u/Beautiful-Act6485

15 yo female with history of hypermobile Ehlers Danlos syndrome (diagnosed by genetics and rheumatology), dysautonomia (diagnosed by cardio), asthma, autism, adhd, depression, insomnia, and femoroacetbular impingement. Living in USA. Medical care has been beyond amazing until the new attending came on. She “knew” what it was all along.

Meds: symbicort, albuterol, Zoloft, seroquel (for insomnia at night), Zyrtec, adderall xr, melatonin, and Flonase.

Mother has hEDS, dysautonomia, mast cell activation syndrome, and lupus.

Possible important history:
March 24th pneumonia vaccine for immune response study. (When she gets a virus she sick for a month or two.)

March 30: said she felt like she was getting sick. Took a nap. (She doesn’t nap. We have to drug her to sleep even 8 hours.)

April 5 she was sleeping 20ish hours a day and napping when awake.

April 8th ped said it wasn’t mono (labs) and that she was probably recovering from a virus plus the hip impingement pain causing exhaustion. Try to keep her up to regain that energy.

Limited bed to 12 hrs. When doing school work (we homeschool) she would do an assignment, rest, do an assignment, take a nap, do an assignment, and so on.

The week of the 20th we went on vacation to sea world San Antonio. She navigated the park in a wheelchair due to her hip. She road every rollercoaster as much as possible (30+ times in total).

May 4th around 5 or 6 pm she came to me and said her eyes started burning and then she couldn’t see the sides. She described the loss of peripheral vision as frosted glass. She could see light but not identify what she was seeing. Went to the ER. They gave her toradol and did a CT scan. Said no MRI bc it wasn’t important enough to call in the tech. An hour after toradol she developed a headache. They gave her compazine and discharged her with worsening headache and worsening vision.

May 5 saw ped and her optometrist. Diagnosed With bitemporal hemianopsia and requested MRI. 40% loss on left eye 25% vision loss on right eye.

May 6th ped requested an ophthalmologist. Saw them. They agreed with optometrist. Get the MRI.

May 7th ate dinner and when to bed. This was the LAST meal she eaten.

May 8th sedated MRI. Before she woke up they called us back and said they are transferring her to a larger facility. She has had two small strokes. One in the cerebellum.

Admitted via ER to larger facility. Her starting weight was 166 pounds. 5 ft 4. The hospital ophthalmologist agreed the eyes are pristine in terms of structure. Vision was 20/20 in both eyes before all of this and it is now consistently 40/20 (I think that’s the order the numbers go in).

May 9th they did a sedated MRI/MRA/MRV of the head and neck with contrast. She came out well and was alert and oriented. That evening her blood pressure bottomed out down into the 70’s/30’s. She was minimally responsive. They had a 1 L bolus of NS and got her in the 90’s/50’s after an hour or two. (Her blood pressure has remained an issue through the entire admission.)

May 9th/10th we were able to get her to drink some fluids and eat two small kid packages of gold fish and one package of 6 pb and cracker package. That was the last food she ate and pretty much the last time she drank anything or any value. At this point she was nauseous but still able to keep food down. By the evening of the 10th she was unable to keep food or drinks down.

The headache continued to get worse with no treatments helping. (Toradol, steroid, compazine mix and magnesium) The nausea continued to get worse with no treatment helping. (Zofran makes zero difference. They added reglan with a “1-2 point drop” she started using the 1-10 pain scale for nausea. They refused phenergran due to sedation.) Her vision also continued to get worse. By this time all she does is sleep.

They has been giving fluids off and on bc they want her to be thirsty.

She has not eaten any food until today, may 17th (it was more of a passive agressive f you doc). She started with some water and vomited it up. then she added jello that she vomited up. Then Italian ice that she vomited up. She decided to add color (per her) so she drank Gatorade that she vomited up and then…she wanted chunks so she ate some of a muffin that she vomited up. It all came up. Just to prove to the doctors she can’t keep food down.

