Tyler's Diary

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Note: If you would like to be informed when the diary is updated, just email me and I will let you know when some thing new is added. I will protect your privacy and never give your email to anyone else for any purposes whatsoever.

4 October 2000

Just a brief update for those of you keeping tabs on our little gems.

Tyler

Tyler's arbitration meeting was posponed at the last minute due to "unavailability of key department personnel". We go back to the round table on October 19. We had a meeting with our legal team to decide how best to tackle the next meeting. We have given up hope that he will go to the language school we had so hoped. The only way he can get in there now is for us to sue and for a place to ba taken from another deserving child. In all good concience, that is something that we cannot do. We did come up with nearly nine alternatives for his schooling. Let's see how that goes.

Tyler is now reading. He read Dr Suess's "Bears On Wheels" a few weeks ago and we have noticed that he can read about 200+ words consistently. We wish that his oral language would progress as rapidly.But then, in todays world, as long as he can read and type he will be able to join the electronic community.

Tyler also had an OT assessment last week. He came in ad 24 months. Not real good for a boy who is 58 months. We have started to do some excersizes with him while they put a plan together. His school also decided to do one (behind our back of course). they seemed surprised when his results came back poor. Their results weren't quite as bad as ours, but then they have always tried to prove thet Tyler is a "normal" child. If there is one thing Tyler is not, it is nornal.

Aussie FOLKS (Friends Of Landaou Kleffner Syndrome) now has a website. This is a support group that we started to help other parents with children similar to Tyler. It has been running since Tyler was about two. I was sure that I had mentioned it on our site somewhere before. Shows you what can happen when you run flat out 24 hours a day.

Nerhys

My doesn't time fly. July to now is over half of Nerhys's short life. She is doing wonderfully. She does have mild CP but it is responding well to physio and she should almost be completely normal physically. She will most probably never be an olympic athlete (which, living in Sydney andd being caught up in olympic fever, seems catastrophic now) she will lead a normal life. She will need speech therapy but then, with the cleft she was always going to need some.

One good piece of news is that she does not have Stickler's Syndrome. The tests all came back negative. She is going to be checked out by a neuro though as her vision has been coming and going, possibly due to seizure activity. Hopefully, and most likely, she does not have epilpsy but we want to be sure before she has the cleft surgery in November and they start using a few new drugs on her. On the subject of her cleft surgery, we have found a great surgeon to do it. He has only a 1% return rate, and he claims that those were all due to the fact that the parents did not follow his post op plan. I don't know about his claims but his success rate is verifyable.

A couple of weeks ago Nerhys had a timpaniagram and the results came back that she was stone deaf. They want to check her cochlear to rule out a problem there. The most likely problem is that her eustacean tubes are blockd, which is very common in cleft babies. Trying to get that verified at the moment is next to impossible as most health professionals in Sydney are on olympic sabaticals.

That's all for this gripping istallment. Please forgive the typo's. It's late and I'm tired.

29 July 2000

For once it would be nice to have a normal child with normal problems. It seems that there may be more to Nerhys than just a cleft palate. The doctors think that the way she continually keeps her feet and hands tucked in may be to mild cerebal palsy. On the other hand they think she may also/alternatively have a sydrome called Stickler's Syndrome. Stickler's is relatively common with cleft palate babies although you don't have to have a cleft to have Stickler's. It is one of those syndromes that can present as so mild that the person may not even know they have it or it could get to the life threatening stage. We are currently waiting on chromosomal tests to determine what's going on.

One of the reasons they think she may have Stickler's is due to her apparently poor eyesight. She does not respond well to visual stimuli but the doctors think that this may be due to what they call "delayed maturation". Most liklely brought on by the fact that feeding is so tiring for her that she uses all of her energy doing that and does not have a lot left to interact with the world. We arecertainly hoping that is the case. We go back to the opthalmologist at the end of August. Maybe we will know more then.

Tyler continues to improve, though his language tends to fluctuate fairly wildly. We found out (the hard way) that anti histamines can lower the seizure threshold for epileptics, so if you have elpilpsy or epileptic children, consult your neurologist before using antihistamines (found in most medicines used to reduce cold/flu/alergy symptoms).

