The Story of Grady's 2nd year

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August

January 13, 1999

Grady has been having a really rough time since about mid-December. There's regular crying that we don't like to hear of course and then there is the pitiful sounding crying that breaks your heart. Recently we've had more and more of the latter kind. He has cried and thrown up so much that he is hoarse. I've been on the telephone a great deal lately talking to the various doctors and their nurses trying to find the cause of Grady's pain. There are several possibilities that will take time to work through but I hope we find something soon! We've scheduled an endoscopic study of his GI tract for the last week of January to see if the reflux is worse and is the source of the problem. It is a very quick procedure where the GI doctor takes tissue samples at various sites along the track to see if there is inflammation. The GI doctor said he had a pretty low threshold for when he decided the procedure was needed so he is pretty agressive about these things. The most worrisome part is that Grady will have to go under general anaesthesia for this procedure. I hope to convince the neurologist to be a bit more aggressive in the meantime and at least do an EEG, especially since Grady has now clearly had some seizure activity for three consecutive days. I've scheduled an appointment with a more agressive neurologist but we can't get an appointment until the first week of February.

Encouraging letters and email would be greatly appreciated right now (even if I don't already know you!). Unfortunately you probably won't hear back from me for a while. Phone calls are a bit harder to fit in. A special hello to Valerie from New Hampshire. I got your phone message and would really like to talk to you too about Reuben. I'll get back to you as soon as I can pull myself together!

January 20, 1999

This past Friday, the 15th, Grady had a prolonged seizure while at Child's Way that lasted 27 minutes. By the time the paramedics arrived to take him to the ER the seizure had stopped. I suppose if there is a good side to it all, at least he was examined by a neurologist while at the ER. A blood test showed that his depakene level was below the therapeutic level and this in combination with possible withdrawal symptoms from the other seizure medications (phenobarbital and klonopin) may have all contributed to the severity of the seizure. This neurologist told us that given the length of time Grady was on these other seizure medications that it wouldn't be unusual for him to be irritable and not sleeping well and that these were typical withdrawal symptoms. She said that this should be clearing up sometime soon. It would have been helpful for our regular neurologist to have mentioned this!

Although Grady was understandably quite upset by the seizure and didn't like the ride in the ambulance, he actually seemed to enjoy his visit to the ER! Once his initial exam was over I was able to calm him down quite easily and he tolerated the rest of the examinations quite well. While we were waiting, and we did a lot of that, Grady was very calm and alert and we actually got in a little playtime.

Since Friday, Grady has had no more seizure activity and although he is still quite touchy, he seems to be feeling a bit better. He is still throwing up quite often and often has congestion in his throat and nose.

February 4, 1999

Hurray! Grady is finally feeling better after 2 months of increasing agony. It seems that most of the problem with the irritability was a GI problem. He hasn't thrown up or had diarrhea since Saturday morning (Jan 30) about 16 hours after we changed his reflux medication and formula! He is also sleeping well at night once again but is still having problems taking naps during the day.

We had no more big problems with seizures after the visit to the ER on Jan 20 but Grady still wasn't feeling well and while he had been throwing up and having some diarrhea since at least late November it kept getting worse. The endoscopic study and biopsy of his GI system on Jan 27th showed that the pylorus (the muscle between the stomach and intestines) and the duodnum (the first part of the intestines) were inflammed, that he had some esophagitus and that he wasn't absorbing fat very well. Since Grady was at the maximum doseage of zantac, his GI doctor treated the esophagitus by switching to prilosec (it doesn't come in liquid form so we have to dissolve it in sodium bicarbonate to put it down Grady's feeding tube). The problem with absorbing fat was probably due to the inflammation in the duodnum but there is no identifiable underlying cause for that inflammation. With the pylorus, he suspected that that inflammation could be due to the J tube that passes through from the stomach but again there is no way to be certain. Since there was no infection or signs of allegry, the doctor wasn't sure how to treat the inflammation. Basically, we're just giving it some time to see if it clears up on its own. He told me that sometimes the immune system will keep attacking weeks or months after a viral infection is gone and that this could be the cause. Since the inflammation was making it hard to absorb anything useful out of the formula (and hence the diarrhea), the doctor also changed his formula to Alimentum which is much easier to absorb. We made the changes in medication and formula on Jan 29th and he hasn't thrown up or had diarrhea since the morning of the 30th! That he stopped throwing up was quite unexpected. His GI doctor said that zantac can sometimes have a side-effect of vomiting!

