We've been busy

March has been kind of a crazy month for us. Jackson has had a lot of appointments, and still has more this coming week. We have all been sick and then all got sick again. Here are some of the highlights...

Jackson had a neurologist appointment, that was basically a waste of time. He sees Jackson apparently only for his seizures and tries his best to ignore all other neurologically caused problems that Jackson has...such as his pain and vomiting, which of course we all consider to be number one on the laundry list. After that, I called the GI in Wisconsin to see if he could begin to implement the plan we spoke about on our conference call last month. However, he has changed his mind and now wants to try baclofen instead of one of the other 2 meds we spoke about. The worry with this medication is that it relaxes the muscles and Jackson is already very hypotonic. He also mentioned if the baclofen doesn't work, he wants to try phenobarbitol. I do not want to try this for fear it will be too sedating, and it is something than can be addictive. I was given some good advice from a couple of friends and I am going to get Jackson on a wait list to see the pain team at CHW. Maybe they can do something.

His AFOs still are not right. We go back to the orthotist on Monday and hopefully they can work it out finally. Also, on Monday we are finally getting to try the Mulholland Walkabout gait trainer. I am hoping that it will work out and we can go ahead and order one for use at home. And he is having his assistive tech eval at Easter Seals on Tuesday this week. So we will be one step closer to having a communication device for him.

Jackson is sick again

Lee and I were both under the weather with a pretty yucky virus last week. This week Jackson got it. He has been sick since last Sunday. He has been very lethargic and not very willing to smile. If it's anything like what I had, his little throat is killing him. And of course, any time he gets sick the vomiting gets much much worse.

He slept most of the afternoon yesterday...so by 4:30 this morning he was up and ready to go. He seemed better earlier today, but now he is coughing and gagging every 2-3 minutes. Hopefully tomorrow will be better still.


One more update on the HBOT...we were all set to start at the place in Rockford, but the lady I spoke with apparently did not quote me the correct price. So now, it's going to be about $2000 more dollars than they told me. The 1st place I called is about 45 minutes closer and only an extra $200, so we decided to go there. We are going to start on April 2. Pretty exciting!


And for the most exciting news....we got our van delivered! And construction is going to start on Monday for a temporary ramp for the house. Wooohooo!!

Update: HBOT and more

I have been doing a lot of research and I have found a HBOT place in Rockford, IL. It is more money than the place in Madison would be, but the drive is going to be a lot better. (Just to clarify, most major hospitals have HBO chambers but HBOT for brain injury is considered to be off-label so they will not treat for that and many other conditions.)

We are going to be cashing out my 403b retirement annuity to be able to afford this. It will also allow us to put a decent down payment on a used ramp van and to purchase a portable ramp to get Jackson into the house. The settlement seems still so far off in the distance...our lawyer says that September will probably be the earliest we will see money. Jackson is really getting too heavy (nearly 50 lbs) to carry all over. It's not fair to him or to me, so it's something we just have to do now.

The 2nd increase in lyrica has not seemed to make any difference so far. Here is an interesting article from the Journal of the American Academy of Pediatrics about unexplained chronic pain in kids with severe neuro-impairment...if you are in the mood for a little light reading.

Lyrica update and HBOT progress

I believe the increase in Jackson's lyrica has been helping him a bit in the mornings. He is not quite as gaggy and definitely vomits less. I called today to see if we could raise it a little bit more. We got permission to add another 25mg in the AM to see if that can help him get through the day a little easier. We have a neuro appointment mid-March.

Also, I have been wanting to do HBOT with Jackson for quite a while now. Today I called a local place to get some specific info on pricing and to see what the likelihood that insurance would cover it. They said that BCBS was the worst company by far for reimbursing for HBOT. Unfortunately, though I knew it would be expensive, it was about twice as much as I thought it would be and we just can't do it right now.

I called around to some other places though. I found a place in Madison (about 2 hours away) that is about $50 less per dive and they may be able to get us a grant. I really do not want to drive that far that often (usually at least 40 dives must be done to see progress) but I really want to pursue this as soon as we possibly can.

The saga of the school bus

Tuesday we had the beginning of a fairly big snowstorm. School was still on. We waited for the bus, and waited and waited. We stand in our living room at the front window, no way a bus is going to go by without us seeing.

Kept calling the bus company, were told they are still coming be patient. Meanwhile, we saw a bus that looked like Jackson's bus drive right by without stopping. I figured since our regular driver has been out, the sub must have just missed our house. He will either back up or go around the block...but no.

At 9:10 (school starts at 9) we call the school. The lady I talked to said she isn't sure what happened. She put me on hold to call the aid to see what happened. The aid told her that they had waited outside our house for 5 minutes and then left when no one came out.

Well, there is just no way that is true! We live on a narrow one-way street. It was not plowed yet that morning so no way cars could get by a bus stopped for 5 minutes. Chicago drivers are not known for their patience...they would be honking like crazy. Plus the fact that we were right there watching the whole time.

As you know, Jackson is nonverbal, can barely move, wheelchair-bound, frequently vomits especially in an upright position. Now I am very upset that I have to hand my very disabled child over to this person who I know to have told a lie. Not that I think she would intentionally harm him, but he does need someone to keep a close eye on him and he has no way to tell me if something bad happened on the bus or not.

Anyway, Jackson missed school that day because by the time I could have driven him there myself there would have been only about an hour left of school before he had to get on the bus to go home. He loves school too.

