I have written Todd's story in diary form mainly because there is so much say and I thought it would be easier for you to read it like this rather than in essay format!
Day 1:- March 24th 2005
Todd awoke with a rash (similar to measles) over his the trunk of his body and the tops of his arms and legs. He had a temperature of 39.9 and he is as white as a sheet apart from the redness of the rash. I took him to the doctors where we were told it was a virus and it would run its course. He refuses to eat much and drinks very little. Todd and I had very little sleep tonight.
Day 2:- March 25th 2005
Todd's rash has spread to his arms, hands, legs and feet, temperature remains high and difficult to control. Returned to the doctors and told it was viral he would be fine. Still not eating much and drinking is minimal. Very bad night for us tonight with todd hardly sleeping.
Day 3:-March 26th 2005
Todd's hands and feet are bright red in colour and very swollen. He complains that they are painful and wakes regularly throughout the night crying out with discomfort. Rash and temperature as day 1. Refuses food altogether.
Day 4:-March 27th 2005
Todd's eyes are sore today, he remains very lethargic and seldom moves from the settee. Rash and temperature remain the same as day 1. No food. Drinking through a straw. We have had another bad night tonight, just an hour or two's sleep.
Day 5:-March 28th 2005
Todd's eyes are puffy with a redness around the eyebrows and bridge of his nose, the whites of his eyes are now bloodshot and tonight he complains that they hurt. His lips are bright red and have started to crack and peel, mouth looks sore around edges. Rash is less apparent on his face however remains virulent over his body. Temperature still at around 39.7. Fluid intake is very poor and hasn't eaten since day 2. I am totally shattered, Todd remains lethargic and sleep is almost non existant!
Day 6:- March 29th 2005
Enough is enough, surely a virus would show signs of passing by now!! Took Todd back to the doctors where we were lucky enough to see a doctor who had seen Kawasaki disease before. The doctor took the "better safe than sorry" approach and sent us straight to the hospital (with a letter from her). At the hospital they took blood and several consultants observed Todd. After an hour the decision was taken to start treatment for Kawasaki's disease as Todd satisfied the criteria of having 4 out of 6 of the main symptoms of Kawasaki's disease. Treatment consisted of a 12 hour infusion of immoglobulin along with high dosage aspirin. The infusion was given to "dampen down" the effects of Kawasaki's disease and therefore lessen the risks of Todd contracting damage to his arteries. Finding it alot to take in!
Day 7:- March 30th 2005
Todd's temperature dropped dramatically and the rash was less visible than before. He was sent to the local children's hospital to see a paediatric heart consultant where they performed an ECG and an ECHO upon him. Luckily Todd's results were clear so far. We were given an appointment to return for another ECG and ECHO in 7 weeks. Todd was sent home with a prescription and instructions that he remain taking an aspirin a day until his follow up appointment. We seem to be walking round in a daze, it is all so unbelieveable. Why todd???. Thankfully Todd slept well tonight.
Day 9:- April 1st 2005
Todd's hands have started to peel, all be it very slightly at present and his body has flakes of skin shedding from it. The rash is hardly visible. and his temperature is completely normal again. He is irritable and his appetite has not yet fully returned. Todd is drinking plenty now which is encouraging to see and he appears more himself. Colour has started to return and he doesn't look so deathly white anymore. Another good nights sleep. (see picture of hand and body skin on photo's page)
Day 10:- April 2nd 2005
Todd's hands peeling alot today, very strange how quickly the peeling starts to take a grip. (see picture of his hand/fingers on photos page)
Day 11:- April 3rd 2005
Todd's big toe has just started to peel.
Day 12:- April 4th 2005
Emailed Carol & steven Laney in america after visiting their site (www.kawasakidisease.freeservers.com) asking to purchase one of their kawasaki heart bracelets. They havent ever sent one to the uk before and are sending Todd's free as he will be the first (an honoury one). Should recieve it within 5-7 days.
Day 13:- April 5th 2005
Wow big toe has started to peel big time.
Hands are are peeling off now. (see picture of his hands and toe on photo page).
Day 14:- April 6th 2005
Todd's appetite is coming back and he has an obsession with bread and butter.
Day 17:- April 9th 2005
Todd recieved his kawasaki heart bracelet from Steven & Carol Laney today, he is so happy with it.
Day 20:- April 12th 2005
Todd is eating us out of house and home! Not that I am complaining it is great to see my little boy becoming more his old self again. (Going through bread at a rate of knots though!)
Day 21:- April 13th 2005
We are going on holiday to Florida U.S.A very shortly and have been adviced by Dr Robert Tulloh (one of Todd’s cardiac consultants) inform the travel insurance people of Todd’s recent episode of Kawaski disease as it could effect it.
