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Dr. Andrew Rynne
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Dr. Andrew Rynne

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Suggest ways to rule out PANDAS in a person with Down syndrome

Answered by
Dr.
Dr. Erion Spaho

Neurologist, Surgical

Practicing since :2004

Answered : 3708 Questions

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Posted on Mon, 20 Nov 2017 in Medicines and Side Effects
Question: Our 27 year old daughter with Down Syndrome suddenly went into a state of severe regression and altered mental state four months ago at which time she showed/s signs of dementia, psychosis, rapid weight loss and severe insomnia. MRI and CT brain scan showed normal other than Calcification of the XXXXXXX Ganglia. Blood work has found Hypothyroid(treating with NatureThroid), low Red Blood Count with elevated MCV, MCH levels. She has been diagnosed years ago as being a Strep Carrier. She was exposed to a strep infection end of January and one week later ran a fever for over 2 weeks and had a sinus infection, was treated with antibiotics. An Integrative Dr wanted her blood work tested for Strep A and so in the month of May blood work for an ASO titer flagged high at 362. ASO titer was again tested in XXXXXXX with range of 413 and again in August at 517. She had a EEG after 2 fainting spells and her Neurologist indicated that Strep can go to the Brain.

It has been suggested that she may be suffering with PANDAS. We want to get to the bottom of her illness not just guess.
XXXXXXX is also Gluten intolerant and is on a Gluten Free diet. She will often go into severe crying spells within a few minutes of eating. However these crying spells and talking to herself will also happen continually throughout her day making it very difficult for her to function outside her home. Even with family members she is very much disconnected and in a state of depression....HELP??? We do not want to just put her on Psychosis medication. We want to know what has caused her to change so rapidly and significantly. She is very ill!
She has undergone multiple tests but we are not getting answers or resolve. XXXXXXX had a Pace Maker dual chamber implant 5 years ago due to Syncope. She uses a CPAP however recently infrequent in that she is in a pattern over the last 2 and a half months of being awake 36 hours straight. She will only sleep every other night.
doctor
Answered by Dr. Erion Spaho 35 hours later
Brief Answer:
PANDAS is partly a possibility, other conditions to consider too.

Detailed Answer:
Hello and thanks for using HealthcareMagic.

I have read your question and understand your concerns.

Regarding the symptoms and high titers of anti Strep A antibodies, PANDAS is a possibility, but your daughter’s age is a important factor that questions this possibility.

I think that other possible conditions that may cause altered mental status such meningoencephalitis, Lyme disease, etc. should be considered and evaluated further before to be sure about PANDAS.

In my opinion , besides blood tests, spinal tap and cerebrospinal fluid examination is an important step in achieving a correct diagnosis.

Discuss with your daughter’s Doctor about these issues.

Hope you found the answer helpful.

Let me know if I can assist you further.

Take care.


Above answer was peer-reviewed by : Dr. Raju A.T
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