Life Update
Apr. 3rd, 2013 07:47 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
emma_in_dreamShort version: everything is going so well!
Long version: The difference in Ruby is phenomenal. She has gone from being a pale, sick girl who only wanted to lie in my arms and who literally was too weak to walk, to being a bold, plump toddler in the space of a month.
All year I have known something was wrong. Even last year, actually. I could see she was increasingly reluctant to walk. I attributed this to her NF1 and I spent a long time getting her new orthotics and boots. The boots were particularly frustrating as they took 10 weeks to arrive. Though, having said that, there was a $300 discount on the $350 boots so there is some upside to being stuck with an inefficient universal health care system. All the while, Ruby was going backwards. Not developing, not even holding her own, but becoming less happy, less mobile and more clingy.
Then she started vomiting, which got worse and worse over the course of the month. By the end of the February she couldn’t walk and would only lie in my arms saying she felt wretched. I took her to the GP twice and the hospital twice. The second time she was down to 9.4 kilos (10.5 kilos being the bottom 3%) and still dropping. By this stage I was convinced it wasn’t a virus – I would have got it if it had been because she threw up on me virtually daily.
I thought it was a tumour so the relief when it wasn’t was enormous. They mentioned the possibility of coeliac disease but sent us off without any treatment plan. I decided to try removing gluten because I was desperate. I could see that within a week she would be in hospital on a drip because she could not go on as she was.
The results were almost instantaneous. She only threw up one more time after I began removing gluten, and her dire rear went after about three weeks. She ate like no child I have ever seen – with a desperation really – because she was making up for not having absorbed food for so long. She ate almost constantly while awake for the first two weeks, and has only begun to slow down now to the point where she can go, say, a half hour without eating. She has stacked weight on – is now heavier than she was at the beginning of February.
Also, she has begun to caper around in her new boots. She has had to relearn how to walk with straight legs instead of crooked ones, and she is doing a great job. She even dances now. We went to the park and she went on the play equipment instead of sitting on my lap and crying! I am so happy.
So far the gluten-free diet has been relatively easy but expensive. Hopefully it will get less so now that Swancon is over and I can concentrate on preparing food myself rather than buying pre-made treats.
Would it be nice if Ruby did not have two separate, fairly significant medical issues? Yes. But coeliac disease seems relatively easy to manage and the difference in her is so clear that the paediatrician decided there was no need for the bowel biopsy (with attendant general anaesthetic at her age). Between the high antibody results in her blood test and the massive improvement in her health on a gluten free diet, the paediatrician agreed to a tentative diagnosis without further testing at this time.
Every time I look at her I am just so incredibly happy to see her so healthy and happy in herself.
(Also Pearl is pleased that Ruby is well enough that there is finally some attention for her as well!)
Long version: The difference in Ruby is phenomenal. She has gone from being a pale, sick girl who only wanted to lie in my arms and who literally was too weak to walk, to being a bold, plump toddler in the space of a month.
All year I have known something was wrong. Even last year, actually. I could see she was increasingly reluctant to walk. I attributed this to her NF1 and I spent a long time getting her new orthotics and boots. The boots were particularly frustrating as they took 10 weeks to arrive. Though, having said that, there was a $300 discount on the $350 boots so there is some upside to being stuck with an inefficient universal health care system. All the while, Ruby was going backwards. Not developing, not even holding her own, but becoming less happy, less mobile and more clingy.
Then she started vomiting, which got worse and worse over the course of the month. By the end of the February she couldn’t walk and would only lie in my arms saying she felt wretched. I took her to the GP twice and the hospital twice. The second time she was down to 9.4 kilos (10.5 kilos being the bottom 3%) and still dropping. By this stage I was convinced it wasn’t a virus – I would have got it if it had been because she threw up on me virtually daily.
I thought it was a tumour so the relief when it wasn’t was enormous. They mentioned the possibility of coeliac disease but sent us off without any treatment plan. I decided to try removing gluten because I was desperate. I could see that within a week she would be in hospital on a drip because she could not go on as she was.
The results were almost instantaneous. She only threw up one more time after I began removing gluten, and her dire rear went after about three weeks. She ate like no child I have ever seen – with a desperation really – because she was making up for not having absorbed food for so long. She ate almost constantly while awake for the first two weeks, and has only begun to slow down now to the point where she can go, say, a half hour without eating. She has stacked weight on – is now heavier than she was at the beginning of February.
Also, she has begun to caper around in her new boots. She has had to relearn how to walk with straight legs instead of crooked ones, and she is doing a great job. She even dances now. We went to the park and she went on the play equipment instead of sitting on my lap and crying! I am so happy.
So far the gluten-free diet has been relatively easy but expensive. Hopefully it will get less so now that Swancon is over and I can concentrate on preparing food myself rather than buying pre-made treats.
Would it be nice if Ruby did not have two separate, fairly significant medical issues? Yes. But coeliac disease seems relatively easy to manage and the difference in her is so clear that the paediatrician decided there was no need for the bowel biopsy (with attendant general anaesthetic at her age). Between the high antibody results in her blood test and the massive improvement in her health on a gluten free diet, the paediatrician agreed to a tentative diagnosis without further testing at this time.
Every time I look at her I am just so incredibly happy to see her so healthy and happy in herself.
(Also Pearl is pleased that Ruby is well enough that there is finally some attention for her as well!)
