Adam vs flu 2018

[adamsmom]

Just wanted to let everyone know that Adam, 2 with HFI, has had the flu for the past few days but has improved greatly today. It was a rough couple of days with fever around 102 and all of the other yucky flu symptoms. The strange thing was one of the only things he would eat/drink was milk. I know if my other kids drank milk with a fever they would certainly throw up but he drank a lot of milk and never threw up. I wonder if his system works differently because of the HFI. Anyway, he got through it with only one dose of acetaminophen. I actually think letting him have his fever helped him fight off the virus better and faster.

[antonia]

Bravo. That's great to hear you made it through without incident.

My strategies have changed over the years as we've worked through Palmera's health challenges. I tend to agree not to squash the fever with meds unless you have to. I only give them if she's in significant pain or the fever is preventing her from eating and drinking. Sometimes Palmera will get through the fever just fine but then her metabolism seems to fail her when the fever breaks. When most people start to feel better, she goes down hill. In fact every time we've ended up in the ER for hypo it has been after the fever breaks, following illness, not while in the thick of it. Especially if the fever lasts a long time, even if it's lower grade, her body seems to just run out of stamina after fighting the virus for so long. The last time this happened I was able to pull her out of it with fluids, nutrient dense foods and vitamins. Pushed them on her even though she didn't feel like eating or drinking. In the past, I have also stopped vitamins when sick because they're hard on the stomach. But I won't do this anymore either.

[adamsmom]

Thanks for reply. Adam has never done bad coming off of a fever that I can tell. He drinks out of a sippy cup that is kind of like a bottle. He is always happy to get his bottle so he drinks a lot of milk when he is sick, even when he won't eat anything else. I am sure that helps to keep his sugars up. I am sure it is scary for you to have to deal with hypo on top of a bad virus. I am learning about so many side issues that come with HFI.

[jenn123]

The brand TamiFlu has sorbitol in it. Has anyone had this type of drug specially compounded minus the sorbitol ?

[Stefanie (Ziba)]

I am glad Adam is getting better. I just had this convo with our ped last week. I asked "what is our plan if Remy gets the flu"....when he has a cold, I usually just push fluids, continue with vitamins and let his temp go up to 102 before intervening (thankfully, it has only gone above 102 once...I truly believing it is a bad habit for parents to give ibuprofen at the first sign of fever because that is what our immune systems are supposed to do to fight invaders). So, I was very wary of Tamiflu going into the convo because of all the side effects and sure enough he said, he is not prescribing Tamiflu to any of his patients but especially would not want Remy to take it because it often causes nausea and vomiting (like more often than not) which is what we all want to avoid with HFI. Remy already pukes when ill because of congestion/gagging himself. We don't need more puking on top of that. Plus. as with every other medicine out there, we all know that no studies have been done on people with inborn errors of metabolism taking it, so I always choose for my kid to not be the guinea pig.

p.s. I give elderberry to my daughter which has always worked well, but our littles cannot have it because...well, it is a berry after all. I have not found any products that shorten the length/severity of viruses or releive symptoms that are safe for HFI kids....

[rysmom14]

Im glad to hear that Adam is on the upswing! with the flu being so bad this year, I am especially nervous. We had an appointment with some of Ryan's doctors in December and they said that if he were to get the flu to make sure he is drinking. especially milk if possible so it will keep his sugars up. last year he was throwing up for a day and a half and it got to the point that I was forcing him to drink milk from a medicine syringe because I has worried he was going to have to go to the hospital.

We stay away from anything OTC and try to do anything else before we even give him the compounded Tylenol.

[Stefanie (Ziba)]

Ladies-

So, Remy came down with what I thought was just a head cold 7 days ago. He gets a head cold every couple of months, usually with no fever and then it goes into his chest for a bit but with a nebulizer/albuterol treatment a couple of days, he is usually all better in a week. Well, this one has been different. He seemed better Wednesday, but then his temp climbed to 102 Wed night. The past 3 days. his temp has jumped all over the place (from 99 up to 101.5), his pulse ox was 95 for bit but now up to 98. His color seems good and he drinking water, bone broth and his amino acid formula (appetite is low but he is eating some). The past two days, he has thrown up in the midst of coughing spells, so that has me concerned. I am not seeing major hypo signs, but my glucose strips have expired so I am not sure that will tell me anything. Here is what is odd: his fever broke yesterday and today, he is more tired than he was in the midst of the fever (looking at what you wrote, Antonia and getting concerned about what you said re: ER trip after the fever breaks)....Also, he has some snoring sounds when I listen on the stethoscope. I did talk to the ped over the phone Friday and he said it sounds like a virus that may have led to a bit of bronchitis. He said to call Monday if fever is still up.

Antonia. what led to ER visits after the fever broke?
I am nervous about taking him to the doc or the ER in the midst of this flu epidemic for fear he will get something worse than he already has....but. I am very concerned about his body after days of fever (no meds of course) and wondering about his metabolic after-effects.

[antonia]

For Palmera, what elicits a trip to the ER is that she get real pale, grayish in color, begins to throw up and has severe stomach pain. I believe when she gets to this point it is the acidosis that causes the vomiting and stomach pain, not just hypo. This is based off of what I've read about ketoacidosis and hypoglycemia symptoms, nothing I've been told by doctors, but she always has acidosis in addition to hypoglycemia during these episodes. Once she gets to this point she's losing fluids and can't eat anything to get her sugars up, so hence the trip to the hospital, where they give her a dextrose and fluid IV drip. This instantly makes her feel better and gets her eating and drinking again. Although, we still watch her sugars closely when she gets home and have on occasion needed to wake her in the night and feed her so she doesn't wake in the same state again.

