dispair

[Dies]

Hello all of you,

It has been a while since I have posted on here about the progress of my 2,5 year old sun.
But I would like to catch up.

As I am still struggeling so much with his diet and have absolutely no support of any docters, I am reaching out for some support of you.

The struggle in the diet comes basiclly because I keep on trying alternatives in his diet that lead to dissapointment and most of all bad conditions of my little one.
December is a horrible month if I look at all the things my boy has ot miss out on. My mistake early december, because of the duth festive Sainta Clause was that I tried Carobe as an alternative for chocolate. It also contained butter and vanilla and turned out really bad for him. I then baked him an alternative for Peppernuts, that childeren eat here for this festivity and only added cinnamon to ingredients he does tolerate and this was also a no go. In the end I put a peace of saussage in his shoe (you hang your socks for xmas, we put our shoe in front of the cihmney) and he was so dissapointed. Then I tried something with ordinary pastery, but this also give him reflux.
And last week i tried a little lactose free milk......
The overall result is he has a very bad reflux, vomits, doesnt eat, only wants to drink his bottle with Neocate.
Back at square 1. And why? Because I can not resist to try and feed him more then Neocate, rice crackers, peanut butter, pasta, crisps and rice.
He refuses all vegetables (also the low frucotse ones) eats only sausage spread but no meat. Only the yellow of the egg, not the white. And that is it!
How can he grow up healthy like this??

The last my doctor offered was to take him in to hospital for 2 weeks to test everything all over again with all food. But without me present! I will not leave my sun alone in the hospital at night.
But now I have no support from doctors, becasue they have not been able to find anything??
I am also considering to go to the UK to see a doctor UKbill suggested.

Sorry........dispair.

[charlie]

Hi, I am so sorry to hear you are struggling with your little one. but trust me this diet is possible, you just have to think differently about food.

Please don't keep experimenting for now. He is only two and a half so perfect age to limit his diet, just don't suggest foods that are not safe he isn't going to challenge you on it just pick up on your disappointment.

One problem you are having I would guess is that his system is inflamed if you keep trying things that don't suit so please try to stick to safe foods. Actually Christmas dinner is the perfect HFI food, just don't use all the trimmings. If you look on the malabsorption page I have printed various recipes for Christmas dinner.

Remind us of your history with your son and we will all help you with this, you just have to re-invent Christmas foods. You can make lots of fun shaped things with pastry, potato cake recipes etc. I'll try and give you some ideas.

Meg cracked me up at Christmas when she was four, she didn't know what mince pies were having never had any and was very insistent that Santa Claus had Shepherds Pie, so that is what we made him, he was very grateful and ate it all up.......................

But please stay positive and get the basic diet right first, if you cut out the reactions you may find he will eat more, at the moment it sounds like he is picking what suits him most so use that as a base and build on it from there.

[Dies]

Hi charlie
Thank you.

My son has been having problems since birth. Reacts to fructose, sucrose and lactose with very bad reflux and vomitting and belly ache.
I have seen 4 hospitals for reflux testing, allergy tests, lactose breath test, hfi dna test, fructose loading test with no outcome. I posted the results and the proceduremof the tests on the board last year for your reactions because the fructose (2grams) was given to him in his bottle of Neocate wich contains glucose and he had something to eat during the test. All wich impacted the results of the test, thats still showed a drop in his bloodsugar. The docter admitted the test was not performed ideally but did not see any reason to perform other tests. Back in my usual childerens hospital it is clear they have quit the research on him and only want to bring him in on 2 week program to check,psycological and mental,health but without me. It fels like the system has turned against me. Because Dies never had hypoglycemia and all the results are negative. I think he is self medicating because he wants to drink his glucose,Neocate when he feels bad and therefor never crashes. Unformiliarness with the diet and the intollerance or HFI or FBPase in Holland is not helping us. I feel very alone.
Dies is still doing bad. Yesterday he vomitted all day and last night he got a fever his heartbeat is high and he was short of breath together with verry bad reflux made me very worried. I,rang the hospital this morning right away. Got no reply untill noon and went to my GP instead because his heart, high fever and breathing alarmed me. The docter found 2 infected ears and thinks this could be the cause of some of it. I visitnthe GP again tomorrow. My docter rings me on Friday but if he is no better tomorrow i,ll drive to hospital myself. I just feel my docter is not that inteested.
As for his diet yes you are right trying to many things like cinammon, pastery, lactose free milk and he supports non.
I made some home maid chickensoup for him today but he ate nothing.

[charlie]

Hi Dies, I am sorry he is still poorly. Yes I remember your story now............. and Bill jumping up and down..............

This is really hard when there are several sugar problems going on. which is triggering which. Unfortunately alot of the doctors all over the world don't have much experience about these things so end up guessing and when they don't tick the right boxes it is very easy to get left to get on with it. Which is where you need to take control.

