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HHUGS In the News The Melbourne Diaries |
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Between 1997 and 2002, Prof Jeffrey Rosenfeld operated on 28 children at the RCH. Click on the names of the children below and read about their experiences... Surgery #8: Joelle (Date of Surgery: 17 May 2000) Surgery #10: Krystal (Date of Surgery: 23 August 2000) Surgery #12: Christopher (Date of Surgery: 10 October 2000) Surgery #13: George (Date of Surgery: 22 November 2000)
Surgery #8: Joelle Monday
15 May They had to prick Joelle’s fingers
every 15 or 30 minutes for the endocrine and lh rh tests. We found out she
is anaemic so Dr Harvey ordered further iron workups later in the week. We
have many, many emotions and thoughts about the surgery, but we are so
close so what’s the difference. Wednesday 17 May 2000 She looked fabulous just out of surgery. Now she is starting to swell and turn orange in the face. It seems that a lot of her head was shaved too. She has been responsive enough to take a pill out of my hand and a glass and swallow it. Really good, but I am still scared as she keeps shivering, even though I have put a ton of blankets on her. Remember, the hypothalamus controls body temperature. Her vision has been blurry, but I think it is getting better. She has had about 5 small jerk type episodes, but none recently. We are told these things can be normal, we will see, as this type of seizure is not associated with the tumor that was removed. 10:15pm Joelle woke a bit and said "holy cow my hands are cold!" things are looking better.
Joelle is doing great considering. She has been running a temperature between 38-39 today. They are trying to regulate that with intense iv settings and Tylenol. It was between 39-40 yesterday so I hope that it is improving. She is also exerting too much liquid,
so they are trying to regulate that with a replacement hormone via the
nose. It is called Diabetes Insipidus, and was expected and may go away in
time. This also involves high sodium levels - the spray is supposed to
solve that too, but hasn't yet. Other than the temperature and
uncomfortableness that is associated with that Joelle is doing great. She
has not laughed much (literally), but is speaking and moving and eating
well. The other problem is that Joelle is gaining weight and eating like I
have never seen. Her stomach is in pain, and she is on constant laxatives
that are helping a little. Apparently the steroids cause this and will end
in a couple of days. Traci and I cannot believe we are actually here and the surgery is over, and was successful and we are just dealing with seemingly and hopefully measly details. It really is unbelievable but we will not exhale until her temperature is under control and a few good days go by. Joelle had what are labelled motor seizures a few times up until today, where her limbs would move uncontrollably (somewhat similar to the after effects of a normal hard laughing seizure, but a little different). The good thing is that this did not start out as a laugh, nor has Joelle had a single laugh or anything resembling a seizure that is specific to the tumor, since prior to the surgery. The surgeon thinks that since the seizures were different than those prior to surgery they should subside. I somewhat agree since her sodium levels were high (making the brain over electric lowering the seizure threshold), her temperature was at or near 104 during each episode, and they were all within 48 hours of the surgery. She has not had one since 2:45 yesterday (Friday) afternoon. The other theory is that her damaged left brain has become eleptogenic. We came here to get the tumor removed. That is done, and we are totally amazed and overwhelmed with that. If the latter is true, then that will be a whole new battle, that hopefully would not be as challenging, or with such severe symptoms as the tumor had. Joelle is shaved like the clown with no hair on the top of the head but longer on all the sides and back. That will be hard on Joelle I am sure, as we always tell her how beautiful she is. They tested Joelle down here and found out she has an iron deficiency. That explains her paleness. They also put the iv in her foot so they wont let her walk. It is impossible to get another line in so we have to live with that. Last time they had to take her down to ICU and give her nitrus oxide in order to get a line in…and it still took at least 10 minutes of digging with the needle. Pure torture without anaesthesia of any sort. They now are doing finger pricks every 4 to 6 hours to measure sodium levels. Joelle’s memory of recent things
seems to be affected and should get better as others (Rebecca Faulkner)
had this with her surgery and it went away. She keeps asking where Mommy
and Spencer went, over and over and other things. Dr. Harvey says it takes
some time for the brain to reorganize itself. We are missing home very much. I told
Traci tonight I am even missing the Ronald McDonald House - at least there
we can all sit back as a family and do nothing, and believe me that sounds
wonderful right now, as I despise hospitals and my daughter being poked
and prodded all the time. Monday
22 May 2000 They took the iv out. We tried to get her to move around, but she is very wobbly. We gave her a bath then she played a while sitting in the playroom. She was on edge like Joelle can be the whole evening. At about 8:00 Joelle went into a seizure like we have never witnessed. We could tell it wasn't going to be short. Her eyelids were flickering, tongue twitching, arms straight out with her fingers twitching. They had to use a suction machine to get the saliva out. She salivated like crazy the whole time. I told the nurses that we were advised to use the rectal Valium if a seizure lasts more than 5 minutes. They finally administered it after about 10 - 15 minutes of Joelle doing this. After about 45 minutes the Valium (which is supposed to knock her out) started to put her to sleep. Her mouth and tongue had twitching up until about 1 hr. then she fell asleep. About 1.5 hours later she started to move her limbs a bit as if she was adjusting them in her sleep. She wet the bed all night and was completely out of it after the seizure, and Valium for most the night. This morning (Monday) her swelling is down a lot, she is much happier but still edgy. I tried to take her for a walk for about 20 minutes. She wanted to do it on her own, but she would have fallen. I brought her back to bed and she fell right to sleep. She has gained at least 4 kilograms (around 8 lbs) since we have been here. She is heavy. Today is the last day for the steroids so we hope that will end soon. Her temperature is still steady at 101 to almost normal. She never did swell after surgery nor did she turn yellow. She has looked really well.
