Loss of Reflex

[CHRISTYDRAKE]

We just got back from a week in Cleveland for testing for my son.  They confirmed POTS, autonomic neuropathy, abdominal pain, chronic nausea syndrome.  They are not sure of the cause of the nausea.

When they ran a 'stick' (for lack of a better word) over his left abdomin, it twitched and reacted.  There was no reflex or reaction on his right side, where all of his abdominal pain is.  This has piqued the doctors interest.  Has anyone else, who experiences the abdominal pain, had this happen?   Are the nerves damaged, so they don't respond?

All in all, it was a great week.  Although, his tilt table test was borderline, since he was having a very good week, symptom wise.  We were at the doctors office for 3 hours(not for testing)!  They spent ALOT of time with us.  If anyone needs a pediatric gastro and neuro, I would highly recommend them.  They are husband and wife.  

My son will be starting on Doxepin.  If that doesn't help, he will then try Cymbalta.  Is anyone else taking doxepin, and has it helped?

It was great being told "This is not in his head".  

[CHRISTYDRAKE]

The doctors in Cleveland are at the University Hospital.  Dr Thomas Chelimsky(Neuro) and his wife Dr Gisela Chelimsky(Gastro) are great.  They not only diagnos, but they also treat.  I can call the office and let them know something isn't working, they will change doses or medication.  We have another follow up in August with them.

[NYCpots]

Hi there,

I'd love to know the names of the docs you saw in Cleveland and how they were with follow-up. Part of the frustration i've had with the mayo clinic is that they are all about diagnosing but the treatment falls short :(

[kelly1258]

We never ad a test like wand thing like your son, but my daughter's stomach wasn't moving and they said basically paralyzed.  She also had all the nausea like you son, but after starting the gastro meds she was 80% better.

[CHRISTYDRAKE]

If the doxepin doesn't work, Cymbalta is next on the doctors list to try.  I did bring a print out of what you had posted, but the doc is trying the doxepin first.  My son has difficulty sleeping and the doxepin should also help with that.  (Which it has, it knocks him out).

We were unable to squeeze in the gastric emptying test while we were in Cleveland.   It is on the list of tests they are going to do on our next visit in January.  

Did either of your daughters loose their reflexes where they have their abdominal pain?

[kelly1258]

Hey Christy Im the mom who told you about the results we have had with my daughter on Cymbalta what did they say about it? Also you may have read my posts with  my younger daughter. She was diagnosed with gastroparesis which is common for children to have with dysautonomia.  Mention it to your Peds Gastro.  My daughter had the same symptoms as your son.  The nerves caused delayed gastric emptying which is an easy test the doctor can do.  My daughter was in the hospital and is 80% better.  

[AireScottie]

Good!  Glad they're following up on that loss of reflex.  It sounds like a good clue.

[CHRISTYDRAKE]

They went over the results from the testing while we were there.  He was borderline on the tilt table testing, but he was having a very good week.   His legs did turn purple while standing on the table.  His HR only went up about 28 beats.  He was off of his Fludrocortisone for 5 days, but he had been on a high dosage.  The doctor has cut him from .2 mg to .05 mg a day.

We do go back in three months for a follow up, plus they have more tests they want to do.  They want to do the gastric emptying test and also have him swallow a camera, so it can look at the smaller intestines that the doctor was unable to get to.  He will also do the sweat test.

Hopefully, this medicine helps.

[AireScottie]

This is fantastic!  I have abdominal pain, but I still have sensitivity there.  Except the days when my neuropathy is really bad, then I lose all feeling in my legs, and it has started creeping up to my waist.  I think the doctors there will take good care of you though.  Are you going back to discuss testing results and follow up with more appointments?

Keep an eye on him with the doxepin.  Tricyclics can some times make the dizziness and fainting much worse.

[Heiferly]

Well, I've been keeping you in my thoughts and all I can say is ...

WOO HOOO!!!!!  **HAPPY DANCE**  This is just wonderful news!!  I'm elated that you are finally getting help.  I hope your son will be feeling better soon now!!!

[Weney3777]

All I can say is AWESOME! It is wonderful that you had a chance to get to Cleveland for testing. I've never heard of chronic nausea syndrome, but know exactly what he's going through. I've lost 60 lbs. in the last year and a half due to nausea and feeling downright awful. Good luck with the new meds. Keep us posted as to what works, please. I think it's a blessing that a doctor would spend that much time with you guys.