Rang the insurance people and had quiet a shock, they class Kawasaki disease as a high risk illness and we will have to pay a further £97.50 to have him correctly insured!!!!! Apparently its because if he was to become ill in America he would have to be hospitalised it doesn’t seem right considering we only paid £250 for all seven of us to be insured but its a lot cheaper than the medical expenses should the worst occur.
Day 22:- April 14th 2005
Todd's health visitor paid a visit. She didnt know much about Kawasaki Disease but is willing to help raise awareness and has offered to distribute leaflets (once they are made) to young parents along with the meningitis leaflets. I am starting to feel more positive about things now.
Day 25:- April 17th 2005
Todd's feet are peeling just like a snake shedding its skin! I suppose we are lucky that Todd isnt bothered by the peeling skin and hasnt tried to pull it off either. He knows he has kawasaki's and that he is very lucky hat he has no damage so far. He tells people "I am special because I am very, very poorly". He wears his bracelet that Steven Laney (www.kawasakidisease.freeservers.com) sent him all the time and tells people that steven in america sent it to him! (see picture of his feet on photos page)
Day 26:- April 18th 2005
Todd is much better now although still grumpy and whingy, his appetite is better than it was before. He still tires very quickly and we have along way to go before he is totally right again. The nurses have told us can take several months before he is back to normal. So for now we wait taking each day as it comes until the next ECHO an ECG, and god willing all will be fine then too!
Day 34:- April 26th 2005
Took Todd to the doctors and he has an itchy raised sore looking rash (looks a bit like eczema). The doctor gave us a huge pot of aqueous cream to apply as he thinks it is eczema, apparently its quiet common after Kawasaki disease to get eczema.
Day 43:- May 5th 2005
We fly out of the Uk today, for our much needed holiday. Although we are taking the boys to Disney world Florida (which will no doubt be a little hectic), after our roller coaster of emotions with Todd’s illness we need a holiday (especially Todd and myself). The boys are so excited, desperate to meet Mickey mouse and to go to the beach. We have had to make sure Todd’s aspirin was correctly labelled and in blister packs to ensure it wouldn’t be confiscated at U.S.A customs, and that we have the letter from Todd’s consultant confirming he has had Kawasaki disease (just in case).
Day 54:- May 16th 2005
Today I noticed Todd has ridges going across his finger nails, they are a bit like grooves running sideways (from one side of the finger to the other) and they are white in colour. How bizarre!! Will check whether that is Kawasaki related once home.
Day 58:- May 20th 2005
Home again. We have had a fantastic holiday and a much needed break. The boys absolutely loved it and Chris and I are fully rejuvenated and ready to tackle any problems we might encounter at Todd’s next ECG and ECHO.
Day 59:- May 21st 2005
Scoured the internet today and it would appear that the ridges on Todd’s nails are quite common after Kawasaki disease. It’s something to do with the bodies healing mechanism.
Day 63:- May 25th 2005
Today Todd had his second ECG and ECHO.... they are clear!! I cant express how thankful I am that he hasn't suffered any long term coronary damage, it is just such a big relief!! We are able to stop the aspirin too and have to go back in six months for one last ECG and ECHO (just to check nothing has occurred from now until then although very unlikely they still need check). Todd's tantrums are not as frequent now however he still gets stroppy very quickly and tires easily.
Day 76:- June 7th 2005
I emailed the “Evening Post” our local newspaper with the hope that they might print an informative article about Kawasaki’s Disease. Thought it would be worth a try anything to raise the awareness of this illness!!
Day 79:- June 10th 2005
The Evening Post have been in touch and they would like to run an article and feature Todd’s story, how fantastic is that!!!
The photographer came out today and took some pictures which will appear along side the article, I am so thrilled at the prospect of actually helping to make a difference by telling our story.
Day 80:- June 11th 2005
Todd has awoken this morning with a very high temperature. Not eating or drinking much very clingy.
Day 81:- June 12th 2005
Todd’s temperature is 39.9, he has a headache and he has started to develop a rash around his neck and ears. I’m trying to remain calm but it is very difficult once your child has been so ill.
Day 82:- June 13th 2005
Todd’s temperature remains high and the rash has spread across his entire body, he is complaining of a headache still and the skin across his eyes and the bridge of his nose is swelling and is reddened, his neck is puffy and I am unable to tell if his glands are swollen or not. Todd’s mouth is dry although his lips aren’t cracked nor are they red. The rash is exactly the same as when he had Kawasaki Disease. I don’t like the look of it, it reminds me too much of the Kawasaki’s so I phoned Dr Tulloh (one of Todd’s consultants) after explaining the symptoms and my fears that although unlikely I was worried it could be a reoccurrence (only a 2% chance) he was happy to arrange an appointment to see Todd. We made an appointment for Wednesday (which will be day 5 of the illness).
