Finally Daughter's Test Results In Hand

[thejohnsongang]

Hey everybody. Having one of those days were I'm very out of it, so forgive me if this sounds a little weird. I finally got Anna's test results in my hands. Back at the end of August everbody gave me tons of support as my daughter went through a series of test to include antroduodenal manometry, endoscopy, colonscopy and a TTT with the antroduodenal monometry catheter in place. Her GI doctor said she had bile reflux and refered me back to our CFS doctor as the rest of her problems were pots related. This little excerpt is from the clinic notes from her pots doctor:

Anna underwent antroduodenal manometry, endoscopy, and colonscopy, and tilt table testing with the antroduodenal manometry catheter in place a the end of august 2007. The duodenal mucosa showed nondiagonostic findings: her antral mucosa had chemical gastritis thought due to the bile reflux (which had been noted visually during the endoscopy), and no helicobacter pylori. The esophageal biopsy showed squamous mucosa with reative epithelial changes of the type seen in gastroesophageal reflux, but the eosinophil numbers were not quanititated. In the colon, there wer only lymphoid aggregates and melanosis coli. The sigmoid colon has slightly prominent eosinophils.

The antroduodenal manometry showed features of antral hypomotility and neurogenic intestinal dysmotility with high amplitude duodenal contractions correlating with symptoms of adominal pain and nausea during the tilt table testing. The results suggest her main problems are related to orthostatic intolerance.

From what I have talked to her doctor about and what I have researched is that Anna has delayed gastric emptying along with nausea and vomiting due to her pots (gastric hypomotility) . She also has Barret's esophagus.

Most of this was in a foreign language to me and I had to do some research. Just wanted your guys input to see if I missed anything. I like to check and double check to make sure I know everything.

Thanks for all your help.

Nolie

[juliegee]

Hmmm, Nolie-

The connection between the POTS and tummy issues was what you were trying to connect & they did that. Which is good, I guess. Now you have a clearer idea of exactly what poor Anna is dealing with. The Barrett's esophagus is a bit alarming. I know her docs will keep a close eye on that.

The big question is: how has this changed Anna's treatment? What did her docs prescrube differently for her to do/take? I know Mack took carafate for a while for the bile reflux. It helped, but was hard to manage with his other drugs as it is supposed to be taken seperately from everything else. (He had to wake up a full hour before his normal wake-up to get the carafte in and then the rest of his meds and breakfast.) Has she tried carafate yet?

How has sweet Anna been faring since all of that horrible testing? Has she been able to attand school?

Hugs-

Julie

[morgan617]

There seems to be new stuff coming out on Barrett's. I have it, as does my 26 year son. But they are starting to question at which point it should be of real concern. They actually saw a regression in mine with treatment.

My son and I have all the same results, isn't it fun...so not

Jake takes Nexium twice a day and 40 mg of Pepcid at bedtime, as the mechanisms of bile production and how the gut works at night is different than during the day. So The proton pump inhibitors like Nexium work better during the day and the histamine blockers work better at night. Have the doctors discussed this with you?

Jake also got Domperidone from Canada and takes 8/day. He says it doesn't hurt, but doesn't seem to help either. So I guess I can't help you. Nothing works for me. My manometry shows completely disorganized contractions and strictures. I assume the contractions are autonomic and the strictures from reflux, caused by poor motility.

I'm wandering all over here, but do not know what's being done for her now. Sorry if it's on another thread and I missed it. They talked about surgery for Jake, my son, but his motility issues contraindicate surgery. morgan

[Guest tearose]

I don't have any wisdom to shed on your daughter's situation but wanted to offer you my support.

After gallbladder removal I only had digestion issues that were intermittent and are able to be managed.

I hope they find a way to help Anna so she feels better and can get back to the business of being a kid again!

Take time to replenish yourself as soon as you can.

best regards,

tearose

[thejohnsongang]

Thanks for all the input. Anna has been on Zantac since March of this year for the acid reflux. Dr. Rowe put her on it at her first appointment with him. As soon as he seen the mouth ulcers he knew what it was. Her treatment hasn't changed much, we just have to be certain that she takes her meds as prescribed and not miss a dose or be late.

