Got our x-ray

We went Thursday to get the x-ray and the blood test. The x-ray was fine, as I knew it would be. We have not heard about the blood results yet, but I am sure those will also be normal.

Whenever we go to Children's main hospital, I always buy Jackson a balloon on the way out. This time we got a Thomas balloon. It was the first time that Jackson has shown any normal interest in a balloon. In the car on the way home he kept staring at in and even batted at it. At home, he loves to hold on to the ribbon and can actually hold on to it for quite a while. When it is not near him, he will twist and turn so he can look at it.

Here he is with his beloved balloon...

Talked to the nurse yesterday

Before Dr. S. tries Jackson on any other meds, he wanted him to have a leg x-ray and a CK blood draw. So I called around to get it set up and went and got that stuff done today. (They got his blood on the second stick, so not too bad.)

Also, he would like to talk to Dr. R., Jackson's neurologist, to see if they can together come up with a medication that would work. I am fine with that in theory. However, it can be damn difficult to get 2 doctors in the same hospital to have a conversation...I really don't know how long it might take for doctors in different hospitals in different states to talk.

I will do my best to help things along though. And hopefully we can get things moving again soon.

Ugh! No-go on the new med

Well, we failed another med.

On Thursday afternoon, Jackson was hugging with Daddy when he started to scream and cry. Jackson is a child that just doesn't cry and fuss unless something is SERIOUSLY wrong. It was very loud and very scary for everyone involved. Nothing could comfort him and he just kept on screaming and screaming for quite a long time. We tried to figure out what was causing him pain but we could not figure it out and obviously Jackson could not tell us. After about 10 minutes, we called the pediatrician and he told us to bring him in right away. He was still screaming when we got him into the car, but calmed down soon after that.

When we got to the doctor's office, he was grumpy but calm. The only thing I could tell that was different is that he had more resistance than normal looking to the right. (He always looks to the left, but normally we can get him to look right if there is a good reason to.) I also tried to help him tell me what hurt by using picture cards, but it didn't help.

Later that evening, I noticed his left leg was a little bit sensitive when we tried to move it. I knew it was the desipramine because it is in the same class of drugs as amitriptyline, which he took a few months ago, and it caused the same type of leg pain. I figure that his leg somehow got jarred while Daddy was hugging him and set him off screaming. We discontinued the medication Thursday night.

We are waiting to hear from Dr. S. next week to find out what the next plan will be. I'm guessing a different tricyclic, but I guess we will have to wait and see.

Medication Update

It turned out that the pharmacy couldn't find a recipe to compound the desipramine because it is very unstable when compounded, meaning it will go bad very quickly and we would have to get a refill every 5 days or so. So we ended up getting tablets that we have to cut into 4ths, grind up, and put through his tube. We started last night. From what I have read about using tricyclics for pain, it can take up to 3-4 weeks to build up in the system and make a difference so right now we are just going to wait and see.

New medication starting tomorrow

The EKG was within normal limits. The nurse called in the rx for desipramine to our pharmacy, but they would not make it because it needs to be compounded. Luckily we found another pharmacy close by that will do it. We will pick it up and start it tomorrow. Keep your fingers crossed that it will help.

In other news, we quit our Lekotek program. I did not feel that the Lekotek leader was doing a good job meeting Jackson's needs with the toys she was offering. I am going to get on a waiting list for a different program that will hopefully do a better job offering age-appropriate accessible toys.

Went to CHW motility clinic today

First, let me say I am so mad at our GI office here. They told me they were sending Jackson's stuff over there months ago and it turns out they never did! So they had absolutely no history or test results at all for him! But they did write up the order to get everything transferered there.

Dr. S. was really nice, and his nurse is the best...I really love her! We were going over his symptoms and Dr. S. asked if he had been vomiting every day for over 3 years, so I said not for three years, only since he got sick...and they both had blank looks on their faces, so that's when I figured they had no records and we had to start from the very begining.

He feels that Jackson's vomiting and pain come from the Central Nervous System...which I have been trying to tell our team here for quite a while. He said that we could do one of 2 things. We can either go ahead and do manometry testing. Or we can proceed with the assumption that it is CNS related and try some more meds to try to relieve his pain that way. He said if the manometry reveals damage, it would not really change the course of treatment much (if at all) so we decided to not do the testing at this point and just try some different meds for a couple of months. If things don't change we can do testing then.

Because we have already tried amitriptyline and had to quit it due to the side effects, he would like to try a different tricyclic antidepressant. So we went to have an EKG before we left (because this class of medicines have been known to cause arrhythmias). When he gets the results of that (should be 1 or 2 days) then his nurse will call me to let me know the plan and call in the meds to the pharmacy.

I also requested to see a GI there instead of our local hospital because we have not had much luck there in having them be responsive, taking Jackson's pain seriously, and obviously they can't be trusted to send records anywhere either. (Of course they couldn't believe we wanted to drive that far just to see a GI when we obviously have a ton of them closer...but I would rather go there) So when the nurse calls I will ask her which GI she would recommend.

Don't ya just love irony...

We just got a call today from the lady at Jackson's pediatrician's office saying that his e-stim machine has been approved for a 2 month rental. She faxed the papers over to us today. Woohoo!

Unfortunately, we just switched to a different plan beginning 1/1 so we have to start all over with the approval process again!