At 9 1/2 my daughter complained of blurred vision when trying to focus on small print. Shortly after, she developed severe biological depression, which unfortunately was treated with Zoloft without realizing she had Central (hypothalamic) hypothyroidism. The blurred vision turned out to be due to far-sightedness, and when trying to focus up close, the left eye drifted to the left. This is corrected with prismatic reading glasses.
About 6 months later, while on a relatively low dose of Zoloft and nothing else, she developed a sudden partial color (green) vision loss in that same left eye. JUST that eye. The opthlamologist at the time thought perhaps the Zoloft caused this. A neuro-opthalmologist said she did not think it was due to the Zoloft, nor due to mitochondrial dysfunction (my daughter has not been evaluated for that). Also, did not think this was due to nutritional deficiency (due to intestinal malabsorption). However, she stated she really just doesn't know. Hence, it remains "idiopathic".
Background: Allergies. Diagnosed with severe migraines with ataxia at age 2. Migraines were due to dilation of blood vessels -- turning the whites of her eyes blood red. Migraines escalated. Developed what looked like petit-mal and partial complex seizures but just very rarely, also symptoms like "REM while awake" -- diagnosed with both Kleine-levin syndrome and narcolepsy. Topamax partially controlled migraines and what looked like seizures completely syopped. Addition of CoQ10 completely controlled migraines. Later, found to have osteoporosis due to intestinal malabsorption issues. Diet changed.
Other than that, her vision is fine.
Question: Does what happened with my daughter's left eye make any sense? Any ideas as to what could cause this?
Malabsorption could cause vitamin deficiencies especially fat soluble vitamins like vitamin A. Just one possible thought. The one-eyed color deficit doesn't sound too terribly bad IF the visual acuity and visual field and pupil reactions are normal. Most bad problems cause real loss of vision. The color deficit is curious but among her many other problems I would just keep a watch on it and keep in contact with pediatric ophthalmologist. Look at package insert for topamax - can rarely cause severe attacks of glaucoma. Nothing to do with this case, but Just FYI.
Just wondering, but given the intestinal malabsorption, has your daughter been tested for celiac disease? It can present in very diverse ways, among them the appearance of unusual neurological symptoms. Celiac disease does happen to be more common in people with thyroid disease.
The malabsorption was found with osteoporosis. They did an calcium with vitamin D absorption test, and she did not absorb it. Her blood calcium from bones leachining were so hy, the parathyroid was surpressed. She was tested for the foods causing it -- but not with the biopsy which would have diagnosed "Celiac", but was having an immune reaction to gluten. She is sensitive to gluten, casein, soy and egg whites.
I did not know that the neurological symptoms of celiac might include affecting her eyes.
She also has hypopituitarism (idiopathic-everything except the prolactin).
I can't help but think that somehow this is all connected. Doctors look at each piece... and I look at the whole -- the migraines, the vision, the sleep disorders, hypothalamic-pituitary hypofunctioning, intestinal malabsorption, allergies... I cannot help but wonder if it all is connected, and wonder how the eyes "fit" into this, if at all. Maybe it is just another random event. "Idiopathic". But multiple completely separate "idiopathic" things?
The only odd things prenatally is that I had chicken pox end of 1st & beginning of 2nd trimester, and she had lots (majorly) hiccups then and for years after. She had very large head size and breech, causing c-section & suctioning, but doctors said she was fine. Intelligent. Alert. But oh so irritable and hypersensitive.
Thank you so much for your response.
I thought that the connection between celiac and thyroid disease was autoimmune? Or is it more than that? Because my daughter's thyroid is supposedly fine--just not enough TSH being sent to it.
If she hasn't had this done already, I would certainly run a celiac panel (set of blood tests to assess the likelihood of celiac disease), and then do an endoscopy if the results of the blood test warrant it. There are a handful of reports of eye complications of celiac disease, typically secondary to nutritional deficiencies, and as you are probably already aware, seizures can also be caused by celiac disease. It might not account for all of her symptoms, but is certainly something you would want to rule out. Gluten is found in many things, including some medications, soups, soy sauce, and many processed foods such as commercial salad dressings. If she truly has celiac disease she would need to be on a strict gluten-free diet.
However, one thing is really important. If she is not eating any gluten now, the blood tests and biopsies will probably come up negative for celiac. She would need to be eating gluten for them to show a positive. However, if she has celiac disease, and she is still getting trace amounts of gluten, perhaps you might see evidence of that in the blood tests and biopsies. You might also consider checking her B12 level. It can be lowered in celiac disease because of malabsorption, and low B12 can cause neurological symptoms. Best of luck getting to the bottom of this.
She had the intestinal absorption testing, bloodwork (pos for gluten sensitivity genes), and enterolab testing, just not endoscopy. That's not going to happen. She has been on a strict gf/cf/sf/ef diet with very good results. B12 was odd... high (and this was tested without any food supplements that could have raised it). Since this was studied for research (that's my kid--so bizarre she's good research material), they'd seen this before in some others--the kidneys hang onto it as if the body needs a higher amount (???)
I don't know the mechanism of action for Celiac to cause her eye problems except perhaps as Dr. Kutryb said, maybe vitamin A deficiency? I guess we can just be glad it was in just 1 eye and not worse.
As for seizures--yes-- unconfirmed simple and complex partials.
Thanks. I think I can put this to rest. We'll just say idioptahic but possibly the intestinal malabsorption. (hmm... does that get Zoloft off the hook?)
I highly suggest that you get your daughter to one of the top pediatric centers in the country where they are used to seeing complicated cases like with your daughter. Better doctors look at the whole picture. Texas Children's, Rainbow Babies, and Cleveland Clinic and Children's Hospital of Philadelphia are the first few that come to mind. Do some research and find a place you can get to. Even if you have to travel far, it will probably be well worth it.
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