She is still a bit wobbly and needs to be kept a close eye on. She took off running to see a arcade game on the way to Mcdonalds yesterday evening! We haven't noticed any seizure activity! Her temp got down to 36.6 last evening; the lowest it has been. She still gets a bit warm intermittently, but Tylenol seems to help a lot. It looks as if she may need to have ddavp (nose spray) for diabetes insipidus, which means she will pee too much fluid, leaving too much sodium in the body which can be dangerous. This may be temporary, but we are going to take things as if they are permanent for now since we likely will leave the hospital after two more nights. They are also going to keep giving her some sort of steroids in pill format until we are back in the US to be safe. Apparently this is Cortizol, which the pituitary naturally produces. Today Joelle thanked God and the doctor's for her seizures going away. This evening Professor Rosenfeld came in, and we told her that that was the doctor who made her seizures go away and she could tell him thank you in person now. She said thank you in the sweetest voice, and then Professor Rosenfeld asked if he could have a kiss, and Joelle puckered up and they kissed. We and Professor Rosenfeld had to hold back the tears. Every waking hour when Joelle is not
doing anything she whines about being hungry. After 8lbs, which is 20% of
her body weight gained, we have realized she is not actually hungry. We
are told this can last for a few days, to weeks, up to several months, or
can be permanent. The most likely is several weeks to a few months. The
best thing is to do what we need to do prevent overeating. Apparently
there is no magic drug that will reverse the effect if this does turn out
to be permanent. I feel like once we get through the
details here and any further postsurgery related seizures that may occur
that Joelle will have a new beginning. I hope she is not too old already
to catch up and get the basics down. Maybe she will start asking the why
questions that she never did. Her vns has been off and she seems to be
normal in terms of behavior, rage, etc.. I just want to emphasize, this trip to
Australia, already is the best thing that has ever happened to our family,
after its inception. God worked wonders through Mr. Rosenfeld. For years I
searched and searched, tried experimental methods to damage the lesion. I
sent her films to France, Canada, Loma Linda (proton beam), University of
Washington @ St. Louis, Harvard, Pittsburgh, Alabama, Midwest Gamma Knife
Center, consulted with Cleveland Clinic, Johns Hopkins, San Diego Gamma
Knife Center, Cincinnati, and several others. All of which I got maybe's
and possible's to doubtful's. I ever wanted to give up. Te first internet posting I read from the Faulkner family, has definitely paid off. It was Craig and John Lamp of whom I first made contact with prior to this group starting. I never imagined that it would lead to this miraculous event. Joelle’s tumor (which was one of the largest and worst in the group) is now gone. Unbelievable. Thanks be to God. Joelle’s seizures which were always occurring 1.5 to 3 hours, are now completely eliminated. Thanks be to God. Everyone in this group should feel comfort, excitement, and joy. Our day is here. We now have a cure. These tumors are definitely not inoperable anymore. hhugs - is changed to h only for us
now. The hugs were eliminated from her brain, and moved to her arms, and
heart. I have felt it. You should do this for your child. They may never
really appreciate it the way they should, but we will know.
We hit the sack at 8:00pm woke at 5am,
best sleeping Ii've had in some time. Joelle is still sleeping sound, no
stirring or waking like pre surgery. It’s funny that she now talks in
her sleep. I hope that means she is actually getting to a deeper sleep
than post surgery. She is still a hunger maniac, and her short term memory
is improving. We may consider a drug to curb the hunger to get her through
the next few weeks. Hopefully Joelle has the same problems as Rebecca did,
if so they should end in time. I do know that I'd much rather tackle an
appetite issue, than the seizures etc.. since it seems like everyone is
trying to find a solution to it. Joelle is still seizure free and doing fabulous! Finally something has paid off.
Surgery
#10: Krystal Friday 10 August 2000 We got here to Aussie on Monday morning. Krystal had a eye doctor appointment and we spoke to Dr Harvey. Tuesday she was admitted for eeg monitoring. We got 3 tonic clonic seizures on tape in less than 24 hours. .She had her SPECT test under general anaesthesia on Wednesday morning. It went well and she was discharged and we took her to the motel we were staying at. Thursday Krystal had an MRI under general anaesthesia. It went well. Thursday evening we made it into the Mcdonald House. This morning she had her psychological testing...we had to go back in the afternoon because Krystal had two big tonic clonics and couldn't finish the testing. We may still go for more testing on Tuesday. Monday we speak to Professor Rosenfeld and Wednesday afternoon Aussie time will be her surgery. The people here are wonderful. Very nice and they try to be helpful. Monday 21 August 2000 Today we spoke with Dr. Harvey and Professor Rosenfeld. They say that Krystal's tumor seems to be one of the most difficult so far. They said her tumor is very large and it extends all over the place. There is a piece of the HH in the 3rd ventricle that they will be able to disconnect. There is a large piece attached to the bottom of the hypothalamus that they will not be able to disconnect. They told us that we should not expect Krystal to be seizure free after this surgery. That we can only hope for reduction in seizures. They gave us a 50% chance of seizure reduction and a 10% chance of something bad happening. It seems we are stuck between a rock and a hard place. Krystal really needs all your prayers right now. I want to believe with all my heart that by some miracle God will guide this surgery and Krystal will come home "seizure free" and if not seizure free that the surgery may benefit her and not cause any further complications.
For the next five hours we remained in the waiting room until finally Dr. Harvey came out to tell us that they had finished and that everything was OK. They disconnected 75% - 80% of the Hamartoma. I believe Krystal's Hamartoma has been one of the most difficult Hamartomas they have operated. Dr. Harvey informed us that Prof. Rosenfeld would talk to us shortly. Fifteen minutes later Dr. Rosenfeld came out and confirmed what Dr. Harvey told us. He feels that the seizure activity should decrease. He was very happy with the outcome of the surgery and so were we. Shortly after the meeting with Dr. Rosenfeld we went to recovery to see Krystal. Poor Krystal was sleeping with bandages on her head and the nurse was trying to wake her up. Krystal just wanted to sleep. Krystal was gyrating and they kept sucking the liquid from her mouth with a suction tube. They told us that it was important that they wake her up every half-hour. They would check her eyes, hand movement and leg movement. Krystal took quite some time to open her eyes, and was not easily awakened the first night.
Krystal sat up today for a brief period and spoke a few words. She moaned a bit and complained about having a headache. They are currently administering morphine to control the pain. She has been sleeping most of the day and has not had a bite to eat as of now. She attempted to drink some water and juice but found it difficult to keep in the stomach and started vomiting. Krystal had two small tonic clonic seizures last night for about 30 seconds each but hasn't had any more throughout the day. The doctors say this is quite normal and even jerks during the night and day are quite normal. Krystal had a CT Scan today that showed minimal swelling and so far everything is well. Much work is still ahead and we need to keep faith in God that he will eventually allowed Krystal to live a seizure-free life.
She is being weened off of the morphine and is taking codeine and Panadol for pain now. She was complaining of headache this morning but now seems okay. Her urine output was very high last night ... over 200ml per hour for two hours and then went back to normal again this morning ...she had 209ml, then 219ml and then 148ml and now it's back to normal again...so the docs are not putting her on the DDAVP unless the high urine output persists. I think she is doing pretty well. She has had a few seizures but not very long ones...less than 30 seconds and one less than 10 seconds. It is only two days after surgery so it's still too soon to tell how she will hold up for the future.
I'm afraid bad news accompanies good news. At about 3:40pm Krystal had a Tonic Clonic Seizure that lasted approximately 20 plus minutes. The nurse administered diazepam rectally about 8 minutes into the seizure to try and stop it. This has been our biggest disappointment since we have been here in Australia. Even with this event occurring we need to stay optimistic because it is still too early.
