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Post by charlie on Feb 6, 2009 17:39:20 GMT -5
found a couple of sites for goats milk formula www.ulula.co.uk/baby-food-listing.php?CatID=152 they will ship outside the UK but not sure on ingredients. the other one which I have friends that have used it vitacare.co.uk they produce nannycare which doesn't have sucrose or glucose added. Maybe worth a try. |
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Post by charlie on Feb 6, 2009 17:43:33 GMT -5
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Post by meaniejean on Feb 6, 2009 20:00:55 GMT -5
Hey there-
Sawyer also was on a med to help with gastric emptying. It was an antibiotic and I believe it contained sorbitol or some other kind of sweetener. He always threw up after we gave it to him.
Sawyer did not handle any formula or cow's milk. He stopped vomiting when we switched him to straight goat milk and stopped feeding him baby food. Even baby oatmeal is a problem for him.
He woke during the night to feed until he was fructose restricted and now he sleeps 12 hours straight - unless we have failed a food trial - and then it is screaming a couple of times a night. My 3 year old still wakes up during the night if he has something with fructose.
I also have a recipe somewhere for a homemade goat formula recipe - I don't remember how old Hugo is - but, if you want the recipe send me a PM and I'll try to find it.
It really does get better!
Hugs to all!
-Sandra
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Post by ljs678 on Feb 11, 2009 15:42:36 GMT -5
Thanks for the links for goats milk formula. Have emailed them - one sent a list of ingredients (safe) and are going to send samples. The other said they needed to contact the manufacturer. So that is looking promising. In other news, Hugo was terribly ill all weekend with a gastro bug - the pediatrician finally took it seriously when I called on Tuesday morning and said that he was half asleep, half awake, taking no interest in anything, not keeping water down, hadn't kept any food down since Friday... When we went in he had lost 1.3 kg (approx 15% of his weight) since last week. Poor mite. So he was on a drip yesterday and today. Having seen the scary links about what you can get in drips, I checked each time he had a different set of ingredients (3 in total...) that it was safe for HFI. I think the doctor thought I was being a bit of a nuisance, but in the end said it was good I was checking. I thought so too when today he asked if banana was ok for Hugo!!! Then he asked if apple was ok!!!!  So the other thing that came out of this is that he has a very low haemoglobin count, with the indicators that it is iron deficiency. For a baby who almost lives on spinach this is pretty good. So he has had 2 lots of IV iron also, and now an iron supplement (safe) to take by mouth. They are going to follow up in a month and see how it is going. Has anyone any ideas about this? I was worried it might be because of the reflux meds, but the doctor assures me it is not. He suggested it might be because Hugo has had poor health and was knocked about by the fructose that he used up his iron reserves and now his body can't catch up and needs a bit of a boost. I am hoping this is it but wonder if anyone else has come across this problem? |
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Post by ljs678 on Feb 11, 2009 15:48:37 GMT -5
Forgot to mention, Charlie, I saw when I was looking for stuff about low haemoglobin last night that there is a correlation (but not established causative link) between low iron and restless legs. I wonder if anyone has looked into this for Megs?
Also thanks to Sandra for the thought about the reflux meds. Have had them checked by a few different doctors now and the 2 he is currently on are safe for HFI. Coincidentally these are the main 2 he has been on pretty much since birth, so we had some luck there!
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Post by colormist on Feb 12, 2009 9:24:49 GMT -5
That would explain why my RLS went away for a while, but came back recently. I was taking a supplement with Iron, but when I bought a new supplement (at Sam's Club) I didn't try to find one with iron. I guess I'll just have to eat more spinach.  |
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Post by meaniejean on Feb 12, 2009 9:36:34 GMT -5
ljs678-
I am so sorry to hear that Hugo is having such a hard time. I'm glad the ped finally took things seriously. My littlest guy got a pretty bad GI bug as well. He seems to be recovering now. He started looking gaunt like he did last year when he went into the hospital before we knew about the fructose. I hate it when he looks like that.
