Eat Happy!

Eat Happy!

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Friday, June 21, 2013

Help is on the way............

A FAIRFAX CRY FOR HELP 

While waiting for the surgeon to read the upper GI images at CHOP..... our local GI department, whom we dislike immensely, was our only “around-the-corner” GI resource. In a desperate cry for help, we visited with a nurse practitioner. We had never seen her before. Since Ian was a new patient, we had to spend 45 minutes “catching-up” on him. Once she had all the information and a handle on the issues, she immediately contacted our last GI doctor in the practice to consult...... the appointment was a major waste to us now.


The top black bubble shows a small amount of the stomach above the diaphragm.
The diaphragm is noted by the diagonal gray line.
The Toupet Fundoplication (wrap) is the gray-black band between the large black area and the small black bubble.

She returned to say the images appeared to show maybe a small hernia and loosening of the wrap (no news to us) with no reflux (also not new news) and that we would need to consult with the surgeon who did the wrap-fundo. Thanks lady..... we were already doing that. Why couldn’t you take care of this over the phone for us, instead of wasting two hours of our time and effort to go through every last detail... just to differ to someone else (which you have always done over the last two years anyway and is why we don’t come to you anymore.) PHEW, I’m exhausted just putting the story (and my comments to myself) into words. Needless to say, she knew nothing more by looking at the images than what Tom and I could figure out on our own looking at the images (which we had already done thank you.)

The office did increase his Prevacid Solutabs to 30mg/day. THis made sense since he was vomiting so much. he had previously been on half the dose, and was “growing out of it” in order to wean off. But, since he was no longer in the successful period to wean off, he needed a larger, therapeutic dose. Another change was an increase in the Erythromycin as needed. Ian has been on Erythromycin on and off for the last 18 months or so. Small doses of the antibiotic help move food along in the stomach from increased frequency and strength of contractions. In general, Erythromycin causes stomach cramping and contractions... which is why some people have a hard time with stomach upset when they are taking it when they are sick.



CHOP ER ADMISSION

A week or so later, Ian had “hit bottom.” He was constantly refusing food, but wanted to eat at the same time. As weird as that sounds, you know what I mean if you have a child with feeding problems. Ian wanted to eat so badly, but his negative experiences scared him away from trying what he wanted to do. It wasn’t long before the ‘3 week out appointment’ was’t going to cut it.

One morning, I called CHOP’s GI department to discuss options. Based on the situation, they recommended he been seen right away. Since we certainly did NOT want to see our local hospital and GI department, we selected CHOP. They notified the ER and let them know we would be in later that day..... as soon as we could make the three hour ride north.

Thankfully, we were able to get out of town very soon and to CHOP within a handful of hours. Because we were a “notified arrival,” we didn’t have to wait. The place we packed and I was very grateful for their urgent treatment. The ER took a few x-rays and drew some labs. About two hours in, we were admitted. The wait for a bed was not so simple. We were admitted the first week in May.

Ian was such a good boy in the ER. He was full of smiles and laughter.




We finally arrived in a room at 10:00P, seven hours after ER arrival. Ian was an angel and I cannot believe how patiently he waited for his room. CHOP has incredible rooms on their GI floor. Their newly renovated wing essentially has suites. They are spacious, with a bathtub, and full room size windows. It felt good to be in a place where Ian could get help.



Our personal GI doctor was out for the week (of course) so we saw another attending GI doctor. He was awesome. He cared about our concerns, was easy to talk to, and had great patient relations. Ian was in good hands. Unfortunately, he wasn’t Ian’s primary GI. He was able to order some tests and formulate a plan until we could visit our GI doctor for that original “three week out” appointment.



GASTRIC EMPTYING SCAN..... GASTROPARESIS....... check!

The admission was the first week of May, 6 weeks post CHoR discharge. It felt good to be in a place where we knew someone would pay attention to us. The trouble was, with the motility specialist out of town for the week, not as much could be accomplished. There is a second motility specialist, the director of the clinic. However, since we were established with the other doctor, he wasn’t able to do anything....... ridiculous in my opinion.

We tried to get a good night’s sleep before the next day came in a few hours. When the morning came, the doctors did their rounds. The attending physician in the GI department was great! We enjoyed working with him. He ordered a gastric emptying scan. This is a test to evaluate how quickly the stomach empties. Ian had one of these a long time ago, right after the G tube placement.

As we entered the room for the scan, we realized that Ian’s previous scan was really called a Milk Scan. Milk scans measure how fast certain fluids leave the stomach. A gastric emptying scan measures food. I immediately noticed a problem...... FOOD. The hospital uses egg to measure emptying. There is a radioactive isotope added to the eggs. Since they use various variables and measurements, their food has to be used. We were not able to feed Ian some of his own purees or crunchy foods. She brought out a scramble egg. I looked at it and then looked at her. Then I asked “and what do you do if he won’t eat it?” She looked at me like I was crazy. I told her about Ian’s G tube and feeding aversion (especially with foods like mushy scrambled egg). She seemed unfazed and simply told me to get him to eat it.