Megs, my daughter gets alot of ear ache / infections and upper respiratory infections, in fact she has had two more days off school with bad earache. They do seem to go down with every bug going but this does get better as they get older.

You do need to work with your doctors but also try to find one who has experience in metabolic medicine, I don't know what that is in Dutch? Bill, do you know? alot of these problems are metabolic and the blood chemical balance goes wrong every time they eat the wrong thing. This is why, especially when they are as little as your chap you must limit the diet. As they get older their bodies can cope with a higher inbalance.

You must, must, must change his diet, forget experimenting, forget sweet treats and go mainly for proteins.

Watch the neocate, the one I googled has corn syrup as the first ingredient, this could be overloading the sugars immediately. As he is two and a half try to source a lactose free milk. but avoid rice ones and soya ones as they will have added sugars or higher in fructose as made from brown rice. We have a make called Arla here that does Lacto-free milk.

How did you make your chicken soup, just incase you added the wrong things.

Does he like sausages, if you can find plain pork ones with nothing added then cook a load of these and slice them up for him to nibble on, also chicken and turkey and slice them up.

you don't want to use too much potato due to the possible fructose in the recipe section but I put a recipe for potato shapes that kids like. These are great for finger food.

If you want PM me his diet including every ingredient over the next few days.

Just think differently about food and you will get answers. Stick to basic, he won't mind the same food all the time if it suits him at his age, as his system will heal itself quickly and he will start to feel better. But think savoury and plain not sweet and colourful. Cut out all fruit, all veg, all spices all sugars and start again. I am sure you will soon see an improvement.

Children will not naturally starve themselves, if the food is right they will use their instincts and eat what is best for them, you just need to make sure it is easily available.

I will have a bit more of a think for you, but please, please, please get him off all unsafe foods and forget all about them for at least the next few years. There are more recipes that will be safe on the malabsorption website too. Don't be afraid to ask questions please.

Good luck, stay positive and I hope you can translate this ok.

All the best,

Charlie

[Dies danielle]

Hi,

Yes he gets the Neocate infant and this does contain corn syrup.......
When he is ill, like now he will completly fall back on only this.
It is what I think has made him grow like he did.

I just got of the phone with the gastro specialist......she will finally refer me to a metabolic doctor....after i had expressed my frustrations to the GP, who passed them on. Good news. I will start collecting info to have a good discussion with the metabolic docter....the push from my docter is good, but I know the hospitL is sceptic. If nothing comes out of this meeting the gastr specialist the still likes to take him in to hospital to see what his reactions are on a normal diet....withou my interferance?! Not sure if I will say yes to that. I will defo not leave him alone during the night.

Dies his fever dropped but he still has a very bad relux and does not want to eat. The docter put him on antibiotics for his infected ears.

The chickensoup was only boiled biological chicken with a salt and safe herbs added. No luck....he is not eating it.

I tried lactose free milk 2 weeks a go and I think this started the reaction. After having a few zips he went for his napp and woke up trembling and ill. Restless ever since. This lactose problem is one of the reasons I think more towards FBPase def.

He eats safe white bread, sugar free peanutt butter, rice crackers, non sweetned wheat cookies, safe suasage, sausage spread, mais crackers, eggs (preferrs the yellow) pasta, rice, crisps, potatoes, loves soy sauce (kikoman), safe pesto, minced meat, non flavoured and safe soy yoghurt. I did just quit the rice milk......
And i make him ice creams sometimes with water and a little corn syrup.

[angelad]

I only have a minute here, but thought I'd throw something in...you can do a search for my old posts and see our very long involved story.

If you see the metabolic doctor, you might ask about Glycogen Storage Disease....this is something new my children are being checked for as well as a some other mitochondrial and genetic disorders. Depsite what they say, it is possible to have a "mild" Glycogen Storage Disease. Dr. Weinstein at the University of Florida is the leading doctor in this area. He thinks my chidren may be compound heterozygotes for a GSD. FBPase is also still a big possibility.

Maybe you can convince the doctors to do a fasting study with you in the hospital. They basically don't feed your child anything for a 24 - 36 hours and watch blood sugars, ketones, and various metabolic markers. It can be very informative and give some ideas to what is going on.

I haven't posted in a while because life has been tough....another ER low blood sugar visit, illnesses, metabolic specialist, and now we are scheduled for an inpatient upper and lower GI scope on Jan 3rd and 4th.

We are also a mystery to the doctors and my children react to as many foods as yours....our current diet is mostly meat in small amounts, white rice, and corn starch...and they have to eat every 2-3 hours.

Gotta run, but will post more as time allows and results come back.