Krystal has been up playing with her toys and coloring. Krystal spends most of her day sleeping but she is staying awake longer.
Today Krystal started the day with a
15-minute seizure at approximately 8:00 am. It was a Tonic Clonic seizure
but no diazepam was administered. She slept for a while after the seizure,
but was ok for the rest of the day. Overall her seizure activity has
decreased and her attention span has increased. Krystal is doing very well
even though she had those nasty seizures and we are hoping that she keeps
getting better. Krystal threw the biggest fit to get
on the Tram that I practically had to pry her off the Wheelchair. She
screamed at the top of her lungs and would not stop crying until we
reached the grocery store. Finally when we were able to relax, we sat in
front of the Television at about 6:30pm and Krystal had a 12-minute
seizure. I called Eleanor who was talking with Deneen Sink to come over
and witness the seizure. Although the seizure was long it was not as
intense as her usual five-minute seizures. Pre-surgery seizures she would
be completely out of touch after the seizures. She would drool on herself
and go just look like a zombie. Post-surgery seizures are less frequent,
less intense and there is definitely signs of responsiveness through the
seizure. Krystal does not seem to mind walking
around with half a bald head. We bought her headbands and a hat and she
does not want to keep them on, oh well whatever makes her happy. Her hair
is starting to grow back, she has some fuzz. My hair is starting to grow
back also. I shaved my head so Krystal would not feel bad about being
bald.
Only a small piece of the tumor lay in the 3rd ventricle. Attached on both left and right sides of the hypothalamus. Krystal's tumor is very deep into the brain and surrounding the basilar artery and touching the brain stem. During surgery Prof. disconnected about 75% of Krystal's tumor and resected only the small part that lay in the 3rd ventricle. On the MRI scans it appears that the tumor is two thirds the size it was prior. The tumor that remains is about 2cm. It's still a big piece that is inside her head. There is still a connection about 1cm on the left bottom of the hypothalamus and a connection that is half a cm, on the right bottom hypothalamus. Prof. Rosenfeld achieved the best outcome possible without causing any further complications to Krystal. We are satisfied that Professor Rosenfeld did the best he could without putting Krystal at additional risk. Krystal doesn't seem to have any endocrine or eye problems as a result of surgery. Krystal is not seizure free. There is at least 50% reduction in the frequency of the seizures. Although she is having some really long seizures (5 seizures that lasted longer than 15 minutes and could not be stopped with the diazepam....in a little more than two weeks). We are hoping that those long seizures subside. Dr. Harvey said that only time will tell. Her in between seizures are very short...lasting seconds. She does appear to be more alert in between seizures.... and her EEG showed that the constant seizure activity that was recorded pre-op has been disrupted. Her behavior has not changed and she still lashed out time to time and screams and makes strange noises when she feels agitated. This behavior occurs a few times a day. All in all, we do not regret getting her the aussie surgery. She had not other option. We could not watch her decline so quickly. Dr. Harvey says that if anything, we have arrested the decline for now. We are optimistic that the future will hold better things for Krystal. I must tell you all that I am disappointed that Krystal cannot be seizure free. That she still needs her wheelchair outside and I still have to be behind her watching that she doesn't fall from a seizure. I am satisfied that the Aussie doctors did the most they could for Krystal at this time. I do appreciate that in between Krystal's seizures her brain seems to be resting (she is not in a constant seizure). So she is more alert and that is a benefit. Surgery
#12: Christopher Thursday 28 September 2000 Monday 2 October 2000 Monday was Christopher's first day of testing. First we met with Dr Harvey and his colleague, a doctor Jeremy Freeman. He would appear to be his right hand man. He seems very placid and caring towards the children. Christopher was then wired up for EEG video monitoring, this was about 1pm. We were told to withdraw his dose of topomax for that evening and the following morning in the hope of inducing more seizures. You wouldn't believe it but he didn't have any seizures at all until the middle of the night and then they were only very small. Tuesday 3 October 2000 Wednesday 4 October 2000 Wednesday morning he was unhooked from all the wires and we left the hospital around midday. They left the IV in so to try and avoid having to put it in again on Thursday. It just meant that we would have to inject it every six hours with water to keep it clear. You wouldn't believe it but after they took off the electrodes from his head and used a special solution to try and remove the glue, he got very upset because he hair was standing up. He had spent the last two and a half days in pretty difficult circumstances confined to bed and didn't complain once or get distressed, it was his hair that did it. Also he had probably the strongest seizure so far while in the hospital as we were giving him a shower, so the doctors were not able to observe it (sods law). He will fast again from midnight tonight for an MRI scan tomorrow (Thurs) and also have blood taking every half hour for endocrine tests. It will probably be a long day. Thursday 5 October 2000 Friday 6 October 2000 Monday we went to meet with Dr Harvey to discuss the results of all the pre-testing done last week. He said that everything was as they had expected from previous experience of the other children. We then had Chris's eyes tested. They put some sort of drops in to dilate his pupils. From this they were able to see through to behind and check if there was any undue pressure on the optic nerves. This was all clear. We were now all set for the surgery the following day. Tuesday 10 October 2000 Tuesday we had to be to the hospital for 7 am for Chris to have another MRI brain scan. This was a short one and the pictures were more for the surgery itself to assist Professor Rosenfeld. We took a chance to see if we could do it with him awake, in the fact of him being able to keep still which he did. He got all strapped in and was actually able to watch a video while they were doing the scanning. He had quite a strong seizure while in there and the guy came running out ever so fast and pulled him out of it. He settled down again afterwards and they were able to finish it. We then went up to the ward. It was around 12.45pm that they came up to take Chris down to theatre. This has had to be probably the most emotional and most difficult experience of my life. Everything was running through my head both negative and positive thoughts. Of course it was the overwhelming fear that something might go wrong. I had experienced this in the weeks leading up to it and had tried to prepare myself more for this time, but the intense feelings were so strong it is hard to explain. I kept telling myself that we have to go through with it because this was his only real chance, otherwise his life was doomed. At 1.15, I left Chris asleep in the anasthesitic room. I came out in tears and continued to still battle with my emotions. Professor Rosenfeld came to see us and assured us that things would be all right, "he was going to take good care of him". This helped alot and we began to settle down a little. Dr Harvey came up to the ward around 4.30pm to tell us that Rosenfeld had got it all out. We then down to the parent recovery waiting room and Professor Rosenfeld came out to talk with us and tell us more about how the surgery in detail. He said everything went as they had expected, there was nothing untoward and no bleeding afterwards. It had actually only taken about ten minutes to remove the tumour itself, the rest of the time was spent getting to it carefully without doing any damage. It was like a dream, there we were sitting and being told that this thing was no longer inside our son's head. All of a sudden their was this tremendous weight