We also visited a physiatrist (a doctor of rehabilitative medicine) on Jan 22nd. I was quite surprised to find out that the two seizure medications we had weaned him off of in the last few months (phenobarbital and klonopin) have anti-spasticity effects. In fact, klonopin tends to be the fourth choice of drug for treating spasticity. Spasticity (resistance to passive stretching) can be painful and since Grady no longer has any treatment for this problem, it could contribute to his irritability. Although the cessation of vomiting has made Grady a much, much happier fellow, I can tell that he does seem to still have some discomfort and so we will try baclofen to treat the spasticity once his GI system has had time to recover from the inflammation. The GI doctor suggested that we wait 2-3 weeks and the physiatrist agrees with him.

It seems as though everything went wrong at the same time but I realize now that since we didn't have specific enough symptoms to treat, we had to examine all the known problem areas. In the process of examining everything closely, we found adjustments that needed to be made in things that weren't necessarily the leading cause of the symptoms.

February 10, 1999

We had a follow-up visit with the neurologist on Feb 5th. Grady's blood test showed that his depakene level is just within the theraupeutic range. Also his liver enzymes are elevated but that may be for other reasons. Anyway, in anticipation of starting baclofen (which increases the risk of seizures) to treat his spasticity, the neurologist wanted to get Grady's drug level a bit further into the theraupeutic range. I told the neurologist that Grady had had no more clear signs of seizure activity since his depakene doseage had last been increased. I later found out that he has been regularly having about 3 seizures a day while at daycare. I assumed he wasn't having any since they didn't mention them and I suppose they assumed I was seeing some at home regularly and so it wasn't necessary to tell me about so few seizures. I must not be interpreting Grady's activity properly since I haven't seen anything that looks like seizure activity during the weekends. The activity that I questioned wasn't seizure activity according to the neurologist. Anyway, although we did get back to the neurologist and straightened out my erroneous report, I assume his response would have been the same which was to increase Grady's depakene doseage further.

Last night Grady had a grand time imitating (with my help), the big gestures that Brian was making with his arms. He had a really big smile for this game. Grady also likes sitting up better than lying down these days. He will either sit on my lap or in the well made when I sit cross-legged. He doesn't like the bouncy seat or the infant seat for very long. They don't automatically adjust the way I do! I think he has discovered that he can see more when sitting up or else the inflammation in his tummy doesn't hurt as much in this position. He will occasionally fall asleep in the sitting position. For some reason he doesn't like sitting on Brian's lap or resting against Brian's shoulder. I guess Brian is so entertaining to watch that Grady wants to have a good view of him at all times!

Since December, Grady hasn't had much to say. He is starting to vocalize a little bit again and to laugh again sometimes. Yesterday when I asked him if he was finished sleeping he grunted at just the right moment and it sounded so much like "uh-huh" that I responded without thinking much about it until a few seconds later. I realise that he doesn't have enough context to actually have understood my question and that he doesn't have enough context to know that you should say "uh-huh" in response to a question. I'm becoming more convinced that eating and manipulating your own environment must be important foundations for learning in general!

In the last two weeks, Grady has rapidly lost weight. He has lost 12 oz in 2 weeks and before starting the Alimentum he had been losing a few ounces now and then. Grady now weighs just 18 lbs and 4 oz. The GI doctor anticipated we might need to make an adjustment in his intake but he was thinking that Grady would either start gaining since he would be getting more out of the Alimentum or he would hold steady because the inflammation is using up some of the calories. I think the doctor will be surprised to hear that Grady has lost so much in 2 weeks. I increased Grady's intake some yesterday but I don't know how much we should increase it so I didn't want to push it up too much. I expect to hear back from his GI doctor today about how much too increase his intake. Given the rate at which Grady is losing weight and the fact that it takes 3500 calories to create a pound of fat, Brian calculated that the increase should be another 140cc a day just to maintain his current weight. However, this is probably inaccurate since there are probably a lot of other factors to consider.

Grady has a lot of teeth now. His two lower molars came in before most of the rest. I thought those generally arrived last. I hope we soon get a chance to have him put these teeth to good use. We want to do another swallow test before we start with solids again and I suppose it might not be a good idea to give him solids while his GI tract is inflammed.