Angela

[Dies Danielle]

Thank you for that Angela! I would love to hear more from you and I will need to learn about CSD. What would be the connection to CSD?

charlie, I dubble checked the Neocate. He gets the neocate LCP now and that has dried glucose syrup as main ingredient.
Please google Neocate LCP for the other ingredients.

[charlie]

Hi Dies,

OK looked up the neocate LCP, and I'm going to do a Bill on you. I would worry about something that has dried glucose syrup as a main ingredient as you don't know how pure it is and that is a very high amount at a time if he has any sort of sugar metabolic problem and it may be causing all sorts of yo-yo effects on his sugar balance in his body. personally I would try to wean him off it now, he is old enough and if he is eating meats well try not to give him it if he demands the neocate but stick to really safe foods. Make sure he has access to fresh water to avoid dehydration, and just keep topping him up with food little and often.

Avoid peanut butter, contrary to alot of opinions it does contain fructose and quite high amounts. Also double check what is in sausage spread incase ingredients in there sneaking in, at his age you need to avoid even the littlest amount of something wrong. As I said, please feel free to email me a list of his foods, there may be something slipping through that will make sense to me from my experience with Meg.

Re testing: This is a very difficult condition to diagnose in children as they cannot tell us how exactly they are feeling, and often because feeling sick and bloated is the normal for them they don't realise things could be any different as they feel like that all the time. So they rely on the parents information and there is another problem, because they don't usually have life threatening reactions immediately after the food it becomes hard to work out what caused what and so they do start wondering if the parent is making a fuss about nothing, in fact you start questioning yourself as a parent after a while. BUT BUT BUT you aren't going mad, this is happening and you need to believe in your own observations about this. HOWEVER you do also need to work closely with the medics or they start putting barriers up. I have mentioned this several times before but I do wonder if these kids, for an accurate diagnosis, do need to be reactive for the tests to work.

Nowadays the genetic test seems to be widely available so if there is any question about it being HFI this surely should be done first as it is the safest. There are then all sorts of hydrogen breath tests they do on kids old enough to puff into a bag but I do query how accurate they are. A full blood work up when challenged with the sugar would be more accurate if there is any chance it is a metabolic problem.

Alot of these kids seem to be presenting with a multiple sugar malabsorption problems and that may be what your little chap has. Meg was tested for glycogen storage and Glut1 deficiency and both were negative as it seems to have been for alot of these kids. So we are now looking at sucrose intolerance / disaccharide deficiencies which involves sucrose and starches and sometimes lactose too. But to progress any further I have had to go against all my instincts as a mother and put her back on a "normal" diet, albeit very cautiously and keep a diary. Slowly I see all the old problems returning so maybe this time round we will get there. So maybe if that is what the hospital is proposing then it may give you clearer answers, but they must let you be there but you must work closely with them.

Keep us posted, I hope the poor little chap is over whatever set him off this time, it sounds like a viral reaction and here is the other problem, what is a food reaction and what is something that is doing the rounds anyway. I think these kids are more prone to react badly to viruses and more susceptible to them.

All the best

Charlie

[charlie]

Just had a look on the list of hospitals that do gene testing ( not sure how in date it is) but there is one in Amsterdam

University of Amsterdam Academic Medical Center
Laboratory Genetic Metabolic Diseases
Amsterdam, Netherlands
Ronald JA Wanders, PhD

Here is the link to the page

www.ncbi.nlm.nih.gov/sites/GeneTests/lab/clinical_disease_id/2832

[ukbill]

Thanks Charlie.. could not put it better myself

[hfimomof3]

Hi Dies,

Can you link to your previous thread where you described all the testing your child has had?

I am not at all convinced that HFI or FM is the answer here. I think you need a more broad-based support group than this one. I would suggest www.kidswithfoodallergies.com. Your child may or may not have food allergies (I couldn't tell from your description of his testing in this thread), but at the site I mentioned above, there are moms whose kids have symptoms similar to what you describe, with a variety of diagnoses explaining them.

My approach to this would be (if you have not already done this) to start a food diary/medical diary. When you do this, you want to be as precise as possible. Instead of writing "reacted badly to apples" you would write just your observations: "4 pm: Ate half an apple. 5 pm: Appeared pale. Diarrhea. 6pm: cried two hours 6 to 8 pm. Wet diaper, no diarrhea. Bedtime: 8 pm, woke up crying 1 am, 3 am, 4 am, 5 am."

When you have a child who has only a small repertoire of safe food, your holidays have to be centered on something other than food. You can make up new traditions just for your family that are not food-based. Focus on his other senses: use lots of glitter, soft furry things, crinkly things, and build your traditions around those. You can also put emotional things into your traditions, eg singing special songs together, having an album of past Christmases and looking through it with him each Christmas, etc.

Is he gaining weight or losing weight at this time?