taken off my shoulders and I felt a strange sense of peace within. He left the recovery room at around 6.45 pm. to go back up to the ward. He slept more or less the whole night and most of the following day. He was constantly checked every half hour for responsiveness, blood pressure etc. That evening he developed a high temperature, we were told to expect that this might happen and it settled down. Wednesday 11 October 2000 Wednesday morning at around 4am, Chris woke up and asked "dad can I have some coco cola". You cannot imagine how I felt, I had my son back, he was going to be okay. This was less than 12 hours after coming out of surgery. Later on that day he watched some video and drifted in an out of sleep. We were told again to expect him to sleep for long periods during the first few days. Eventually his wake periods would get longer. Thursday 12 October 2000 Thursday , Chris had a problem with the IV drip in his arm as it swelled up very much and went as hard as a rock. This was because the needle became dislodged and pumped the fluid into his tissue instead of his vein. They removed it altogether and also the catheter so he was now free of any drips and wires which was good. He had some soup and later came his request for, yes wait for it "McDonalds". His only complaint was that he only got 4 nuggets instead of his usual six, he wasn't missing anything. Afterwards he got out of bed and took a few steps and then went down the ward in the wheelchair. As expected his awake periods are getting a little longer, although he is still sleeping a great deal of the time. Friday 13 October 2000 Friday he was sitting up more in the bed and was much more alert, he was eating well and feeding himself. Watching alot more TV and asked to go for a walk. He walked out the door of the ward and half way down the main hallway, we then came back as he said his legs felt a bit "wobbley". He also had a bath, which was nice as he felt and looked alot more fresher. Last night we had a small scare as his face became very very red and hot, he also seemed very confused, they said they would observe him more and do a scan if it didn't settle down the following day. Everything else is going absolutely fantastic, No diabetes, no temp, and his memory seems good and "YES NO SEIZURES, HOORAAY". Saturday 14 October 2000 Saturday, Christopher seems okay again today, his face is back to his normal colour and he is more alert and brighter again, is not disorientated. He got up out of bed again and was alot stronger on his feet. We went downstairs on his wheelchair and he enjoyed it. He is now able to get in and out of bed unassisted, feed himself, in fact tonight he was stuffing his face with chocolates (definitely didn't need any help with this what so ever,ha). Sunday 15 October 2000 Well, I am a man who has been walking on air these past days. I have been buzzing with excitement with the initial outcome. As you know Professor Rosenfeld believes that he got 100% of the tumour out, we should know for sure when he has his follow up MRI brain scan. He is truly a remarkable and gifted person who definitely puts the children first and doesn't take chances. After the small gelastic seizure on Wednesday I am happy to write that he hasn't had any since. It's been a hell of a week, but boy has it turned out to be the best week of my life. Monday 16 October 2000 Christopher unfortunately suffered a seizure early this morning about two hours after I sent the last email, it was around 2.00 am. He had another at around 10 am . They were very different to what we have ever seen before. Both occurred while he was sleeping. He started making a sort of groaning sound and his eyelids half opened with his eyeballs rolled back, he head was arched back and he wet the bed. They lasted about ten minutes. He hasn't had any since. We still remain confident and optimistic with the outcome so far. We were told to expect post operative seizures as this may be the brain just readjusting itself now from the removal of the tumour and so has been for some of the other kids following their surgery. He mentions now more that his head hurts and it seems to be more headaches than soreness but he isn't actually complaining, as I have mentioned before, he is a very strong and remarkable kid and in fact I think they all are, to be able to go through so much and recover so quickly. I'm sure you will all agree that it is probably us adults who are more the bigger babies (ha). It is also itching him more and this is a good sign that the healing process is going well. He saw his head for the first time tonight and his first impression was said in a quiet voice "oh no". It was actually rather funny because I then explained to him that they had to cut his hair short for the special pictures. I still wasn't going to tell him the whole story, one day I will, but in time. After I said this he just shrugged his shoulders as if he couldn't care less about his hair. On a better note Chris continues to stay awake longer and continues to communicate more. He's spirit and sense of humour is good, he's been joking quite a bit. Although he is still very weak and tires quickly, he managed to get up again today for a while and walk a little. We took him down to the ground floor and he spoke to Sarah and Daniel (his younger sister and brother, 8 & 7 yrs old) as well as his grandparents. This was the first time since his surgery so as you can well imagine they were absolutely delighted to hear him. Again so far no signs of diabetes and everything else is going fine and completely normal. We were told that he will have his stitches out around ten days following the surgery, which will be around Friday. I am not sure yet when they will start doing the post-operative testing. It's more like before and after sort of thing to see if their has been any changes following the surgery. Tuesday 17 October 2000 Well it's now been a week since surgery and I regret to have to say that Chris has suffered more seizures. He had two yesterday lasting about 15 to 20 seconds, both gelastics. Today he has had three, again two were short gelastics and all had occurred while he was drifting off to sleep in which he also wet. Although we naturally felt dismayed about them, we felt that they were pretty minor but tonight at around 7.15pm he had a full blown grandmal with eyes rolled back, eyelids flickering and limbs jerking and of course he wet. He was completely wiped out, more than I have ever seen him after a seizure. I try to keep optimism and tell myself, one day at time and that the next day hopefully will be better, it's difficult and I have to admit that I am a bit concerned more after this one this evening. I know we must continue to remain strong, be patient and wait longer before making any real assumptions but it's a hard balancing act to sustain on one's emotions. Today the film crew came from channel nine (A Current Affair) and did their last bit of filming so they said that it should probably be aired sometime this week. They said the piece should be around 10 mins long. We met with Dr Harvey and Prof Rosenfeld and they both said that they still felt that these seizures would settle down although this was before the bad one this evening, so we haven't discussed this with them yet. Chris will have his staples out tomorrow, he had 33 in all and the cut is sort of U shaped with each side about 6 to 7 cm long. He will then be able to keep the dressing off and his hair is growing back a bit, he finds it a bit strange to touch and has become a bit conscious, he also now feels a bit embarrassed by it. We bought him a nice hat, don't know the name of it (something like a "crocodile Dundee hat"). He also doesn't seem as yet to be showing any other further problems, except that he wants to wee alot. It's not so much the large amounts but more the frequency, we will obviously be mentioning it to the docs. They say that there are still no signs of diabetes insipidus, so that is good. Also hasn't been needing much pain relief today so that is also a good sign. We also may be getting discharged tomorrow and if so we will come back some time next week to start all the post op testing. If the seizures continue, then hopefully these tests will give us some more answers. I am now also beginning to wonder if by stopping that last 100mg of