Severe Iron deficiency in 3.5 year old

[mrs thomo]

Need to some advice urgently!

3.5 year old son has suffered from severe reflux since birth, since then we discovered he is allergic to dairy, eggs, nuts and others. It is possible the dairy allergy may have caused the reflux, some Dr's think so some dont.
Anyway after 3 scopes under GA and biopsies we have seen that the burns that he had right up to his vocal cords have healed (possible from all the reflux medication helping or maybe the removal or dairy or both).

Anyway biopsy shows gastro inflamation and signs of ceoliacs. Further blood tests (x 2) show Ceoliacs as well. This is not being addressed utill another set of BT's in 5 months. If has not changed nothing will be done. No idea what will happen if has changed.

BIG PROBLEM IS: long term iron defficiency. He is now meant to be on 7ml of ferro liquid a day but he wont take it. I have tried mixing in juice (he does not drink juice), jelly, chockie,coke anything its just tha strong he gags and throws it up. We have tried crushing half a tab of gradumet but he does not eat enough food for me to hid it in sucessfully. Now he wont even take panadol, he thinks I am trying to poison him I am sure.

He is not sleeping well and his diet is getting worse, he just wont eat. Its a miracle he is still growing.

How can I get his iron up if he wont eat or take the medicine?
This is killing me, he wont let me help him and I am loosing my patience!

HELP!!!!!!!!!!!

[kelebek]

have you tried honey or jam? hopefully someone else will have some better ideas.

On a side note DS hates panadol and refuses to take it, he will take nurofen though but make sure you give him a biscuit or something to line his stomach

[Olive]

Have you looked at Spatones liquid iron? It's clear and doesn't have the taste that others have.

[meow]

I have a friend who went through pretty much the same thing with her son. She gave him spatone and organic beef liver. The spatone is almost tasteless but she was lucky her son liked fried liver. Her doctors weren't happy as they wanted the stronger iron supplement but she stuck to it and his iron came up (along with a gluten free diet of course, so that he can absorb nutrients).

As an aside, you can heal his gut to overcome these issues with the GAPS diet. When I put my son on GAPS he wouldn't eat anything either and I force fed him. It was awful but he's so much healthier now. I only had to force feed him for about 2 weeks, then he allowed me to feed him and now he feeds himself.

[mrs thomo]

I have a friend who went through pretty much the same thing with her son. She gave him spatone and organic beef liver

Thanks so much for responding, we feel so alone and helpless. I was only told about the Spatone yesterday and went straight to Chemist Warehouse. The chemist said that he will need about 6 sachets a day to get the dose he needs to, but you know what that has to be better than nothing! I might go back and get it and try it because this is just not working. Even if I get him to eat 3 choc oreos with a tiny bit of the gradumet powder and some of the Spatone, maybe it will help make him at least feel better.

I WISH AND PRAY for my son to eat meat. Since he was born the closest he has come to eating meat is a chicken nugget from Macca's even then thats a challenge. Ig he would just eat some meat and veg we would be ok, well after we get his iron up of course. The iron suppliments are just not enough. He was on Incremin every day and even with that his iron kept dropping. We have his Vitamin D back up, which is good, but I am worried now that its winter that he wont get enough sun.

Thanks again, I am going to try that Supatone, my theory is it has to be better than nothing surely!
Have a Peadi appointment soon to see what suggestions he has. Also waiting to hear back from my sons dietician as she was organising a feeding clinic for him.

I am at my witts end!

[Arcadia]

I think it's important to remember eating equals pain for your son, so it's little wonder he doesn't want to eat. I would really look seriously at the GAPs diet, because it is nourishing without all the possible allergens.

[mrs thomo]

My sons dairy allergy and egg allergy has been reduced as expected we thought he would grow out of it although he does not drink cows milk he still prefers soy. Not much cheese or other unless in baked goods.

JD has had 3 scopes with dr Avi Lemberg in Randwick. He is very good. He is not convinced the dairy had anything to do with reflux although pedi dr freelander said that 3% of persistent reflux is caused by dairy allergies. It was this that he decided to do blood tests which confirmed this as did skin ***** tests. The fact that his reflux seems to have gone and scars indicate the burns and ulcers have healed. The ceoliacs is most likely what is causing him to loose nutrients and not eat. His villys in his gastro tract are very small.

I have no idea what they will do after his next blood test in 5 months, but guessing another scope and biopsy. I just want a plan so I can move forward and help him!

