|
|
Post by toothfairy on Jul 18, 2008 14:47:58 GMT -5
To all parents of HFI and DFI :
Please learn from my experience with my son!!!!!! Yesterday, last night and today, he has been ill from a dental visit.. He was given only 1 tsp of meds containing a sugar. He will be back to normal in a few days, only weigh a little less I'm sure. Learning this the hard way is not the best.
If the Dentist says your child has to be pre medicated to have a procedure [glow=red,2,300]remember most pediatric meds used are in a sucrose based flavored suspension . [/glow] The most common assumption from the general public is diabetic foods would work for HFI, and therefore the same thought will go to meds. They may be designed SF for diabetic but they may still be a form of sucrose,sorbitol, or suralose. Insist they call a pharmacist, and direct them to Boston's University's HFI sugar table for reference. It's best to print and take a list with you for the DR and have it put in his chart. This will give Dr and the pharmacist complete information about HFI sugar selection for use in mixing the drugs into a suspension that is appropriate. I am not a pharmacist, but know enough chemistry to understand not all compounds can be mixed together successfully. Thus the full list is my recommendation to make this easy as possible for the pharmacist.
The dental auxiliaries do not understand the condition, insist on speaking to the Dr. More than likely the dentist won't have experience with HFI . It will take YOU explaining and giving them the resources to accommodate your child. This condition is not seen often by most doctors. DO NOT ALLOW THEM TO TREAT YOUR CHILD UNLESS YOU KNOW the MEDS ARE SAFE ..
|
|
|
|
Post by Tammy on Jul 18, 2008 23:03:18 GMT -5
the same holds true with the entire medical field. You really need to pay attention in the emergency room. I even had one dr try to convince me that the infection he wanted to give the antibiotic for was more important than the effects of HFI. Yeah, right. Regina's pediatrician finally called back in and we got that straight. lol.
As for the dentist, ours uses plain pumice to clean her teeth. Tastes terrible. Yuk. But it's the only thing we know is safe for sure. Luckily, she's never had a problem with cavities, but the time or two that she needed work, she ended up sick. The dentist was great, and we tried. We checked everything that went into her mouth, but there still must have been something hiding.
The best rule of thumb is to remember, MOM KNOWS BEST. Never let someone talk you into something that you know just isn't right.
|
|
|
|
Post by toothfairy on Jul 20, 2008 9:38:51 GMT -5
Tammy, and all else who may know any information:
You have dealt with Regina's illnesses for so long as she is 26, could you list the drugs you have encountered at one time or another which have sugar, especially things like the antibiotics. A red flag on previous drugs found not acceptable for HFI would at least give us all a place to start. I haven't found a single Dr in my area that has a clue on handling HFI. Pharmacology has expanded so greatly since most DR's were in school, many are clueless. They just don't know if what they are prescribing contains sugar. It's really up to us, to keep our HFI children's meds safe.
Everyone reading the list, should then check out the ingredients today, to see if the manufacture have changed. This is just a starting place.
|
|
|
|
Post by toothfairy on Jul 20, 2008 10:10:56 GMT -5
Tammy,
Next time they clean her teeth, take a bottle of flavoring of whatever she likes and can tolerate from your kitchen, mix a tiny drop with water and a sweetener for them. They will not need it to be more than an ounce total, take it to them. They have to mix the pumice with water anyway to make the paste to polish. Pumice can not be used dry to polish anything . If they use your sweeten flavored mixture, you know how much flavoring and how much sweeetner was in the mix and it won't taste YUK. Best of all, you will know it's safe. There is no reason for Regina to put up with YUK and have an unpleasent experience. I don't know about all HFI's teeth but my son's seems to have suffered with malabsorbion at a critical time his teeth were forming. His oral development is delayed, and the enamel isn't properly formed. DX earlier could have prevented these issues.
|
|
|
|
Post by Tammy on Jul 20, 2008 11:58:35 GMT -5
I really don't have a list of drugs that should be avoided. It would include most of them. I've never found any type of penicillin that was safe as they use a form of sugar as the base for the drug. Even in tablets.