Topomax all at once was a good idea. Saturday 21 October 2000 Christopher was discharged from the hospital on Wednesday afternoon, we got out of there at around 5.30pm. We haven't really been able to do alot as he gets tired very quickly and is still sleeping alot. He has continued to have about one small seizure once a day except for today, we decided to give the Aqaruriam a shot this morning. We were half way there in a cab at around 11.00am when he had a big seizure, it lasted about 4 to 5 mins. I have never seen him in such a hard one like this before. Then we had no choice but to turn back again so this afternoon we went down there again. By the time we got there he was complaining of severe headache so we decided not to go in and went back again. Oh well third time lucky. The fact of him having such another strong seizure has not been so much of a shock this time and upon reflection so far there has been a massive improvement in the amount he is having now then before the surgery, yes I would think it's been about 90%. We start back again at the hospital on Monday for all of the post op tests. The first one will be the eye one. Tuesday he will have another MRI brain scan, this should show more whether Prof Rosenfeld was able to get all of the tumour. This is at 7.45am, afterwards Christopher will get wired up for his EEG. We then have an appointment to see Dr Harvey in the afternoon to discuss the results, we should be in a better view of things after that. Wed he will have the endocrine testing where again they will take blood every half an hour for 3 to 4 hours. Thurs we meet with Dr Zackron, the endocrinologist to discuss the results of the previous day's testing . Hopefully there won't have been any hormonal disturbances following the surgery. Friday we were supposed to have another Neurea phycology test but we cancelled that as we do not see much point in having that repeated so soon. We will have it done in the UK 3 to 6 months down the line, by then we should be able to get a better picture of how he is progressing intellectually, ie. If we have managed to halt the deterioration and if he has made any progress. The only other problem that I have to say has occurred is his appetite, it seems to have gone crazy. I have woken up a few nights and found him wandering around the room looking for food, he keeps saying throughout the day "I'm hungry, I'm starving". We were told that this could be one of the potential problems following the surgery or that it could just be temporary. We hope so because he is already grossly overweight, probably around 16kilos. it seems no matter how full his tummy gets his brain will not acknowledge it and send the right signal. If all goes according to plan we should be leaving Australia on Wed 1st Nov, we will arrive back in the UK at around 2.00pm on the Thursday UK time. The time has gone quite quickly but I have to admit I am looking forward to getting back to England. All in all we do not have regrets about doing this surgery and are still confident that soon Christopher will be seizure free, this is something that I will never give up on achieving. Right now we have to be very grateful for the level of improvement that we have been given by a very gifted and talented Prof Rosenfeld. In addition, the fact that he doesn't seem to have had any major complications. We are also very grateful to you all back in the UK for the huge help you gave us with our fundraising to help get us here. They have started showing previews on channel nine TV about our story this weekend and have said that it will almost definitely be shown in full this Monday.Wednesday 25 October 2000
Surgery #13:
George Monday 30 October 2000 Tuesday 31 October 2000 Jeremy (Dr Freeman) was up early to try and catch one of George's early morning seizures, so that he could inject some radioactive dye like substance which would then show under scan where the seizures were coming from (SPECT test). This he managed at 6.30 am and George was set for his general anaesthetic later in the morning.We were then informed however that George had been given an overdose of the radioactive substance (twenty times the dose). It seems that it was packaged incorrectly in the pharmacy. We met with Dr Harvey and the head of nuclear medicine and were reassured by them that it was still a very safe dose and comparable to a dose other children may receive for cardiac scanning. We gave George a drug to flush it out and he had an drip put up to flush it out too. The anaesthetic had to be put back to late in the afternoon as they felt it might be too bright ('glowing George')- this was not popular with George who was loudly demanding chips!! George had his general anaesthetic and the scan at 3.30pm. We were all very exhausted at the end of this day, emotionally and physically and unfortunately the overdose also meant that the SPECT scan had not worked, which was very disappointing. An extra body scan had revealed that George's thyroid had not taken up too much of the radioactive stuff which was great news, but disappointing that the SPECT scan didn't work. Dr Harvey feels sure however that with George's history and seizure pattern that the seizures are coming from the hamartoma but it would have been nice to have it proven on the scan! An extra night in hospital for George Tuesday night. Rob stayed again and had Halloween performers round to entertain! It was a pretty traumatic day and obviously we would rather not have to have contended with the overdose, but the way the whole team dealt with it was fantastic. There was complete honesty and openness, a lot of energy into putting it right, and an apology. It was very professionally handled, but a tough one for George and us. It has apparently never happened before in the last 10 years they have been doing these tests- lets hope this is George's only bit of bad luck! Wednesday 1 November 2000 George had blood test today for testing his pituitary function, especially growth hormone and cortisol. He had to have an injection in his leg and then bloods taken every half hour. He was amazing, just said ow ow ow, when he had the injection, and luckily the cannulae in his hand was still working which meant they didn't have to put a new one in or keep sticking him with needles. We were all done by 2pm and George had a bath and hairwash to get all the glue from the electrodes out, then back to the apartment. Friday 3 November 2000 Final test for George - an MRI (brain) scan under another general anaesthetic, which went fine. Finally, the operation itself is still booked for 1pm on 22 November 2000 (Oz time) - 2am our time. It's a five hour operation so think of us when you wake up! Monday 13 November 2000 George's EEG does not show continual activity all over the brain, as some other children's have, but this does not mean that the Hamartoma [HH] itself is not firing continually, it may mean that the scalp electrodes are not able to pick up the HH activity as it is too deep in the brain. During the operation they will put electrodes onto the surface of the brain and into the HH itself. Even from the scalp electrodes on the EEG there was some activity every page or so (every 20 mins or so), even when George was not obviously having a seizure. There were about 6 of George's seizures captured on video, and some of these were fairly typical of the stronger type of gelastic seizures that we are now seeing quite regularly (George had three of these yesterday, all of which required a sleep afterwards). In these what starts as a typical gelastic (face flushing and panting, with the right side of his mouth going up) progress further with head turning and stiffening of his arms. Dr Harvey said it was a very small step from these type of seizures to the 'drop' seizures that some of the other children experience. We asked him if George were his patient would he recommend surgery, and he said 'Yes!', and that he thought we should proceed, to prevent George's seizures becoming worse and to hopefully help his learning and behaviour once the seizures had stopped. He said he could not promise that his learning and behaviour would improve, but expected it to do so once the interference from the seizures was removed. He also said that surgery was always better before puberty, and that if we didn't do something now it was likely we