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]

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.

I have never heard of this, but will google it now. To be honest any diet would be an improvement. This is a list of what he eats and even then its not that much.
- dry cerial
- soy milk
- dry gluten, egg, nut and dairy free biscuits
- choc oreas
- maybe a sandwich (white bread) he wont eat gluten free bread with choc mud (not free alternative to nutella)
- 2 min noodles
- lollies
Weekends are the worst as he eats barely anything. He goes to pre-school 5 days a week mainly because he will at least eat something there, not a cooked meal like the others, but some noodles or some sanwich.

He does not eat dinner at all!
Will look at this GAP diet and hope the peadi and dietition have some answers!

[meow]

If you join the GAPShelp yahoo group you can find other parents who have gone through the same thing with their children and you might find that really helpful.

His food preferences are completely inline with a candida overgrowth and you can overcome this and heal his gut with GAPS. I agree that his gut is in pain from eating so that will be why he's not eating much. My son has created a strong anxiety around food and is still a very picky eater but he eats well now so I'm hoping that in more time he will be able to feel less anxious about eating more food.

Before my son started GAPS he had been dropping foods off his menu at a rapid rate. He was down to:
- Apples
- Corn thins
- Salt & sugar free peanut butter
- Sometimes strawberries and avocado

[Olive]

Will they do iron injections or infusions then?

[mrs thomo]

Will call the dietition on Monday as ask her about GAPS, it looks great although she is not keen on encouraging children to eat by offering bribes, sometimes its the only thing that works though. P.S. I like the sounds of that diet for me too as I have IBS.

Iron injections looks like a very real option now. Will get some Supatone today and try that and when we see peadi in a couple of weeks I will push for the injection. I know its not nice, but he needs this, he is not sleeping well, very clingy and starting to get sick. I think he is feeling very yucky.

You guys are great, I can not tell you how much I appreciate your comments and advice!

[surprised]

I think I'm just confused, but it would appear some of what he's eating would have dairy in, which you said he's allergic to? Have I got it wrong?

Hugs Hun. You sound like you're having a rough time of it.

[meow]

Also eggs and gluten. I assumed you are still in the process of actually cutting everything out that he can't eat. Just doing that alone will really help his body to be able to absorb the iron.

[Razzberry]

I don't have a any ideas to help you with giving him iron but my daughter (2.5years) is having her first endoscopy next friday as she still suffers from gastro reflux though we can't pinpoint what it is that is triggering it. Now she can talk she complains of "yucky bits" in her throat and "tummy hurts" We are hoping to get some answers about why she is still suffering at this age. When we saw the gastro aped he said he thinks her reflux is because she had a milk protein intolerance as a baby when I was breastfeeding (that is why my 11 week old son has started on neocate formula to try and prevent all of whats happened to my daughter with him). and now he thinks the reflux is allergic esophigitis or "EE". Shewas on zantac (which did nothing) then losec and now nexium - they have only ever taken the edge off the reflux for her. Are you in sydney? what doc do you see? Is iron deficiency common in reflux babies? My daughter has never had her iron tested (or any bloodiest for that matter) and she is a very fussy eater who doesn't really eat any meat.

[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?