Flu Vaccine

[antonia]

Wondering if those of you who have a diagnosis would have information on this year's flu vaccine. Without a diagnosis it's difficult to get information on what's in these vaccines from doctors. Does anybody know if the ingredients are HFI safe? Any sorbitol or other fructose containing ingredients?

My daughter had a bad hypo spell after she was given multiple vaccines at age 4. We've not done the flu vaccine since. But as usual we're being warned by the media that this will be a bad year. I'd like to vaccinate her if I can. Since illness itself also leads to hypo episodes it's always a toss up, do we vaccinate or not?? Any advice would be appreciated.

[jenn123]

We don't get this vaccination.
Your doc won't let you see the ingredients ?
I found this online ... it says that they have both sucrose and sorbitol as stabilizers. Maybe if you had a brand that they use. You could maybe pull up the ingredients on website.
www.healthline.com/health/cold-flu/flu-shot-ingredients#overview1

[antonia]

I suspect it will be like any other time I have needed meds. If I inquire about their safety, I'll be sent out to research what brands local pharmacies carry and whether one might be more safe than another. So I'll sit on the phone and listen to each pharmacist rattle off long lists of ingredients, most if which I'll have no clue what they are. Each call involves an explanation, what I'm looking for and why. And with the meds that are in pill/capsule form there's always the determination of whether that pill can be broken into the proper dosage. I just dread it. And I'm not really qualified to do it.

I realize there's a lot of controversy over flu vaccination outside of HFI. Just wondering, in the case of HFI, do doctors recommend vaccination, or do they feel the shot itself is a risk for fructose contamination.

[Stefanie (Ziba)]

Here is my two cents:

We stay away from most vaccines because most have some form of sugar and all of them have additives that are arguably not good for anyone's liver, especially an HFI liver.
However, the one exception is the Prevnar (pneumococcal vaccine) - there are no sugars in this one and the scariest part about getting the flu is the potential for pneumonia, so between the Prevnar shot, having albuterol on hand for nebulizer breathing treatments, compounded ibuprofen for fevers and washing hands/keeping him away from anyone who has any symptoms, we feel these measures are safer, more effective and less risky than getting the flu shot. Just my opinion, but wanted to share.

[ukbill]

About the only thing any of us needs to worry about with IV meds is if there is Sorbitol in them.

Even then unless we are really in a "challenged state" there should not be any long term effects.

So much rubbish is on the internet about the "side effects" and problems with vaccines it make my blood boil.. simple fact is always nothing absolutely nothing is risk free ever.

But getting measles or Mumps is and can be really bad. My eyes and lungs were damaged by measles when I was 5 years old and really iffy with undiagnosed HFI and parents who had no idea (as there were no sources of information in those days) what to feed me. I survived relatively unharmed however.... I have been lucky.

I remember having the Mumps.. luckily I was sent to see a local school mate who had the infection as we all were in those days to get it out of the way.. chicken pox too.. It was really not nice.

PLEASE if your children are given the opportunity for the vaccine get it!

By preference I would say individual jabs rather than the combined MMR (which is really the only one with reported issues) but even then the MMR is far better than getting any of the highly contagious potentially lethal illnesses.

[antonia]

Thank you for sharing your opinions. I guess my first step will be to get on the phone and find out what's in this year's vaccines. The last few years we've just hole up in the house through flu season because when she comes down with bugs with fevers it has often left me shaking in my boots, she gets so horribly sick. Home schooling because of it. But I need to let her start living a little. At least get her into some fun activities with other kids.

Thanks again.

[Katie535]

I’m an adult with HFI, and last year I had the flu vaccine (required by my employer). I reacted terribly and became very hypoglycemic. This year, I asked to have form of the flu vaccine that is given to pregnant women (it is the dead virus, preservative free, single dose). It does not have any mercury or heavy metals, and I was hoping that it also did not have the long chained sugars that are used as preservatives. Thankfully, I did not any reaction. I do want to say that I’ve been struggling lately with maintaining a strict HFI diet, so I know I’ve got a bit of a “tolerance” right now so I’m reacting less severely. After the holidays, I’m getting back on track. But last year, I was in a similar state and I reacted very strongly to the regular flu vaccine. I wish they made preservative (which hopefully includes sugar) free versions of all of the vaccines. The TDap also has a preservative free version. One last thing- they use some ingredient that is derived from eggs in that particular type of vaccine - so if you have an egg allergy, don’t get it.

[antonia]

Thanks Katie. That's very good information. I didn't know they had different versions for pregnant women. I was never offered this when I was pregnant, but that was 8 years ago. (At the time everyone was freaked out about the swine flu and pregnant woman were suppose to have priority, but the vaccine sold out anyway and I never got it.)

