Results and what they mean...

We had a busy day yesterday and today! Yesterday, Henry had an ultrasound to check his pancreas in response to the pancreatic nodule observed during the endoscopy. Everything looked good and there are no concerns.

Today, in addition to feeding therapy, we had an appointment with the allergist. The allergist was wonderful and actually has a very similar story to ours… her daughter was born at 34 weeks, had cows milk and soy allergies, and feeding difficulties. It was nice to talk to someone in the medical field who understands and has experienced some of what we are going through. The allergist told us Henry has Eosinophilic Gastritis. Eosinophils are white blood cells that are typically produced in response to a parasitic infection. Eosinophils gather in the area of the infection and release toxic granules that destroy parasites. When produced in response to an allergy, the granules can be damaging to the lining of the esophagus, stomach, and/or intestines causing tissue damage and ulcers. Fortunately, Henry’s esophagus, stomach, and upper intestines appeared healthy and normal during the endoscopy, indicating that the eosinophils have not caused any significant damage.

The allergist told us Eosinophilic Gastrointestinal Disorders (EGID) are somewhat “new” and that there is a lot of research occurring as to why and when they occur. There is not a test to identify what causes the body to produce eosinophils. Doctors rely on allergy tests, although allergy testing identifies substances that cause a histamine reaction, and not necessarily an eosinophilic reaction. Since Henry has a histamine response to cows milk allergy it is thought that it is also causing his eosinophilic response.

We also had Henry tested for seasonal allergies, since what you breath can also be ingested. The testing showed that Henry has an allergy to dogs. Fortunately, the reaction was not significant, so we will try to reduce his exposure.

To treat Henry’s EGID, we will give him Pulmicort, a steroid, for 6-8 weeks. The “good” news is that exposure to dogs and/or minor amounts of milk proteins will not aggravate his EGID during the treatment. There were a few high calorie foods we were giving him where milk proteins were low on the ingredient list. The allergist told us we could continue giving these to “buy time” to help put weight on while the Pulmicort eliminates the eosinophils.

We are hoping that the Pulmicort will help Henry feel more comfortable and make him want to eat more. In a few days, we will start trying Periactin, which is an appetite stimulant. We are hoping that with the Prevacid, Pulmicort, and Periactin that Henry really starts eating well and gaining good weight. After the treatment with Pulmicort, we will talk with the doctors to determine if another endoscopy is warranted. The only way to confirm the elimination of eosinophils from Henry’s stomach is to perform an endoscopy.

Happy Thanksgiving! Two steps back, one step forward...

What a rough week and a half! There’s so much to update, so I’ll do it in pieces!

Endoscopy
The Thursday before Thanksgiving, Henry had his endoscopy. The procedure and hospital visit went well. We checked in at 6:30am, he went under at 8am, and was in recovery at 9am. We left the hospital by 10:30am! The doctor sat down with us and explained what she saw and gave us some great pictures detailing Henry’s esophagus, stomach, and the beginning of the intestines (duodenum). She said everything looked good. She did observe a small pancreatic nodule at the base of the stomach going into the intestines. She said that this is a common occurrence and doesn’t expect that it is a problem for Henry; however, they will perform an ultrasound of his pancreas tomorrow just to make sure.

During the endoscopy, they took small “pinch” biopsies. The results of the pinch biopsies indicated high levels of eosinophils in the stomach. As many of you may remember, eosinophils are a type of white blood cell indicative of an allergy. We will learn more about what this means when we meet with the Allergist on Tuesday this week.

There were many blood tests performed following Henry’s endoscopy. Of the results we have, everything is ok, but we are still waiting for some results.

G-Tube
The good news is that there is no more G-tube!! But this comes with quite the story! During the endoscopy, Henry’s bard-style G-tube was replaced with a MIC-KEY G-tube. In general, a G-tube consists of a valve (to open the tube for feeding), the stem (which goes into the stomach), and a ball/balloon on the inside of the stomach to keep the G-tube in place. A bard is a more “permanent” tube with a hard solid ball on the inside of the stomach. A MIC-KEY is a “removable” tube that has a balloon on the inside of the stomach that is filled with water and can be easily deflated. We had decided to replace the tube because we had experienced some excessive leakage (mostly when Henry had a cold) and because he had likely outgrown the size of the tube.

