing checked. Alopecia might not be diagnosable, but all those blood tests would tell you if there is anything else wrong with your baby, there could be something in the tests, which if gets cured, the alopecia might get reversed! just my two cents.
If he was older, i would have considered taking him to a psychologist as well, as i can tell how bad it feels to be hit by this disease.
Alopecia has made me hate the GOVTs and War mongers and terrorists and people who support them, i really despise them now. Being in this condition and knowing there is no cure to it, is not a great feeling. Imagine if all that money, resources and combined brain, spent on science, humanity and medicine etc, we would have a cure for this disease long ago and many other critical diseases.
These war mongers are not only killing each other, but also killing us. I demand world peace and all the resources spent on betterment of this world. I shall blog about i guess.
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The notions to biopsy a child and do tests that do not provide any use for diagnosing or treating alopecia seem to me misguided; though I know absolutely and without a doubt that you have only the best intentions for your child. The role of a work-up is to rule out a serious but treatable cause of hair loss.The diagnosis of alopecia areata is fairly clear cut based on history and observation.
You can ask someone to do tests and sometimes eventually you can even wear down the resolve of the most stellar and ethical doctor to do what you ask, but it's not medically of any value.
With the current state of knowledge, it's of no difference how many white blood cells can be seen under a microscope. There's nothing a qualified clinician would do any differently for having seen them. There are standard treatments that are appropriate to be tried on children, but sadly they are few.
You'll want to be cautious not to shop around from doctor to doctor (unless you were an adult seeking a specific treatment that only some clinicians do.) Because eventually you might find one who's a wee bit " outside the system" who has all kinds of lotions, potions and pills to give your child that lead to a whole host of potentially harmful yet avoidable side effects.
With hair loss there are always people more than ready and willing to take our money to bring about a "cure" . And when alopecia spontaneously goes away on its own ( as it can ) the potion pusher says, " see! my stuff worked."
Thea
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Permalink Reply by Pradha on
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Lara,
Testing thyoid function and ANA (which is to check for other autoimmune disorders) were the first things my pediatirician recommended when I brought the hair loss to her attention. So, I don't think it would be an out of the ordinary request. She wouldn't even refer us to dermatology until after these tests were run. The blood draw that was done, was actually less traumatizing to my daughter than the immunizations that she is required to get, and would have been well worth diagnosing a thyroid issue which could have been treated. Both of those tests were negative in our case, but at least that's another thing I can cross off my worry list. It also seems that if you have concerns about allergies, that even without the alopecia, that would be worth looking into. After all, only good could come from eliminating foods that are harming our children :) Best of luck with your appointment
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Permalink Reply by MiNAH on
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Thea said it all in a "NUT SHELL" and there is nothing more distressing than seeing your child with any ailment.
Yet, be so very blessed that this is not cancer or any childhood disease that causes your child great suffering.
Yes there is emotional suffering if we don't learn how to adjust to change, opinion, judgment from others negative impressions on how we must or must not be...or live.
To build our self worth and self esteem.
I along with so many of other people have had Alopecia Areata, Totalis and Universalis since childhood.
We to have gone through the total spectrum of testing.Blood work, biopsies, injections and medications way to harsh for any child to be subjected to.
The upset from parents can be even more damaging in the end than the hair loss itself.
Meaning, family and friends can do so much more damage because of their conditioning.
Societies insecurity carries forward, thus indirectly can and will affect your child.
SO YOU HAVE TO BE EXTRA STRONG FOR ANY MEMBER WHO HAS LOST THEIR CONFIDENCE.
I have had Alopecia now for 39 years, and there isn't a day that goes by where I'm free of self imprisonment.
Society has so much to answer for this, as there is so much ignorance and lack of education awareness.
Although I face my fears, loss, pain and insecurity...I too wish nothing more than the rest of us for there to be an answer or cure.
In the mean time, we must find ways to rebuild our thought pattern, self image and coping skills.
As I have written on my blog:
Where is it written that hair is the right way, simply because conditioning and society says so.
If you feel the need to explore all possibilities and can comfortably rule out any other immune illness such as thyroid, lupus, sjogrens syndrome...then you should be comforted with that thought for at least you tried.
Then in the end, when you have gone through the Allergy Testing and still no change...you will come to accept that there is absolutely nothing any of us can do to change our Loss of Hair...young or old.
I had done it all and who knows if the injections helped a little.
Yet after the cortisone injections I became very ill, so there are many theories.
Chronic Fatigue, Fibromyalgia, Muscle Atrophy to name a few.
I personally would question steroid injections on my child's scalp.
It only gave me some hair growth which looks like male pattern baldness!
Don't play with health if the outcome could be potentially debilitating.
Good Luck and once again...Thea has given you some vital information to think about.
Mina
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Permalink Reply by Dielle on
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I now somebody else already said to do a full thyroid panel but they left off the free T-3 and T-4. I would suggest going to a pediatric endocrinologist because they use a tighter range and are less likely to jump on the treatment bandwagon (which can be bad if they don't need it, speaking from personal experience).
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Dom, there is a difference between Faith and Logic, science doesn't believe in Faith, yet it still exists. According to modern science, alopecia is not cureable, i would say its cureable, its just that modern science doesn't know it yet.
I agree, those tests might come blank, but they might pick any other disease, which might have some connection to alopecia or some other critical thing.
I think all these tests and treatments sell hope, and to some people this hope might give them a purpose to live. In my case, when i sart to get hopeless, i start thinking like a suicidal. Not all of us are strong enough.
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