would need to do it in the future and that it was preferable now, as George was just 8. He showed us the new MRI (brain) scans taken just the previous Friday, and we got a great view of George's hamartoma from many angles. It is about 2cm by 1.5 cm and so it is oval in shape, like a small egg. He demonstrated on the scans the route Prof Rosenfeld would take, talked through the operation in detail, referring to most of the previous operations for comparison. George's HH is medium sized, not as small as Rebecca's or Christopher's, but smaller than many others. It is definitely attached both sides, which makes it technically a bit more difficult, but in 9 out of the 12 other operations, the hamartoma has also been attached both sides. Technically Dr Harvey classified it as on the easy side of medium difficulty! The op day itself (Wednesday 22nd November, Melbourne time - 11 hours ahead of UK time) was detailed thus: 12.30pm George has general anaesthetic for MRI - has metal markers placed on his head to guide the surgery, and MRI films taken with these in place 1-1.30 moved to theatres still under GA, and op begins about 1.30pm. Lots of setting up of equipment,and infra red beams used to determine where George's head is in the space of the theatre using the metal markers on his head - this then matched to the MRI pictures. Getting into the third ventricle where the hamartoma is about 1-2 hours, removal of the hamartoma about 30 mins (approx 3-3.30pm) Dr Harvey will come and talk to us about 5pm Prof Rosenfeld will come and talk to us about 6pm and we should be able to see George in recovery about 6.30-7.00pm!! George will wake up shortly after this and be taken to the ward. The theory is that he will be very drowsy for some time after the op but they will be looking for a response from him every half hour through the night. They will also be monitoring his urine output via a catheter, supplying him with morphine and anti-biotics through an IV drip, and checking his vital signs. The first few days in the other children have seen big swings in temperature, some post operation seizures, short term memory problems and some chemical/hormonal imbalances, but these have all settled down after a week or so. It is definitely going to be a tough first week as the real outcome of the surgery becomes clearer. We got all this information from Dr Harvey on the Monday morning before meeting the man himself, Prof Rosenfeld in the afternoon. He is, as you would expect and want from a man who on a daily basis enters the brains of children to undertake some of the most complicated surgical procedures imaginable, very self-assured. He has a self belief that gives off a kind of aura and an individuality that's hard to describe. He repeated most of what Dr Harvey told us and promised he would do his best for George. On Wednesday we met with two of the Hospitals endocrinologists. George was at his most uncooperative so they put off giving a physical examination and instead discussed the results of the blood tests of the previous week. It seems that George's testosterone levels are way up to the levels you would expect in a 12 year old rather than an 8 year old, which puts him at starting puberty a bit early. When he was examined at Great Ormond Street in August this was apparently not the case, although they did not have the evidence of the blood tests. He is to have a hand X-ray next week which will help determine his bone age (he had one done last year and was deemed OK). If he has the bone age of a 12 year old we may need to discuss using a drug to halt the advance of puberty, or else he may end up a short man (puberty fuses the long bones and stops further growth), but if his bone age is that of a 10 year old he may be OK as he is a tall child, with average height parents! We will discuss this further with our endo on our return. The other piece of unexpected news from the endocrinologist is that George had an unusually low level of cortisol in his blood. This hormone is released by the pituitary glandupon signals it receives from the hypothalamus. It may be that George's hypothalamus is not sending enough signals. Cortisol is produced to help the body deal with stress - mainly physical stress, rather than psychological. It's low levels on a day to day basis would make George feel very lethargic and washed out. It seems that as he does have bursts of energy it is unlikely that it is low all the time, but again we may discuss replacement on a long term basis with our endo when we return. In the short term it is important that he has replacement and cover of cortisol for the operation. This they routinely do as it helps reduce swelling, but George may have a bigger dose than normal. The side effects of this in the short term are a huge appetite! All four doctors that we saw last week spelt out the possible risks and side effects of surgery which was hard to listen to. We need to keep focusing on the good results for the other 12 children, although it is hard to keep being reminded of what may go wrong. We are trying to relax and forget about the impending surgery, but at times it is a tall order, and we feel both anxious and distracted. The waiting is particularly hard and we would both like the surgery to be over, and George to be recovering, but we will have to be patient. Tuesday 21 November 2000 Wednesday 22 November 2000 George had a good evening and a brilliant night - he was still very drowsy and sleeping loads, and slept all through the night. The nurses were coming to him much less than the night before. got a reasonable amount of sleep, but two admissions made for much noise at midnight and 2am! Thursday 23 November 2000 George remained sleepy for most of the morning. He had another dose of the DDAVP drug up his nose at 9am, as he started to put out big amounts of urine again. It is still too early to tell whether this is a temporary thing - only time will tell. Meanwhile he is being very well looked after by the endocrinology team. He has to have his finger pricked every 6 hours so that his blood can be monitored as part of this (they also collect and measure his urine every hour). He puts up with this with great fortitude, and says "ouch" or "bother"! George is being absolutely amazing and so tolerant of suddenly finding himself in bed with a big bandage on his head, a drip in his arm and a catheter in his willy, but he seems to be totally accepting of it all - quite amazing! This afternoon he woke up, ate some chips and coke and Rob read 'the Jungle book' to him.This was his first significant time awake, and he was pretty chatty, with no obvious evidence of any short term memory deficits. He then had a little snooze and awoke again, watched a video, ate some potatoes and then some pumpkin and banana (both extremely rare and new entrants into George's diet!). All in all an excellent day and all teams of docs etc are very pleased with his progress. Friday 24 November 2000 The DI (water balance problems) have continued again today, and George had another dose of the synthetic hormone up his nose at 5am -we continue to hope that this will be temporary, but still too early to tell! In himself, George is great and in the words of Dr Harvey "He looks a million dollars"! He has pulled the bandage off his head (it was falling off) and has a dressing on the top of his head. His haircut is quite interesting and monk like -they have shaved the middle of his head from forehead to crown, and the rest of his hair is long! we may ask them to shave the rest when he is under anaesthetic - probably on Friday - he will be having another MRI scan to see how much of the hamartoma is left, and they will probably take out his wound clips at the same time to save George any trauma. Monday 27 November 2000It's been an emotionally and physically tiring couple of days for the Maben-Mead clan. George is doing great again now but we had a bit of a blip over the weekend. Saturday went very well up until the evening when George reverted to being very sleepy and somewhat out of it. This we put down to his amazing progress having an exhausting effect on George. His DI water balance problem continued through Saturday night with regular 16hr hits of DDAVP(synthetic hormone) required. He slept well but there was some twitching when he was asleep that suggested epileptic