My gut feel is it's formula related. Every month we see Jason's dietitians at our local government hospital who help us with Jason's diet and also provide us with government supplied pump sets and formula. Unfortunately government have decided that they no longer provide paediasure and have now decided to go with Replace Junior. We have been on Replace Junior for two months now and I really don't believe it is agreeing with Jason. The dietitians say that the contents are the same as paediasure and the calories are the same BUT I personally don't think so and Jason's other dietitian that normally sees us in private hospital who is a trained pediatric dietitian is not familiar with Replace Junior. When she compared paediasure with replace junior the calories in paediasure are 100kj per 100mls and replace is 75kj per 100mls - so 20% less calories per 100mls. Trying to mix replace is a science in itself. The powder does not mix!! Very lumpy and you have to actually warm the water to "melt" the powder. So I feel it has some sort of oils in it which maybe go straight through Jason? I could be totally wrong but that is my gut feel. We have been blessed that government provide us with 10 tins of formula a month and 30 pump sets a month. This is a huge help financially for us BUT do we just keep him on a formula that doesn't agree with him because it's free? I have postponed our appointment for this week until I can see where we are going with this diarrhea and formula. I am scared to "let go" of this connection because financially we need this help. I guess time will tell. We need to make some sort of plan financially - I really need to fundraise again but fundraising isn't easy especially when you are fundraising for your own child. I've had a lot of suggestions from people but I can't do it on my own. Suggestions are good but I really need the help. I need volunteers to say I am going to help. I could do another Barnyard Fundraiser which are always a lot of fun but again I need the help with ticket sales I need to sell a lot of tickets. The trust has a little over R3,000.00 left and I need to make a withdrawal this week to pay for speech therapy, syringes and formula. SO after this withdrawal there will be one more withdrawal left. The trust fund was helping us pay for Jason's school fees which are R5,000.00, helping with his medication which costs over R3,000.00 per month and helping pay for Jason's feeding and speech therapy. We have had to reduce his feeding therapy as it costs too much and we cannot keep up with the expenses. No couple could earn what we need to pay out monthly. I am scared when our medical savings run out and at R3,000.00 a month for meds it will be finished in 4 months. From there we are on our own again to try and find funds for his medication on top of his school fees and therapy (R1,300.00). We are blessed that we do have a handful of people depositing a monthly pledge into the trust account. Every bit adds up and we are very grateful to all of you that have been helping with a monthly deposit.
I've had one of those weeks this week where I have just had a total sensitivity overload. What happens with me is I am ok for a while but when Jason gets sick it really knocks me and my mind works overtime. I can't ignore the fact that Jason may have mitochondrial disease, that he has chronic kidney disease, that he has combined primary immunodeficiency, that he has cyclic vomiting syndrome, that he has chronic diarrhea. All of these diseases are invisible illnesses. Jason may look good on the outside. He can walk and run and play which we are totally blessed with but these invisible illnesses are all a HUGE risk for Jason. Every sickness has an effect on his kidneys, every sickness is a worry as he doesn't have an immune system to fight. This diarrhea dehydrates him very fast and dehydration has a huge impact on his kidneys. We are already on maximum dose meds for his kidneys (I am actually giving him more than he should) and still the protein in his urine is far too high. We will be seeing Jason's nephrologist in the next two weeks when he gets back from an overseas trip. I am concerned because what is next?? I am sure it's the kidney biopsy that needs to be done - sigh. We still have Jason's urology operation that needs to be done for his hypospadias and severe chordee and I would also like to have Jason tested to see if he actually does have mitochondrial disease. I would like to know but the test is a muscle biopsy where they cut a piece of muscle out of his leg that requires anaesthesia. I know knowing won't change the treatment plan but still I would like to know BUT how can I do that to my baby boy :-(. I just feel so desperate to help him and maybe if we know yes it is mitochondrial the doctors can actually help us with a treatment plan to improve his symptoms to make his life easier. I just feel like we are continuing along slowly and just treating Jason's symptoms as they appear but what if we could actually help him with certain vitamins that will improve his symptoms.? Mitochondrial disease isn't common in South Africa. I was chatting to a mom this week about it - her daughter possibly has it and will be going for the muscle biopsy in May. Overseas there are a lot of children with it and different severities. It's a scary disease that has no cure.
Anyway illness and diagnoses aside, school is going really well for Jason. He is in the right place and has an amazing team of teachers and therapists working with him daily We are learning makaton sign language and Jason is doing really well with communicating using signs. Jason's school has been fantastic with educating us. We have had a makaton sign language evening as well as a demonstration on how occupational therapy helps and what activities we can do at home. We recently had an article in The Ridge magazine about Jason and advertising the school. I will try and get the document in pdf and share it when I do. There are currently 5 special needs kids with different diagnoses . The school works with each child individually at their pace. I have a meeting next week to discuss Jason's OT assessment that was done in December and will receive the report then. One thing the school are battling with is Jason's concentration levels. I have discussed this with the teachers and his paed. I do not want to go with full on medication, he is on enough already. I feel it's understandable he battles to concentrate given he is constantly in pain (burning his feet, a burnt bum, a sore tummy). So I am going to see the homeopath and go the natural route and see if we can also try the omega oils (just worried about the diarrhea again). On my list of next thing to do.
Eating hasn't been great this month. The popcorn, pizza and random acts of eating are not happening I'm afraid but given he is ill it's understandable. I am trying to fit as much feeds in during the day as I can and trying to avoid going back to overnight feeds. We will get there, we will.