I thought all vaccines didn't use live viruses anymore? However, my husband told me several of his coworkers got the flu vaccine together and they all ended up getting sick from it, all out of work at the same time. So it seems even though we keep being told you can't get sick from the vaccine, it's just not true. After hearing this I decided not to vaccinate my daughter. Then later I heard the vaccine is only 10% effective this year. Definitely not worth it. But for future reference, I'm going to ask about preservative free versions for all of the vaccines. I think my daughter is due for a whole slew of vaccines next year, and considering how sick she got the last time she received them I'm very nervous about it.

[rysmom14]

Antonia,

I spoke with the genecist about vaccine and things since my son is going to be due for his 4 year old vaccine soon.

There are traces of sugar in some of the vaccines, but they are still recommending that he get them. along the same lines as Bills thinking. The benefits well out weigh the risk. The Dr. recommended that we just be very diligent on his diet the week prior ( which we always try to be) and just keep a more close watch after the vaccine to watch for any reaction.

One of the other thoughts she had was that he did get these vaccines already as an undiagnosed child. since there was no diagnosis, we was not eating the correct diet and he received the vaccines with the sugar on top of that. He wasn't hospitalized, so they feel that its best to get them. This may not be the case for everyone as some people may remember extreme illness after the vaccines, but we are going to get them.

I do opt out of the flu shot now, because these are hit or miss, but In the early stages of being diagnosed, I know I asked for the preservative free.

[Stefanie (Ziba)]

With an abundance of respect...
Vaccinations are a very heated topic. Our ten year old daughter is fully vaccinated, so we are not one of those nutty families who thinks vaccines are evil. Remy had all his shots until 9 mos old when we began to suspect a metabolic disease, and then his doc and I discussed risk versus benefit. We still don't have a diagnosis and our geneticist is adamant that live vaccines can cause great damage if his mutation is at the mitochondrial level (which we are fairly certain it is). So, that is why live vaccines are off limits for him. I have been on the VAERS site and have looked at every vaccine and the descriptions of children who went into a coma, had neurological damage, or even died due to a reaction stemming from an "underlying condition" or "unknown condition". I agree that for most kids, vaccination is safe, but we are talking about children who have extremely rare conditions. Our doc thinks Remy may be one of the only people in the world with his exact mutation. No study can tell me he will be OK after having a live vaccine. And our trusted doc says he may not. He is my life and I must protect him from the highest risks, and in his case, the live vaccines are the highest risk. If everyone who can get vaccines would do so (like our daughter), the most vulnerable children would still be protected.

P.S. Prevner has no sugars and is inactivated, so no worries there. DTAP is also fine since it is not live. MMR and Varicella are live, so he cannot get those. We never got the flu shot even before Remy was born for the reasons Rysmom mentioned. And, we always did just one shot at a time- even with our daughter. 

[antonia]

Thanks rysmom and ziba for your input. I do hope now that Palmera is fructose free she will tolerate vaccines better. The last round that made her so sick did include the MMR vaccine. I told doctors when we were in the hospital that she had had vaccines the week prior but was basically ignored. I don't think it was even written down.

Ziba, can you explain what it means that a mutation is at the mitochondrial level? This is wonderful that you have a doctor that takes you seriously and you can trust. Unfortunately, I cannot say the same for us. This is where a lot of my anxiety stems from and the main reason I've chosen to home school Palmera. I am once again a giant ball of anxiety at the height of flu season. This strain reportedly causing otherwise healthy children and adults to die suddenly. Then I saw that hospitals have run out of IV fluids (shortage due to hurricane in Puerto Rico, shutting down a major manufacture of these fluids), and so they are pumping Gatorade into flu patients stomachs with GI tubes instead! Ugh!! Really?? I so hate living with this kind of fear.

[colormist]

OMG, I also freaked out about the Gatorade being pumped into flu patients. NOOOO! Seriously, all my worst fears. I am happy I work from home.

I did hear that they have a vaccine out for this strain now, so if you're really worried you might be able to get vaccinated. I mean a reaction from a flu shot is way less scary than having someone force-feed you gatorade.

[antonia]

I know. I really just have no (appropriate) words.

I try to imagine myself in this scenario. What would happen if I refused the Gatorade? I'm thinking I need to develop an emergency kit of some sort with options to replace Gatorade. Not sure if unflavored Pedialyte would be any better. Or safe baby formula.

[rysmom14]

I wanted to share another bit of update on vaccines.

the geneticist called last night and we spoke at length about the vaccines again. In December she had said that the vaccine risks outweigh the risks of actually getting the disease but wanted to see the actual names of the vaccines that would be given so I sent her the actual names of the vaccines ( they were proquad ( that is the one with the MMR) and then Kinriks (sp?) is the other vaccine. The Dr. said that the Kinriks has safe ingredients that are listed and the phantom media is derived from cows. there is polysorbate in the kinricks vaccine but that would equate to .001 mg of potential sugar.