Grady is also starting to get back on track with his therapy. As you can imagine, he hasn't been too happy about his therapy sessions in the last few months and he was often impossible to work with. He just wanted to be held and rocked and otherwise left alone. Grady's therapists from the Children's Institute and the Alliance for Infants and Toddlers, and the Child's Way staff are all amazing people! They keep trying to find something that Grady can either enjoy or tolerate and I know that the crying gets to them as well! He is often still quite a handful during the day at Child's Way. They try very hard to make him as comfortable as possible and worry about him almost as much as I do!

March 24, 1999

Grady is doing fairly well but we're still trying to get his seizure medication adjusted properly. When the neurologist increased the doseage to get Grady further into the theraupeutic range it went too high and of course his liver enzymes went up too. In response the doctor decreased the depakene doseage back to what it had been in February. Grady has a very high hemoglobin count so all the doctors think his blood volume may be too low and that this is making everything too concentrated in the tests. We're giving him extra fluids now to see if that is the problem. If not, then we will have to take him off of this medication and try something else. We switched neurologists recently and the new one suggested some other medications to try that the other one hadn't. All of the anticonvulsants have side effects but I think if we change it will be a relief not to have to worry about the possible damage that is being done to Grady's liver.

It is now much easier to get Grady to smile. I've expanded my range of silliness accordingly. I now jump around in addition to making loud, silly noises. He still isn't vocalizing as much as he had been. He still likes to sit up on our laps better than laying down. He is doing a bit better with tolerating his therapy sessions too but I cut down on the number of them because I was concerned that it was too much stress for him right now with the GI inflammation.

We've all had a virus and Grady also had an ear infection this past week. Grady had made a lot of progress in recovering from the GI inflammation, I think, but the virus and the antibiotic has undone some of the progress. He was starting to make steady weight gains but then when the virus and fever started he lost most of his recent gains.

The opthamalogist thinks Grady has made enough progress in his visual development that we can work on trying to get him to use his left eye more. He tends to favor his right so we've started patching his right eye for a few hours each day. We could see the favoring earlier but the opthamalogist didn't want to patch too early and possibly disrupt his progress.

April 2, 1999

Since the last entry on March 24th, Grady has been having problems with prolonged seizures. He has had 2 within a short period of time.

Grady went back to Child's Way on March 24th after his fever from the virus seemed to finally be gone (it kept coming and going over a 7 day period). On the first day back, he had some wheezing and I took him once again to his pediatrician. She decided that he might have RSV (but tests were negative) and some bronchialitis but she found that the congestion was mild. As a precaution, we started nebulizer treatments with albuterol. The next day back at Child's Way, March 25th, Grady had seizures that lasted an hour and because he was blue around the mouth with a low oxygen saturation level (even with blow-by oxygen) he was sent to the ER. The seizures were over by the time we got there but he was admitted that night for observation. He continued with breathing treatments (albuterol) and they (we) monitored his oxygen saturation. He had no more problems with seizures or breathing so we took him home Friday night. The doctors increased his depakene dose a little in response. Grady seemed better although we all still have the virus that started in mid-March. Everything seemed to be going fairly well until he had another prolonged seizure at Child's Way on March 31st. The seizures and breathing problems were the same but only lasted 30 minutes this time. Once again we went to the pediatrician and this time she and the neurologist decided we should treat him for partial seizures and added tegretol to his chemical stores.

Grady seems tired still. It will take 4 weeks to get the tegretol up to a theraupeutic dose. I'm not sure when or if we'll be replacing the depakene that treats the infantile spasms.

April 15, 1999

Grady seems to be doing alright with the tegretol so far. We're still working on slowly increasing the doseage to the theraupetic range but so far he has still not had any more prolonged seizures. He does, however, seem to not be feeling well still. He had still been looking pale and tired but this week his color is better. In his previous blood tests, his liver enzymes dropped some and his hemoglobin count isn't way above the normal range anymore. It seems that the extra fluids (plain water) helped and that he was chronically dehydrated (probably from all the problems at the beginning of the year) which made his blood too concentrated. He is still tired though.