Tyler has adjusted amazingly well to Nerhys. Unfortunately, he hasn't quite worked out yet that the reason she won't play with him is because she can't. He keeps wanting her to get on the floor and play cars and watch videos. He has even fed her on a couple of occasions. Now, if I can just teach him to change a dirty nappy.

The meeting with his school to set his IEP went well. We brought his advocate along and they basically conceded all of our demands. Not much news yet on our court battle to get Tyler some useful schooling. It will be going to arbitration in late August but there is no garauntee that this will be successful. I'll keep you posted.

PS. I am in the process of scanning in a load of pictures. Hopefully I will have some up on the site in the next week or so.

28 May 2000

Well, we now have a new addition to the family. A bouncing baby girl. Nerhys Francis Bell Price arrived at 11:56am on 24/5/00. She weighed in at 3.8kg (8'6"). She is pretty much perfect, except for one small detail, she has a cleft palate. For her first couple of feeds she needed to be tube fed but is now feeding well with the aid of a special teat. This means that she will need surgery at some point and will need speech therapy at the very least. To say we are in a bit of shock is a mild understatement. What nobody can work out is that it was not picked up during the vast number of ultrasounds Karen had during the pregnancy. The doctors are at the moment going through all the old prints to see if they could have picked it.

I won't go into much detail on it at the moment as I don't have a lot of information. Give us a couple of weeks and we will be experts in the type of cleft affecting our little Nerhys. When we do I will be adding her details to the pages here. As she will also need early intervention it is only fitting that she shares the site with her brother. Just don't tell him that yet. He still isn't so sure about having to share with his sister. We will see her team of specialists in a couple of weeks and I will fill everyone in when we know what the heck is going on.

Tyler is having a couple of problems dealing with the new addition (and she's not even home yet) and has begun acting out. We gave him his own baby to look after as he insisted that he also was pregnant. It is helping but he is still challenging for as much attention as he can. I must admit I find it difficult to not tell him off every minute of the day. A typical day in the last couple of days consists of Tyler doing something he knows he shouldn't do (chasing the cat, throwing in the house, etc), me yelling at him, him crying and ten minutes later him apologising and us having a hug. I just hope this phase passes quickly.

Tomorrow, Karen is coming out of hospital for a couple of hours so she can attend Tyler's IEP meeting at the deaf school. The school originally wrote their own which ran to a paltry 2.5 pages. We did a bit of research and wrote our own. Ours is 11 pages and all of his specialist could only come up with three minor changes. Tomorrow we get to argue which to use. It should be interesting, their team vs our team. I'm very confident that we will win. I will let you know how it turns out.

14 May 2000

Karen pointed out to me that the one important thing that I have not said is Tyler's diagnosis. He was originally diagnosed with Landau Kleffner Syndrome. It is a form of epilepsy that chiefly affects the language centre in the brain. This is why Tyler has the problems distinguishing sound and speaking. The diagnosis of LKS is wide and varied and Tyler is classed as a variant. This is because in his sleep EEG there is no apparent continuous spike wave activity. I say apparent because some neurologists have been able to detect it in children that they have not detected it before by the alteration of the placement of the electrodes. The doctors also say he has a lot of traits consistent with semantic pragmatic disorder and he is hyperlexic.

Due to all the trouble we had getting any services for him we started out own support group for parents in Australia that have children with Landau Kleffner Syndrome. The group started out being called Aussie F.O.L.K.S. (Friends Of Landau Kleffner Syndrome). This name is very close to another support group in the UK simply called FOLKS. Whilst we have a very good relationship with them and often trade information, we are not affiliated with them in any way shape or form. We are now going by the name The Australian Landau Kleffner Association. It is not a legal association yet but we are working on it. At the moment we are waiting to see how Australia's changing tax system will work. We also need a CPA to help set it up but are trying to find one that will donate their services as we can ill afford them.

