Friday, June 10, 2011

The Initial Diagnosis

The start of F's D diagnosis story is here. Failure to Thrive is not what you want to hear about your new baby. As a mum you want your baby to grow and thrive, so to hear that that just isn't happening is a bit crushing. From the 12th October I weighed Felicity each week at the Child Health Clinic. She was so small and her tummy was so big. She seemed to be drinking ‘enough’ but not gaining weight.

Throughout this journey I knew I was right there was something wrong. God gave me confidence to keep pushing the doctors for answers. I now wish I had pushed harder and got answers for my DD sooner but I did what I could.

In November we went to Paed 1 and although she seemed reasonably healthly he agreed she wasn't "thriving". He sent us for a test of her stool. He thought is was most probably a cows’ milk protein allergy as she was put on formula while I was in ICU. The test came back positive for alpha 1 antitrypsin for he said that something was irritating her digestive system. I started her on Neocate LCP formula on 7th November 2009 and excluded dairy and dairy containing products from my diet so I could continue to breast feed as well. She did gain weight a little bit more on this formula but not much. I tried to get to see Paed 1 again before Christmas as I didn’t think she was really responding to it but he didn’t want me to come in again. I decided that we would try annother Paed after Christmas.
In January – I went to Paed 2 as I was still very concerned about her not again weight and having very bloated looking tummy. He referred us to Paedatric Gastroentrologist.

In February - Paed Gastro did Gastroscopy at just over 7 months old. She was so small they couldn’t get the camera through the duodenum so they took pictures and a few samples. Tests came back clear. A friend with diabetes came with me to the hospital that day and actually asked the Paed Gastro if it could be diabetes but he said no. The tests ruled out most digestive problems so we were sent back to the Paed 2 to see what he said.

22nd  February I did a test weigh before and after a feed at the child health clinic just to check she really was getting enough milk. 330g after a 15 minute feed She is definately getting plenty of milk.

By March Felicity was having 5 breastfeeds and 3 formula feeds per day and not really growing consistently. One of the GPs suggested a urine test for diabetes insipida but I was unable to ever get a sample. Nobody actually suggested testing for Diabetes Mellitus.

In March - Went back to Paed 2 - He said she is most probably just a small baby. I insisted on more tests I knew things just weren't right. He gave me a referral for blood tests, and possibly urine and stool samples. He said to introduce gluten containing foods (to check for coeliac disease) and then do the blood test after about 4 weeks. I introduced gluten to her diet and wait about 4 weeks. Then I had cracked nipples and I didn’t want my blood to mess with results.

In the month of waiting I also followed up on Felicity’s urine output which seemed a bit high. I got an email from the child health nurse with details on 19/4/10 I had weighed nappies for a few days prior. Felicity output of 7-10 ml/kg/hr was a bit high. Normal is 2-3ml/kg/hr The Child health nurse said it might be nothing but to mention it at the next doctors appointment. She was very helpful but I don't think she wanted to worry me too much.

I made an appointment with our GP to ask if they thought any other tests were necessary. I just wasn’t confident that Paed 2 would include enough stuff as he didn’t really think tests were necessary.

On 28th April 2010 I finally got to the GP and they rang Paed 2 and asked if separating testing and adding a couple was OK. We got the blood tests done before going home. Blood tests on an alomost 9 month old baby are not easy. F was particularly small for her age as well. I found it pretty distressing. I went home thinking that it would be good to get some answers soon. I was not expecting to hear back too soon though, tests take a couple of days usually.

BUT I got a call that night about 8:30pm from our GP to take Felicity to hospital her BGL was 29. EEK!! I was home alone with 4 sleeping children so I called my DH at work to come home ASAP.
I was surprised it was Diabetes but not that there was something major wrong.

I somehow had the presence of mind to pack a bag for hospital and have a shower before DH got home. I made a couple of calls to our parents. Both sets insisted that they would come and look after they other girls. I thankfully said yes to my mum and DH and I were both able to go the hospital.

F put on more than 1000g in less than 3 weeks after being diagnosed with diabetes. She was no longer starved for food from the inside. Even though it was a huge thing to deal with and lots to learn I was thankful for an answer to our search.


hellyamber said...

oh wow, I knew some of this but seeing the whole process you had to go through is incredible. *huge hugs* you are an awesome Mum to have perserved throughout and I'm so glad Miss F was finally correctly diagnosed. Imagine if you had just taken their word that she was a small baby!!

Mel said...

I know what taking blood from a small baby is like. Naomi had 6 heel pricks in her first couple of weeks of life - 4 at the hospital in the first 24hrs (they did glucose testing because she was not 'full term' -36weeks and 6 days!). They only needed to test for glucose 3 times, but the nurse broke the tube when she took it off to do the test one time, so had to come take the blood again! We did opt into a study while we were at the hospital where she was hooked up to a permanent blood glucose monitor (with cannula into thigh I think it was), so hopefully in future they don't have to do so many heel pricks. Then she had to have 3 bilirubin tests as the midwife was concerned she had jaundice as she looked a bit yellow (which all 3 of my kids looked like when newborn - none have actually been jaundice, although this time they did tell me it's what know as 'breastfeeding jaundice' which is nothing to do with biliruben levels just to do with my milk). For each of these tests they had to extract 2ml of blood - which is a lot to try and squeeze out of the heel of a newborn - it was like getting blood from a stone.

Melissa said...

I still need to finish a post on the final diagnosis of Neonatal Diabetes. The full diagnosis journey took 12 months.

Jules said...

im really glad to read this, and i bet it will be of huge help to somebody else who (unfortunately) finds themselves and their beloved child in the same situation. its been interesting to read over, i knew a few of the facts, but not the process or details. i love the part where you say God gave you that knowing and confidence to persist. we gotta advocate for our sweet babies. xx

Cat said...

You are a great Mum, Mel, for persisting through this long journey.

One thing our medical system lacks is a good link between presenting symptoms, test results, diagnosis and medication.

It's really great that you are able to write all this down so that others might benefit.