The doctors claim they have done everything they can and have ruled out stroke, glioma, and MS. They had done 5 days of 1g of solu-medrol. She has had bouts of becoming unresponsive with no memory. For example today her blood pressure was 85/53 wirh a heart rate of 97. 15 min later she said she felt dizzy and funny then became unresponsive. Her blood sugar was 72. Sternal rubs, pinching, and compressing the nail bed go zero response. (These episodes can last 20-45 min.) they did a post episode eeg and found no post ictial phase. They said her brain was shutting down due to the 9/10 pain and 9/10 nausea with vomiting and dry heaving.

She hasn’t eaten or drank anything of value since the 10th. She hasn’t peed in 34 hours. She is going through an IV every 24 hours even when not in use. It’s like her body is rejecting it. Once the steroids were started the vision stopped progressing.

Yesterday they started Emend fo nausea but it has been of no help.

The attending stated yesterday, “I’ve done all I can think of. At this point we are looking at her body being confused due to stress and anxiety. If you go home and get her in the sun and her environment she will start eating and drinking.” (This is why she decided to eat and drink today and vomit it up. To prove she can eat. She just can’t keep it down.) She can keep 1-2 small sips down every 20-30 min. Any more frequent and she starts vomiting/dry heaving.

Her LP is normal. (I don’t know the pressures. But the labs are clear.) An MrI of the spine is clear. Her vi D is 18. All other labs done have either been unremarkable or are still out as they had to be sent out.

They are currently saying all of her issues (vision, nausea, vomiting, migraine, exhaustion, dizziness and weakness) are not related to the brain lesions so it has to be psych.

The attending stated she doesn’t treat a teenager not eating/drinking until 2-3 weeks. They are refusing any kind of supplemental nutrition (NG tube, NJ tube, TPN) until then. As of this morning her weight is at 150.

The doctor is discharging her tomorrow as “there is no medical reason to keep her since this is psych related.” We asked what we are supposed to do if she doesn’t eat or drink when we get home. They said to bring her back. Meanwhile I was always told if you haven’t peed in 24 hours to go to the ER an if you haven’t been able to keep food or drinks down for a week to go to the ER. They are literally discharging her with things we should be taking her to the hospital for.

I will answer any questions you have.

15 yo female with history of hypermobile Ehlers Danlos syndrome (diagnosed by genetics and rheumatology), dysautonomia (diagnosed by cardio), asthma, autism, adhd, depression, insomnia, and femoroacetbular impingement.

Meds: symbicort, albuterol, Zoloft, seroquel (for insomnia at night), Zyrtec, adderall xr, melatonin, and Flonase.

Mother has hEDS, dysautonomia, mast cell activation syndrome, and lupus.

Possible important history:
March 24th pneumonia vaccine for immune response study. (When she gets a virus she sick for a month or two.)

March 30: said she felt like she was getting sick. Took a nap. (She doesn’t nap. We have to drug her to sleep even 8 hours.)

April 5 she was sleeping 20ish hours a day and napping when awake.

April 8th ped said it wasn’t mono (labs) and that she was probably recovering from a virus plus the hip impingement pain causing exhaustion. Try to keep her up to regain that energy.

Limited bed to 12 hrs. When doing school work (we homeschool) she would do an assignment, rest, do an assignment, take a nap, do an assignment, and so on.

The week of the 20th we went on vacation to sea world San Antonio. She navigated the park in a wheelchair due to her hip. She road every rollercoaster as much as possible (30+ times in total).

May 4th around 5 or 6 pm she came to me and said her eyes started burning and then she couldn’t see the sides. She described the loss of peripheral vision as frosted glass. She could see light but not identify what she was seeing. Went to the ER. They gave her toradol and did a CT scan. Said no MRI bc it wasn’t important enough to call in the tech. An hour after toradol she developed a headache. They gave her compazine and discharged her with worsening headache and worsening vision.

May 5 saw ped and her optometrist. Diagnosed With bitemporal hemianopsia and requested MRI. 40% loss on left eye 25% vision loss on right eye.

May 6th ped requested an ophthalmologist. Saw them. They agreed with optometrist. Get the MRI.

May 7th ate dinner and when to bed. This was the LAST meal she eaten.