We put out four newsletters a year. The newsletters still go by the name Aussie F.O.L.K.S.. Our first issue went out to about ten people, the second to fifty and the third to nearly four hundred. Doctors were giving copies out to their patients. We cut it back to only sending them out to parents with children with LKS or related disorders and to medical people as we have to pay all of the production and mailing costs ourselves and as we are not an official body, it is against the law for us to solicit for donations. Also the first newsletter had only three pages and now we try to keep them to around ten.

We are also trying to put out a book. It is in the final stages and we are now just trying to work out how to get it printed and bound in the most cost-effective way. It was originally going to be a small booklet of around 30-40 pages but has grown to over 100. You can't just fold and staple something that size. I have promised Karen that these issues will be resolved before the new baby is born, so that gives me 2-3 weeks at the most.

I'm also trying to put together a website for the association where we can keep links to all the useful information we know about and copies of the newsletters so people can download them rather than have us print and mail them. Who knows when I will find the time for that. What I need is to win a couple of million dollars so I can quit work and dedicate myself to the association full time, so any philanthropists out there with too much spare cash, just let me know. Until then Karen and I will just keep trying to fit 30 hours into a 24-hour day.

12 May 2000

We spoke to Tyler's lawyer this week. He has asked us for all of our documentation relating to Tyler as he is filing today. He has to file today to make sure that the matter is heard before the end of the year. He doesn't believe that it will get to court as he says "this matter is screaming of mediation". We certainly hope that it is resolved at the mediation table. Going to court will only cost a lot of money for all concerned and is not likely to produce a useful outcome for Tyler.

Our family is about to be added to. The baby is due in three weeks. We had an ultrasound yesterday and the baby is already around 8lb. I will post the details when it arrives. The doctors have warned us that there is up to an 80% chance that the new baby will have a similar neurological profile to Tyler. With this in mind we have decided that this child will not be immunised at all. This will cause major headaches for us as, in Australia, family payments are being tied to immunisations. I just hope they do not decide to tie school entry to them.

2 May 2000

I can't believe it has been over two years since I last updated this diary. I'll try to bring you all up to date as quickly as possible.

Tyler did have some tests done on his hearing. Thankfully, they were not invasive and they showed that while his ears were receiving the sounds correctly, they were being garbled at the cortex. So his new label was cortical deafness (you gotta love all the labels). Once again, the only people not completely surprised at the results were the parents.

Over the last two years Tyler's meds have changed dramatically. He was on Vigabatrin (Sabril), but we (his neuro and us) decided to change it as there were potentially damaging side effects on his eyesight and it didn't seem to be having a great effect on his seizures. We tried a relatively new drug called Lamactil. Within two days on the drug Tyler went completely psychotic. He was a danger to himself and all around him. His neuro told us to stop the meds for a couple of weeks and to try again. This was so we could determine if the psychotic episode was directly related to the Lamactil or was just a coincidence. Two weeks later he went back on the drug and promptly went off his dial. This time we tried Tegretol. Once again he went psychotic, though to a much lesser extent this time. Same test as before and the same result.

During this time we decided to change neurologists as we felt his current one was becoming less inclined to discuss things with us and had a tendency go along his own path. We didn't mind that so much when we were new at the game but with the amount of research that we had done we always had a lot of questions and ideas that we felt were not being dealt with to our satisfaction. Tyler's new neurologist is far more inclined to listen to us and discuss his reasons behind any suggestions. Anyway, getting back on topic. He suggested we try a drug called Ospolot. We had never heard of it but decided to give it a go as he claimed it had very low side effects and tended to work where kids had reactions like Tyler's. Apparently it has been around in one form or another since Napoleon's time.

Tyler has made amazing progress since being on this drug. He now sleeps through the night five or six days a week and only has random wakefulness on the other nights. He has been on the drug since August 1999 and has only had one run of seizures since then and that was attributed to the fact that we had been giving him an antihistamine to clear up a runny nose. We didn't know it but antihistamines can apparently lower the seizure threshold on some kids. So any of you parents with children with epilepsy, consult your neuro before giving your child antihistamines. The only side effects he has is a lower appetite which we combat by giving him pediasure (on the doctors advice) and hyperactivity which is easily controlled with a minute dose of dexamphetamine. Dexamphetamine is on of the drugs prescribed for ADHD. Tyler's dose is less than one tenth of a regular dose but has a remarkable effect. He is still fairly hyperactive but he is also able to self regulate his behaviour when he is on his meds. You can tell in the evening when he is coming down as he starts to really bounce around the house.