activity. On Sunday he woke up much the same way as he went to sleep, very drowsy, and seemed to be feeling quite grotty. His blood sodium level had dropped to 130 (normal range 135-145) which apparently makes you feel dreadful. He also had 4 -5 very small seizures (about 5 secs each, mainly staring) but this may be mainly due to the low sodium - hopefully (apparently this can cause seizures on people who have no epilepsy!). He sat out of bed for a short time and tried a jigsaw but his heart wasn't it in, and he slept most of the day. George needed more DDAVP again at 2am. Monday (today) started much brighter and you could almost tell just by looking at George that his sodium levels were back to normal (136 at 6am!). He ahs had a much better day all round - his drip and catheter have come out (which helps in many ways - not least it stops us focussing on his urine output every hour!!). He has watched many videos (and started at 6am!), done several jigsaws, been for two short walks, and sat out of bed for his meals. All in all a good day. The last week has been a bit of an emotional roller coaster which is beginning to take its toll. taking turns to sleep in the hospital is fairly exhausting too, but hopefully only a few moredays................. Tuesday 28 November 2000 Today (Tuesday) George has had a GREAT day. He has had a bath, been to MacDonald's downstairs in a wheelchair, been doing lots of jigsaws, and has been awake for most of the day, just having a couple of short naps. All the docs are pleased with his progress, and we have even been managing to get him to drink the required 1200mls per day (quite a feta as those of you who know George well will testify - drinking is not his forte, mainly because he doesn't seem to get thirsty - another result of having the hamartoma in his hypothalamus, as the hypothalamus controls thirst). He has a huge appetite at present which is hopefully just the result of one of the drugs he has been having - a steroid to help control brain swelling. He was calling out for chips at 5am this morning, and has been eating chocolate, lasagne, potatoes (of course!) chips and nuggets in MacDonald's etc etc. It is a hard job controlling is intake as he is being quite vocal about his requirements - however we don't want him getting overweight, and have had strict instructions form the endocrinologist not to overfeed him! He had another small seizure today (about 5 secs) but just the one, and we were told to expect some post operative seizures as the brain settles down and readjusts after the surgery. Given that he was having 10-15 a day pre-op this is NOTHING, and will hopefully settle done to nothing once he has fully recovered form the surgery. Best news so far today is that he has not required the DDAVP (synthetic hormone ) drug for the water balance problems (Diabetes insipidus) for 24 hours now!! Hopefully this is the turning point and we can leave all that behind us........ watch this space! Wednesday 29 November 2000 Thursday 30 November 2000 George was pretty lethargic though during the evening and night at home, and had a bit of a temperature, and had been complaining of headache. It is very unusual for George to complain of pain, so we mentioned it to the doctors and they were also concerned and decided to check George out. Dr Harvey arrived- he looked in his ears and throat but there was nothing to speak of - they wanted George back in for the day, to check his temperature 2 hourly and to take blood specimens (full blood count, and as he still had a temp - blood cultures) and also a urine specimen. We then noticed that George had some swelling and fluid around his wound on his head. Anyway to cut a long story short we ended up hanging around in the hospital all day feeling pretty anxious. George was not allowed to eat or drink anything as they wanted to bring the MRI brain scan forward from Friday, to see what was going on. As you can imagine George was not the slightest bit amused at being denied food, and regularly called out for chips, or crisps or potatoes!! He was sedated and then had a general anaesthetic at 5pm during which he had an MRI scan, a lumbar puncture and a 'David Beckham' haircut! The lumbar puncture was to try and find the origins of his fever (which thankfully by this time was subsiding!) and they were querying meningitis as George had appeared to have some neck stiffness! The wait for some preliminary blood results on this was as you can imagine a long and anxious one, but all is well and the tests have proved negative- thankfully. They have decided to leave George's wound clips in for another few days and they will be in for a total of 2 weeks - this is mainly because of the fluid collection, which they think is probably a leakage of CSF (brain fluid) - this is not as alarming as it sounds, and apparently is reasonably common with craniotomies. We are told it will resolve of its own accord and gets reabsorbed by the brain over the next few weeks. George now has a bit of a 'dome' on top of his head, spectacularly revealed by his new haircut! So the wound clips will come out next Wednesday under sedation when they will also do a post op EEG. The best bit of news though (which we definitely needed after the stress of yesterday!) was that from the hamartoma point of view the MRI was spectacular apparently revealing a 100% removal! The tongue / sliver of tissue that they were unsure about at operation was apparently the two mamillary bodies - these are responsible for short term memory and so we are delighted that Prof Rosenfeld decided to leave them in place! apparently the hamartoma so pushes the 3rd ventricle that the anatomy in that region gets very distorted and this is where the skill of the surgeon comes in. We are so delighted that we came to Prof Rosenfeld - he is a very experienced surgeon in this area now, and very skilled in distinguishing between hamartoma and good tissue- thankfully! Friday 1 December George had a good night, and has had a much better day. He has had a bath, been to MacDonalds for lunch and we then went to the playground at the back of the hospital where George stunned us all by going down the slide! He has been awake most of today and his temperature / fever has pretty much gone. George has had no further seizures, and we are hoping we will get to leave the hospital again tomorrow! Saturday 2 December Just a quickie - George is now out of hospital - he came 'home' this morning, and we have spent the day with our friends Mark, Julie and their children, hanging out at their house, enjoying the garden and having wine, beer and an Indian takeaway! Bliss! George is coping well, still has the fluid around the wound, no further seizures or DI - clips to be removed Weds, and we are back to the ward tomorrow for another blood test - but we all get to sleep under the same roof again! Hurrah Tuesday 5 December A few things have happened over the last couple of days. George had a high sodium blood test on Sunday, which meant they decided to give him some more of the synthetic hormone (DDAVP) up his nose to try and bring his sodium levels down. This it did (his blood test yesterday was normal) but he then had a huge diuresis (big volumes of urine!) last night, which we sat on and watched and waited for a while and then gave more DDAVP (by which time he had pee'd a litre in less than four hours!). We were a bit worried about him dehydrating (it was a very hot day and night here last night!) and so had a bit of an anxious night , but this morning he seems better than ever, much brighter, in a better mood, AND the fluid swelling on his skull has gone down quite a bit- so who knows maybe he had too much fluid and he needed to get rid of some!! It seems he may still have the diabetes insipidus (DI) even though we thought it had gone, and we will know more over the next couple of days. George had a low cortisol (another pituitary hormone that helps the body deal with stress amongst other things) before the op, and still has a low one, it seems that this may make him retain fluid and so 'hide' any DI that may be going on!? (complicated or what!) We are finding this water balance issue quite bewildering at times and because it is an unknown thing (to us at the moment) a bit scary and worrying too - but today we are feeling more relaxed about it. We will know much more