Newly diagnosed 6 week old and reflux.. Any recommendations?

[jprts]

Hi there.

I am the mom to a newly confirmed HFI son who is 6 weeks old. He has reflux and I was wondering if you had any recommendations on safe meds? The specialist recommended Prevacid capsule, but pharmacist confirmed sucrose to be an inactive ingredient. Feeling bad for my little fella... Feedings are torture! Thank you for any input. I am thankful to have found this site for encouragement and support as we face this new lifestyle.

[charlie]

Wow, that is very young to get a diagnosis, how did they confirm HFI? The good thing is if it has been picked up so early you can prevent alot of damage by starting straight away on the diet. Are you breastfeeding or using formula?
As for the reflux, look out for any craniosacral therapists around you as that can be very helpful as a first treatment, especially as your child is so young. Often it can be caused by birth tensions and can be easily rectified with a couple of treatments. Obviously there are also medical problems causing it so do research who you use.
Fill us in more info when you have time. In the meantime, welcome on board, feel free to ask whatever you need to know.
Charlie

[Tammy]

HI and welcome to the board.

What part of the world are you in? It's helpful to know as different areas have different things that are HFI safe.

Yes, Prevacid does indeed have sugar in it. My daughter takes a generic form of Prilosec. Omegaprazole. She does fine on it but be sure to go through his doctor as he is so young.

This diet is a little daunting at first but it gets easier as you go. Claudia is our newest mother with the youngest child. She will probably be of great help to you.

Since he is so young, this will give you time to wander through this board and get some ideas before he really starts to eat "people" food.

We're always here to help. Even if it's just for moral support. Ask any and all questions. Sometimes you might get different opinions but again, that can be helpful as you can then make your decisions based on what your sons likes/needs are.

Welcome to the family.

[jprts]

Thank you both!
We live in Savannah, GA. I just spoke to the doctor and he recommended crushing a zantac tablet, dissolving in 5 ml water, and giving 1 ml in bottle in morning and night. We will try it!
As far as our story goes... In 2011 my husband and I welcomed a little boy.I had chosen not to breastfeed. He was started on a basic formula. Due to his groaning, constipation and gas pains, he was switched to a sensitive formula. At 2 weeks he began projectile vomiting and was treated conservatively for 4 days. His vomiting got better but he then began having severe diarrhea and got lethargic. He was admitted to hospital for rehydration and was found to be hypoglycemic. Unfortunately, it was too late. He had become septic and passed away. His autopsy showed liver cirrhosis and areas that were necrotic. The pathologist couldn't pinpoint a rrson, and John's liver was sent to the Mayo Clinic in NY. They were also unable to determine a cause, and his liver was sent to a specialist in London. The doctor was only able to determine that he suffered from a genetic metabolic disorder.. nothing conclusive.
Naturally, my husband and I were nervous when we delivered our second son,Reid, 6 weeks ago. I started with breastfeeding nd supplementing with formula. Again, at 2 weeks, he began to projectile vomit. There was nothing else wrong.. he looked and acted totally normal! We immediately took him to pediatrician who admitted him for monitoring given our history. His AST was 1800, ALT > 3000, INR 10 and hypoglycemic. We were airlifted to Atlanta where he was placed on Dextrose fluids and not allowed to eat. We were told that a lot of tests would be run and results would take a long time to get back. We prepared ourselves to be patient. Immediately his enzymes began to correct themselves. After a couple days we tried a soy formula. His enzymes jumped overnight. We then started him on RCF formula which is soy based and sugar free with added polycose. His enzymes continued to trend down. After 2 weeks of monitoring and excluding disorders with testing, his labs had all gone back to normal. We were discharged without a definitive diagnosis. We were told it was either an uncommon form of galactosemia or HFI. Yesterday we had our 2 week follow up. The results confirmed HFI and excluded all forms of galactosemia.
Reid continues to gain weight and do well of RCF formula. He looks great and acts appropriately. Unfortunately, they think our first son suffered from HFI.
Thanks again. I look forward to using this site as a helpful resource!

[charlie]

Oh that is so sad about your first child, but he has saved your second child's life by putting you on alert, well done for getting the diagnosis so quickly and thank you for sharing your story.

Don't be daunted by the diet, it is very doable just keep it simple and slowly build up his list of safe foods.

As Tammy has said Claudia is a very guide for baby food as Carlitos was diagnosed early. One good thing is your son will only develop a taste early on for safe and savoury foods.

[colormist]

Medicine is always difficult with HFI. So many medicines have added sugars and flavorings to make them taste better. Even as adults, we have issues finding medicine that isn't laced with sugar. It sounds like your doctor has offered you a pretty decent solution, so that's great.

If you're still using formula, I do believe Claudia was giving her son Enfamil Premium when he was an infant. She's from the Dominican Republic, so I think the formula ingredients should be similar to those in Atlanta. Definitely check the label to make sure it doesn't have fructose, though!

