COVID-19

[Stefanie (Ziba)]

I know we are all worried...I have stocked up on safe food and compounded meds for Remy. But, now with the WHO recommending acetaminophen vs. ibuprofen, I am getting acetaminophen compounded as well. He has never taken it due to it being hard on the liver. Any HFI moms in here have experience giving it to their little ones?

[haz]

I would recommend that you consult your doctor first before giving your child any medication. I am a liver toxicologist (and also have HFI). Acetaminophen is safe when used at therapeutic levels, it is toxic only once the therapeutic/ recommended dose is exceeded, or the drug is used repeatedly at the highest therapeutic dose, in which case it would be very dangerous to the liver. I would expect that if your child's liver is otherwise healthy you would be okay to treat a fever with acetaminophen at or below the therapeutic dose for a child of their age/ weight. However you should never self medicate, even with OTC medicines, unless properly diagnosed and advised by your doctor. Unless your child definitely has a fever do not provide them with acetaminophen. I would also mention that children are less likely to be symptomatic for COVID-19 and so I would not worry too much about it. I hope that helps in some way.

[Stefanie (Ziba)]

Thank you for your input. You are quite the wealth of knowledge being both a medical expert and an HFI patient.
I only give fever reducers if he is looking/acting hypo, not staying hydrated. My philosophy is to always let the fever run its course otherwise. I do hope that children continue to be less vulnerable to this virus.
I have to have everything compounded for my son, so I go through his geneticist to get every prescription, so I will be discussing when/if it would be appropriate to give him ACETAMINOPHEN should he ever get COVID-19.
Thank you , again!

[rysmom14]

Hi Ziba!

I am having serious levels of anxiety over all of this. We have some safe meats stocked for Ryan, but with things constantly changing and possibilities of lockdowns and such, I never feel like I have enough. even now, the few times we left the house to go to the stores, there is no meat, especially not the brands that we feel most comfortable with for Ryan.

But to address your question, Yes, we used to have Tylenol compounded for Ryan and could be given orally since it was a liquid. we have since tried to get away from that type of med for fever and pain for 2 reasons. 1 was the same as you have mentioned; the harshness to the liver. the second was that the suspended medication was only shelf stable for a short period of time. maybe 3 months? after that it separated and settled and was not accurate to dose.

The docs didn't see anything wrong with using the Tylenol on occasion and the times we had used it, Ryan only needed 1, maybe 2 doses.

Now that Ryan is a bit bigger, the docs were able to give us dosing amounts from adult size pills. we just crush it and add it to his yogurt.

[Stefanie (Ziba)]

HI Rysmom!

Thanks so much for replying!!

On Friday, I had the pharmacy compound acetaminophen capsules for Remy (nothing added to them). The capsules are 325 mg but since he is 5 years old, I would just give him 3/4 of the capsule if need be. As with his levocarnitine, I would just open the capsules and mix with food. I am hoping that I won't need it at all since we are holed up in the house 24/7.

As for the meats, I have always ordered our meats from ButcherBox.com and grasslandbeef.com. On Thursday, I put in an extra order to completely fill our deep freezer. Maybe you can put in an order of meats before things get worse. I figure between meats, oatmeal and vitamin C powder, our HFiers can survive.

I am here anytime you need someone who "gets it". I understand the anxiety completely.

[christi]

Mar 18, 2020 10:12:49 GMT -5 Stefanie (Ziba) said:

I know we are all worried...I have stocked up on safe food and compounded meds for Remy. But, now with the WHO recommending acetaminophen vs. ibuprofen, I am getting acetaminophen compounded as well. He has never taken it due to it being hard on the liver. Any HFI moms in here have experience giving it to their little ones?

[christi]

Mar 18, 2020 10:12:49 GMT -5 Stefanie (Ziba) said:

I know we are all worried...I have stocked up on safe food and compounded meds for Remy. But, now with the WHO recommending acetaminophen vs. ibuprofen, I am getting acetaminophen compounded as well. He has never taken it due to it being hard on the liver. Any HFI moms in here have experience giving it to their little ones?

Hi Ziba..we are advised never use ibuprofen as its harsh on the liver and not to use it for covid 19. We only ever use paracetomol for high temp

[Stefanie (Ziba)]

Hi Christina- Ziba is my screen name on here but this is Stefanie from FB :-)

[christi]

Mar 29, 2020 15:03:13 GMT -5 Stefanie (Ziba) said:

Hi Christina- Ziba is my screen name on here but this is Stefanie from FB :-)

A ok xxxx

[ukbill]

Mar 25, 2020 9:17:53 GMT -5 christi said:

Mar 18, 2020 10:12:49 GMT -5 Stefanie (Ziba) said:

I know we are all worried...I have stocked up on safe food and compounded meds for Remy. But, now with the WHO recommending acetaminophen vs. ibuprofen, I am getting acetaminophen compounded as well. He has never taken it due to it being hard on the liver. Any HFI moms in here have experience giving it to their little ones?

Hi Ziba..we are advised never use ibuprofen as its harsh on the liver and not to use it for covid 19. We only ever use paracetomol for high temp

Christi, who said that? Because they are wrong.

It is handled in the kidneys not the liver, paracetamol is a problem on a challenged liver but perfectly fine on a healthy one so exactly the opposite is true.

The evidence according to Metabolic Support (and the NHS) in the UK is not conclusive. If a fever has to be got down and paracetamol has not had any effect then all options are on the table!

If all else fails then a fever can be broken safely by showering in tepid water (normal body heat or slightly below) for 45 min or more until normal body core temperature is reached.

This is a last option position however, I know it works or has worked very effectively for me once, when we were faced with a delirious child completely burning up, a very long way from any medical help and none that spoke any language we did.

Do not take it too far, hypothermia might be as bad.

I stood in the shower with an almost lifeless, limp, unresponsive child in my arms who quite quickly started to show improvement and after 25 min was talking again after 40 min was laughing and joking like he normally did.

A close save I think.

[ukbill]

This is the new "safe " foods list form Addenbrooks hospital in Cambridge the UK, while I will be the 1st to say its not actually that safe.. yet.

The document is very useful because the first 2 pages have a good medical description of the condition.

So if you meet a medical professional who has not every heard of HFI... well that's nearly every single one of them of course, giving them a copy of the front pages will help a lot and save one hell of a lot of explaining and them not believing you and still getting their advice wrong.

Enjoy

Attachments:

Addenbrooks HFI diet sheet.docx (51.45 KB)