The Proquad on the other hand has 16 mg of sugars. I cant remember the specific kinds. The Dr. was surprised because usually if the vaccines in proquad are given separately there is around 10 mg of sugar in each, so she was hopeful that there would be much less exposure if the vaccines were combined. After looking at the amount, she is recommending that we wait for the Proquad vaccine. the reasoning is that my son has had elevated liver enzymes that fluctuate from mildly elevated to high over the past year. because of this, she wants to hold off on giving him the vaccine because she doesn't want to the vaccine to cause a higher spike in his liver numbers.

where the Dr and I disagree is that she feels that he will tolerate the vaccine because when he received it as an undiagnosed 1 year old he seemed fine. I know from others experiences with Ryan and you all with HFI, that once you are fructose free, your tolerance seems to drop. This is what we have been on the fence for about the proquad vaccine. and in light of the 16 mg, Im not sure if we will ever give it.

Hope this helps anyone still looking into vaccines

[Stefanie (Ziba)]

Unlike nuclear DNA, mitochondrial DNA is only inherited from the mother. So, you share the exact mtDNA as your mom, grandmother, etc. And your sons have yours, but they will not pass it to their children. Many disease lie in the mitochondria (many have not been discovered). Our doc believes Remy has a defect in fructose metabolism that is a mutation at the mitochondrial level (DNA he got from me). Mito diseases can be very serious and affect multiple systems. Rey's carnitine deficiency and his elevated beta-alanine are signs of mito. 

[Stefanie (Ziba)]

I called Abbott Nutrition (the makers of Pedialyte), explained the seriousness of my son's condition, and was reassured that the dextrose in unflavored pedialyte is 100% pure.

This became important this past weekend when he had a stomach bug and I needed to make pedialyte pops for him to suck on. He seemed fine after having these nasty tasting salt water flavored popsicles, but he acted like it was the biggest treat in the world ;-)

[colormist]

I'm really wanting to try these nasty tasting salt water flavored popsicles now!

[ukbill]

OK look when speaking to medical people.. PLEASE tell them you or your child has Fructosemia not HFI

I know I have said this before and apologize for being such a boor about it but try it and if your medical professional is worth his or her qualification they will react VERY differently and take you seriously.

I know from experience how hard that is.. and so do many others.

Fructosemia indicates to any medical professional that the condition can prove fatal and "intolerance" means to them nothing more than an upset tum.

I would say on balance getting a vaccination as a child and being ill for a day or two is far better than the life long damage even a mild dose of Measles can cause.. I can vouch for that personally. I also have friends who got Mumps as adults.. and that is really not nice even as a child.. as an adult it is a very serious condition indeed!

Rubella is not a condition many people would even know they have.. but for a 1st semester baby will be cause lifelong damage.

So you might not have a problem..but you could pass the infection on and damage an unborn child.. not something I would like to risk.

So make you choices and go for it.. one way or another.. but please do not believe any of the conspiracy crxp that is out there about vaccines in general.

I would certainly get any daughter the vaccine against Cervical Cancer!

It came out too late for my daughter to have.

I know of far too many wonderful ladies who are not here now because of that nasty form of cancer.

[Stefanie (Ziba)]

Rysmom,

What ever came of Ryan's 4 year old vaccines?

Remy will turn 5 next month and now that his liver is healthy (ALT mildly elevated but all else good) and he looks/acts/feels well, our geneticist says it is time to catch him up on vaccinations. He said it is understandable that I would want to do this slowly and one at a time. But, with him starting Kindergarten and Measles on the rise, he wants me to start with MMR. He is due for DTAP, Polio (both of which he had as a sick infant) and is supposed to get MMR and Varicella (has not had these yet). I am terrified of side effects and see the amount of the ingredients:
The reconstituted vaccine is for subcutaneous administration. Each 0.5 mL dose contains not less than
1,000 TCID50 (tissue culture infectious doses) of measles virus; 12,500 TCID50 of mumps virus; and
1,000 TCID50 of rubella virus. Each dose of the vaccine is calculated to contain sorbitol (14.5 mg), sodium
phosphate, sucrose (1.9 mg), sodium chloride, hydrolyzed gelatin (14.5 mg), recombinant human albumin
(≤0.3 mg), fetal bovine serum (<1 ppm), other buffer and media ingredients and approximately 25 mcg of
neomycin.

Can you provide an update on whether he got the MMR II and how he handled it?

Thanks!

[colormist]

I think 16.4mg of unsafe sugars will either make him a little queasy or very hungry. Can he eat before and after? Eating and drinking a lot of fluids (milk or water) would help him process the vaccine. If he has a very safe diet the week leading up to the vaccine, I would think he would handle it okay. Will the doctor's office monitor him for an hour afterward--just in case he needs a glucose IV or something to help with the low blood sugar.