Obviously, this is easier said than done. She did tell me that he only needed to eat about 2/3rds of it, but the more the better. She told me we had 10 minutes to get him to eat it. I knew this was going to be a challenge. Surprisingly, Ian was hungry enough to try the egg. The first couple bites weren’t so bad.... but getting him to swallow was tough. He wasn’t able to efficiently swallow because he couldn’t ‘feel’ it the same way he does tougher foods he chews or smooth purees he simply swallows. For Ian to chew something soft and then swallow it is quite a challenge. We gave him a few drinks to help wash it down.

After 10 minutes, he had barely had half the egg. I was getting worried we wouldn’t be able to do the test we needed... or worse, spend two hours doing the scan, just to find out it was inconclusive because he didn’t eat enough. The radiologist gave Ian 5 more minutes to eat a bit more. When all was said and done, Ian had eaten almost 2/3-rds of the egg in the 15 minutes. We were cleared for the scan.

Ian did a great job lying on his back strapped to a table for 2 hours! The scan includes and x-ray of his stomach every 10 minutes. In between the 10 minute x-rays, he was free to wiggle around. The hospital has tvs for the kids to watch movies. Thanks to Finding Nemo and Cars, he did a great job!!




The two hour test showed only a 25% emptying rate. This meant that it takes 8 hours for Ian’s stomach to completely empty (approximately). This is not good. The goal was to empty over 50% in the 2 hour scan. Ian was swiftly diagnosed with delayed gastric emptying, also called gastroparesis.

American College of Gastroenterology

http://patients.gi.org/topics/gastroparesis/

Medscape Gastroparesis

http://www.medscape.com/viewarticle/572819_3

Gastroparesis is a condition which is usually chronic and progressive. Small children can have varying prognoses since their bodies are still growing enormously and developing every day. Only time will tell what Ian’s future will be like. The delayed emptying can be caused by so many different things. The number one reason is Diabetes related...... which we know isn’t an issue. Other reasons include acute illness and vagus nerve damage from abdominal surgeries. It was pretty clear that vagal irritation-damage was the root of Ian’s issues.... especially since he has had two abdominal surgeries. Acute illnesses over the last handful of months could have played a role, but not as likely as the surgeries.

Complications Associated with Laparoscopic Anti-Reflex Surgery

http://www.ncbi.nlm.nih.gov/pubmed/9434220

NIH

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/

The surgeries prove to be a more likely cause because Ian has always had motility problems. Ever since we resolved the reflux with the G tube and Nissen fundoplication, Ian has had retching and motility issues. Tom and I have be certain for a long long long long time this has been an issue. We have repeatedly been pushed to the side as far as gastric emptying has gone. As a sideline, Ian had been taking erythromycin on and off to help with “suspected” motility concerns. CHOP has never really agreed with him needing this assistance.

The trouble with erythromycin for this treatment is that you can build up a tolerance. This is called tachyphylaxis. For this reason, an alternating on and off schedule is recommended. Unfortunately, Ian has never had someone to manage the treatment that is comfortable recommending a schedule for us. At this point, Ian’s erythromycin was not helping anymore. He was taking off of the medicine and put on a new one.

The name of the new medication is Reglan. Reglan is a motility medication that can be very dangerous. Since Ian had been on several other motility medications without relief, we were out of good options. Reglan helps tons of people. It is an excellent medication, but carries a high risk of serious side effects. The FDA has given the medicine a black-box warning due to the risk of tardive dyskinesia (TD). TD is involuntary, repetitive muscle movements. The neurological disorder often results from antipsychotic drugs. Those effected by TD are often the elderly (particularly women) and those on the medication for a long time. Infants also carry a high risk.

The medication worked very well for Ian. It started working instantly. He was started out on a very low dose. We stayed in the hospital for about 12 hours after the medication was put in place. We were hopeful the medication would work for Ian. While nervous, we knew that the chances of something wrong happening were very slim..... but, we also know that if small chance something will happen, it will happen to Ian.


ARRIVING HOME

Sure enough, Ian wasn’t home and on the medication 36 hours before we noticed tongue-lip licking and smacking. It happened mostly when he was doing something else. The TD typically is a passive/subconscious activity. It was pretty clear he wasn’t doing it on purpose. After a quick phone call to the GI doctors, Ian quickly came off the Reglan.

We were disappointed and relieved at the same time. We were happy the medication was helping his emptying, but worried about him being on it for a long time. Now, we didn’t have to worry anymore. We had a follow-up appointment one week after Ian stopped taking the Reglan. We would have to wait for the next step.

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