I haven't had a kid, so I'm not sure when they start on food stuff. In the meantime, breastmilk should be okay, but if you need some supplement options, Claudia will be able to help!

[Tammy]

That is a sad,scary story. But like Charlie said, he probably saved the life of his baby brother.

It sounds like he is going to be a very severe case - at least at first. To affect his liver that fast to that degree is something.

I was lucky with my daughter in that I breastfed her for a couple of months, and then just by chance when we put her on formula, it was HFI safe. It allowed her to get a bit bigger before she ate anything bad.

One nice thing about being in the states is that everything is now labeled for us. You will become an expert at label reading!

[claudiarivas]

Hello!!
I am claudia!!!
I am willing to help in whatever I can !! your story really touch me because I went through a very similar path with my son, that you went through with your first.
He is almost two in november and thanks to several people in this site , he is doing wonderfully.
I never medicated him for reflux but there is options out there, you just have to seek seek seek.... crushing pills is what I do now, to be extremely safe.
I am from dominican republic, even though I travel frequently to the states.

again, any questions please email me [e-mail]
everything gets easier with time!!

[muka12]

Hello!

My baby stared showing symptoms when he was 2 months and the pediatrician told us to change the formula, because he vomiting all the time...so we did. He was on entamil new born, and we changed to simalac...the minute he tried simalac...he stared vomiting ...he went to sleep, and when i went to check up on him...he was cool very cool...and all wet..his temperature when down to 95.7 ...we when to the hospital and they did so many test...we were there for a week...finally he Got diagnostic with HFI...he also suffer reflux and he used to take . Lansoprazole 3mg..he never had any problems with that medicine...the doctor also changed his milk to Enfamil Prosobee and he doing very good now!!! He is 14 months already! I can tell you that we had a very difficult year, but now t i know what he has and how to help him everything is good!

[ukbill]

Wow! My heart go's out to you I know first hand what its like to loose a child.
There is nothing that can be said more about that unless you have been there no one can comprehend.
Ok what to recomend. Firstly everything you eat will effect your breast milk. So (I know this is controversial but also provable) if you eat sucrose or fructose it will come over in your breast milk and effect baby.
I know this is co traversial but there is much evidence that this happens. If you had for example a few green vegetables 2 hoirs before a feed it is unlikly to effect him. But drinking a glass of coke or eating a cream cake while feeding or just before is a really bad idea.
You really need to avoid all things sweet for baby glucose is usually contaminated with other sugars between 4% and 40% and still legally be called 100% pure!
I know of a 3 year old recently ended up in the emergancy ward where everything they did made him worse (contaminated glucose and sorbitol in iv's.
The reason? Because he ate some sweets (smarties) he apparently ate a lot of them. Before this eppisode his mum could not understand why his liver enzyme's were high and his liver enlarged..
But what put him in hospital for 3 days was a few large smarties. Which are different. We nearly lost him.
This is why I keep going on about NEVER giving an hfi child sweet tasting foods.

[ukbill]

Reflux is a result usually of liver damage.
You ned to be ultra careful of any formular you feed him on soy oils and some soy protien are for some reason no one understands also a problem.
Anything containing "corn sugar, corn syrup, corn syrup solids" etc for HFI people are no good glucose is too contaminated and impure.
Med8cal grade Dextrose seems to be safe in small doses.
If he is hypo giving him dextrose might help a bit how3ver he will be very low in phosphate (it being tied up with fructose) so the dextrose will do little to hlep its best to let narlture take its cours3. Asuming the fructose / sorbitol load is jot too great he should naturally atart to recover in 4 or 6 hours.
Sorbitol is used in a lot of iv fluids and is leathal to HFI 50g can kill an adult!
Sorry if this apears alarmist but I am trying to give as much essential advice as I can in a short space of time.

[ukbill]

Sorry typing this after a long night shift driving a taxi and typing it on a very small keyboard on my mbl phone.
I will edit and correct spellings and typos later
Do not panic at all we here on this site have a lot of knowledge and essential advice.
Claudia has just gone through bringing up an HFI baby and her advice I would sugest is the best u can get from anyone.
Above all else keep smiling baby will be fine.

[hfimomof3]

I am so sorry to hear about your first child. That must have been devastating for you. I am wondering if you would be willing to share the advice you were given (or what you learned incidentally) about what formulas are safe and unsafe for infants with HFI. We have talked about that on this board but my recollection is that we were guessing about the safety of various formulas based on ingredient lists we found on the internet. What is RCF formula, by the way? I have not heard of that before. Is it a brand name?

The other poster (muka12) whose infant was diagnosed with HFI mentioned using Prosobee successfully. It lists corn syrup solids. We have previously discussed whether corn syrup solids are safe for infants with HFI but did not arrive at a conclusion. I would guess that they are safe based on muka12's experience but it sounds as if your children might have inherited one of the more severe forms of HFI so I am curious to see whether corn syrup solids were also safe for your younger child.

