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Timeline Entries
1999 to 2003
2004
2005
2006
2007
2008
 
  1999
 
  Prior to December  

Natasha developed a facial rash, we visited the doctor who prescribed a Hydrocortisone cream. This cream didn’t help at all.
 
  After Christmas   Natasha now has a strange rash on her upper thighs as well as the facial rash, it is almost like she has two slap marks at the front but they are very red and itchy.
 
     
2000
 
  February-March   Her personality has changed she is starting to get depressed, not riding her bike, and complaining of sore legs all the time. She is just sitting and watching TV all day if we let her. Generally not a happy little 4 year old. Over these months we made many visit’s to various GP's, although there is no progress. She also still had the rash.
 
  Late March   She will no longer walk up stairs, she will sit at the bottom and cry if we don’t carry her up, she has trouble getting up off the floor and just sits around watching TV. Sarah the girl’s nanny can’t get her to walk anywhere. She is still depressed and complaining of a sore back. I have seen the doctor again to ask for a referral to a paediatrician.
 
  Early April   We have an appointment with a private paediatrician on the 4th April (still heard nothing from Waitemata health) paediatrician Michael Watt at Ascot. Dr Watt spotted the rash straight away and after checking the strength in her muscles he diagnoses Dermatomyositis but would like to confirm after tests. He said he would write to the Auckland Children's Starship Hospital
 
  April 9th   Tasha can no longer sit without support, this is getting very scary , we are so worried about her.
 
 

April 10th

 

   We take Natasha to the Auckland Children's Starship Hospital first thing in the morning. We couldn’t wait any longer for an appointment as she can’t even sit by herself. She is admitted straight away. She had a lot of blood tests etc The only paediatric rheumatologist in the North Island, Dr Sue Rudge, is away on holiday so other doctors have to cover for her. The neurologist that visited was horrible. He sat Natasha on the ground and just said “get up” it nearly made me cry. Natasha is like a Guinea Pig, all the students come through over the next couple of days. Tasha is only the thirteenth case to be diagnosed in NZ. Her treatment starts with high doses of intravenous steroids, methotrexate, folic acid and rocaltrol. CK 3280
 
  April 14th   Natasha’s cousin Matthew has his Birthday. Natasha is discharged on 40mg prednisone twice a day, she is always hungry now and going to the toilet much more often especially at night.
 CK now 972
 
  April   Natasha has Physiotherapy twice a week in the hospital pool with Janine. Janine is lovely and very helpful. We have to go to the Hospital every Thursday for methotrexate.
 
  May-Nov   The steroids have made Tasha’s weight jump up from 17kg to 26kg she is swollen all over and has dark hair growing on most of her body including her face. She is slowly being weaned off the steroids. She starts school next year so we really want her weight to come down as we don’t want the other kids to tease her.
 
  December   The reduction of steroids has had a noticeable affect with the loss of weight. She is almost back to her normal size but she is still very hairy on her legs.
 
     
2001
 
  January   Tasha starts school at the end of this month, you wouldn’t know she had had anything wrong with her; she is still a bit clumsy but looks fine and only weighs 20kg very normal for a 5year old
 
  February - August   So far so good all is going well the steroid’s are coming down slowly and her blood count is fine.
 
  September   We have noticed Tasha is struggling to climb stairs again and getting tired when out walking. She is also starting to complain of sore legs. We are off to the doctors for a blood test.
Result = CPk 695 this is not good. Dr Rudge is away again so our GP DR Adams has contacted the hospital for advice. We are to start her on a high dose of steroid’s again. 40mg for three days then 35mg three days etc until down to 10mg then hold on this until we see Dr Rudge
 
  October 11th   Hospital visit with Dr Rudge, latest CK blood count is back down in the 100’s (normal) she is still a bit weak and has been given some exercises to do. We will see doctor again in six weeks. Steroid down to 7.5mg 
 
     
2002
 
  2002   Most of 2002 has been great, by mid year Natasha can do the monkey bars like a pro missing a bar in between and her swimming is fantastic. She can keep up with most kids her age group and the rash has completely gone, weight normal.
 
  August   Pred down to 1/2ml a day to be weaned down to 1/2ml every second day then off completely
 
  Septmber   Tasha’s blood results are excellent. Last dose of Pred was on the 18th still taking folic acid and methotrexate.
 
  Early to mid October   The rash appears to be returning on her hands mainly and a little on her face. Blood tests are still normal no weakness noticed.
 
  October 20th   Natasha is progressively getting weaker and complaining of sore legs and back. The rash is everywhere and very bad on the face and hands with some discolouration on the neck and chest area. Here we go again.
 
   October 24th   Bloods done. Result = CK3700 she can’t eat her breakfast today as her arms are tired. Natasha is having a massive relapse.
 
  October 25th   Tasha is back on Prednisone 2ml/10mg twice a day. She is getting very weak and is back at physio on Wednesday afternoons in the hospital pool, she will no longer go to Gymnastics or Swimming lessons.
 
  November 4th   Bloods CK336
 
  November 16th   Natasha did swimming lessons today, she tried really hard and only took a few rests while the others did their lengths
 
  November 18th   Blood test taken prior to seeing Dr Rudge on Thursday 21/10/2002 CK 220 coming down slowly pred now 2ml in morning 1ml at night 
 
  December 16th   CK 215 not much change, Dr Rudge has put the Methotrexate up to 10mg once a week. Natasha mentioned having to use the toilet a lot at night so Dr Rudge said to take all 3ml in morning to see if that helps.
 
