This is something that you are all very sensitive about no doubt! What we have learned in our kids with PFS or PFAPA is that this is not germs but an underlying inflammatory condition. HOWEVER, this is NOT the majority of fever causes in fact, fever is caused much more frequently by OTHER things.
A few things to keep in your mind as you read this are:
1- Do I allow 24-48 hours of time to observe my child to determine if they have germ symptoms, or the fever resolves on it’s own? (This would indicate a presence of germ in either situation). Does my child also exhibit their classic PFAPA symptoms of mouth sores, joint pain, stomach upset, enlarged tonsils?
2- What is my child’s temperature? Is it ranging from 99-102 only? If this is the case, and you are waiting, this may still be a germ. A fever in this range is NORMAL for germs (and sometimes even slightly higher depending on the germ).
3- Am I gaging my response on the temperature and my immediate reaction as a PFAPA parent, or am I seeing how my child is feeling and gaging my response based on that? Do they have other classic PFAPA episode symptoms right now?
** Please note that you should follow the guidelines provided by your doctor for treatments or medications. But speaking as a mom with a child with this condition, these three things are very important in understanding what is normal immune response and what is not. They are also important to decide whether you want to continue to use a medication that could potentially be unneeded and cause its own side effects.
Of course we have come to the conclusion, either ourselves or via diagnosis, that our child’s repetitive fevers are caused by this inflammatory condition. Inflammation is the way our body heals itself. We NEED inflammation in order to function, but where things go wrong is when we do not properly recover from that inflammation. Or when this inflammation response is triggered for unknown reasons, that are NOT germs, and continues on a low lying level. This is not the only symptom these kids have either and that is important to note here.
This is where we look to CORRECT this condition. Underlying chronic conditions inflammatory in nature come from the base of 3 things. Genetics, environmental factors, and gut imbalance (lack of nutrients and irritating foods). These are the main components of any chronic condition and inflammatory processes in the body (outside of injury of course). What that means is that we have control over our nutrition/foods, we have the control to work toward gut balance and healing, and we have some control over certain types of environmental factors. We can decrease toxins in our life, and we can control things we put on our body. To a certain extent we have water cleanliness control, and we can control if we choose certain medications and products we consume as well. The genetics is there but alone will not guarantee you have the condition that it dictates. This is the same for lupus for example. There is often a low grade fever as a symptom for lupus that is not caused by germs but the underlying inflammation raging in the body. This too is often given prednisone.
So in PFAPA you have this trio that triggers the response. We look to stop that or slow it down so it happens less frequently in nutritional therapy. However, that doesn’t mean that you are going to STOP ALL FEVERS in your child. The goal is to stop the periodic fevers that occur as inflammatory responses and imbalances.
We react from the fever symptom but you should also ask or look for these things in your child:
* Do they have mouth sores?
* Are their tonsils enlarged?
* Do they have joint pain, or digestive upset that often accompanies their PFAPA episode?
If your child is showing a fever only, and no other PFAPA symptoms then there is a very good chance this fever is from one of the causes below!
With that said – your child is GOING to experience fevers in their life. It is not possible to have a healthy immune system that doesn’t experience fever. Fever is a healthy immune response in the presence of germs.
Colds – Viruses
These cause fevers. Your child will most certainly experience multiple colds a year. If too frequent there is an underlying issue as well. It would be related to gut balance as well. However, several times a year is COMPLETELY normal.
These are THE MOST common cause of fever today. Your child is most certainly going to have several of these a year. If you are thinking right now to yourself that my child has not had a cold since diagnosis and use of prednisone. Consider otherwise.
Have you used prednisone then to find out in the next 24 or so hours that your child has a cough, runny nose, or other cold symptoms?
Have you used prednisone and your child has then had a fever reduced, but then it returned again? This is another sign of underlying infection.
These can cause fevers. These may require antibiotic treatment, but most bacterial infections will not require that. Your child or yourself will recover fine in the same amount of time or less from these as well. Very serious infections or life threatening infections should be treated by a doctor and that is the correct way to use antibiotics.
These are also one of the most common causes of fever today. The same thing applies here as with viruses – have you used prednisone but then witnessed clear symptoms of infection or not had a fever resolve or return?
Fungal infections (lung and internal)
This is far less common. But these types of infections can also cause fever.
What does this mean?
If at this point you are feeling lost and confused – I understand that feeling. It is hard to tell the difference at a microbial level of what is going on, and if it is PFAPA, at certain times. But I can certainly say to you that at some point during a year your child will have several fevers that go with illness. This is protective and normal.
Which ones were they then? And if I used prednisone and it stopped it MUST have been PFAPA?
How do we know? We use the criteria above. Were there cold or infection symptoms at the same time as use? Were they directly following? Did the fever not respond like it has in the past? Those are the ones NOT from PFAPA.
If you used prednisone and your child felt better – the PREDNISONE worked (not for PFAPA but it did its job in the immune system – the meaning of the drug is to decrease the immune response). That is right. Prednisone is meant to make anyone feel better from any type of immune response. This includes germs or other.
EXAMPLE – So when I have had some PRETTY SERIOUS sinus infections in the past – down and out for over a week – prednisone helps it all start to subside. It wasn’t because it was a chronic condition problem – but because prednisone is MEANT to alter the immune response. Doesn’t matter WHICH TYPE of immune response.
So why does it “work” sometimes and not others? (Prednisone)
Because the dosage isn’t enough for certain types of infections to stop the entire process or slow it down. It works for PFAPA because they know that certain amount is needed to stop that type of reaction temporarily for that particular condition.
For example – the sinus infection. That isn’t a single dose. You get an injection if it’s terrible, and then you get a week’s worth of dosage pills. That is how it gets stopped. So with certain things like a simple basic cold it could take the fever away and lessen some of the symptoms while others remain for example. A serious infection like a bad case of strep – it will take it away first 24 hours but it will come back again as the fight goes on. (Been there done that!)
How do we know then?
So with that said – relying on dosing, then saying did it work? This doesn’t help distinguish between germ and chronic condition. If you are trying to naturally cease or slow these reactions in your child repetitive dosing at EVERY fever without evaluation will not help you sort through your child’s condition. In fact you then increase possibilities of side effects.
You are not hurting your child by allowing yourself to take a 24 hour window to properly evaluate them and decide what is happening. If your child is a PFAPA by clock work child, and you assess that is THE DAY that it will happen and there are not other signs, then you make your decision and do what your doctor has told you to at that time. However, if you have had a big lapse in time, or inconsistent fevers with your child, and especially if you are working on changing habits and food, assessment is essential to the process. Conversely if your child had a fever very recently – especially one that had other cold or infection symptoms – and then has another very quickly – you can consider that this is OUTSIDE the pattern of PFAPA. So either one or both of those fevers is not part of the pattern. Both need 24-48 hours of assessment before deciding, as there may be presence of germs. If working with a practitioner they can guide you when this happens to help you determine the best course of action. There are things like healing reactions (check out my other blog to learn more) that can cause symptoms that look like what we are getting rid of, but are not the condition.
The bottom line here is that NOT EVERY fever is a PFAPA fever, even if your child has that diagnosis. In addition – sometimes IT IS JUST A VIRUS.