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Old 12-22-2008, 12:07 PM   #1
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Question Pfapa

This is my first time using this site or any type of support service. I am interested in hearing from anyone whose child has been diagnosed with PFAPA. My 4 yr. old possibly has this (fever at least monthly) but before I feel comfortable accepting this diagnosis, how do I know if enough has been done to determine if it could be something else. She has not had test for immunoglobulins or any other familial type of fever syndrome. Also, how do other people deal with the feelings of helplessness associated with these episodes. I almost wish she had strep monthly so I knew exactly what it was and what to do. This PFAPA sounds like a syndrome made up when medical experts do not know what else could be causing these symptoms.

Any replies would be appreciated.

 
Old 12-24-2008, 06:00 PM   #2
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Re: Pfapa

How long have the fevers been going on and what other symptoms does she have? There are other Periodic Fevers that show up in blood work. Then if they dont see anything the doctors will narrow it down to PFAPA.

 
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Old 01-13-2009, 08:51 AM   #3
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Re: Pfapa

My son has periodic fever syndrome. Its been 5 years now. Back in the 2nd year into it. I went to see a pediatric specialist who deals in difficult cases. I was told he sees 10 to 15 cases a year like this. And in most, within 3 to 5 years, it will fade away without us ever knowing why he had it in the first place. I was also told that out of those rare cases, there were some rare cases that when the tonsils were removed, the fevers went away. They did not diagnose my son with PHAPA because he said usually children with PHAPA start at the age of 2 and end at the age of 7. I was told that the children with PHAPA have bodies that do not accept motrin, advil or tylenol. Therefore, they need to go on steroids to help deal with the high fevers. Fortunately, my son's body does accept motrin, tylenol and advil. But because of that, and his age (fevers not starting until he was 7) they would not diagnose him with the term PHAPA. I understand your frustration. My son gets bad headaches with the fevers. We even had a MRI brain scan done to rule out brain cancer. One doctor said that test was not necessary, I disagree - just for the fact that it set my mind at ease. Basically, we're at a point that he's had just about every test possible (except the Mediterranean Traps Disease); and his body comes up 100% normal, but he continues to get the fevers. We hit our 5 year mark in August of 2008. Like you, I am totally open to suggestions or interested in hearing what anyone else has tried, what worked and what failed. Good luck!!

 
Old 01-17-2009, 05:27 PM   #4
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Re: Pfapa

Make sure that your child gets the DNA tests for Familial Fevers (Mediteranean & Hibernial). Additionally, we had to rule out rheumatoid arthritis, chrones disease, and cyclical neutropenia.
My 3 year old daughter has been diagnosed with it simply because we believe we have ruled everything else out and it is pretty much our last hope for a diagnosis. She does respond to Motrin, however in between her fevers shoot back up. Since so little research has been done on PFAPA it is hard to know how many children respond to the painkillers. My daughter will be getting her tonsils and adenoids out on Monday which has been shown to cure PFAPA in the few studies that have been done. We will soon know if it is the correct diagnosis. It seems that many doctors are starting to diagnose Pfapa without the approriate testing for other fever causing diseases. Be wary and don't be afraid to be pushy!

 
Old 01-18-2009, 07:36 AM   #5
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Re: Pfapa

This is way out there.... but has anyone noticed that on the onset of this whole fever situation, their child had strepp throat and/or mono?? Or has anyone had their child's spleen tested during fever episodes?? Being in year five of dealing with these fevers, we are trying to figure out all possible avenues we haven't touched on. When looking over the records I keep, I noticed that when this all started, my son initially had "strepp throat". He was put on an antiobiotic which didn't work, I brought him back to the pediatrician who said his spleen was enlarged and sometimes strepp and mono go hand in hand. He was tested positive for mono. I was told he needed to stay very low key so his spleen would not burst. After the weekend was over, I asked them to "re-check" his spleen because he was not showing any signs of mono whatsoever. Although, I know I can't argue with the blood test coming back positive. They agreed and let me bring him in again and said I was right, the mono had not just started, it was just ending. His spleen was fine. It was just really weird. Since then, like other kids dealing with these fever episodes, at times his throat will appear red or be somewhat sore during fever episodes, but strepp tests always come back negative.

I'm just wondering if anyone ever had their child's spleen tested?? Or am I just reaching w-a-y out there? I was just wondering if a spleen could actually be causing all of these symptoms that they have labeled "PHAPA" or "periodic fever syndrome"?? He just got over a fever episodes, but I was debating when the next one appears to take him in and question the spleen???

 
Old 01-20-2009, 01:14 PM   #6
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Re: Pfapa

Although the spleen is an important part of the immune system unless your child has another condition, such as congenital heart disease, it is unusual for the spleen to be the actual cause. However, it depends on your ethnic background as sickle-cell anemia (usually African-American) is one disease that would affect the spleen as would thalassemia (Mediterranean origin). By now your child should have had a CBC (complete blood count) done. If he is anemic I would suggest getting further tests done to determine the cause.