So Wednesday bus service was cancelled due to snow, but I had already decided that I wasn't going to put him on the bus anyway. So I drove him to school and then went to talk to the principal about what happened. He said that he has known this aid for 15 years and would feel comfortable leaving his kids with her. Yeah, but his kids can walk and talk and tell someone if something happens and don't have chronic health issues and need constant supervision. He said he can't switch the buses around. He said he would talk to the aid to get her side of the story the next day (she wasn't in that day) and call me to let me know what she said.

Thursday, I drive him to school again but he takes the bus home because it's a different aid on the way home. I hear from the principal that morning. He says that she says that the bus was out there waiting, maybe not a full 5 minutes but she said they were definitely there. He said he would like it if I could put Jackson on the bus tomorrow and talk with the aid. I don't like that solution very much but OK, I will talk to the aid myself.

Friday when the bus gets here (we see it right away from the living room window...go figure!)we go out to talk to the aid as we put Jackson on the bus. I wrote down my phone number on a piece of paper so she can call me next time the bus is "waiting for 5 minutes" and we don't come out or when the bus is excessively late. But she is totally sullen and has a serious attitude. She just goes on and on about how she has worked there 20 years and would never harm a child, bla bla bla. Ok, lady...I really do not give a s*** about how long you have worked there...are you going to use this phone number the next time you are "waiting" for us or not?(she is always talking on her cell when they pull up so I know she has one) She said she would, but she couldn't call us when the bus was late because she waits for the bus herself (ummm, so when you actually get on the bus maybe you could call us?)and we have a substitute driver so there might be a different driver each day.

The driver who was there said at first that it could have been a different Alltown bus we saw drive by (no, only one Alltown bus goes down our street, the rest are Falcon buses). Then he changed his story and said we should have called the bus company and they can call him and tell him to go back. (We did call the bus company 3 times and were told each time that they were still on their way).

When the bus arrived home on Friday afternoon, the afternoon aid and bus driver were surly toward me too.

I am not satisfied with the way this was handled at all by the school. The principal did nothing to make sure the bus would not leave Jackson behind again. The aid made it all about her, when it should be about getting Jackson to school when he should be at school.

Unfortunately, we feel that it would be best if I drive Jackson to and from school at least for the time being.

Sharing a picture that Jackson colored today

It's a (what else?) monkey! He gets to pick what color he wants to use. Then I help him hold the crayon, and he will move his hand to color. We made an M for monkey and also wrote his name.

Obviously the main JPD site is messed up!

But hopefully some people are still able to find their way over here without the link from the main site. 1&1, the webhost, did something to the site. I am told they are going to return it to it's previous state, but it should have been done already. I'm going to harass them again tonight after Jackson goes to bed.

So anyway, I finally got a hold of the neuro nurse. They are raising Jackson's lyrica by 25mg only at night. They are not maximizing the lyrica at this point. There is still room for another couple steps up on that. It will be a few weeks until we know if it is working. We have a neuro appointment in March so we can talk about it then.

Also, the PPI that we were rxed (generic prilosec) did not go through the tube. So now we are trying this stuff called zegerid which is a powder. It is supposed to be given at least 2 hours after eating and at least 1/2 hour before eating. With Jackson on slow-drip J feeds that could be difficult. So we are going to try it in his G tube and hopefully he will tolerate it ok and not barf it. It has to be given with 20ml water and flushed with another 20ml, which is quite a lot for someone who usually has nothing in there. I am also going to see if I can bump up the rate of his J feeds to make more time to give it though the J.

In other news, the vaccine case is almost almost done. We are still not in agreement over architectural costs and there will be a hearing here in Chicago in March in front of the Special Master to decide this issue. Then it's done. Also we think we have a trustee picked out. We are meeting with them next week.

A new plan

I spoke with Dr. S. on Wednesday. He said that he and Dr. R. had spoken the day before.

First, he and his colleagues were very puzzled by Jackson's reactions to the tricyclics. He said that to have pain in the limbs is very rare with these medications and then to have it in only one leg is pretty much unheard of. That seems to be the way it goes with Jackson.

He said he and Dr. R. believe that seizures could be causing the retching (although the last VEEG we had really did not show that there was any correlation...whatever! ) so the first thing they would like to try is to raise J's keppra to maximum dosage. (Jackson is on 2 seizure meds though and I am kind of hoping they want to raise the lyrica first. I called Dr. R's nurse and asked exactly what were they going to raise...still waiting to hear. Hopefully we will hear today, I would hate to have to wait all weekend!)

So if that doesn't work, we can then decide between 2 options. The first option is to try another tricyclic (aside from the desipramine and the amitriptyline we have already tried).

The other thing we could try is a medication called marinol, which is a cannabis(!) based med used mainly for vomiting and nausea during chemo.

Also, he would like to see Jackson start back on a PPI. He has been on quite a few different PPIs in the past but stopped since they never seemed to do anything for him. Dr. S. said at least it could help to protect his esophagus from damage. He also said it was ok to put the PPI in the J tube, it would still work. I did not know that.

So I am happy that there is a plan in place...although I would be really happy if it was a plan that was actually going to work this time. But at least we are trying something, which is better than trying nothing.


Also, we went to get Jackson's AFOs adjusted today. He needs to be able to lock out his knees so he is able to stand. By design, AFOs are made to prevent people from locking their knees. Last time, the orthotist just took some of the material off the bottom of the heel and that was enough to let him stand better. This time, there was not enough material on the heel so she built up the toe instead. Unfortunately, she could not build it up enough to be effective without making it so big that it won't fit in his shoe...so they are going to be remaking his AFOs.

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!