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Primary hyperoxaluria TYPE1

I HAVE A 6 YEAR OLD BOY WHO IS DIAGNOSED AS Primary hyperoxaluria TYPE1.
Dr says he has problem with liver as it is not producing a enzyme called AGXT which breaks down oxalate. His production of oxalate is quite high which is resulting kidney stones in his both the kidneys. His stones are recently removed by shock wave therepy. Please advice if there are any medicine which can help him to reduce his oxalate production.Thanks for your help.
 
  ab de on 2015-05-20
This is just a forum. Assume posts are not from medical professionals.
Please provide all information about your son based on following guidelines..

-Pains and sensations at specific locations

-modalities of the pains and sufferings

- personality and behavior peculiarities of your son

-his cravings in food, aversions and food that disorders his system

-his fears and dreams

-general symptoms like thermal preferences, stool, urine, appetite, thirst and sleep
[message edited by rishimba on Wed, 20 May 2015 04:15:45 UTC]
 
rishimba 8 years ago
1. No pains or sensation, little pain while passing the stone after surgery ( which he has finished passing)
2. Love to eat fruits and vegetables
3.Fear - only for his surgeries
4. Dreams: sound sleeper with few dream in a month where he talks.
5.stool: normal once a day but smelly.
6. Urinate : very often as he drinks 2 ltr of water daily.
7. Appetite is not so good , I would say at least one meal a day he eats properly.
8. Thirst is normal
 
ab de 8 years ago
This information is not adequate. Constitutional treatment may regularize his liver and consequently production of calculi in the kidney will be stopped.

If you agree, I will post a questionnaire for you to answer on his behalf.
 
rishimba 8 years ago
Yes Please.
Thank you so much for your help.
 
ab de 8 years ago
Patient ID: Sex: Age: Nature of work: Habits:


Please answer the following questions in a descriptive manner after careful analysis and recollection of previous experience and happenings.

1. Describe your main suffering? State the correct location of pain or suffering.

2. What other physical sufferings do you have in your body?

3. What mental sufferings / feelings do you have associated with your physical sufferings?

4. What exactly do you feel when you are at your worst? Describe the sensation in your own words.

5. When did it all start? Can you connect it to any past event or disease? What was happening in your life just before these symptoms were noticed?

6. What time of the day do you suffer the most? What time of the day /night do you feel most energetic and happy?

7. What are the things that aggravate your suffering and those that ameliorate the same? Example: time, hot or cold application, pressure, rubbing, washing, eating, tight clothing, sweating, walking, climbing, stool etc.

8. Do you think your sufferings have direct relation to any particular external factor or are it something to do with your own biological changes?
9. When do you feel better, during hot weather or cold weather, humid or dry weather?

10. Describe your general mental set up? Please pick out the adjectives which best describe your personality; (at least 10)
Nervous, Anxious, Shy, Worrying, Paranoid, Proud, Unsocial, Guilty, Depressed, Hypochondriac, Untidy, Weepy, Emotional, Impractical, Confused, Suspicious, Jealous, Timid, Aggressive, Headstrong, Forgetful, Follower, Insecure, Immature, Impulsive, Rigid, Restless, Feminine, Empathetic, Introverted.

- How do you feel before or during a thunderstorm?

- How do you respond to consolation during your tough times?

- Are you sensitive to external stimuli like smell, noise, light etc.?

- Do you have any typical habit or gesture like nail biting, causeless
Weeping, talking to one self etc?
- How do you get along with your friends, family, your children and especially your husband / wife?
-What is your profession? Do you love your profession? What is your dream job?
-Did you have any bereavement in life? How has it affected you?
-Do you have any issues regarding your parenting by guardians?
-Can you remember any unfortunate incident in life that you want to forget?
-How do you respond to music? Do you feel better or worse mentally listening to music?
- What upsets you most in yourself and in others?

11. What are your fears and do you dream of any situation repeatedly?

12. What do you crave in food items and what are your aversions?

13. How is your thirst: Less, Normal or Excessive?

14. How is your hunger: Less, Normal or Excessive?

15. Is there any kind of food which your body can’t stand?

16. Is your sweat normal or less or more? Where does it sweat more: Head, Trunk or Limbs?

17. How is your bowel movement and stool type? Do you have any abnormal smell in the urine?

18. How well do you sleep? Do you have a particular posture of sleeping?

19. Do you think you are able to address your libido in general? Would you say your drive is low, normal or high?

20. Do you have any strange, peculiar or unusual sensation, thoughts or feelings? How are you different from others?

21. What medications have been taken earlier by you to treat the diseases and do you have any particular symptom surfacing after the medication?

