Hello..Newbie

[Kimber]

Hi everyone

Not sure if I'm in the right place as this is all new to me
My name is Kim and I am a SAHM from New jersey
I have 2 children...zachary turned 3 this past halloween and Ava is 22 mnths

Zach has been my medical mystery since he was born
He was put on reflux meds at 2 weeks for refusing to eat (b/f)
At 6 mnths we took a big turn for the worse as we started table foods...
The Dr never really took us seriously because he was growing and though small maintaining his weight (though that was my FT job...all day)
He was on a dairy/soy free diet...I kept a food journal and based on DH's stomach issues, decided to also remove gluten from his diet
He improved, but still had episodes of Dr jekyl/Mr Hyde personality....where he was clearly in pain
He then had an HORRIFIC reaction to grapes and corn (kicking/screaming before his b/m...hyper and aggressive) and I decided to try and get to the bottom of this
He would also have episodes of extreme exhaustion (though he slept well) pale skin, very red rimmed, dark eyes etc
He also displayed sign of what we thought were seasonal allergies...saying his mouth felt 'hard'...his mouth hurt
I thought most of his problems were reflux related but no combo of meds seemed to help
I became friendly with a mom on a reflux site who had a son about the same age with much more serious GI issues but also very very similar reactions to foods
Her ds was tested and recently diagnosed with fructose malabsorption

I recently made some minor changes to my son's diet and have seen a HUGE improvement and he has been off prevacid for 2 mnths
At this point, I feel his diet is extremely limited and I'm not sure what to do....
Is it common for people with fructose issues to also react to dairy/spy/eggs
I don't know if I should touch base with his ped or a nutritionist...I am also not sure what the difference is between fructose malabsorption and intolerance
Zach does seem to do well with SMALL amount of fruit as long as I pair it with chicken/protein etc
He is no longer allowed fruit leathers, dried fruit or fruit juice (only getting 3 ounces anyway)

can anyone provide any feedback/guidance for a confused and overwhelmed newbie
Thanks so much
Kim
zach and Ava's mom

[Benjamins mom]

Hi Kim. You did a good thing by coming across this great site. I'm sure it will be very helpful for you with recipes and support. I think many here on this site have felt overwhelmed and confused as you are now.

My son just turned 4 and has never tolerated much fructose. I highly recommend you inform your pediatrician about what you notice with foods. Perhaps you could be referred to a GI doctor or a metabolic doctor who may have more experience with problems in digesting fructose. Mention the exhaustion you see, perhaps that is a sign of low blood sugar/hypoglycemia and well, you would want to be aware if that is happening and those findings could help with a diagnosis. It may also make you aware of foods you think he tolerates, but maybe he really doesn't.

We are still in the diagnosis stage with my son...I have a Rx to take my son to the lab/ER when he is 'sick' from the food. We have actually been there 3 times but haven't been able to pinpoint the problem outside of hypoglycemia. Our doctors have explained mal-absorption as a severe tummy ache with diarrhea ...but no internal damage will be done from ingestion. An intolerance is more severe as liver/kidney damage can result from ingestion and symptoms can be vomiting and hypoglycemia, as well as the stomach pain. There are a few limited things my son does tolerate in small amounts once a week (a small strawberry, 1/2 baby carrot, a bite of a banana) but I avoid them until we get a specific diagnosis so I do not cause internal damage in case his problems are an intolerance. Maybe I am over-reacting and perhaps others with a specific diagnosis of an intolerance can tell you if they eat those limited items or not. The diet is hard at times, esp as you are learning. Accidental overdoses still occur with us every couple months--the most recent reaction was with cauliflower, I thought it would be okay, if limited. I was wrong. It happens. My son has major behavior changes also, which I have found to be more difficult to manage than low blood sugar, because I can fix that within a few hours but we have to ride the crazy behavior wave for 5-7 days.

My advice would be to inform your doctor and spend some time reading through the recipes/ grocery lists on this site to find ones that use ingredients you know your son tolerates. There are also links to sites that list the amount of sugar/fructose in foods. Those have helped me a lot also. I am sure you will be excited to find new foods to buy or make. I live in NJ also...I'm in Monmouth county. Feel free to email me at [e-mail] anytime.

I wish you the best of luck with all this. It is overwhelming at first, but I will have to say now that I know what to buy, where to buy it, how to make it, life IS easier. It will get easier for you too. Hang in there. I think you will find that everyone on this site will be here to support you, which helps enormously also!!!

take care,
carrie

[Benjamins mom]

one more thing ....my son also had a milk allergy until he was 3 1/2. I completely avoided it for nearly 2 years as the dietitians recommended and it did go away. It was difficult to avoid both fructose and dairy. However, he doesn't like cheese or anything like yogurt/ or pudding recipes on this site. He does get the calories/fat from milk now though, so I hope your son outgrows his dairy intolerance soon for that reason!

Dairy allergies run in my family. My sister's 4 boys were all allergic and are all fine now too. Hopefully that is the case with your son also!!

