More Appointments More Testing

Today was a busy day.

Zach had his follow up with the neurologist - well the neurologist's ARNP. I feel like it was a waste of time, money and energy - but that is just my feeling. We found out nothing really new and she wants Zach to be seen again in 2 months but by the Dr next time - Thank you that is who he should have seen today. Oh I was told by her first thing as she walked into the room - "I don't think the answers you are looking for will be found in neurology - you need the geneticist for that" THANKS --- considering Zach has a ton of neurological issues going on, yeah, I think the DR can help but not you lady!!! I was so upset by her! Not to mention she decided to look at some of Zachary's test that the geneticist ran and has me all worked up - I'm calling them tomorrow to find some answers.

Then Zach had an EKG done at the children's hospital. He did great! Laid there just as he was told, no fussing, such a good boy! The tech even gave him a matchbox monster truck - Zach loved it!

Of course it is Thursday so he also had ST today. His session went so well - he is doing something new --- repeating peoples sounds. Today Ms. Kristin said "ha ha ha ha" at something and Zach said it JUST like Ms Kristin as many ha's as she let out sound of it and all AMAZING!!!!

I think we are all looking forward to tomorrow being a no appointment day.

Week 14

I really don't have too much to say today....

Today was another day of struggles and watching Zachary have a hard time with therapy. Everything was distracting him. He looked like he was shutting down a couple of times. Today was just a rough day.

Most Wonderful Doctor

I am so happy we have found our new pediatrician. She is the most wonderful, compassionate person who loves her job!

Today I needed to take Zoe to get some paperwork for school, I also wanted to talk with her about Zachary and all that is going on. I ended up spending an hour and a half with her just on Zachary alone. Her MA took the kids out of the room at one point so we could be able to talk better.

The geneticist had already sent her a letter about our appointment and has her own concerns of what is happening. We went over the tests that she is running and why. Dr. M was also able to let me know the geneticist is going to try some type of medical therapy with Zachary when we see her in August depending on the test results.

We also talked about the GI and Zach's GP about Zachary starting this new medicine. Dr. M also has concerns over it and wants an EKG run on Zach before we start the medicine. To be on the safe side of everything. Worst case scenario the drug can cause sudden death and since Zach has so much going on she wants everything to be okay first. She also wants an okay from the neurologist before we start the medicine.

We were also able to talk about Zach's upcoming visit (this Thursday) with the neurologist and questions she wanted me to ask them. She is also calling them before our appointment.

She was able to tell me how tirelessly she has been searching for answers on what is going on with Zachary. The most wonderful Dr in the world even shed a few tears with me letting me know that her door is always open for Zachary and I to come in whether it is to cry or help him she won't stop until we know something and are able to help him become a full functioning adult.

We are so fortunate to have found her!

Found Support

I found a GP support board threw yahoo, although I haven't come across any parents of children with GP yet the people on this board have been amazing sharing their stories with me and letting me know what GP is like.

I was given a web-site that has some amazing information on it..... http://www.digestivedistress.com/main/page.php?page_id=17

I found this and just wanted to share because it made me understand a bit more of what Zach is going threw.

Symptoms:
Imagine being healthy one minute, then terribly ill with stomach flu-like symptoms the next. However, the stomach flu does not go away. You fall chronically ill with these symptoms for years; you are assaulted by bouts of daily nausea—in the most severe cases, unrelenting vomiting.

This is the picture of idiopathic gastroparesis. No one can really explain what happened to make you so sick. The medication to treat this stomach disorder doesn't always seem to help.Regardless of how one develops gastroparesis, the symptoms are similar for all. Listen to the voices of the sufferers. They can describe the symptoms of gastroparesis better than anyone can.

Mid-abdominal discomfort after eating is a frequent complaint. Some have described it as a "large rock sitting in your gut". For others, this is not just discomfort, but actual pain.
"Every time I eat, the abdominal pain is unbearable.""The bloating is horrible, I just 'balloon-up' after eating.""I'm afraid to eat, I feel so sick afterwards."

Nausea, especially in the evening, is also very common, along with acid reflux (the bitter taste of stomach acid washing up into the mouth).
"If only someone could take away this terrible nausea!""I live with this nausea twenty-four hours a day, seven days a week, I can't take it anymore."