We expected to experience some minor leakage the first day or so after it was replaced due to the damage caused from removing the solid bard. However, last Saturday we began to experience excessive leaking from the tube-site. On Sunday, it was so bad that we were having a hard time keeping his fluids in. Given that Henry’s diet consists of 75% formula, this was a real concern. We called UNC Sunday afternoon and were told we could go in for an all-night ER stay or show up at the clinic Monday morning. Since we didn’t feel that Henry was dehydrated, we waited until Monday morning. UNC was great… we didn’t have an appointment, yet never got the chance to sit down before they called us back! The GI nurse practitioner, Lynn, was great, commenting that she was glad “we know Henry so well” and that they “recognize that the parents are the experts.” Wow! I think hell would have to freeze over before Duke would ever utter those words, and even then it would be just a whisper!

Lynn was a great advocate, and after talking with her about Henry’s history, she tried to get the other medical team members to agree to remove the tube. Unfortunately, no one felt that was the best option at the time and that the tube should stay in “just in case,” given the cold and flu season. So, Lynn took out the tube, waited 30 minutes to allow the site to “close up” some on its own, and then replaced the tube. Unfortunately, this attempt did not result in a “better fit” and we continued to experience leakage. We repeated this at home on Tuesday, and again on Thursday, the last time leaving the tube out for 1 hour. Unfortunately, there was little change. At this point, Henry had lost a half pound and his feeding schedule/habits had been completely disrupted since we were feeding him constantly throughout the day to combat what was leaking out of him. We were changing his clothes often (6 or more times!) as he would end up completely soaked several times throughout the day. This also resulted in sleep disruption for all of us since we had to change his clothes/sheets during the night as well. On Friday, we had reached our limit… we called Nannette at home. She was great and was not upset at all that we had called her at home over a holiday! She helped us get in touch with the GI surgical resident and after discussions with both, we agreed at that point that removing the tube was the best option.

On Friday, at 11am, we removed the tube at home and waited! They told us it should take at least 8 hours to close on its own. It’s been almost 2 ½ days since we removed the tube and the site hasn’t quite completely closed up. The leakage is very minimal and we are covering his site w/ some gauze. Henry actually stayed in the same clothes all day today! A first in over a week! We will touch base with Nannette in the morning… I suspect that they will have us come in and possibly place a suture to help the site completely heal.

Although this is a victory, we still have a long way to go! Although Henry consumes enough calories on his own in a day, most of those calories are coming from his formula and he gets about 4 bottles a day. Most toddlers his age are no longer taking bottles. Henry needs to learn to eat more solid foods in a sitting, so that he is actually eating a normal size “meal.” We are still working on spoon feeding, which unfortunately hasn’t occurred in over a week. We will also need to start working more aggressively with sippy cups and open cup drinking.


To round out our week (as “issues” never seem to happen when it’s convenient!), Stewart’s last day of school was Wednesday. He is now tracked out until January! Stewart also lost his first tooth last night! He was quite pleased with the Tooth Fairy’s gift! We had Thanksgiving at my mom’s and got to see some family. Now it’s time to get ready for Christmas! Whew!

Happy Halloween!

Henry has been doing very well and is now up to 17lb, 6oz! The Prevacid appears to be helping Henry quite a bit and we are very excited that something so “simple” has made such a significant improvement. The team at UNC has been great! Our primary contact, Nannette, has been wonderful and has called us many times in the evening to check in, get updates, or just provide us with some information on upcoming appointments. I am so impressed with her dedication… it is very clear that the well being of the kids she takes care of is very important to her.

Just some quick updates… Henry’s endoscopy and G-tube replacement are scheduled to occur in 2 weeks. We are no longer using hemp milk and are sticking with the soy for now since Henry seems to respond best to it. UNC will check thyroid function, among other things, in 2 weeks. Thyroid function is one area where soy can have a negative impact.

Feeding therapy is progressing well. Henry has been “practicing” taking bites with a dry spoon for a couple of weeks now. We call it “Spoon Play!” He is doing well but still has some room for improvement. Hopefully, we will start introducing a “dipped” spoon soon! Physical therapy is going well, also. Henry is practicing walking on uneven surfaces, climbing stairs, and using both sides of his body equally. The gym where the therapist works is a great playground for him… foam pit, trampolines, and all! Developmental therapy is also going well, with the focus on fine motor skills. Henry has discovered “wheels” and his favorite new pastime is to lay flat on his tummy while pushing his cars back and forth on the floor! It’s really cute!

