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Dr. Andrew Rynne
MD
Dr. Andrew Rynne

Family Physician

Exp 50 years

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What Is The Long-term Prognosis For Tuberous Sclerosis?

my 16 month old daughter is suffering from tubersclerosis (subependymal nodules) symtoms seems to be mild.she had seziures only once though very mild. lasted for about approximately 45 to 50 secs. can she be cured by any ayurvedic treatment or pranayam when she will grow up? let me kindly know the long term prognosis also
Thu, 25 Aug 2016
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Diabetologist 's  Response
Hi
I am Dr Mittal.
I have read your query.

First, I would like you to clarify whether the diagnosis in question is tuberous sclerosis, or tuberculosis. They are two very different conditions with different set of investigations and treatment. Having read the symptoms, I think it is most likely tuberculosis and I will respond as such. Why I feel that this may not be tuberous sclerosis is because this disease is a genetic disease with mental retardation and other affects eg effects on kidneys. Besides, I would like to know how was the child diagnosed to have the tuberous sclerosis. Since your question does not specify any of these additional factors that are present in a patient with tuberous sclerosis, I would like to consider a treatable cause like tuberculosis also. The cortical lesions that you have mentioned could be tuberculomas as well.

For tuberculosis, ayurveda, yoga, pranayam, homeopathy and naturopathy are not going to help. She needs to be initiated on antitubercular therapy such as isoniazid, rifampicin, pyrizinamide, and ethambutol. These medicines need to be initiated by a allopathic pediatrician in a 16 month old child. The drugs and the blood reports will be needed to be checked regularly.

Again, she will also need antiepileptic medicines temporarily since those nodules are causing her to have seizures. Again, the other systems of medicines are unlikely to help her. Again, she needs to meet a allopathic pediatrician to initiate the medicines and monitor the drug levels and the blood variation that may follow these medicines.


If the child indeed has tuberous sclerosis, the prognosis is not too good as there is no definitive treatment in any system of medicine. A few medicines like everolimus have now been recommended, but very few doctors are trained enough to give the medicine. You will need to meet a rheumatologist as well as a pediatrician in such a case so that they can moderate the dose oth the medicine and give it a try if you like.

Over long term, if treated in time, the child may be cured and therefore I request you to take the child to a pediatrician as soon as possible for consideration of treatment of at least seizures and if possible the 2 possible diagnosis that we have discussed above.

Please note, that I have no access to the scans that have been done for the child. Seizures should be treated urgently, whether due to tuberous sclerosis or due to tuberculosis or any other problem. So visiting a pediatrician is essential.
Best of luck, Dr Mittal
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What Is The Long-term Prognosis For Tuberous Sclerosis?

Hi I am Dr Mittal. I have read your query. First, I would like you to clarify whether the diagnosis in question is tuberous sclerosis, or tuberculosis. They are two very different conditions with different set of investigations and treatment. Having read the symptoms, I think it is most likely tuberculosis and I will respond as such. Why I feel that this may not be tuberous sclerosis is because this disease is a genetic disease with mental retardation and other affects eg effects on kidneys. Besides, I would like to know how was the child diagnosed to have the tuberous sclerosis. Since your question does not specify any of these additional factors that are present in a patient with tuberous sclerosis, I would like to consider a treatable cause like tuberculosis also. The cortical lesions that you have mentioned could be tuberculomas as well. For tuberculosis, ayurveda, yoga, pranayam, homeopathy and naturopathy are not going to help. She needs to be initiated on antitubercular therapy such as isoniazid, rifampicin, pyrizinamide, and ethambutol. These medicines need to be initiated by a allopathic pediatrician in a 16 month old child. The drugs and the blood reports will be needed to be checked regularly. Again, she will also need antiepileptic medicines temporarily since those nodules are causing her to have seizures. Again, the other systems of medicines are unlikely to help her. Again, she needs to meet a allopathic pediatrician to initiate the medicines and monitor the drug levels and the blood variation that may follow these medicines. If the child indeed has tuberous sclerosis, the prognosis is not too good as there is no definitive treatment in any system of medicine. A few medicines like everolimus have now been recommended, but very few doctors are trained enough to give the medicine. You will need to meet a rheumatologist as well as a pediatrician in such a case so that they can moderate the dose oth the medicine and give it a try if you like. Over long term, if treated in time, the child may be cured and therefore I request you to take the child to a pediatrician as soon as possible for consideration of treatment of at least seizures and if possible the 2 possible diagnosis that we have discussed above. Please note, that I have no access to the scans that have been done for the child. Seizures should be treated urgently, whether due to tuberous sclerosis or due to tuberculosis or any other problem. So visiting a pediatrician is essential. Best of luck, Dr Mittal