Two weeks ago we started to really realise just how bad Tyler's ability to process sound was as he has started to comment on sounds like the phone ringing or air conditioning. He is proudly informing us that he can hear them. It is as if he has not truly heard them before. He has not had a major relapse in over 18 months and we hope that it continues.

As for Tyler's schooling, we did eventually get him into the deaf school and he has learnt a lot of sign language. Unfortunately he does not like to use it as he has poor fine motor skills (he is seeing an OT in the next couple of weeks to start a program to help out with it) and he also sees his need to sign as a reminder that there is something wrong with him. Keeping up his self esteem can be a full time job sometimes. At the moment he also attends a local school two half days a week where he has a full time aide.

We don't know what lies in store for next year for schooling as he will not longer be in preschool and with out a full time aide he cannot cope in a full auditory school as he still has a severe language disorder and will get lost very quickly. The deaf school still does not want him there and is resisting his advancement to the next class. His schooling future is currently in the hands of the disability discrimination authority and the lawyers. When we can I will give a fuller account of the events but for now we have to wait for "due process".

All up, Tyler has had a fantastic two years with very few seizures. He still has a severe language disorder, poor motor skills, what is apparently semantic pragmatic disorder, and aphasia, but we couldn't be happier with him. Every time he makes the tiniest advancement we heap him with praise and tell him how proud we are of him. It would be nice if other people around him such as his teachers would concentrate on his successes rather that focus on his difficulties.

That will do for now. I will add a bit more in the next few days and will try to update some of the links and research. I may even offer some minor modifications to the above once my wife has read it and pointed out any minor errors or omissions (omissions more likely than errors).

13 February 1998

Well, we had the meeting yesterday. We had it with the senior physician from the childhood development unit and the senior physician from the audiology unit. They had an OT in the room to look after Tyler and to provide her perspective, as well as another doctor whom we believe to be a resident working in the child development unit. I won't go into major details as the meeting lasted over three hours. The good bit is we didn't have to convince anyone of anything, so the time in the meeting could be well spent discussing strategies and treatments.

After a long discussion, it was decided that another series of hearing tests would be organised starting from the basic sound/visual reward (there's no point doing a test using earphones as he won't leave them on). Then they propose to do an electro cochliagraph (did I get that right?) where they sedate him and put a probe through his eardrum to test his cochlial response. While they have him out they will also do a brain stem test. We are not sure about the ECG as we are not really in favour of invasive procedures, but we will discuss this more fully with the audiological doctor once we get the initial audiogram results.

A while ago Tyler was diagnosed with central deafness and we were under the impression that this diagnosis would get him into the deaf school. If you've been keeping up with the diary, you would know that this is not the case. We have found out that the deaf school only accepts children with hearing loss up to the cortex only. Any hearing deficit after that they regard as a language disorder and not in their charter. So it wouldn't matter how bad Tyler's hearing was described at, he wouldn't get in. We discussed this with the doctor and he told us that in actual fact, until a lot more tests can be done that cannot tell where in the auditory chain the breakdown occurs. Based on this he is more than happy to change Tyler's diagnosis to cortical deafness which will bring Tyler under the deaf schools umbrella. A full diagnosis can be delivered when he is a little older and they are able to perform more acurate tests.

We are having a meeting with the minister (US equivalent is a congressman) for disability and the shadow minister for education who is our local member on the 26^th of this month. The senior child development doctor has indicated that he is willing (and indeed keen) to come along to help out. It looks like a proposal will be put forward that they will provide the funding for Tyler to attend the deaf school so as to remove the argument that they don't have the funding. Looks good so far, keep your fingers crossed.

Last but not least, we have been given this wonderful award by a woman who has dedicated her website to the hearing impaird. Click on the award to go and visit her.