It’s that time of the year again! RSV, flu, and now H1N1 season!!! Although Henry does not qualify to receive Synagis, for RSV prevention, this year, it is still a significant threat. Henry will be getting the flu shot this year as soon as his Pediatrician gets some in! Please remember, getting these “vaccinations” does not PREVENT the flu, it only reduces the risk and/or severity. For Henry, getting sick with anything, even the common cold, has a significant impact on his health and growth. Who wants to eat when they’re sick? Although Henry’s G-tube can be used when he gets sick, we are still not able to give him the calories he needs because his body is less tolerant of those needed calories when he is recovering from an illness. This means he is more likely to vomit, have aggravated reflux, and excess air in his tummy, which only results in more vomit, less sleep, and irritability. All these things impact how well he grows. So, please don’t take offense if we seem to be isolated to our own home this winter season!

The boys had a great Halloween! Stewart dressed up as the Transformers hero Optimus Prime and Henry was a “bad to the bone” skeleton! We had a great neighborhood gathering before the trick-or-treaters set out and Stewart came home with quite the loot!

Welcome to Henry's new blog! We decided to move here so we could have more flexibility in posting pictures, videos, and links as well as better reliability. It may take me a while to learn all the bells and whistles, so this site will continue to evolve!

The last update on Carepages was from September 21st, but I don't think most people received the notification for the update. If you'd like to read the last update or just read more about Henry's first 19 months, visit www.carepages.com/carepages/henrysjourney.

For a recap, we had a very long but productive appointment with UNC on September 16th with a feeding specialist, a nutritionist, and GI nurse practitioner. As I mentioned in the Sept 21st update, we realized that when the "abnormal" has become a part of life's "normal" routine, it becomes difficult to realize how "abnormal" things really are!

UNC's first goal is to make Henry comfortable and eliminate any GI discomfort he may have. We switched his reflux medication from Prilosec to Prevacid. It is already apparent that the switch was a good one as we can tell that Henry is much more comfortable, has had less reflux, less vomiting, is happier, and seems to want to eat more. I'm getting really excited about the changes we've seen since switching to Prevacid, but I'm afraid to get my hopes up as they've only been torn down in the past by just another bump in the road.

We also tried using Erythromycin, which is an antibiotic but when given in a dosage smaller than that necessary to treat infection has been shown to increase gastric motility. As a result, Erythromycin should help empty the stomach quicker. Henry did not react well to the medication, so we had to discontinue its use.

We have an appointment set up in November to replace Henry's G-tube with a MIC-Key button. MIC-KEY buttons are much more common than the "bard" type G-tube Henry currently has. Since UNC sedates kids for this replacement (its not considered surgery), they will also perform an endoscopy to check for any damage. There will also be blood drawn to check various labs and for genetic testing. Although there will be many procedures performed at one time during this appointment, we are grateful that UNC has been able to work among specialists to limit Henry's visits and "doctor anxiety."

Last week we started seeing Krisi for feeding therapy at UNC. Since Henry associates hospitals and doctor visits with discomfort, the first appointment was a bit rough, but this week's appointment was much more relaxed! We've learned a couple of techniques to work with Henry and hope to see progress over the next few weeks. We are specifically focusing on spoon feeding and drinking from a cup.

In addition to changing medications to make Henry more comfortable, we are also reviewing his diet. Henry currently drinks a high calorie soy pediatric drink. There have been a lot of recent controversies over the use of soy and the negative impact it has on calcium absorption and thyroid function, especially in children. For a while, I was making my own almond milk and adding coconut oil to it to help Henry get the nutritional benefits of both with the additional calories. After meeting with the nutritionist we decided to try Hemp milk, also adding coconut oil for nutritional benefits and calories. He likes it, but we gave it a break due to some loose bowels, but we're not sure that was the culprit, so we will try again this week.

Two new corn mazes opened up within 5 miles of our house this year! We visited both of them over the past couple of weeks and the kids had a blast! The "corn box" was a big hit at one corn maze and the other had a great hay ride!

Stewart's 6th birthday was yesterday! Happy Birthday Stewart! We had a great time with some

family and friends and now we're gearing up for the "all boys" party at Frankie's Fun House tomorrow!