Hang in there!!

carrie

[Tammy]

Hi Kim,
My daughter is HFI. She doesn't have a problem with dairy, which is a very good thing for us as she lives on dairy.

I agree with everything Carrie already said. I do really advise you to talk with his ped first, then have the ped send you to the nutricianist, or whereever the ped thinks. I really push for a DX for a couple of reasons. It's good to have one so you can adjust the diet as it needs to be. You don't want to assume something is ok, and then find out later that it caused unseen medical problems. Another main reason is to have it documented in his medical charts. If something would happen in the future, you could run into problems if he would ever have to go into the hospital for something, as an example. When my daughter was in, she needed a special tube feeding formula that my insurance would NOT have covered without the DX. Same with some of the meds they had to change because of having sugar in them. Also, a DX gives you much better peace of mind. You know you are doing the right thing. You'll probably still question a lot of things, but at least you'll know you are on the right road. It will also carry much more weight once he is in school and you have to deal with them.

Of course all this will take time to get a proper DX. And in the meantime, if he is doing well on this diet, then I'd keep him on it until the Drs told me different. Carrie is also right in that it does get easier as you get more familiar with it. So try some of the recipes, and as you have questions, ask away. We all have been where you are now, and are more than willing to help where ever we can.
Tammy

[Kimber]

Thanks so much tammy/Carrie

Carrie

I went to HS in Rumson and my mom lives in Shrewsbury
Small world!

I know I need to pursue this with his GI and ped...I've mentioned so many times his food issues and keep getting blown off because he is in the 25th for height/weight

I'm so confused because he seems to tolerate a SMALL amount of pears/apples...which have a high fructose level
BUT I gave him a few (6-8) small frozen organic blueberries and he had an awful episode last night before he finally had a b/m (passed them whole)

If anyone checks back in I do have 2 questions
1. When you first started the diet, did you kids have constipation issues and what did u give them
2. If you child was sick was antibiotic did they seem to tolerate best...what about pain meds...for now I buy dye/free?

Thanks, Kim

[Tammy]

Hi Kim,
My daughter never had constipation issues, just the opposite in fact, but some of the others did.

As for meds, always have your Dr check his PDF (physicians desk reference) for the inactive ingredients. The PDF lists everything that is in all meds. That is the safest way. Our dr always gave Regina Septra for ear infections. For over the counter pain meds, again, just check the label. It will list them somewhere. Mostly, it's the adult tablets that will have to be used. You should check with your Dr on how much to give him. Adult Tylenol is ok. some generic ibuprofens and motrin are ok, but Advil contains sugar.
We always use the Tylenol. For colds, again, you can get some adult things like Dietitic Tussin for coughs, Robitussen makes a SF free one, too. The best thing is probably to go to your local store, see what is available in your area by reading labels, and then calling your Dr and asking how much to give him.

As far as he is still gaining weight, Regina always did, too. She was always on the small end, but she was always on the chart.
Tammy

[carrie]

Hi Kim. Yes, small world ...I live in Little Silver and work 12-15 hours a week between the Little Silver, Fair Haven and Shrewsbury school districts. We were at Deane Porter in Rumson last summer since Sickles was under construction! Email me, we can chat more about the doctors/nutritionists I'd recommend in the area, where to shop, go out to eat, etc etc. Maybe we can meet for coffee/tea? ...or at a park to let the kids run! :-)

Ben did have constipation for a while and was prescribed Miralax. It helped. As for pain meds and antibiotics, we usually crush 1/2 adult tablet. My pharmacist and pediatrician are great at figuring out the dosages we need for all meds and looking it all up to make sure it truly is fructose free. We usually stick to Tyelenol for pain/fevers and zithromax for an antibiotic. It works, my pediatrician advises we don't venture out for other things if those work! It was a long road to find the antibiotic!! So, to get him to take the med, I'd just put it on a spoon and he'd take it right off the spoon that way, or I'd just cut it in 1/2 and have him chew it . He didn't really even wash it down with anything because he'd end up backwashing it into the cup. Sometimes I'd give it with 1/2 smartie, but he took it without, so I figured why bother adding the dextrose. I'd just move on to the next activity and he'd go along. Now he's swallowing a pill, he started last summer. I had him practice with 1/2 smartie and he just got it after a couple tries. I'd hand him the water at first, but about a week later he was able to hold the pill in his mouth safely and then pick up the glass to drink it down.

I've never really used cough meds though. We just sit in a steamy bathroom with the shower running on hot and read books...then he'd sleep inclined.

I could recommend a couple nutritionists to you also if you'd like. It may be good to do the 3 day log of your son's diet and have a professional sit and go thru it and make sure he is getting everything! I'm glad Tammy thought to mention that to you, it slipped my mind. She also encouraged me pursue getting a diagnosis so we don't run into big and probably expensive medical issues down the road. It was great advice...and we are still in pursuit!