Another characteristic symptom of gastroparesis is vomiting of undigested food many hours after eating due to the weakened stomach’s inability to properly churn and mix food.
"I wake up in the middle of the night vomiting."
Unrelenting vomiting may occur in those with severe gastroparesis.Now read what the experts say—those who treat these patients:
"Nausea and abdominal pain are the most common complaints of patients with gastroparesis." "Nausea is a very severe, debilitating symptom, and antiemetics should be used extensively." "Once nausea leads to vomiting, a cycle invariably ensues, resulting in dehydration and hospital admission." "Therapy in gastroparesis should be aggressive and extra antiemetic efforts supplied in addition to the prokinetics..."

In severe cases, people have trouble keeping food down. To stop the dramatic starvation that they are faced with, they may need nutritional support via tubes inserted into their intestines, or total intravenous nutrition. Total parenteral nutrition (TPN) means feeding not by mouth, but by a needle, and in this situation, a catheter line delivering liquid nourishment.For less severe cases of gastroparesis, all the same symptoms are there: nausea, intermittent vomiting, bloating, belching, acid reflux, pain, and loss of appetite.Other vague symptoms can also occur with gastroparesis and may be related to autonomic nerve involvement. Autonomic nerve involvement in idiopathic and diabetic gastroparesis is fairly common.

These symptoms may include:
lightheadedness (especially with body position changes),
sweating abnormalities,
difficulty in urinating,
tingling sensations in the extremities and,
circulatory changes in extremities.

1. Hoogerwerf, V.A., M.D., Pasricha, P.J., M.S., Kalloo, A.N., M.D., and M.M. Schuster, M.M., M.D. Pain: The Overlooked Symptom in Gastroparesis. American Journal of Gastroenterology 1999, 94:1029-322. McCallum, Richard W., M.D., and Sabu, J. George, M.D., Kansas City, Kansas: Clinical Perspectives in Gastroenterology, May/June, 2001

Not Yet

Doug and I have not yet started Zachary on his new medication. The doctor wanted us to wait until early next week because he was thinking Zach may have a bug with some things that have been happening to him lately. I didn't believe that for a minute as what is happening with Zach right now is no different then things that have happened his whole life.

WRONG....I woke up with a bug this morning so we will be waiting on the medication for Zach.

Man, that doctor knows everything LOL Yes, just in case this isn't a coincidence that I have a bug we will wait. I'm worried enough to start this medication with a child who isn't sick.

AH more waiting - that is all I need ;-)

Good News, Bad News.....

The good news - no feeding tube for now...Zach had some wight gain and some gain in height.
The GI was not "thrilled" but somewhat happy with this progress. He decided because Zach did have some progress to try medicine first.

The bad news....this doesn't put Zach out of the clear of getting a feeding tube. The doctor also said having gastroparesis at this age is not a very common thing and that the medication can have very sever side effects so I need to watch him closely.

The medications don't normally work very well to help GP so we have to wait (yet another waiting game) and see how Zach tolerates it. If he has any reactions to the medication we are to call right away and stop the medication then talk more about a feeding tube. If all goes well we wait until the end of October and see where his progress is taking him, then have a discussion from there.

The GI does not know why Zachary has GP, he said it could have been caused from Zach getting really sick at some point and this is the outcome or (more likely) Zachary was born with it. If it is because of the first the doctor said it will take years to go away, if it goes away. If Zach was born with it he will have it the rest of his life. The official diagnosis is "Idiopathic Gastroparesis".

I have come across a couple site from an adults stand point -- Zach is not able to tell me how he feels but I can only imagine.

http://www.youtube.com/watch?v=4zbmkjmie2Q

http://www.youtube.com/watch?v=niGsFFilZQk

http://www.g-pact.org/

Nerves...

I'm one giant bundle of nerves right now. Today is the big day, the day we find out what Zach's treatment will be for his gastroparesis.

I think my nerves are worse because of his vomiting this week and now we are also back to having very bad diarrhea (not as if it is ever much better but he goes threw stages) I don't know if he got worse just before his appointment so that Doug and I are prepared for what we may face ahead or if it is just a rather large coincidence.

We need to be at the children's clinic at 9:40am for a 10am appointment with his dietitian and hopefully they will be able to squeeze us in to see the GI, but if not we head back down there for a 2:15pm appointment. AHHH, what to do with the in between time?!?!? Can someone scream Sophie may need some shopping therapy?!?!

All anyone wants for their child is the best. I'm trying so hard to do that for Zachary but sometimes Life's Struggles just seems so much harder then they need to be.