Almost forgot. Finally got the car back. The mechanic showed me the car parts that he replaced and I saw that they did need replacing (I grew up inside an engine bay so I'm not completely ignorant). He professed surprise when I expressed my dislpeasure at not being told before hand. If we we to make a full complaint it would be long, costly and we would only have a fifty fifty chance of winning. We've decided it's not worth the effort and are going to let the matter rest. We have more important battles to fight.

9 February 1998

Well, the honeymoon is over. Tyler's was assessed last week to have almost no receptive communication at all. He still knows plenty of words but he is starting to get them mixed up. He is calling me mummy on minute and daddy the next. Luckily the assessor works for the school that we have been trying to get him into for the past few months and she will recommend him as a candidate for their signing program as he still uses all the signs he has learnt appropriately. We are having a big meeting with several of the hospital's senior doctors to discuss Tyler (It's funny now that he is two and has the language of a nine month old that they now choose to believe us). We are going to discuss possible tests (brain stem and evoked response) and see if we can come up with a definite diagnosis. The head doctor has already indicated to us that he is willing to stand up and champion our case to the deaf school to get Tyler admitted. It is so nice when things go our way for a chance. I'll try and update the diary by Friday with the results of the meeting.

P.S. We get the car back this week and it will cost nearly $6,500!!! After we get it back we will be taking action against the mechanic as he has inidcated all along about a $2,000 to $3,000 bill (even only a few days before we got the bill). He also is billing us for a few repairs that he "felt" were necessary ($600 for a new clutch). Stay tuned for details.

4 January 1998

Christmas and New Year have come and gone and nobody went mad. That's a good sign. It has been interesting though. I'll only fill you in on things significant to Tyler.

The weekend before Christmas, we were driving home from my sisters house and the car decided to die (in abig way too, the bill will be around $2,500). The tow truck did not arrive until after dark and as we were on a busy one lane road the lights were flashing. We didn't think anything of it at the time, but noticed Tyler was sullen and quiet the next morning. It slowly dawned on us that Tyler was in the midst of a run of seizures, probably brought on by being over stimulated from the flashing lights. We expected him to lose all of his language but instead he started learning words hand over fist. In the 12 months up until this lot of seizures he had learned only 10 words with extensive speech therapy. Since these seizures he has learned over 30 new words. He can point to all of his facial features and all of his major body parts on verbal cue, identify several animals and name various street signs (eg Stop).

We have spoken to several parents with similar children to Tyler and if their expariences are anything to go by this remission should last around six months. During this time we need to teach him as many new signs as possible so when the inevitable happens (no, I am not being pessimistic) he will still be able to communicate. He goes to visit his speech therapist on Tuesday and she should be blown out of the water with his development.

12 December 1997

Well it's been a busy week and a bit.

Firstly, Tyler didn't have the bone scan as by the 3^rd, he wasking fine on his foot and if was ok then we would not subject him to needless tests. Also this means he won't have his foot in a cast for Christmas.

Secondly, true to my words that better arrangements could be made for Tyler's schooling, things have swung a bit. We sent copies of his neuros report to our local paraliamentary member the anti discrimination board and the human rights commission. It seems that it is illegal in this country for them to discriminate against Tyler because he isn't physically deaf. We also sent a lot of testimony from other parents and proffessionals stating that Tyler needs to be in a reverse integration program, and they have the only one. Yesterday, the school rang up to say that they hadn't seen the copies of the neurologists report (pure bunk as it was expressed to them before the committee meeting) and in light of them would be reconsidering their position on Tyler. We know for a fact that our local member has been very busy on our behalf and has shaken a few branches out there ;-). We expect a phone call within the next week saying that he has been accepted. I'll let you know.

Thirdly, and lastly, we received this lovely award from someone who appreciates our work. Click on the award to go visit her. It's nice to be appreciated.

2 December 1997

Well Tyler spent most of yesterday at the doctors but at least they think they know what is wrong. They susbect he has a stress fracture of the heel. He will be going for a bone scan later in the week. Unfortunately this means he will have to be knocked out. Karen and I aren't too happy about that but with his neuro problems we have to be sure it is not more serious. If it is a stress fracture then he will have to have his foot in a cast for a while. Not a great way to spend Christmas.