I hope the blueberry episode resolves quickly. Send me a note if you'd like me to give you more info .....I'd be happy to help!

take care,
carrie

[laurie]

Hi Kim,
Just wanted to drop a little note here.....my son Hunter, now 8, has been to hell and back with food/reflux issues (22 surgeries and is currently tube fed).
He maxed out on the adult dosages of reflux meds when he was only a year old. I never made a connection to food but stayed on his pediatrician with every symptom he was having.
She finally referred us to a GI that gave us the HFI dx. It took about a week to notice changes in him, the first major change being he had his very first normal bowel movement. For 7 yrs of his life it was only bright green watery diarhea. Stuff would go in one end and shoot out the other, lol.
There are great diets to give you some help in choosing what to feed versus what not to feed, but keep in mind tha each child is different and tolerates things in a different manner. As I have come to find out, just because a food is listed as "safe" doesnt mean it's going to work for Hunter. (we have failed most food trials we have done)
I know its hard, its been hard on all of us......welcome to the world of trial and error. You'll learn something new every day and at times I'm sure get very down and out, we all do, but all of us have experienced just about everything between us and are more than willing to let you know how we cope.

Laurie

P.S. I'm glad I read these Tammy, I had no clue there was a SF cough syrup!!

[sonia]

Hi Kim,
My son has been on a minimal fructose diet prescribed from the hospital since June last year. although his BM's changed significantly to become very firm, he has not actually been constipated. Our dietician recommended giving plenty of water to drink, to use oats (the only cereal he can have anyway is porridge) and to use lentils and split yellow peas all to prevent constipation. So far so good.....

[Tammy]

Hi Laurie,
I can get the diabetic tussin in my local CVS. Here are some of the products on a site that shows the inactive ingredients. Some do have aspartame, which is HFI safe and I know some of the kids had a problem with it, but I can't remember if Hunter was one or not.
www.medshopexpress.com/medicine-shop-cold---cough-diabetic-tussin.html
Here is the robitussin
www.robitussin.com/cough/cough_sf_lbl.asp
I can't just get it locally, so that is why I use the first one.

Also, for a sore throat, Chloraseptic spray - Cool Mint is ok.
www.chloraseptic.com/products.asp?brand_category_id=1&product_category_id=1&product_group_id=2

We can also get a CVS brand of cough drop that is ok.

I hope no one has to use any of these this year, but since it is the season............Hope it helps if it's needed.

[Belinda]

Hi Kim

I'm also a "newbie" to the site, so let me first describe my family and our food experiences. My husband Michael and I have always had grumbly bellies, and he suffered diarrhoea until age 2. Sebastian (4) is our bright, excitable young man who always had trouble sleeping and produced the occasional green poo. At age 2, he developed a persistent night cough, tummy aches and pale stools. Strabismus (crossed eyes) was diagnosed just before age 2. Then along came Angelina (1), a happy, social bubby who would scream and posset during feeds, sleep for short bursts and breastfeed at all opportunities. She produced a rainbow of poos and loved to be upright.

We endured the FAILSAFE diet for the last 18 months (low-chemical elimination diet free of additives, low in salicylates, amines and flavour enhancers) without much success - in fact it made us worse! Sebastian also trialled Ventolin, various other asthma meds and reflux meds without much improvement. Angelina's symptoms persisted with reflux meds too. Sebastian was due to have an endoscopy, but I declined as I was sure diet was the answer. Pears, apples, wheat and onions seemed to be the ones causing major problems. Then, in January this year, I came across guidelines describing how limiting fructose and fructans can help IBS (produced by the PhD research of Sue Shepherd, Aussie dietitian based in Victoria with heaps of publications, cook books and a shopping guide for fructose intolerance/malabsorption), the kids are now napping easily and sleeping thru the night, without unusual poo, cough or tummy grumbles!!!

We are now testing thresholds for fructose and fructans and are enjoying the world of dextrose as well as hearing the advice and stories of all of you guys! I suspect we all have DFI rather than HFI, but I do have my suspicions about Angelina.

Kim, it sounds like you've had an opposite experience to us since you're finding that apples and pears are better tolerated than other fruits. If you don't have much success going fructose-free, have a look at the FAILSAFE diet - salicylates and amines may be relevant to you: www.fedupwithfoodadditives.info/

Belinda

[megcarbajal]

Hi Newbie,

I didn't check the date of your message. I think it's been a while but I am new to the site and wanted to add my 2 cents worth.

My daughter was just diagnosed with a lactose/fructose/sucrose intolerance, but prior to that I thought all her issues were related to her corn allergy. You mentioned a reaction when corn was eaten, and I wondered if you have had your son allergy tested?

My daughter has similar reactions to your son and I am just now trying to sort out what is allergy related and what is related to her sugar type issues.

Here is a website forum that could give you some great corn-allergy info:
forums.delphiforums.com/n/main.asp?webtag=AvoidingCorn&nav=start&prettyurl=%2FAvoidingCorn