My 1.5yr son suffering with aligile syndrome really goin tough.

[venu1681]

Hi my son is now 1.5 mths suffering from alligile since last 1.2mths, , though initially it took time to ascertain the disease now dr n we r very much clear, time is passing on n though his age growing he seems to me not putting on weight at all, his eyes are going deep inside almost daily, itching getting bad to worse, been discussing with dr seems this wud b going on like this, , other day I asked dr whtht lft needs to be done bymonthly as we being doing this frm last year, she says this will continue , more we talk with dr on issues more the intake of medicines gets increases..as currently he is onudiliv cap, chlorton sachets for liver, for itching gardenal is goin on still itching doesnt stops..2days bac again we met dr along with repeatative by monthly lft reports, she says thr seems to be prob due to increase in cholesterol advised us to get ct scan heart contrast test dome n see the kid to dietican..this is not getting stopped feeling depressed every time I go n do lft pricking my son veins fora blood test than again the dr words, can sm1 tell me how do u take this on, how long does tis continue, does after some age itching completely stops, how does this kid go to school, do all aligile takes the same mesocine on daily basis n move on, really upset I n my wife not been sleeping in nghts almost frm a yr now..as my son sleeps is really disturbed, I think about his sleepless nght n get myself energised to make him sleep, does any one facing the same problem stays in india mumbai really like to meet or see you.

[Paynie68]

Hi

Sorry I'm in the UK so can't meet up but I have already been through everything you are experiencing. My daughter is now 7 years old. She is rather petite for her age - a bit shorter than her peers and underweight. You just need to try and get as much high energy food into your child as you can - small regular snacks and use lots of diary products and carbs. We have Peadiasure Milk here which is a high calorie milk drink and my daughter drinks 2 x 200mls of these per day. The regular hospital visits and blood tests are essential to see how well your child is keeping - ask to know what the test results are and if you don't understand them ask the Doctor to explain what they mean. We had to try several different medications before we found a combination that reduced the itching but there is no cure for Allagilles and unless your child has a liver transplant they will always have the condition. The sleepless nights are difficult to deal with but keep your child as cool as possible, cotton clothing and lots of moisturiser to keep skin in good condition. I have spent many hours gently scratching my daughter to help her go to sleep. I was told that as they get older the itching can get better and they sleep better. In our case this has proved to be true and we both get much better nights sleep now. Let your child rest or sleep as often as possible as they will be very tired and irritable and may find school difficult as concentration is hard.

Hope this helps a bit. You are not alone and there are other parents and kids out there dealing with the same thing.

All the best.

[venu1681]

Hi really thax for the reply, sometimes u knw its difficult to see our child at this place for no reason, emotions do come out, ur applyng some combination of mix to reduce itching, cud u pls suggest, fyi today I been for ct scan heart contrast a very difficult day awaiting for the report finger crossed, how is ur child doin, whthr her talking and understanding is normal, even her eyes are deep inside , actually wanted to meet such similar child & parents to understand how do thy go on..u know this is the only site whrin am able to atleast get some information..in india it seems to me a very rare disease.

[Trayee]

Hi Venu, this is hari from Chennai and we also under went same problem with my son but it was pfic 1.my son is now 3 yes old & v did liver transplant,the only solution for alagile & pfic.come to global hospital & meet dr.naresh and chats.there is a minor surgery to stop the itching and 70% successful.act fast as the sooner U treat him the lesser will be the complication.dont worry everything will be alright ur sin will be having a bright future