# UPDATE #
Be prepared, it's a long one!!!!!
Yesterday was a really really long day, we were left very drained and exhausted. By the time the film crew were finished with us we just needed to close our eyes!
We had a productive day with Dr T, we didn't get all the answers we were looking but we got enough answered to formulate a treatment plan of action.
- Cameron's strep levels are still sky high! Over 1100! They should be 200 or less (they were 1400 when he was diagnosed).
This means he's a chronic strep carrier and despite the plasma exchange treatment at Easter he has come back into contact with strep and taken another relapse. The treatment plan proposal for this is urgent removal of the tonsils. We know this is where the strep hides in Cameron, several swabs of his tonsils have come confirmed this. However, this can be a risky step - removing the tonsils can release a whole raft of stored bacteria into the blood stream and trigger a very nasty downward spiral in the child. It therefore, needs to be strictly managed by strong antibiotics just before and immediately after surgery to try and counter act the risk of a serious flare. Once removed the tonsils are then cultured in the lab to see what's growing on them.
The tests on his immune system show this is badly compromised. The levels of some of his antibody army are some of the lowest the lab have ever come across. Dr T feels Cameron is most likely not making any of these antibodies. The only solution for this is to treat with more IVIG, which will infuse the required antibodies into his immune system. He has recommended at least a year of IVIG treatment after the tonsillectomy.
He will require treatment with super antibiotics, however which ones will depend on what the cultures from his tonsils show.
The results show that Cameron's condition is most definitely strep driven, which is as close to conclusive proof of PANDAS that you can get at the minute.
We will need further testing to get to the bottom of his joint pain, this is as debilitating as his other symptoms, it has worsened over the last few months and yet no one can offer us an explanation for it.
We had hoped to get the PET brain scan for Cameron while we were here, but unfortunately this will not happen. We are keen to get this in the hope it will shed some light on the neurological damage Cameron has suffered as a result of this condition.
The world renowned (in this field) Dr Chungai is unavailable the month of August and then is moving his practice for Detroit to Delaware. Dr T thinks this brain scan would be very beneficial to have, however it's an extremely complicated one to set up, involving radioactive material. It can take months to organise. If Dr Chungai can recommend someone in the UK or Europe then it will save us a trip back to the U.S. for it, however the type of one Cameron needs may require a trip back.
Would he maybe take us ok a quick monsoon .
We now have a plan of action, HOWEVER......... It will rely on our medical team back home taking on board the recommendations of Dr T.
This may be much more difficult than it sounds!!!!
He has also given us a list of further testing he would like done, I will be emailing our GP about these, he has been very on board so far with us, here's hoping he continues to be!
It's important to put this visit into perspective - it gives us a certain amount of answers & clarification, however, this is only a stepping stone. As Dr T said today, we are still quite early in our journey and still have a considerable road to travel.
Today gave us confirmation of PANDAS and ruled out other things.
Dr T did confirm that Cameron was certainly right up there with the worst cases he's ever come across.
Where we go from here will now depend on the response we get from our medical team back home. As we feared, the treatment needed would be cost prohibitive in the U.S. and require
co-operation from the team in the UK. Each month of IVIG, because it would be an intense dose he needs, would cost around $10,000 and be would need that for a year!! That's not even adding up the cost of the surgery to remove the tonsils!
Dr T will be sending a report to our neurologist in Belfast and hopefully she will be able to get approval for the treatment required. To have to obtain this treatment in the U.S. Would put us into a whole different level of fundraising! There are certain doctors that will consider you as a 'charity case' over here, but that would be if we were refused the treatment recommend by Dr T.
We left Dr T's office today with a script for antibiotics, 10 days now to try and reduce the 'off the richter scale' strep levels, 10 days before surgery and 10 days after.
Next step - an email off to our neurologist's secretary tomorrow.
How do we feel?
I think we feel satisfied with the day, we knew we wouldn't get all our questions answered, as he needs to see what some of the results showed before deciding where to go next. We feel happy with the plan put in action at the minute. We are under no illusion we still have a fight ahead to achieve our next goal.
So please do keep us in your thoughts and prayers, we will need them to get to the next step.