Day 83:- June 14th 2005
Todd’s temperature is still high, the rash is still present and his eyes are completely swollen, red and puffy now. He isn’t eating and is drinking but not a lot.
The Evening Post rang and did an interview with me today (story will be in the paper on Thursday).
Day 84:- June 15th 2005
Todd’s temperature has fallen although still higher than normal. The rash is persistent, his eyes are less puffy or red and his lips although dry are not cracking. Dr Tulloh gave Todd a thorough examination and his diagnosis is that Todd hasn’t got a reoccurrence, (what a relief!).He performed another ECHO to clarify things and it was clear. He is of the opinion that it is more likely Todd has caught an infection or virus and that his body is reacting in a similar but not so extreme way as it did with Kawasaki’s (apparently is quite common). However to be sure he has asked for us to return Todd to see him in 3 days when he will examine him again and run another ECHO.
Day 87:- June 18th 2005
Todd's temperature has almost disappeared thankfully and after visiting Dr Tulloh at Bristol Childrens Hospital which entailed a further ECHO Dr Tulloh is sure this last episode was just a virus which effected Todd's body in a similar way to the Kawasaki's disease. To say we are relieved is a huge understatement and we are just thankful that Dr Tulloh was able to see Todd at such short notice.
Todd's story appeared in the Bristol evening post and although the interview was not typed up correctly and several facts were wrongly represented at least we have brought this illness to many peoples attention that may not have even been aware of its existance.
February 4th 2011
Thought I would update on Todd's progress over the last few years.
Todd is now almost 10yrs old and has suffered no lasting medical heart conditions as a result of Kawasaki's disease. However we have noticed his temper has increased and his fuse is extremely short since his KD and this is worsening with age. He suffers with virus' and colds more often than before the KD however there is yet to be any research done to see how KD effects our kids in later life so I guess we will find out in due course.
Decemeber 9th 2011
Today we travelled up to London (Todd, myself and my mum), Todd has been asked to take part in a KD research study at GOSH (Great Ormond Street Hospital) where they are doing a study into whether children who have had KD suffer from hardening of the arteries in later life. We got up at 6.30am and collected mum at 7.30am, Todd has had to be starved from 7am this morning and is only allowed sips of water until his blood tests have been done. We travelled up on the coach leaving Bristol at 8am (its a nightmare to park in London), once there we took Todd into Harrods as he has never been to London before but has heard of Harrods and wanted to see it. Then we took the tube to GOSH, it was packed even though it was 11am, Todd was quite stressed by the hussle and bussle of the tube station and was quite worried he would get lost. Bless him he hung onto my hand for dear life. We arrived at GOSH for our 12 noon app and Todd was immediately taken to a side room for his tests to start. They consisted of a some sort of blood pressure/velocity/flow test which monitored the flow of blood from the artery in Todd's neck to his arm and then the flow from the artery in his leg to his arm. Then he had his blood taken for them to perform a selection of tests on, after this he had an ultrasound on the artery in his neck during which they measured the artery to ensure there had been no thickening. Todd was given his ultrasound picture of his neck artery :) Todd was then allowed to have something to eat, which the hospital provided. After lunch we were reimbursed our expenses (up to £50) and then made our way to another department where Todd was given an ecg (he was allowed to keep one of his read outs) and then onto the final test an echogram........unfortunately we didnt have a very child friendly Dr and he was more interested in getting all the pictures he required and less concerned about the amount of physical pressure he was apply to Todd's chest.........after 45 mins they finally finished all their test and not a minute too soon as Todd was getting quite upset by how roughly the Dr was pushing his echo probe into his chest and under his ribs. Although Todd was eager to help with the research and is glad he helped by participating he said he doesnt want to do it again :( which is sad really and only down to the last Dr being so heavy handed with him (I personnally think the Dr was getting so excited over the echo pictures that he forgot it was actually a little boy being prodded and probed). We left GOSH at 3.30pm and took the tube to Hamley's toy shop which again like Harrods was heaving with people......however by the time we had looked around it was fast approaching hometime so we took Todd to subway (his favourite fast food place at present) for tea and then made our way back to the coach stop. There was an accident on the M4 an therefore it took us almost 4hrs to get home. We finally arrived home at 9.40pm, it had been an incredibly long day but we are all glad Todd took part in what we think is an important research programme.
Thankfully all of the tests Todd took part in today showed him to be a healthy child with no visible sign of any artery hardening and his heart looked completely healthy too. The blood tests will be done seperately and we will not get those results unless there is a problem with anything.
On the whole Todd is progressing well and we hope he continues to do so.