When Grady was in the hospital in March, we had a consult with a GI doctor. The ER doctor and our pediatrician were concerned that he might be having micro-aspirations from reflux and that this might have caused the bronchialitus. The GI doctor recommended that we change his feeding tube so that we have one with a venting port. That way we can drain off some of the mucous and saliva that collect in his stomach. She said that his current medication was very good at almost completely neutralizing the acid so we couldn't do much better in that regard. She did however have us start giving his prilosec doseage all in the morning and added back zantac at nighttime. I'm not sure what the rationale for this was. I didn't think to ask that question at the time since I was tired. We did have the stomach tube changed last Tuesday since he was scheduled to have the j-tube replaced then (that is routinely done every 3-4 months). To replace the G-tube that the j-tube goes through, is much more involved. They had to sedate him since to retrieve the type of tube he had you have to bring it up through the throat. Since the new G-tube has 3 valves that are on the outside, you can't place it by going down the throat and then out the hole in the stomach, it has to go through the hole and into the stomach. The new tube has a little donut shaped balloon that gets inflated once the tube is in place to keep it in place whereas the other one had a small built-in plastic disc. One of the valves on the outside of the new tube is used to inflate the balloon with about 8ccs of water. We've been attaching a bag to the vent at nighttime and Grady seems to be coughing less at night. The downside of all this was that Grady had some problems with the sedation (it took him about 3 hours to come out of it) and of course the hole in his stomach is irritated and tender but it is looking better this week.

We went for a functional vision evaluation on Tuesday of this week at the Western PA School for Blind Children on the recommendation of our opthamalogist. Grady actually enjoyed the activities during the evaluation and was much more engaged by it all than I expected. I was quite surprised especially since he has been more fussy and edgier than usual these last few days. I didn't expect to learn very much since Grady regularly works with a vision therapist and we've been routinely seeing a therapist whose specialty is CVI. But it was helpful. I noticed a lot of subtle responses from Grady that I'd been overlooking. And sometimes when I thought he needed help picking up his head, I now see that he sometimes drops his head on purpose to get a different view. Also, sometimes when I thought he was just staring off in space, he is actually looking at something. You can tell if you move the object really slowly and he follows it with his eyes. And although I knew that Grady has trouble with gross motor control, I can now see how to let him experience some cause and effect better with switch pressing. If I hold his arm in place just above the switch, he can press down and let up on the switch himself. This isn't quite as involved a movement and is a lot less frustrating for him than expecting him to always pick his arm up and position it himself before pressing the switch. So I'm happy that it was a useful couple of hours. I also see the need for some better seating at home so that I can work with Grady better. I'm a lot less successful at home trying to do any therapy while Grady is sitting in my lap. I think you need 4 hands if you don't have a good supported chair. We do have an evaluation session scheduled in early May with our OT and a vendor so that we can find the right kind of chair for Grady.

May 31, 1999

I almost missed having any entries for May! Grady's health is much better now. We had to cut back the depakene doseage because in conjunction with the Tegretol, it is more likely to cause irritability and Grady was having a bit of that at the end of April. We also stopped the zantac around the same time and went back to just using Prilosec to reduce acid in the treatment of his reflux problems. I think Grady must have an unusual reaction to zantac because his irritability greatly improved after he was off of the zantac for 2 days. This was even before we cut back on the depakene.

We took a trip to VA last weekend to visit my parents. This was Grady's first visit to my childhood home. It is an hour from the airport and Grady still often doesn't like riding in the car. He does quite well on the plane however since he can sit in our laps. We have flown with him 4 times now. We thought that we were all finally ready to try the one hour car trip. The trip to VA went smoothly for Grady (it never does for us adults regardless of whether Grady is with us or not!) but on the one hour car trip back to the airport, Grady screamed the whole way. We stopped once to give him a break. After arriving at the airport he trembled for about a half an hour. The rest of the trip went fine for him. Unfortunately he developed a cold a few days before the trip and at first thought it was just allergies. Fortunately it seems to have cleared up quickly and didn't cause any extra problems. It did probably made the trip a bit more stressful for him.

We had a return trip to the opthamalogist this past week. The patching of Grady's right eye did the job. He now uses his left eye as much as his right. Unfortunately though, his eyes aren't aligning well as he moves them. It is time for some eye surgery. It is just an outpatient procedure but before we schedule it, we will check in with his other doctors to see if there is anything else that needs to be done while he is under general anaethesia.