I believe I have read before that anemia is related to fructose intolerance. I hope that the supplement helps.
I don't know if others will agree with this, but my suggestion would be to restrict ALL fruits and vegetables for awhile. I didn't think spinach could be a problem, but when you consider that 1/2 cup contains about 400 mg sugar (from nutritiondata.com) and these little guys are so tiny ... I don't know, but it could be causing some issues. I know that if I have too many servings in one day I feel off. I'd love to hear if others have any issues with too much spinach.
On another note - we found out yesterday that Calvin's plasma amino acid profile came back normal, so the glutamine in his urine 4 days following the fructose test may have been due to liver damage or acidosis - either one of those scenarios points to HFI, and not malabsorption.
I hope everyone recovers well from this nasty virus that is making the rounds!
-Sandra
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Post by meaniejean on Feb 12, 2009 9:38:23 GMT -5
man, do all of us have RLS - mine is gone now on fructose restriction - ya!!!!!!!
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Post by Tammy on Feb 12, 2009 11:19:56 GMT -5
Actually, I agree. Restricting ALL fruits and veges until you know what is going on is a very good idea.
As far as spinach, Regina does fine on it, but like all veges, she has to limit how much. She basically only eats 1 serving of allowed veges a week. It's her treat on the weekends. If she goes over that, she gets terrible diarrhea.
Potatoes and cucumbers are the only ones she doesn't have to limit. She can, and sometimes does, eat those every day.
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Post by charlie on Feb 12, 2009 16:15:50 GMT -5
Thanks for that Laura, still waiting to hear on blood results, think they did basic screening so will ask specific results. I must admit she does go pale when reacting to anything and no energy and more restless legs so may well be a link. Trouble is quite often when taking blood unless iron level is extremely low it doesn't always show due to some reaction the blood system has as soon as it is assaulted eg a needle entering a vein. Maybe a safe low level iron would be a good idea to try. back to google then.
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Post by ljs678 on Feb 13, 2009 16:32:21 GMT -5
First, that is such great news Sandra that the blood results are back to normal!
Then, with iron supplements, Charlie, I was going to pass on the name of the one they prescribed for Hugo on Wednesday, but I just read the ingredients list and it has sugar in it. I can't believe it as the pediatrician made such a fuss that he was checking which one was safe and this was the only one that was etc etc.... Good thing Hugo had started refusing it anyway.
I sound like such a bad mother. You wouldn't believe I am really really trying with this.
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Post by charlie on Feb 14, 2009 13:41:33 GMT -5
No, no, no, no no you aren't a bad mother at all, just one dealing with a weird condition and like the rest of us going cross eyed reading and checking labels and nutritional content. It just proves the point that we have to treble check labels every time, I have looked at things, bought them, checked them when putting them away then only noticed that horrible word sugar or sorbitol etc just before starting to cook.
we were sent home with anti-biotics for an ear infection and I got the doctor to check ingredients and she said her system is set up to flag any unsafe medicines as Megs file lists fructose intolerance. Ha Ha, we got home with them and I peeled back the label to check it, in the warnings, contains sorbitol, not suitable for Hereditory fructose Intolerance. Not want you want to read when the doctors have shut and your child has raging earache.
But yes, thanks for not sending me that advice!!!!! I could be cursing you by now!!!!!!
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Post by ljs678 on Feb 15, 2009 4:46:06 GMT -5
Yes the labelling on the outside of the box said it had saccharose, no problem there. But the notice that came inside the box said sugar, not saccharose. The doctor is going to check with the manufacturer on Monday...
The best one we had with medicines was when there was just 1 consultant at the hospital who thought Hugo might be HFI, no-one else believed that fruit and vegetables were making him sick.
I was told to go home and try him with other vegetables, so we tried courgette (zucchini). He had a terrible vomiting attack, and to stop it we were sent a medicine with sorbitol in it....
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