22. What major diseases have run in the family in the last two generations both sides?

23. Describe your overall appearance with respect to your BMI, skin type, muscular or flabby etc.
24. What major diseases have you had in your life and when. Please write them in a chronological manner.
 
rishimba 8 years ago
1. Describe your main suffering? State the correct location of pain or suffering.
Having stones in both the kidneys due to the over production of oxalate. But had his surgery done for right kidney and stones have been removed. and scheduled surgery for his left kidney. He has blood in his urine in June2014 and had his all test done and found that he is suffering from this Primary Hyperoxcluria.

2. What other physical sufferings do you have in your body?
none

3. What mental sufferings / feelings do you have associated with your physical sufferings?
He is a happy active child and aware of his kidney stones. He is scared to have surgery.


4. What exactly do you feel when you are at your worst? Describe the sensation in your own words.
He cries and doesn't listen.

5. When did it all start? Can you connect it to any past event or disease? What was happening in your life just before these symptoms were noticed?
He loves to eat all juicy fruits and salad like cucumber, lettuce , tomatoes, pepper. He was drinking lots of water before we know about the disease and also in the middle of the night, that too in cold weather, so went to see the doctor and nothing came except for small trace of blood in his urine. Dr advised to do in again the urine test in April 2014 but nothing was found. Then again in June 2014 the blood was of tea colour from his urine and all the test was done after that and we found that he had Primary Hyperoxculria.

What time of the day do you suffer the most? What time of the day /night do you feel most energetic and happy?
He is happy and energitic most of the day.

7. What are the things that aggravate your suffering and those that ameliorate the same? Example: time, hot or cold application, pressure, rubbing, washing, eating, tight clothing, sweating, walking, climbing, stool etc.
Nothing

8. Do you think your sufferings have direct relation to any particular external factor or are it something to do with your own biological changes?
His Grand dad's brother had kidney stones and he had his surgery done only once to take them out. He is 72 years old and had pain 2 more times in his lifetime.

9. When do you feel better, during hot weather or cold weather, humid or dry weather?
He likes to be in warm places.


10. Describe your general mental set up? Please pick out the adjectives which best describe your personality; (at least 10)
Nervous, Anxious, Shy, Worrying, Paranoid, Proud, Unsocial, Guilty, Depressed, Hypochondriac, Untidy, Weepy, Emotional, Impractical, Confused, Suspicious, Jealous, Timid, Aggressive, Headstrong, Forgetful, Follower, Insecure, Immature, Impulsive, Rigid, Restless, Feminine, Empathetic, Introverted.
Happy

- How do you feel before or during a thunderstorm?
Cool. He is not afraid.

- How do you respond to consolation during your tough times?
talking and hugging.

- Are you sensitive to external stimuli like smell, noise, light etc.?
Not really

- Do you have any typical habit or gesture like nail biting, causeless
Weeping, talking to one self etc?
Yes he eats his nail. He likes to talk all the time.

- How do you get along with your friends, family, your children and especially your husband / wife?
Pretty well


-What is your profession? Do you love your profession? What is your dream job?
He is 6 year old. He wants to be a Doctor.

-Did you have any bereavement in life? How has it affected you?
no

-Do you have any issues regarding your parenting by guardians?
no

-Can you remember any unfortunate incident in life that you want to forget?
surgery

-How do you respond to music? Do you feel better or worse mentally listening to music?
He start singing with it and looks happy.

- What upsets you most in yourself and in others?
When mummy shouts at me.


11. What are your fears and do you dream of any situation repeatedly?
Dark

12. What do you crave in food items and what are your aversions?
Watermelon, cucumber and lettuce

13. How is your thirst: Less, Normal or Excessive?
Normal

14. How is your hunger: Less, Normal or Excessive?
Less

15. Is there any kind of food which your body can’t stand?
I don't know

16. Is your sweat normal or less or more? Where does it sweat more: Head, Trunk or Limbs?
Normal on head

17. How is your bowel movement and stool type? Do you have any abnormal smell in the urine?
Normal. No smell in urine

18. How well do you sleep? Do you have a particular posture of sleeping?
Sleeps well , just moves around the bed. sleeps most of the time on Sides.

19. Do you think you are able to address your libido in general? Would you say your drive is low, normal or high?
Not known

20. Do you have any strange, peculiar or unusual sensation, thoughts or feelings? How are you different from others?
He feels he is in dream.

21. What medications have been taken earlier by you to treat the diseases and do you have any particular symptom surfacing after the medication?
Alopathic: Vitamin B6, Potassium Citrate citric acid solution, Pos Nak
Homepathic: Cinchona Official 30

22. What major diseases have run in the family in the last two generations both sides?
Blood Pressure, Sarcodosis, and kidney cyst.

23. Describe your overall appearance with respect to your BMI, skin type, muscular or flabby etc.
Age -6
Weight 20 kg
Height - 46inc
colour- fair
body type - skiny

24. What major diseases have you had in your life and when. Please write them in a chronological manner.
Nothing except Primary Hyperoxcluria
 
ab de 8 years ago
When he is about to pass a kidney stone, does he cry before or after urinating?
 
rishimba 8 years ago

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