She is currently on Florinef .1mg 1x a day, Potassium 10 meg 1 x day, clartin 10mg 1 x day,

yasmin 28 1 x day, periactin 4mg at night, migrelief 2 x day, melatonin 3mg at night, clonidine .1mg at night and sucralfate 1gm 2 x day am & pm and liquid carafate when needed during the day. She also takes zomig 2.5 mg when needed for migraines.

Dr. Rowe bumped her fluid and salt intake. His joke is 2 pickles a day keeps the doctor away. He said 2 dill pickles a day will give her enough salt. He added the Sucralfate (carafate in pill form) in the am and pm and if she has any problems during the day she can take the liquid carafte as soon as she feels symptoms. He never restricted her on when she could take it so she takes hers with her other meds right before she eats. The sucralfate has worked wonders for her and she now eats all the time and keeps it down. She is more regular with her bowel movements and isn't nauseated at all. She gained 6 1/2 pounds in less than a month so Dr. Rowe cut her periactin dose in half and if she has gained more weight when she goes to her PCP on Monday then she can cut it out all together. Her EGID is GONE!!!!!!!. She outgrew these food allergies and there were no eosinophil cells left to justify any allergy treatment. That is a godsend its self. On the down side she will have to take the carafte in either liquid or pill for quite a while if not the rest of her life, but on the upside she is better and back in school full time. She's also working and managing about 20-30 hours a week on top of that. Her migraines are better on the migrelief and he added the clonidine on the 10th of this month. She seems to be doing better, but still has the daily headaches that don't bother he to much. Her PCP is suppose to start amitriptyline if she is still having them on Monday.

Seems like we have gotten so far and only have a little way to go. She looks so much healthier with a few pounds added. She likes it also. She said she feels better and has more energy. She doesn't like the taste of the liquid carafate, but takes it as she know it helps. Shes back to her old self again and it sure is nice to see. We are now on yearly visits with Dr. Rowe unless it is needed sooner. He works very closely with her PCP and it sure helps not to have to travel so far.

She got her drivers license and is out and about like a normal teenager. I only worry about the Von Willebrands, but she knows as does her friends. We are trying to decide on a medical alert bracelet for her and she can't decide what she wants. So we might get her a couple...a bracelet and a necklace so she can decide with what she is wearing. She's looking forward to softball in the spring.

So all in all its better than it has been in a while. I was just curious about some of the dr lingo as I don't know it. Thank god for the internet and webMD. They get me through so much.

Julie...funny how our kids are so much alike even in their treatment.

I'm just wondering if she should be on something stronger for the Barret's esophagus. I know it can be dangerous, but I feel Dr. Rowe would have started her on something stronger than the Zantc if it was needed. I will talk with her PCP on Monday and see what she suggests.

Nolie

[Mrs. Burschman]

I'm glad she's doing so well! You must be pleased, Mom!

Amy

[thejohnsongang]

Thanks, I am a very proud mom. Knowing where we were a year ago with her and where we are now is night and day. Such a huge difference. At first I was so mad and upset that I passed this disorder on to my daughter, but how she has handled it is a blessing. She always looks on the upside of things. Her statement to her doctors and friends is that I am a 16 year old and no matter what health issues I have I will "BE" a 16 year old. I will not slow down in my activities and you will just have to work around that. I commend her for that. She has seen what this disorder, along with others, has done to me and she plans on living her life her way even if it kills her. Its hard at times to get her to understand, but she is managing it well with very little help from me now. I'm very glad that her doctors have worked so hard to find what works for her. I have lost so many things in being sick myself and the only thing I make 110% effort in anymore is being a mom. I give 100% to my health and the rest I deal with when I can. I don't sweat the small stuff anymore like the house and stuff. If I have energy it gets done, if I don't it can wait. Life is to short not to.