May 8th sedated MRI. Before she woke up they called us back and said they are transferring her to a larger facility. She has had two small strokes. One in the cerebellum.

Admitted via ER to larger facility. Her starting weight was 166 pounds. The hospital ophthalmologist agreed the eyes are pristine in terms of structure. Vision was 20/20 in both eyes before all of this and it is now consistently 40/20 (I think that’s the order the numbers go in).

May 9th they did a sedated MRI/MRA/MRV of the head and neck with contrast. She came out well and was alert and oriented. That evening her blood pressure bottomed out down into the 70’s/30’s. She was minimally responsive. They had a 1 L bolus of NS and got her in the 90’s/50’s after an hour or two. (Her blood pressure has remained an issue through the entire admission.)

May 9th/10th we were able to get her to drink some fluids and eat two small kid packages of gold fish and one package of 6 pb and cracker package. That was the last food she ate and pretty much the last time she drank anything or any value. At this point she was nauseous but still able to keep food down. By the evening of the 10th she was unable to keep food or drinks down.

The headache continued to get worse with no treatments helping. (Toradol, steroid, compazine mix and magnesium) The nausea continued to get worse with no treatment helping. (Zofran makes zero difference. They added reglan with a “1-2 point drop” she started using the 1-10 pain scale for nausea. They refused phenergran due to sedation.) Her vision also continued to get worse. By this time all she does is sleep.

They has been giving fluids off and on bc they want her to be thirsty.

She has not eaten any food until today, may 17th (it was more of a passive agressive f you doc). She started with some water and vomited it up. then she added jello that she vomited up. Then Italian ice that she vomited up. She decided to add color (per her) so she drank Gatorade that she vomited up and then…she wanted chunks so she ate some of a muffin that she vomited up. It all came up. Just to prove to the doctors she can’t keep food down.

The doctors claim they have done everything they can and have ruled out stroke, glioma, and MS. They had done 5 days of 1g of solu-medrol. She has had bouts of becoming unresponsive with no memory. For example today her blood pressure was 85/53 wirh a heart rate of 97. 15 min later she said she felt dizzy and funny then became unresponsive. Her blood sugar was 72. Sternal rubs, pinching, and compressing the nail bed go zero response. (These episodes can last 20-45 min.) they did a post episode eeg and found no post ictial phase. They said her brain was shutting down due to the 9/10 pain and 9/10 nausea with vomiting and dry heaving.

She hasn’t eaten or drank anything of value since the 10th. She hasn’t peed in 34 hours. She is going through an IV every 24 hours even when not in use. It’s like her body is rejecting it. Once the steroids were started the vision stopped progressing.

Yesterday they started Emend fo nausea but it has been of no help.

The attending stated yesterday, “I’ve done all I can think of. At this point we are looking at her body being confused due to stress and anxiety. If you go home and get her in the sun and her environment she will start eating and drinking.” (This is why she decided to eat and drink today and vomit it up. To prove she can eat. She just can’t keep it down.) She can keep 1-2 small sips down every 20-30 min. Any more frequent and she starts vomiting/dry heaving.

Her LP is normal. (I don’t know the pressures. But the labs are clear.) An MrI of the spine is clear. Her vi D is 18. All other labs done have either been unremarkable or are still out as they had to be sent out.

They are currently saying all of her issues (vision, nausea, vomiting, migraine, exhaustion, dizziness and weakness) are not related to the brain lesions so it has to be psych.

The attending stated she doesn’t treat a teenager not eating/drinking until 2-3 weeks. They are refusing any kind of supplemental nutrition (NG tube, NJ tube, TPN) until then. As of this morning her weight is at 150.

The doctor is discharging her tomorrow as “there is no medical reason to keep her since this is psych related.” We asked what we are supposed to do if she doesn’t eat or drink when we get home. They said to bring her back. Meanwhile I was always told if you haven’t peed in 24 hours to go to the ER an if you haven’t been able to keep food or drinks down for a week to go to the ER. They are literally discharging her with things we should be taking her to the hospital for.

I will answer any questions you have.