I feel that we should make other parents aware of our situation with our daughter. Several months ago, we had had a shift in our personal lives. October 23 2016 to be exact. Our beautiful daughter woke up the morning of the 23rd and her face was swollen. I took her into the doctor thinking it was an allergic reaction but by the time we got there the swelling had lessened considerably.
It is the first thing everyone thinks.
The doctor looked at her and sent us home saying if she swelled up again in the next few days, to bring her back immediately. Tuesday she was ok so I thought we were in the clear.
Wednesday she woke up swollen again. I took her straight back to the doc and on the car ride over, I realised a very important fact. She had gained weight in all parts of her little body that I had put off to treats I was giving her to help her potty train. In fact I was planning to give her carrots instead of chocolates.
The moment I mentioned the other swelling to the doctor, he went into action and got us into the Children's Hospital immediately. I drove straight from his office to emerg. If I hadn't recognised that her abdomen and legs were also swelling, we would have been in deep trouble and the damage would have been much worse.
I still had no idea what could possibly be happening. No one was talking to me. I guess they didn't want to alarm me until they were sure.Test after test was performed and they listened to her lungs over and over- different doctors parading through the room.
Finally at about 3 pm when I was on the verge of frickin begging to be let in on the secret, they told me that her kidneys were not functioning properly and that she was retaining a dangerous level of water. Her body was holding onto water and leaking protein.
I'll never know how long she was peeing protein instead of water but they calmly informed me that the water had not yet spread to her lungs. I felt like I was punched in the gut. I guess that is why they wanted to be absolutely sure before telling me.
Once I regained my composure, the kidney specialist came in to talk to me. Kate has minimal change disease. It is the most common form of nephrotic syndrome and it's tied to the immune system. When her body has to fight an infection of any sort, there is a reaction in her kidneys that puts them on her immune systems' radar and her immune system attacks without mercy.
The answer is prednisone as it helps reduce the movement of protein from the blood to the urine. The first time, after 6 weeks of a full dose every day, it takes 6 weeks to wean the child off of it. After the 12 weeks, the disease goes into remission until the next time the immune system is needed. At that time the child could relapse. Most kids only have the relapses every couple of years or so, or never again after the first time.
It has been determined that Kate will have numerous relapses cause she relapsed 3 times before the end of April. Due to the side effects being too harsh, -ulcers, weight gain, cataracts, and leaching the calcium from bones- the prednisolone is not a long term answer.
Because she's continued to have problems with leaking protein, she had to go through a biopsy to confirm that what we were dealing with was in fact only minimal change because it can be a symptom of a worse problem. The biopsy results confirm that it is indeed minimal change.
The long term answer is Tacrolimus, an anti-rejection medicine that someone with a major organ transplant would be on. It's extremely expensive and covered by the government for now but if the program was ever taken away, I don't know what we'd do so I decided to meet it head on and import some products and name them after Kate.
So introducing Kate's 'Lil Rockers:
We will be giving 10% of the proceeds to the kidney foundation to help fund the studys that she may be actually also participating in. Puberty is her best chance to outgrow the syndrome.
This could happen to anyone's child. There was no pre-existing condition between myself and my husband. If you should happen to see swelling in your child's face, please think about whether or not he or she has recently gained weight, has been cranky, has had less wet diapers or is going to the potty less and the pee has a weird smell, is tired, and is not eating a whole lot. After she got sick, in conversations with her caregivers, I found that kidney problems are very common and even some of the people in our small circle had similar experiences as children.
Pls share this so other parents can be aware!