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Hi everyone, I´m Sam and my little girl Ana is a slow gainer/ftt baby.
She had been measuring big the whole pg and at my 36 week check up they said she was nearing 8.5lbs. Then she stopped growing and I was induced at 39 weeks, she weighed just 6lb 3 oz. She never lost weight and at 10 days was 7lb. Then our problems began, she had breastmilk jaundice and I had to alternate boob and bottle, she was horrendously sick with the formula and stopped gaining. Once I stopped the formula she started to gain again, but very slowly. At 5 months she was 13lbs , at 8 months 14lbs, 10 months 15lbs and at her one year check she was 16lbs (yesterday). At about 6 months she was diagnosed with an enzyme deficiency which causes problems with fat digestion.
It doesnt help that shes 30" tall so she looks so thin. She is still a reluctant eater and I try not to worry about it too much. Luckily our Dr at the hospital is very nice and always reassuring me that I am doing all I can.
Apart from her weightgain issues, she is a perfectly normal happy little girl.
Which enzyme is she deficient in? Danny has Isolated Chymotrypsin Defficiency. It took 2 years of testing to find it though!!! Glad you found it pretty early! Is she on enzyme supplements? If she isn't she should be and on those she will do much better! I know Danny has. He has gained 5 pounds since Oct! Welcome and I think we will have a lot in common with our specific struggle. BTW...this is not 100% but in most cases children with pancreatic enzyme defficiencies also have "food allergies." Danny has several but we are finding out they may actually be intolerances due to him not being able to break down the protien adequately and therefore his body recognizing it as poison. I hope that helps in some way!!!! And again, I am VERY excited that you have come to this board. It is so stressful with the enzyme defficiencies and I am thrilled that you will understand!
I´m glad there are more of us out there!! However reading your posts it seems that your deficiency is a lot rarer and difficult to diagnose than ours. They seemed not to make a big deal of it here, so I checked on google and she has the most seen form, its actually quite common.She has a lipase enzyme deficiency which prevents her from fully digesting and absorbing fat. She has enzyme supplements with her cereal and seems to be doing well. They havent mentioned allergies, but she had a whole batch of allergy tests when we first started weaning her as they thought that could be the cause of the problem.
We are in Spain (I am english) so hospital visits are nerveracking, firstly as everything is so different, then they all speak spanish (common in Spain!!) and I hate seeing my little girl just sitting there as if shes used to being pushed and prodded and pricked.. Still, I hope she starts gaining (or continues at her 1lb per 2 months) gain.