The best thing to do is to get a PDR. Physician's Desk Reference. It lists ALL drugs, including inert ingredients. This is what your doctor uses. They publish a new one every year, but most offices only update every couple of years as they really don't change the drugs, only add new ones. (The drug companies have to go through too much red tape to change ANYTHING). What I did was talk to our pediatrician, and when he got a new one, he gave me the old one, because of the circumstances. This became my drug bible. I replaced it with new ones several times over the years. The one I am currently using is several years old, but it still works for us. It has saved us from having a mistake made more than once. Example: Prilosec OTC had sugar, but Pepcid OTC was fine. So when the Dr upped her to perscription strength, he just gave us Pepcid. When I came home, I looked it up, as is my habit, and sure enough, it's opposite of the OTC ones. Pepcid had sugar, but Prilosec didn't.
I also have the dr mark it for no generics. The pharmacist always try to tell me that it wouldn't matter, but I just don't take the chance if I don't know for sure. (If the generic is in the PDR, then I take it)
I'm in a small area and the ped always took the time to look up any drug he was considering. If yours doesn't want to, tell him you want him too anyway. I would hope he'll realize how important it is. But it's still a good idea to also have the PDR on hand for yourself anyway.
As for the dentist, taking a sweetned, flavored liquid along is a very good idea. I never gave that a thought. Regina doesn't really seem to mind the plain pumace, but like you said, why use YUK when you don't have to. Good idea. Thanks. See - even us old dogs can learn new tricks from the puppies.......
|
|
|
|
Post by toothfairy on Jul 20, 2008 13:34:56 GMT -5
The penicillin info is a great tip. PDR's is on my to purchase list right now. He is just back to normal today and it's been since Thursday.
If anyone has an issue with toothpaste ( small children tend to swallow it, no matter how hard your trying to keep them from doing so) the same thing can be made with baking soda to brush. No risk of any banned sugars or YUKKIE, if you make it yourself in a flavor they love.
|
|
|
|
Post by Tammy on Jul 20, 2008 18:53:57 GMT -5
Colgate. The plain old style is safe. Of course it's sometimes hard to find among all the "whiter" Brighter" flouride" etc. I can get it at Wal-Mart and also at Dollar General. Again, just read the ingredient label. Arm and Hammer used to make one that was safe, but lately Regina's lips swelled up on it. Not sure what that was about. I'm guessing the "flavor" - since it didn't go into what the flavor was. Now we're back to Colgate.
|
|
|
|
Post by olivias mom on Nov 22, 2008 11:14:24 GMT -5
Before could swallow pills we had a compound pharm mix her antibiotics with stevia and she did fine with that
|
|
|
|
Post by thewigglesrule on Dec 17, 2008 16:12:18 GMT -5
my husband is a pharmacist and all our antibiotics are the sugar free ones. Some taste good and some don't. I also have broken the doses up in to much smaller ones more frequently (when sugar free is not a go) so the amount of sugar is ingested with food (if possible) or given in smaller more tolerable amounts. I have found the meltaways Tylenol much more tolerable than the liquid, Flintstones vitamins are sucrose free but not the Arthur ones. Watch for Sorbital (all the 'ital's actually) as they trigger symptoms.
|
|
|
|
Post by meaniejean on Dec 17, 2008 16:39:52 GMT -5
Are the Flintstones vitamins you are finding just sucrose-free? I have been searching for a suitable children's vitamin for my littles (ages 1 & 3) and have yet to come across a vitamin without sugar, glycerin or natural fruit flavor.
I have been giving my 3 year old some Kool-Aid made with dextrose and extra ascorbic acid (vit C), but I can't get my one year old to drink it. He has a major sweet aversion. Calvin is developing more and more of a sweet aversion, but he loves Smarties and glucose tablets.
|
|
|
|
Post by charlie on Dec 17, 2008 17:30:32 GMT -5
In britain Megs dietician has prescribed Seravit powder for her vitamin supplement, comes in unflavoured or orange you dissolve in a drink, don't know how palatable it is as we are not allowed to use it yet as first ingredient is glucose powder which the paeds are still investigating her for as she still seems to have a problem with it. Not sure if that is available in America
|
|