We also did a wheelchair evaluation earlier in the month and selected a KidKart. It has all sorts of customization options so that Grady can get support in all the places he needs it. During the evaluation, he did very well at holding up his head and moving his arms with the supports provided. We also will order a tumbleform chair and tray for play/therapy time and a stander. We had looked at standers prior to Christmas but had to put it on hold since he wouldn't have tolerated it will while he was having so many problems.

Unfortunately we can't yet submit the paperwork to the insurance company because the supplier hasn't gotten on the preferred providers list even after having their paperwork in for over 2 months. Also, in the past we had a case manager at the insurance company and she has since left. We are trying to get a new one so that his referrals and claims can be handled by the same person instead of someone different everytime. Until we get a new case manager, there isn't much point in submitting a request for the equipment we need. The odd thing is that the insurance company seems reluctant to assign us a new case manager. In fact, they don't even have a record of him having had a case manager nor do they have a record of the woman who was his case manager. However, I know that she existed and was an employee of the insurance company! I'm really mystified by the insurance company's handling of this!

We decided to go ahead and pay for the tumbleform chair and tray and risk not getting reimbursed for it. Grady really needs good supported seating right now!

June 29, 1999

Once again I almost missed making an entry for the month. Grady is still doing alright (but not great). We're weaning Grady from depakene for the treatment of the infantile spasm seizures. Grady's liver enzymes have remained elevated and the neurologist is no longer comfortable leaving him on it although the levels aren't dangerously high. We held off a bit on changing his seizure medication because Grady seemed to be feeling better than he had and we wanted to give him a break. We expected that changing medications would most likely immediately end this. He seemed to be happier and was tolerating his therapy sessions better. However, it was only a few weeks before he clearly was starting to have break through infantile spasm seizures and to be feeling worse. We hadn't been able to increase the depakene doseage because of the side-effect on his liver and so he had probably outgrown the doseage. The seizures were primarily difficult for him when he was trying to fall asleep since state changes often seem to be triggers for this kind of seizure. Just as he'd fall asleep, a seizure would reawaken him. For a couple of weeks it took him several hours to finally get asleep enough that the seizures would stop reawakening him. The pediatric neurology journals report that using small doses of melatonin 30 minutes before bedtime has helped with problems in sleep patterns. We tried it for about a week. I'm not sure if it actually helped or if the new seizure medication (Topamax) was finally at a high enough level that it was starting to provide some control.

We're still introducing the Topamax and weaning depakene for the infantile spasm seizures. Although Grady is having an easier time getting to sleep now, he is still having the seizures regularly. I really can't identify with certainty when exactly he is having a seizure and when he is having problems with spasticity. He rhythmically moves his right arm a lot. Most of the therapists interpret this as intentional but I'm not entirely sure.

We went to a 1.5 day seminar at the Western PA School for Blind Children. The sessions were all very helpful, but the most helpful thing was to meet the other parents and their children. Sometimes you don't realize that anyone else is experiencing so many of the same problems figuring out the medical system and community resources. We also learned to better appreciate how tough therapy sessions are for the kids and how things appear to them because of their special needs. I think we all try to imagine how things must be from our child's perspective but there are many things you just don't have enough experience to even begin to imagine on your own. So we learned many useful things from the seminar and from one another. We had some fun too. The school had a picnic/carnival for everyone Friday evening. The highlight (besides large quantities of yummy food) was the puppet show. The puppets were very large so that the children would be better able to see them. Grady closely watched the entire show and I think his favorite was the puppet swinging on the trapeze. I think Grady wanted to join him since he likes to dangle upside down too.

We still don't have the KidKart yet. I think that all the paperwork is finally in and that we are probably waiting for the insurance company to deny the request so that we can send it to the state. Special supported seating is very expensive! We did go ahead and buy a tumbleform chair and table as it wasn't as costly. We hope to get reimbursed for it later.

We've scheduled Grady's strabismus surgery for August 23rd. I hope the recovery isn't too painful for him (or us). The literature from the opthamalogist warns that there is discomfort after the surgery. It doesn't say how much or for how long! The surgery is 80% successful at correcting the alignment. I hope that it helps enough so that Grady might be able to use both eyes together and so that he is less likely to see double.