30 November 1997

Tyler's big day out.

What a day. Today is Sunday. Sunday is my sleep in day (Karen has her sleep in day on Saturday). Karen came into the bedroom early, woke me up and said "get dressed there's something wrong with Tyler, we have to go to the hospital." I wasn't too concerned because she wasn't too concerned and she had let me sleep for an hour.

Tyler woke up this morning and couldn't/wouldn't put any weight on his right foot. He would only walk an his right toe. Oddly enough he didn't seem to be in any discomfort. We examined the sole of his foot looking for splinters, or cuts and found nothing. So we took him to the local medical centre. They decided he needed xrays. Ever tried telling a two year old to sit still while you twist his leg into funny shape and take a dozen xrays? It's not much fun for either party. The doctor took a look at the xrays, proclaimed ignorance and refered us to the local hospitals emergency department. Off we go to the hospital. It's now about noon. We are told that the orthopaedic registrar would see him next and not to let him have anything to eat or drink. It was nearly 1:30 by the time the registrar saw him and tyler was getting very cross about the lack of food. The doctor looked at his xrays, prodded and poked him for a while. He then said he didn't have a clue and we should go home as he was sure it was nothing to worry about. Ha! Not so fast pal! We told him that we were not leaving without more answers. So we waited to see an emergency registrar who administered a basic neuro test and called for the paediatric registrar. He turned up had a look at Tyler and suggested we go home and phone his neuro. We got home at 4:00pm (we left home before 9:00am).

I phoned his neuro expecting to get an answering machine as it's Sunday but found him on weekend duty. I explained the days procedings and he agreed the all was not well in the state of Denmark and suggested that we go to the emergency rooms at his hospital as it is a specialist childrens hospital. So off we trek and arrive there around five. We get in to see a doctor at 5:30 and set about explaining Tyler's medical history and symptoms for the fifth time today. This time the doctor does a more thorough excamination and says that there is something wrong with his hip as he is movong it funny but apart from that she can't determine what may be wrong. She goes to get the orthopaedic registrar to have a look. The ortho agrees that there is something amiss and she suspects that it may be some form of infection in his hip. She took aload of blood and we have to go back again in the morning for the results and we will then see an othopaedic specialist ad his neuro.

We got home at 8:30pm. Heck of a way to spend a Sunday. Sure beats relaxing around the house and Taking Tyler to see his favourite childrens band. Poor Tyler went to bed as soon as we got home and while he hasn't woken up he has been whimpering in his sleep. He has taken the day very well with no less than six doctors man handling him, prodding him and generally shoving him around. It's days like this I feel most sorry for him. He seems almost more at home in a doctors surgery than he does in his own home. Karen went to bed about half an hour after Tyler and I am aiming to make it to bed before 1:00am. I'll fill you in on the outcome of tomorrows doctors.

28 November 1997

Yesterday was a big day for Tyler. He had his regular visit to his neurologist and his case was heard by the committee at the local deaf and blind school.

First the neuro. He beleives that Tyler may have suffered focal encephalitis when he was 12 months old. He conceded that this may have been triggered by his immunisation but of course he can't be sure. The prognosis here is that he will probably never get his language back fully but the seizures should be controlable. While he may never be able to understand and use verbal communication, he should have no problems learning sign language as his primary means of communication. It also means that he shouldn't suffer any intelectual problems.

Now for the school. Karen and I had a meeting with the head of childrens services at the deaf and blind school on Wednesday. He was trying to prepare us for the inevitable rejection. They claim that Tyler has a language disorder and as such does not fit their charter. Their charter is to only accept children with a minimum hearing loss of 60dB. After an hour and a half I think he got the message that we weren't about to be pushed aside. We got the inevitable phone call yesterday saying he didn't meet their current criteria but could we com in for a meeting this morning as they had an alternative for us. We went in and were told that while Tyler wasn't to be accepted to their school. The were willing to provide intensive sign and speach therapy for a period of three months and then review his case. We accepted this as a palatable alternative until better arrangements can be made, and you can trust me on this, better arrangements will be made.

