Konrad
Forum Replies Created
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B. You have no idea how much I appreciate your reply and even effort to reach out to someone to ask if they can help. I’m speechless. Thank you d
We have tomorrow a regular Family Dr appointment to see what tests we can get and then we will do the rest with the relevant dr.
And will keep you posted
Thanks million for the support! At least we feel we have some guidance hand that we need it the most at this time as parents. Bless you and yours
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Thank you B. Every single info would be very helpful as we are lost on what to do and where to start. Doctors seem clueless and we have to do our own effort at the moment.
I attached Potassium and calcium and ionized calcium and other tests that we just received from hospital after his discharge. These were done during his 3 days stay.
Also, he has thyroid antibodies since few years but thyroid function is normal. Sometimes tsh comes around 3 or 4. Which I know it’s high but no symptoms of low thyroid.
My question is, would ANA come positive for those with autoimmune thyroid disease?
Because I know few people who have Hashimoto’s and one has Graves’ disease and their ANA is normal.
Is testing vitamin A for example done in clinics in Dubai? Also do you know any good Geneticist to recommend?
Any open minded Dr to work with?
Thank you million for every info B. Parents feel helpless when they feel they know more than doctors but have no clue where to start.
God bless you and yours
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Watched the first one and good call! We already started giving him glutathione
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I’ll check it thank you. But any quick hint on what it is the reason?
Nausea is much better tho.
Also B. Any sport medicine dr that you recommend here in Dubai?
Thank you
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Thank you B! You are exceptional and I appreciate all your effort.
Sorry I haven’t been around but I came to update you one more test was conducted yesterday and here are the results. All normal I guess and the nephrologist that we know in Germany asked us to redo the CK test after few weeks to see the base line and if normal this is good news as this can rule out anything related to birth muscle distrophy and we did it yesterday (1 month from the date of hospital admission) attached are the results and in two days neurologist appointment.
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And one more question B if you don’t mind. The neurologist requested muscles biopsy and the insurance refused because no relevant symptoms or any other test results. I want to ask if you think this is a good and safe test to conduct? We will do it out of pocket just not sure how safe is it.
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We are back to Dubai and will call Genomix tomorrow. But can you please tell me what should I ask for? I don’t know who they are and if it’s a clinic or what exactly. Thank you
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Thank you B for everything. Your support in this very stressful time is very appreciated. Even when you have your own as well. May his bless you and yours. Will be waiting to see if the dr will take the case. Thanks a lot
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Yes results so far are all fine.
Honestly CK went down at home faster than hospital with 2 L IV and 2 L water.
We gave him daily organic coconut water 500ml, 2 tabs Electrolytes from Trace minerals (attached is the content per 6 tablets) we weren’t sure how much safe dose to tube so we went by 2. Also Q10, magnesium, D3/k2, and cod liver oil. And mix low dose of A C E and zinc.
Dr did electro conduct muscle test. Not sure what is the name and apparently results are normal as the dr didn’t call but will see him in person next week.
Insurance didn’t approve muscles biopsy and the dr don’t see it’s needed.
Genetic testing will come soon but we are thinking first to see sport injury dr? Dunno if this is a good idea.
So far all drs assuming that Rhabdo first time was from intense workout plus dehydration which was the case while Devine time it was viral once groin followed by exercise before recovery.
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We just got the results. Doctor didn’t call or comment and waiting for appointment next week. Do you have any comment B? So we know what to ask at least. I am not sure if Aldolase is expected to be borderline after Rhabdo episode. Your thought will be much appreciated
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Some update B.
Here are some extra tests done. CK went down from 15000 to 400 something that was 3 days after discharge from hospital (a week ago)
Also ANA was done, anti CCP and Aldolase.
TSH and D
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Today we saw family medicine Dr from Germany she was very cooperative. She requested tsh to begin with and vitamin D, CK total and CK MB just to make sure heart is fine even though we told her in emergency my son had ECG and all fine.
Tomorrow Neuro appointment not sure what to expect. Will see.
Thank you B.
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I just want to make sure if those tests to see which muscles exactly is damaged, are they important? Will they change anything in terms of approach or treatment?
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Feeling supported alone is priceless at this stage. Thank you million
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Also, can you please tell me what is the difference between Dr Heather and Dr Sean Penny regarding approach? I’ve heard about them both but I don’t know who does what exactly. Hoping insurance will cover some things since it covers alternative medicine