[nickle730]

mrs thomo, I'm confused! If 2 x blood tests and a biopsy show Coeliac, why is this not being addressed for 5 months? And why have you not been advised to give him a gluten free diet? A lot of damage can be done in five months!

[mrs thomo]

I'm not entirely sure I think the numbers or levels must be low. He said if the next test shows same level he will do nothing. If they are higher, well let's just say he said we will cross that bridge when we come to it. He mentioned something called iceberg coeliac, something like it spends most of its time below the surface and will most likely show up more aggressively as an adult. To be honest I think it comes down to the fact that his diet is so limited that if I removed the few things he does eat like bread he will drop even more. At preschool and at home we have tried a gluten free diet and he refused to eat at all! Very distressing to see him do this to himself! He was put on Neocate as a baby and he refused that too! That is probably the beginning of all this drama! Is their any medication for ceoliac or just diet?

[nickle730]

Coeliac is managed by a gluten free diet. At this stage, there is no medication or treatment. The thing is, if your DS is coeliac, continuing to feed him food containing gluten (such as bread and oreo's) is doing more harm than good. It destroys the villi in the gastro intestinal tract (I think you may have already mentioned that his villi were flat on biopsy) and he will not absorb any nutrients from the food he does eat (including iron!). Not only that, there are long term implications such as greatly increased risk of bowel cancer. Although I'm sure it is reassuring to see your DS at least eating something, IF he is coeliac he will feel quite unwell after he eats foods containing gluten. I imagine this creates a vicious circle where your DS doesn't want to eat because it gives him a belly ache and makes him feel sick, so he only eats things he really likes - such as oreo's or dry cereal - which contain gluten, which makes him feel unwell, so he doesn't want to eat anything other than the things he really likes the taste of - such as... you get the idea.

I am in no position to diagnose your son as Coeliac or not, and I assume you are seeing good doctor's with experience in gastroenterology. It is my understanding that a bowel biopsy provides a pretty conclusive diagnosis as to whether a patient suffers Coeliac disease or not and the primary indication is flattened villi - which your son has.

Although you have said that your DS wouldn't eat anything on a GF diet, sometimes we have to be cruel to be kind. By denying your DS oreo's and the like (IF he is Coeliac) you are preventing further damage and allowing his gut to heal. There are many, many GF alternatives to 'regular' foods - including yummy bikkies. In time, your son will find GF foods he enjoys, particularly if he finds he doesn't feel unwell after eating them!

[*Efjay*]

can't long term exposure to gluten also cause fertility issues later in life for coeliacs?

[mrs thomo]

In my heart I feel I need to remove gluten too, but just get so heart broken when he does not eat for days even week. The test was meant to be in 4 months but he felt bad for all these needles. I'm inclined to do it a 4 months as he will also have his 4yr shots in 6 months so need to give him more time between them. Will see what peadi says next week. I'm not giving up on him. I need to feed him and he needs to thrive! I want to see him enjoy eating food, I want to see him just look and be more healthy. Right now he has a high fever which came on fast and tummy pain with vomiting well trying to as has empty tummy. Gp at medical center put him on antibiotics. Feel so bad for him. He has suffered so much already and hate when he picks up bugs from preschool. So far 2 days no sleep! I think we both will collapse soon just from exhaustion.

[MantaRay]

Some people have gluten intolerance, which means they can tolerate some amount of gluten (usually), but only a limited amount which might be very small. Coeliac though is different. It means that no gluten whatsoever can be tolerated and eating it will keep doing damage and will stop nutrients being absorbed. If your DS has coeliac and is still having gluten, giving him iron is not going to make much difference as he won't absorb it. He must stop all gluten now and forever. I find it very strange that doctor wouldn't tell you that - perhaps it's time for a new doctor. And definitely a dietician - this is really important to make sure you cut all the right things out, and still leave a nutritious, balanced diet.

An elimination diet is hard at first, but it gets easier. Once that's done, then you can see what happens to the iron levels and you might find supplementation isn't necessary anymore. It will probably be necessary for a little while until the levels have a chance to get to normal, but then with any luck he'll be fine.

[mrs thomo]

Picked up supatone today. So he needs 8 sachets to get the dose he needs. Well I put 1 in his drink and he only drank 1/4 of it. I could taste it though when I tried it so do t know how successful it will be but will see how he goes. He is recovering from a nasty viral infection at the moment so not drinking too much of anything let alone eating.