I need to take Grady to the dentist and our pediatrician gave me the number for the dentists at Children's Hospital. Grady has ground down his upper teeth a lot. I'm wondering if his teeth are extremely sensitive now because of this. I just haven't had time to fit in anymore medical visits. He seems to need some ibuprofen and a small dose of benadryl at least once a day.

July 22, 1999

Infantile spasm seizures are still a problem. Grady had his last dose of depakene on July 12th. On July 1st, his liver enzymes were nearly back to normal. They are so close to normal now that they don't consider them a problem anymore. I had just assumed that the levels would go back to normal when we stopped the depakene. I'm glad it didn't occur to me to worry about this!

Since we took Grady off of depakene so quickly, he doesn't yet have a functioning substitute medication for controlling his infantile spasm seizures. He should be up to a therapeutic dose of topamax by the end of July. It is still difficult for me to distinguish Grady's intentional but abnormal movements from seizure activity so I can't confidently say whether the seizures have changed. With that in mind, I'd say that they haven't gotten worse and may actually be a bit less frequent.

Grady is still frequently irritable but more so when he is tired. There were times when the usual holding and side-to-side rocking that he is fond of did not comfort him at all. I frequently feel battered afterwards by Grady's squirming and thrashing around during these times so I can imagine he must also feel that way too but to a much larger degree. We have found that small doses of benadryl and ibuprofen give him some relief during these times and it allows him to sleep better. We have been giving these non-prescription medicines only as needed but unfortunately for Grady it seems to be needed every 8-12 hours.

Grady is also experiencing tremors in his legs. I don't know if this is seizure related or if his baclofen doseage (for spasticity) is too high. We will see his physiatrist next week. This is her specialty.

We still haven't placed the order for Grady's kidkart (a hybrid stroller and wheelchair). The vendor we worked with originally still isn't a preferred provider in our insurance network. Our insurance case manager arranged for us to work with a different vendor. We will recheck the measurements on Wednesday before officially placing the order and sending on the paperwork to the insurance company. Once the insurance company approves, it will take 5 weeks to get the kidkart.

We may have to consider special seating in the car as well. I don't know what the options are for this. Grady is once again crying in the car all the way home. He tends to jam his feet into the back of the seat (he is rear-facing still) and I'm sure that probably hurts!

There is a small tidbit of exciting news for this month! I'm now convinced that the rhythmic movement of his right arm is more usually intentional. He does it much more consistently when something is nearby and on a good day he did the exact same thing on his left side as long as I sat to his left and there was something to swing at. I think he has a tendency to prefer the right because his vision in his right eye is consistently better.

August 24, 1999

Grady was extremely ill at the end of July. He was admitted to the PICU with a fever of 107 F. They suspected pneumonia, or a bacterial infection but all the tests were negative. They finally ruled that it was the work of a virus. He was in the PICU for 24 hours and then in a regular unit for 4 days. They had to use a cooling blanket to lower his temperature and he was completely out of it until he left for home. It was a very shocking experience for all of us! He seems to pretty much be back to his normal.

Grady had strabismus surgery yesterday. The opthamalogist repositioned some of Grady's outer eye muscles so that is eyes won't splay outward so much went he moves them. Grady seems to be doing fine although he looks terrible. The outside part of the whites of his eyes are bloody. The opthamalogist said it is a little bit a blood leakage from the surgery and that it will dissolve away in a few days.

While Grady was under anaesthesia for the eye surgery, the GI doctor repeated the endoscopic exam of his GI tract since his throwing up has increased recently. Visually everything looked fine. The pylorus is no longer swollen but there is a little redness of the esophagus. It the biopsy results show inflammation then we will increase his doseage of prilosec to reduce the acidity of the reflux more. The doctor could also see that Grady has a hiatal hernia. I don't think there is anything that can be done about that.

August 31, 1999

Grady saw the opthamalogist this morning for a post-op follow-up. The doctor said that Grady's alignment was very good and that Grady wouldn't need anymore eye surgery. Hurray!

Also, the biopsy results of the repeated EGD are back. Grady still has some inflammation of his esophagus and duodenum but it is much improved compared to back in January. It sounds as if his esophagus and duodenum are almost back to normal. The GI doctor isn't going to change any of the reflex medications right now. We need to rule out an upper respiratory infection as the source of Grady's increased throwing up.