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Upper back and neck burning, headaches, dizziness, brain MRI, spine MRI, allergy to sun and heat

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5 year old girl, suffers with upper back burning only when in heat or under sun, now its accompanied with headache and slight dizziness and today its a combination of both BUT now she complains that the front of her neck hurts. Brain MRI done, nothing found. We have yet to schedule SPINE MRI. She shows severe allergy to heat and sun. Result in Burning Back, not pain, just Severe Burning. I reside in XXXXXXX New York, Maimonides Childrens Specialty Clinic is where she is beginning her testings. Should I ask for a certain type of Specialists instead of her just seeing so many different doctors. She has already seen a Neurologist for the Brain MRI, she has seen an ALLERGIST and she sees her regular Pediatrician whom is lost at this point with her condition. At this time the advise is NOT to let her go in the SUN until they can figure out what it is! Alternative Doctor in PA heard of her condition and said it may be HORMONAL. What type of specialist should she see NOW.
Mon, 1 Oct 2012 in Child Health
Answered by Dr. Santosh Kondekar 11 hours later

Please do not panic. I can understand the situation you are going through. Its really pity for the 5 year old going through the trouble.

This a classical medical description of what we call as photosensitivity. Often seen in rheumatic illnesses like say lupus and lupus like illnesses with or without rash. There is a 13 point ARA criteria that doctors use to confirm lupus.

Brain/spine MRI cant give clues in such situation as it has nothing to do with brain issues.

Allergy like symptoms or hives may be often associated with inherent atopic tendency which your allergy specialist must have discussed with you. They usually advice skin testing which need not yield any positive report. But often these kids may have higher eosinophil counts and higher IgE levels.

When you say all reports are normal, I cant get anything as every doctor has different issue to look for in the report, so grossly report may be issued as normal but a clear judgement is possible only when a person looks at each details of the report.

If you have some choice, ask for a pediatric rheumatologist and pediatric atopy specialist in addition to basic XXXXXXX pediatrician.

Currently the therapy may just go around with using sunscreens on a daily basis, but a complete rheumatic workup, complete atopy work up and a skin biopsy may help to decide a final plan.
You may discuss the same with your specialist with a print out.

Hope this answers your query. In case of any doubts, I am available for the follow ups.
Above answer was peer-reviewed by
Follow-up: Upper back and neck burning, headaches, dizziness, brain MRI, spine MRI, allergy to sun and heat 2 hours later
Thank you as this is the most information we have ever gotten in the past two years of trying to figure out what is happening with our little girl. This sheds amazing light on our 5 year olds condition. We are just starting the process with doctors and it is still in LIMBO but to bring further detail and information to YOU on this: She is starting to lose a great deal of hair, she definitely hives but only in the bottom back of her legs, she experiences fatigue during these heat/sun allergy attacks, the attacks come within minutes of exposure to the sun/heat: For Example: we walk 4 blocks home from her school, she starts crying and screaming of burning in her upper back by the second block only when it is hot and the sun is beaming strongly. She has gained a substantial amount of weight and she is breathing heavy. We assume that it is from the weight gain but now we imagine it can be a combination of things. I believe that ONE of the tests you mentioned in the blood work up advise is about to be done on XXXXXXX 18th. We are going to print this out, we will seek these specialists that you mentioned as it makes more sense to do so with what is happening to her. Up to now we keep her indoors and cool all of the time and when we can't we do our best to shade her and console her during an attack. This part is the hardest! It has effected her in many ways. My final question at this point, Is this condition CURABLE?
Answered by Dr. Santosh Kondekar 1 hour later

Good to hear from your again.

Well XXXXXXX its not easy for me to answer your question in just few hours when she is suffering from more than a year and I don't have any reports available nor I have examined her. Situation can be totally different at the other end as my information to you is only based on the facts you provided to me in a single query.

But whatever info I have right now, I may say that it isn't life threatening at this stage, disease is modifiable and may be curable. Don't lose hopes.

Try her out once with the sunscreen (if she isnt allergic to it) on for a short while see if she can tolerate. Discuss with your doctor regarding steroid local creams, at times all these issues can be worsened or improved by oral steroids which may be life saving at times.

You can write the reports here or can mail me the reports to YYYY@YYYY with subject:ATTN:Dr Santosh Kondekar. This will help me in suggesting you better.

Please do confirm the sending of the mail by writing here, so that I can reply you back at the earliest.

Hope this answers your query. And I am awaiting for the reports.
Above answer was peer-reviewed by
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