Hello Abbilou,
I do feel for you daughter, having all of those troubles at such a young age, she’s in no way had it easy. It’s unfortunate that getting a label for a condition leads you to believe that you are at the end of your journey but, in reality, it merely sets you out on the beginning of another journey, to find the root cause. The good news is that once you know what you are dealing with, you can manage it better.
I would ask if your daughter has had an MRI scan of her head and neck ? It seems to me that there’s every possibility, from the symptoms and diagnoses you describe, that she may have some level of raised intracranial pressure and I say this for 3 reasons.
The first reason is that any additional pressure on the pituitary gland (can cause an ’empty sella’, or ‘partially empty sella’) which can manifest in problems with various hormones, like growth hormone for instance, which you mention and you also mention problems escalating with the onset of puberty.
The second reason is, that this raised intracranial pressure can cause the brain to get pushed into a position that compromises it’s function, which could lead to some of the more psychological as well as physical malfunctions. I have heard many mothers on the various forums over the years complain about their childrens behaviour. They talk of hyperactivity, moodiness, anxiety, rage, indeed many extremes of behaviour.
The consequence of this pushing of the brain, is that sometimes, the lower part of the hind-brain, called the cerebellum (or to be more precise, the cerebellar tonsils) get forced into a tight squeeze with the brainstem, which in itself can cause the autonomic symptoms that your daughter suffers, the POTS.
So, if you have already had an MRI, I would be interested to see it, not just hear the report. If you haven’t had one, I would try and arrange one, to put you in a more informed starting position for finding a solution to your daughters problem.
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!