     
2003
 
  January 30th   Visit with Dr Rudge, Tashas CK down to 136 which is in the normal range. Her steroids are to reduce to 2.5 for two weeks and then down to 2ml call after 1 month about reducing further. Next appointment 8 Weeks time.
 
  February 17th  

Tasha seems a little weaker, we saw Janine Wednesday 26th her rash is quite prominent on her hands and seems to be back on her eye lids and a little over the nose, she has an itchy rash on upper thighs.
 Dr Rudge is away again so Janine will talk to Dr Jackie Yan about putting up steroids
 
  February 28th  

We had a blood test done today, we want to check the results before putting her back on a higher dose of steroids she is upset about taking a higher dose because she’s worried about being teased at school. Dr Yan rang she has spoken to Dr Rudge who wants Tasha back up to 4ml 20mg steroids, we still want to check bloods first. I would like to do the rapid reducing steroids as we did in Sept 2001. But I will need to talk to the doctor.
The results came back and there was nothing unusual so we will wait and test again in one week.
 Second bloods are about normal for Tasha, it must have just been the day at the beach Friday then the day at the pools Sunday Too much sun and too much running around must have worn her out.
 
  April 9th   Blood results CK 111 The rash is still noticeable on her hands and one patch on her upper thigh which has been there for a couple of months her face isn’t to bad at the moment just some rash on nose and eye lids. We see Dr Rudge Thursday
 
  April 10th  

It is three years since being diagnosed now.
Dr Rudge is pleased with her test results Normal range is anything below 180 so 111 is pretty good; we are to reduce steroids very slowly so for two weeks she will alternate between 2ml and 1.5ml then stay at 1.5ml until our next visit in three months time.
 
  12 June 2003    We have had a blood test done on Natasha again as she seems to be struggling yet again but they have come back normal.
 
  June 15th   I have spoken to Janine the physio at Auckland Children's Starship Hospital she would like to see Tasha on Wednesday; the rash is coming back on both hands and face.
 
  June 18th   We saw Janine today she is not sure Tasha is going through a flare up or her muscles are just inflamed she will talk to doctor Rudge and in the mean time Tasha has exercises she has to do everyday and we have to make her take breaks at swimming. She should not over do it. We are going back to see Janine in a month. 9.7.2003 at 11.30am
 
  July 3rd   Blood test around CK 136 we will need to check with doctor
 
  July 19th   Blood test done CK now at 164 the nurse at our GP said other things are all out of kilter as well.
 
  July 21st   We went to see Janine again on the 9.7.2003 Natasha seems to be having more trouble getting up off of the ground than when we last saw her but she has been very sick over the last week. Janine has given her more exercises to do and will see her again when we see Dr Rudge on the 24.7.2003
 
  July 24th  

Appointment with Dr Rudge and discussed Natasha’s apparent relapse, her steroids are to go up to 15mg or 3ml redipred daily. This can be all in the morning if it keeps her awake if she takes it in the afternoon, otherwise to be split between morning and evening. The little lumps in her chest may be calcium she has had an x-ray and we will find out about that next visit as Dr Rudge would like to see her in 4-6 weeks. She has also given us a new blood test form with another test on it which may show up the changes better than the CK test does, this is to be done in Two weeks and again prior to our next visit.  We went to Physio after seeing Dr Rudge and met the new Physio taking over for Janine. Her name is Haeley Wood and we are to see her again on the 12 August. Natasha has more exercises to do.
 I have an Appointment with Income support on 5.8.2003 to get Tasha back on the disability allowance as well.  This will give her a community services card for all her prescriptions
 
  August 14th   I rang doctor Rudge about the steroids as Natasha is puffing up again and she said to drop then to 2.5ml
 
  August 26th   Seeing Haeley  today, still haven’t had a letter about new appointment.
 
  September 16th  

Natasha is doing ok, there has been no great improvement in her strength but she is coping well and is a happy child most of the time.2
Rick took Natasha to see Haeley
Next appointment at Auckland Children's Starship Hospital is 2.10.2003 need to do a blood test prior to this.        
 
  October 2nd   We went to see Dr Rudge today, there has been no major improvement although her CK is back down to 81 now and all the other blood results were good. The Xray didn’t give us much info on the calcium lumps in her test. The radiologist was not committed as to what they actually were so we are to monitor them ourselves. We saw Haeley as well she seem to think Tasha has more strength through her shoulders so that’s a bit better. Next appointment should be in 4 weeks. Her med haven’t changed.
 
  October 23rd   Natasha went to see the physio therapist Haeley again today. Natasha has a camp coming up and they will be doing a bush walk which there is no way Natasha could cope walking that distance. The physio has organised for us to borrow a special wheel chair for the camp.
 
  October 30th  

Visit with Dr Rudge today no change in Pred but Methotrixate have been increased to 12.5mg from 10mg to see if that helps. I didn’t get the exact numbers but Dr Rudge said the her blood test was all normal but we need some improvement in strength before the steroids can be lowered. The rash on her hands and face is quite bad but that is probably just from the amount of sun lately.
 We should see Dr Rudge again before Christmas. We have another appointment with Haeley later next month.
 
  December 4th    Dr rudge said bloods ok. We had a visit with DR Rudge pred down to 2ml everything else remains the same.
 
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The above graphic is from MAORI FLAVA'D.
Unfortunately I cant remember where I got the one on the side from