18 November 1997

We have been trying for quite some time to get Tyler into the local deaf school. It is the only school in Sydney that uses Auslan, the official language of the Australian deaf community. Next week his case goes before the board to see if he gains entry. They have basically told us that he won't get in by saying that they will not allow his speech therapist, his neurologist or his childhood development coordinator (also a pediatric neurolgist) to attend as "there is no need". They claim that because he can hear environmental sounds that he doesn't need signing classes. We were told that he needs a facilitated communication package. We checked that one out. It involves him carting around a picture book and showing us the picture of what he wants. Normally this is used for severly autistic or downs children.

If they think that they can tell us that he didn't get in and we will go away, then they obviously haven't been paying attention. We have decided that Tyler will have the best possible chance at a normal life and we will not stop fighting until he gets it. We have already briefed all of the professionals in our corner, and they include people from his speech therapist up to our local state parlaimentarian, and they have all indicated that they will back us all the way. Keep posted for the outcome (around the 27^th of this month I think).

1 November 1997

Well, I've found out what the doctor suspects is wrong with Tyler. It appears that it may be a problem with his mitachondrial DNA. Mitachondria a small units within the cell that provide the cell with the energy that it needs to function, a bit like a transformer. These little units contain their own DNA and if this DNA is damaged in any way, the mitochondia don't produce enough power to run the cell. Each cell has hundreds of these mitocondria so a few not working has very little effect but when enough stop working the cell becomes underpowered and starts to malfunction. This can also make the cells more susceptable to damage from severe shocks (such as immunisation). This condition is inherited purely from the mother as all of a bodies mitachondria is from the ovum (the DNA in the ovum knows how to access the mother's energy, the sperm's doesn't). Unfortunately this condition is progressive and can be more sever if it is an inherited trait. I am not sure what can be done to help at this stage but if Tyler does have this condition then we will seek advice from the doctor.

This is an extremely simplified explanation. A fantastic article appears in Scientific American's August 1997 edition. The author of the article also has an extensive page at http://www.gen.emory.edu/mitomap.html.

23 October 1997

Saw a new doctor today. He came highly recommended by the Vaccine Awareness Network. We spent three hours with him and we spent the first two hours discussing Katherine's medical history. it was his theory that there may be some medical reason in her past that made Tyler suceptible to damage from the MMR vaccine. What we found was that Katherine's mother may have been poisoned from toxic pesticides and industrial solvents from her time living on both farms and army bases in the 40's and 50's. Her mother is now showing sign's of this poisoning herself. Both Katherine and her sister have severe allergies and asthma. The doctor will probably be running some blood tests on Tyler to confirm his suspicions after he does a little more research. I can't remember the exact name of what he is looking for (something beginning with myo I think), but it is passed through the maternal line only. This means Tyler cannot pass it onto his children but if he had a sister then she may if she inherited it from Katherine.

The upshot of this is that if the doctors had taken notice of Katherine when she tried to tell them about her family history Tyler may have been excused the shots and he would now be a perfectly normal little boy. We could have taken ther measures to protect him from the diseases.

20 October 1997

Today we found another school that will take him; Mosman Park School For The Deaf. Only thing is this one is in Perth. This all stems from the fact that the ffederal government has halved the budget for the disabled schools and thus putting the onus on the parents to help their children. Unfortunately, without proper guidance us parents may not be giving our children the help they need. This means that they don't develop to their full potential and end up being a burden to the taxpayer. To cater for this extra burden the government then takes funds away from schools and hospitals (things non essential for the successful running of government). Notice a pattern here? I'll get off my soapbox now.

13 October 1997

Today we were informed by the Department Of Education that there are no educational services in this state (NSW) that cater for Tyler's needs. It was recommended that Tyler use the home education system. It is the governments way of telling us to take a hike. We don't intend to. Apparently there is a school that will take him in Victoria (10 to 12 hours drive south and miserable weather) but we are not keen to pack up and move.

It seems our battle starts anew. At least this time we know where to make the most noise to get help.

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