Hospital visit

Elliot has been going to school for about 1 month now and he really likes it. Compared to pre school the school days are more intensive and when it is time to go home he often is tired. The school have bought a wagon (the type you have behind a bicycle) that Elliot can use if he gets tired when they are going for longer excursions.

Today we have been at the hospital for a routine check. The 6-minutes walking test was okey and Elliot did walk 411 metres but he was tired afterwards. The examination by the doctor did not show any changes compared to the recent visits. It was decided that the Revatio dose should be increased.

I told the doctor and the PH-nurse about my involvment in the Swedish patient association and did handover information material. I also mentioned the result presented of Novartis about the cancer drug Imatinib at ERS in Amsterdam 26th of September. The drug have proven positive on PH patients regarding the 6 minutes walking test.

School start

All summer Elliot has been talking about the school start. "I'm very excited about it, but I think it is also a bit scarry", he has been saying. Now he has been at school for two weeks and made new friends and he is very positive about the school in general. Unfortunately he fell from a jungle gym (klätterställning) in the playground at school last week and got a fracture in his collar bone. He is in pain but he adopted the new situation quit well and now he uses his left arm insteed.

Together with the school staff we have been discussing how they can support Elliot when they are going on excursions and they proposed that the school could buy a cart where he can sit when his legs get tired. 

The first week Marie and Elliot told about Elliots disease for the other children in his group (about 50) and that Elliot probably will have special treatment when they go on excursions and that me must stop playing to catch his breath more often than other children. 

My big day

Together with 35 other families with children with life-threatening diseases we were invited to a motor racing event arranged by the foundation Min stora dag (My big day). Sunday the 21st of August was the day for the event and Elliot had been longing for this day all summer and I must say it was an amazing arrangement. About 60 racing cars, police cars and fire trucks came to the drag racing arena in Tierp.

The cars did race in pairs and in every racing car a child was in the passenger seat. Elliot tried Lambogini, Ferrari, Porsche, BMW, Mini and Morgan. There was also a racing show and different competitions. This is a day that Elliot will remember for the rest of his life.

Public performance

March 16th I am invited to speak about beeing a parent to a child with PAH on a event arranged by the Swedish PAH association. I'm looking forward to the event and the possibility to meet new connections who are engaged in the disease.

You will find more information about the event at: www.pah-sverige.se (in Swedish)

Notch-3

Scientist in the US have discovered that PAH is characterized by overexpression of the protein Notch-3. The discovery, presented 25th of October, is described as ground breaking for future medicins for PAH. It will be interesting to see how long it will take from discovery to a medicine. 5 years, 10 years?

http://health.ucsd.edu/news/2009/10-26-pulmonary-arterial-hypertension.htm

Condition test

Last week Elliot did the condition test again and his condition has not been worse since he did the test in May. Hopefully Elliot will get the flu vaccine this month. So far the weather has been fine in Stockholm, which means the children at kinder garden have been outside most of the time and Elliot has been free from diseases.

The chart shows the result after Elliots condition test from the start in December 2008 until the last one in October 2009. The condition test is simple, he walks for 6 minutes in normal pace. The vertical axis shows Meters/Sat before and after/Pulse before/after and the Horizonalt axis shows when he did the test.

Back to reality

For 2,5 months we have been living in a happy bubble. Our bubble is a cottage on the Swedish west coast. There, life is simple, you wake up, eat breakfast, plan the day, which means either go to the lake for a bath or out in the forest to pick berries or mushrooms. This summer Elliot has developed incredibly. His new outside favorite is to climb; he climbs trees, stones and anything that comes in his way.
Since 2 weeks we are back in Stockholm and the ordinary life and today it was time to go for a routine check at the hospital. The nurse who usually takes care of the walking test was ill and it had to be cancelled. The heart and lung check with ultra sound gave (as usually) no hints of Elliot’s condition regarding the lung pressure, but the doctor’s short summary of the ultra sound was ok: nothing had become worse during summer.
There is a big playing room whith lot of toys and games at the hospital. The image shows Elliot and Marie playing table hockey which is a popular game in Sweden (we usually stay a while at the hospital to play after his doctor visit, this strategy has been good, now Elliot feels it is ok to go to the hospital and he looks forward to go to the playing room).
Right now I’m a bit worried about the new flu. I’m not alone in my worries, media have gone mad and it is happy days for a few medical companies. I'm worried about his lungs. I would like to go back to the cottage for another month. Our doctor hopes that Elliot can have his first vaccine injection in late September or early October. So it is at least 3 long weeks…
It’s only 5 weeks left to our third baby if everything goes according to the plan. Marie is now very pregnant;) Both me and Marie believes it is a boy.

A day at the hospital

Today we took both Elliot and Olle to the hospital. First Elliot did the condition test and this time it was positive, his sat before the test was 96 and the pulse 86 and after a 6 minutes’ walk the sat still was 96 and the pulse not higher than 90. This was the third time he did this test and this time he walked 328 meters compared to 250 meters the other times. The heart and lung check with ultra sound did not say anything new; the doctor only mentioned that the right heart chamber not had changed which is positive. The doctor also looked at Olle with ultra sound, this just to make sure that he not has the same symptoms as Elliot. Olle was okay so this was probably the last time Olle had to do this test.

Right know I’m tired but happy, these days at the hospital takes all my energy. Hopefully we don’t have to return to the hospital before August/September. In mid June we will go to our cottage in the Swedish west coast and we will stay there for more than 2 month. It will be luxury to be all together for such a long time.

We are not alone

Right now a lot happen, I heard from another parent that there is a big international study going about children and PH. I think there is a new medicine that is being tested. I wrote a mail to a professor in Sweden who is a specialist in PH and who is involved in this study. In the letter I described Elliot’s history with PH and I got a quick answer. The professor’s opinion was that we have the best treatment there is to have.

The day before yesterday I made my first entry to the Nordic message board for PH. I have already made contacts via this forum and it feels great to know that you are not alone in this mess. I have also found the message board that PH Association has and it was a positive discovery to find that they have a forum for parents with children that have PH. You will find the links to these two boards in my link list.

Yesterday I paid a visit to my ear doctor and this was not a positive meeting. I now have Ménière’s disease (tinnitus, loss of hearing, dizziness) on both my ears. I got diagnosed for Ménière on my left ear in 1996 and now it’s on both my ears. My belief is that it is Elliot’s disease has to do with this negative progress, I worry a lot and this affects my hearing.

Springtime in Stockholm

It's springtime in Stockholm and all over its green. It's really beautiful know. Since our last visit with Elliot to the hospital in February we have had a really good time. Both I and Marie have been home full time with our baby boy Olle and Elliot have been okay. When Elliot is playing and running he has to do frequent stops because his "legs are tired" as he explains it. But beside of these symptoms and that he has to take medicines three times a day we don't notice his disease. But still we worry a lot...

Our next visit to the hospital will be in late May and the routine is that he first do a condition test. He walks for 6 minutes and before and after the walk a nurse checks his pulse and saturation. Then the doctor checks his heart and lungs with ultrasound. But without catheterization it's difficult to say something about the lung pressure. The latest cat was made in December 2008 and the outcome was negative, Elliot has not responded to the medicines, but we still hope for a positive change.

During this spring I have got in contact with some other parents who have children with PAH in Sweden. But since the disease is very rare my hope with this blogg is to get in contact with parents outside Sweden.