[ukbill]

It depends on the particular batch of corn syrup solids normally they are a serious NO!

Carrisa's boy James has just had a few days in intensive care because he was given some sweets that were made from a bad batch of Corn Syrup solids!
This is why I do not advise EVER giving an HFI child sweets or sweet flavoured foods or drinks.
We nearly lost James as a driect result!
Trust me the diet is easy if u do not mind cooking and not buying ready meals. You have to uses a lot of phycology as well, of course.
Avoiding your child becoming ill later as they grow up is far easier if the child will know that no sweet foods are safe and rejects anything sweet flavoured.
I know a lot of parents feel they want to give their child the same foods as "normal" children and feel incorrectly that they will miss out if they do not get sweets choclate etc..
All they will actually loose out on is toothe decay, obesity and heart malfunction later on in life!
You have to make them feel special and be creative a little that is all it takes.

Giving sweet foods to an HFI Child is only a placebo for the parents it is no good for the child, or any child for that matter.

We have a case in the UK of a 9 year old boy who weighs 24 stone! (X 16 to get to lbs then devide by 2.4 to get kilos)

That child would not be that size if he was not fed a very high sugar (and fat) diet.
Most processed sweet foods are also very high in salt and fat and extreemly low in nutrients.

I hope his parents are procecuted for child abuse.

[jprts]

So sorry I haven't checked the board in quite sometime! RCF is a formula manufactured by Abbott Nutrition and is soy based. There are no added carbohydrates in it so we add a powder carbohydrate called Sol Carb to it. Reid is doing very well on it. He is now 5 months and thriving! We meet with metabolic nutritionist in March to discuss starting solid foods. I am pretty nervous about it! We really weren't given any advice on formulas. He was started on it in the hospital and it worked so we've kept going!

[ukbill]

Well it sounds like you are making progress I can send you a food list given out by UK hospitals and amended to make it actually safe for HFI to use..

Most sugars available are too contaminated to use so dont be tempted to try to make "HFI sweet" foods there is no such thing as a safe sweet tasting food for an HFI!
Solid "Glucose" sweets can legally contain up to 40% "other sugars" and still be sold as 100% pure glucose.

One mother of a 3 year old nearly lost him recently because she was told smarties (in the USA) are safe, they are not safe.

So far as anyone knows the maximum level of Fructose for an adult male is 100 mg a day thats 1/10th of a gram or to put it another way 1/500th of a teaspoon full a day for an ADULT! so by this you will see that a baby or young child should have NO amount of foods that may contain fructose.

So "tolerated" foods are not "HFI SAFE" because all "tolerated " foods contain some sugar.

In short Milk cheese eggs meat and Carbs like pasta and white (low fiber only) are 100% safe (I know some people say Eggs are not safe but the amount you would have to eat is so high as to be safe in all normal amount anyone is likely to eat.

I would suggest starting him on plain pasta cooked in milk and cheese blended with a hand blender till smooth and creamy as a good place to start on solids.

Hope this helps.

[jprts]

Thanks, Bill! So far rice cereal, oatmeal and green beans are safe for Reid! Will try mashed potatoes and green peas next week! Fingers crossed we continue to do well!

[ukbill]

Mashed potatoes can be a problem buy foury white potatoes and peel them cut them small and soak them in salted water before changing the water to cook them that removes most of the sugars.
Waxy yellow fleshed potatoes are far too sweet for us, however they may be cooked.

No NOT green peas far too sweet! the aim is to keep his fructose intake to below 1.5mg per Kilo body weight. This is VERY low and 1 green pea will contain about a weeks worth of fructose!

Hope this helps?

Just remember "tolerated" is not the same as safe! Green peas are not on any reliable food list as HFUI safe.

[charlie]

Thats great that you are getting started on foods OK. I would agree with Bill on peas, hold those they are high fructose.

As he is only what, 5 months old start very slowly. I would build up the protein side of his diet first, chicken, fish, then other meats, get a good base diet going with those over the next few months, hold off on any fruit and veg for now. Cooked eggs would also be good to try as long as from a good source for health reasons not HFI reasons. A little potato should be fine but will contain a little fructose, as Bill says, cut them up, soak them in cold water for a bit, change water then boil, rinse thoroughly with a kettle of boiled water then mash them. The next veg I would suggest you try is spinach, that is low fructose. Just don't rush things, babies don't mind if they have the same food every day, don't worry about variety as long as he is healthy and happy. He isn't going to know any different.

Have you had a chance to speak to Claudia, she has done a fantastic job weaning Carlitos so she may be able to pass on her step by step of what worked.

Good luck, keep us posted.

[jprts]

Thanks for the suggestions. He is 7 months now.. Time is flying!