about what is going later in the week when we get the results of a lot of the blood tests George is going to have. Tomorrow is another big day for George, and he is going to have lots of different blood tests (cortisol, sodium, testosterone etc), his clips removed (from his wound), and an EEG all whilst he is sedated. We have not seen any seizures since the small ones of last week, and have seen any of those since last Wednesday - nearly a week now which is fantastic! We have not yet seen any major changes in George's behaviour yet, though he does seem a bit more alert and noticing things more and is also being a bit more flexible about things e.g. diet, though he is back onto potatoes for every meal at present, but we haven't been discouraging that for now as with his huge appetite potatoes seem the least fattening thing he will eat (preferable to MacDonald's anyway!). Dr Harvey has told us over and over that the operation is about George's long term future and advises great patience regarding any behaviour changes etc. It may even be that George's behaviour is worse before it gets better (!!) as he will have more energy from the lack of seizures! (HELP!) One can only wonder what it must be like for George too - it may feel pretty strange for a while - to be seizure free after 8 years of seizures, may actually disturb his equilibrium. In terms of the 'year zero' I mentioned in a previous email I really meant that George's brain is in an entirely new state for the first time, and so we can help him re-start again and help him learn more and unlearn some of his behaviours if possible. It also gives us a new opportunity to make no assumptions about what George can and can't do and what he will and won't eat/ read / watch etc for example, which is both wonderfully exciting and also a big challenge! We believe that the Son-rise programme we already have up and running part time at our purpose built playroom at the bottom of the garden will help enormously with this, also school and everyone else involved who wants to help George move forward. We are so impressed with the team here, all the doctors are wonderful and very approachable, happy to explain and re-explain everything (we are also particularly impressed with Prof. Rosenfeld's surgical skill), and the nurses too. Hilary - you are right I haven't mentioned the nurses much, but the care has been wonderful, and everyone has tried hard to minimise the trauma and disruption for George for which we are very grateful. Tuesday 12 December The EEG he had last week is much improved on the pre-operative one - much less epileptic activity, which is great news- AND there have been no seizures for 2 weeks now which is fantastic. It seems George does have the DI at present - and we are giving the DDAVP up his nose every night (not easy as George is none too impressed with this mode of administration - we have taken to blowing it up once he is asleep, guaranteed to wake him, but better than having to pin him down!). It may be permanent, but no-one can predict at present, and hopefully it will be only temporary - we are getting used to keeping a fluid balance chart every day (intake and output!) and can now mange to get George to drink 1500mls a day! George's cortisol levels seem to have improved since the operation which is good news and means he won't need cortisol replacement. He also had his first injection to halt the rise in testosterone, next one due 4 weeks from then. George has a huge appetite at present, which has been wearing us out trying to prevent him eating constantly - again we are hoping this will settle down, but he is on an appetite suppressant at the moment (amphetamines!) which is helping a little. We saw Dr Harvey yesterday and saw George's post operative brain scans for the first time - we saw the pre-op and post-op ones side by side which made for impressive viewing! Where the hamartoma was there is now a space in the third ventricle - it is amazing to see it gone - fantastic!! We have another MRI scan tomorrow, to check the flow of fluid through the ventricles, then appointments with Prof. Rosenfeld and Margaret Zacharin, the endocrinologist on Thursday and finally Dr Harvey again on Friday to get all our paperwork to bring back to the UK- then the weekend to pack and say goodbye to Kayla and Paul and our friends Mark and Julie, before boarding the plane for London on Monday (via Sydney) - hurrah - we can't wait to get back home now - we will miss the sunshine for sure - it has been stunningly gorgeous weather here -25-30 degrees every day (sorry to rub it in!), but we are ready (more than ready after 8 weeks!!) to come home. 18 January 2001 The journey back was fine (with hindsight!), but not without incident - George was an angel and slept like a log for the first 'night' so much so that we were worried he was too drowsy and so woke him up!! He then wanted to eat and eat and so we gave him the Valium the docs in Australia had given us for the trip and although it didn't send him to sleep, it made him extremely happy which was very sweet! Lola was a little more problematic and vomited for 12 of the 24 hour flight - all over Rob and I, which as we didn't have a change of clothing meant that we were not pleasant to sit next to for the remainder of the journey! George is doing great and we are noticing many differences in him, both cognitively and in his behaviour. He is back at school now too (part-time, as he was before we left) and this week we are re-commencing the son-rise programme back in the playroom at the bottom of the garden, which is exciting. He looks very well in himself, and there is really nothing he cannot do (if he chooses!) - we went swimming at the weekend, and he has enjoyed going to the park, and climbing and going down the slides, which is great. He still has a very hefty appetite and is about 10-12 pounds heavier than before the op. He seems much more aware of what is going on around him, and less 'in his own world', so his autistic tendencies seem to have diminished a bit, though he is still keen on many of his 'obsessions', but that is hardly surprising and one wonders what it must be like for him because....... He remains seizure free!! And after having 10-15 seizures a day all his life it must be strange for him in many ways to be without them. We are delighted of course, and hope that he remains without seizures. He is still on his anti-convulsant medication and is likely to stay on them for a little while yet as a precaution. We see George's neuro Feb 6th and so will discuss this with him then. His behaviour is also generally much improved, he can still 'lose it' and get angry, but he seems much more able to listen to reason, and to be able to accept things than before. I have only been hit once since our return, whereas in the past I might have expected to be hit every other day or so. He seems much more loving and generally to have a sweet nature. His other emotions are much nearer the surface too, and he will cry more readily at the moment, which is interesting. On the medical side of things, George is attending Great Ormond Street weekly for blood tests to check his sodium levels, these have been a little on the high side and so we are now making sure he has 1500 mls (a litre and a half) a day to drink rather than the 1200mls we started out on when we returned to the UK. He is still having the DDAVP (hormone replacement drug) up his nose nightly, but he will be admitted to Great Ormond Street for to nights at the end of the month for more tests to see if he really needs this and if he does indeed have the diabetes insipidus (DI) still. He is apparently on a very low dose of DDAVP and as he only needs it once a day, the doctors think he may be able to do without it - we will know more once he has been in hospital - so fingers crossed. Anyway suffice to say that even if the DI turns out to be permanent, it would be a reasonable trade for the seizures and would be a price worth paying. To see George without seizures is SO WONDERFUL, and we thank you all for your fantastic support - both moral support and financial support - it would not have been possible without you all - so Thank you very very much. 1 March 2001
Link to Children's Epilepsy Website Read About the Melbourne Team's Successes
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