So, she's never been hospitalized for respiratory complications during or following a virus, just treated for low blood sugar. However, I do know of one mother with a confirmed, HFI little boy who also ends up in metabolic distress when fighting infections or viruses too. Her little boy experiences blueing and trouble breathing which can be a symptom of acidosis too. Not even sure if he vomits, and not sure what exactly causes respiratory distress when it's viral, just know that acidic blood can cause respiratory problems too. In short, it seems symptoms can vary, so if I were you I would take him in and get him checked out, or at least get some test strips at the drug store and make sure his sugars are stable. I hate going to the ER too, especially during flu season, but we've never actually picked anything up after going there. We wash our hands profusely and use hand sanitizer while there. And then wash everything when we get back-clothing, stuffies, bags- if it can't be washed then I wipe it down with Clorox wipes.

So scary when these metabolic kids get sick. I know the worry, worry, worry you feel. Hang in there and let us know how he's doing. Feel free to PM me too.

[adamsmom]

This illness seems just like the flu that Adam had. He started with cold/cough symptoms, went into fevers with no other symptoms and then returned to a cold/cough after the fevers broke. I never listened with a stethoscope but his breathing didn't sound noisy. He had a really loose cough for days though. If I were you and concerned, I would take him in just for piece of mind. He might already have the flu but you can always wash your hands extra well for protection just in case.

[Stefanie (Ziba)]

Thank you both for your insights. Thankfully, his temp has been normal since yesterday and he has not vomited in two days. The cough is loose, but I no longer hear the low pitched wheezing. He has been drinking his bone broth and formula well and eating enough (he has definitely lost some weight though). I had spoken with his ped a few weeks ago about our plan if he gets the flu. He said keep him drinking his amino acid formula, taking his carnitine, using the albuterol as needed and watch for serious signs (blue lips, shortness of breath). Like me, the ped does not think Tamiflu is good for children. I spoke with him over the phone on Friday and told him about the current illness, and he also agreed that unless he is having severe symptoms, my fear of bringing him into the office and him leaving with something even worse is warranted. He said there are so many viruses circulating, some flu and some not. There is nothing he would do differently for him in his office, and if it were very serious (like the gray color I used to see in Remy when he was an infant) then we would be heading to the ER anyway.

Let's hope Adam and Remy have both had their fill of viruses for this season and that Palmera stays in the clear. XO

[antonia]

Awesome to hear. Hopefully he's back to his ol' self and eating regular food soon!

I was curious about your amino acid formula. Is it something anyone can buy?

Oi. Several more months of flu season to go. Fingers crossed...

[antonia]

I'm not sure what Tamiflu is or how it works to lessen flu severity but I've been hearing that gargling with various liquids at the onset of symptoms will lessen the severity or duration of colds and flu as well. At first I thought this was pure superstition, but someone explained to me that it targets the tonsils where the infection often begins, so maybe there is some validity to it. I've heard of three different liquids-mouth wash, salt water and green tea-from various people who swear it works for them. Mouth wash would be out for us, but I might give the salt water or green tea a shot.

[adamsmom]

I have been taking and giving my other kids vitamins with extra zinc. I believe it has made a huge difference in building up our immune systems. There are limitations on how much should be taken daily as it can cause side effects but, I believe, when taken at safe doses can help. We have had many less sick days this year after starting the zinc. I have heard some about mineral waters that include zinc. Has anyone researched, taken or given any kind of mineral water to those with HFI.

[Stefanie (Ziba)]

I am a bit of a gargling fool myself. In fact, when Remy started getting sick, I began gargling with Grapefruit Seed Extract (acts as a natural antibacterial), zinc powder (also, I take a zinc tablet), and salt water. I did not get sick, so I do think there is merit to it. Remy is not old enough to gargle (I am pretty impressed that he can blow his nose well at age 3 though). He gets a good amount of zinc in his formula, but I may start giving him pure encapsulations zinc as well.

When we discovered Remy's fructose intolerance, three things saved him-- the HFI diet, carnitine supplementations and Elecare Jr Unflavored. It is insanely expensive and we paid $5000 out of pocket the first six months while we fought insurance to cover it but with a letter from doc and documentation, we were able to get it covered because Remy was growth restricted/failure to thrive. Otherwise, insurance will not cover it. You can buy it out of pocket at AbbottStore.com but it is very expensive. They have other formulations as well. The fact that he cannot drink milk (makes him reflux) necessitates that we have an alternate beverage esp when he is ill and won't eat much.

[Stefanie (Ziba)]

P.S. Tamiflu purportedly stops the flu virus from replicating (if taken early, it may prevent symptoms altogether)...that is the positive side. The negative is that it can cause major hallucinations and severe vomiting and diarrhea. For non-HFIers, Elderberry is a much better antiviral which has been shown to be as effective as Tamiflu (made from berries, not chemicals), but clearly this is no option for our little ones.

www.ncbi.nlm.nih.gov/pubmed/15080016
www.ncbi.nlm.nih.gov/pubmed/15080016