In fact, my 4 y.o. daughter was seen again yesterday and her physician is testing for thalassemia because of anemia although neither my husband or I are of mediterranean origin. I am also having her immunoglobulins checked along with a serum protein electrophoresis. If her test results are normal than I am definitely going to find an ENT who would be willing to perform a tonsillectomy and adenoidectomy as several medical articles I have read mentioned this a "cure". In fact, I moved in May and was discussing my daughter's case with a neighbor who stated her son was diagnosed with Periodic Fever Syndrome and since his tonsillectomy he has been fine. In fact, she had a copy of his labs and her journal regarding his symptoms which she allowed me to copy and it was remarkable the amount of similarities between the symptoms.

However, sometimes I believe she might have FMF instead of PFP because her chief complaint is abdominal pain. A CT scan of her abdomen/pelvis was normal so I feel somewhat relieved but these high fevers are frustrating. She does have urinary reflux which puts her at risk for UTIs but is already taking an antibiotic at night to prevent recurrence.

I think the most frustrating part is not knowing. If she had recurrent ear infections I could accept that. Well, for now I am just going to wait on these current tests.

 
Old 01-21-2009, 10:27 PM   #7
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Re: Pfapa

Thank you Krwalters for your reply! Very interesting! I know what you mean, its the "unknown" that drives you crazy. Can I ask..... does your neighbor's child still have the periodic fever syndrome?? If not, what were the signs that its coming to an end?? We were told my son's case would last 3 to 5 years, fade away and we would unfortunately probably never know why or how they started. We are at the point now, (over 5 years) that the duration between episodes is much longer, more like 6 weeks, and the fevers are no where near as high anymore. Usually around 101.5. (they used to be 105.0 the first three years, every 21 days.)

We went to an ENT recently, about 2 weeks ago. I had hopes it was something else that would have turned out to be so simple, but was wrong. He looked at my son's tonsils and said they are 100% fine and advised me to told off, he said he didn't really know what they would remove being that there was so little tissue which is what happens as you grow older. Although, he had never heard of periodic fever syndrome, either. I too have heard about the tonsil removal thing, I'm just having a hard time with that, being that his are 100% fine. I'm saving it for a "last resort." Which I am almost at!!! My son is Italian, Polish, Swedish and Norwegian. I didn't know if he really fell into the FMF; he basically only has fevers and headaches. How long has your daughter been dealing with this??

Being that this condition is suppose to be so rare, it amazes me how many people out there are dealing with this!! And yet, we all still know so little!! Take care and thanks for writing back.

 
Old 01-22-2009, 12:04 PM   #8
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Re: Pfapa

Dear Marley:

I went back and read your initial post. You said your son started at the age of 7. My daughter, who is 4 1/2 at present began with high fevers (102.5 to 104) about at the age of 18 months but then not always monthly. She also had a febrile UTI at the age of 7 months and some other odd illnesses in the last several years. I also have another daughter who recently turned 3 and is rarely sick and her highest fever ever was 101.8 (a one time reading).

Let me begin though by addressing my neighbor's son. He started at about age 3 with monthly fevers. He saw a pediatric infectious disease doctor and 2 different pediatricians. He was diagnosed with PFAPA and was given a note that he was not infectious however Mom consulted an ENT and he wanted to wait until after kindergarten to perform a T&A. Anyway, throughout kindergarten he was frequently sick and several times tested positive for strep. My neighbor states that he had a tonsillectomy & adenoidectomy this past summer and has been well since.

However, from what I could glean from your recent post is that the ENT did not think that your son (12 y.o. ??) needed a tonsillectomy. I'm sure this is very frustrating. I'm not sure I could make it 5 years.

I had never even heard of PFAPA or periodic fever syndrome until this past summer when I moved and just happened to meet my neighbor and mentioned my oldest daughter is sick all the time. That's when I discovered this diagnosis and began researching it. I also obtained a copy of ALL of her records and every diagnostic study she has had. I made up of worksheet on an Excel spreadsheet so I could document pertinent findings and basically everything that had been done up to that point. I have reviewed many articles on periodic fever syndromes and needless to say, most of them vary with regards to criteria for the diagnosis of PFAPA. In fact, one article states "It may occur in adolescents but onset in adults has not been reported".

I don't know what your son's tonsils look like but I've seen may children with large tonsils who never get sick so I don't think that the size of one's tonsils necessarily makes a difference.

If possible, I would consider trying to find out exactly what lab tests your son has had done up to this point. Also, in regards to periodic fever syndromes, it is best to have labs done during an episode. My daughter tends to run her highest fevers in the afternoon and late at night so usually I have her drawn in the afternoon. She has had elevated markers of inflammation during episodes. If your son has not had the following labs done already, perhaps you can ask your physician the next time he has an episode. From my research, the following labs are recommended: CBC with differential (some recommend a manual differential count), Serum ferritin level, SPEP, LDH, ESR, CRP, Alk Phosphatase. Also serum quantitative immunoglobulin levels are recommended if he hasn't had this done already. Additionally, what do his tonsils look like during an attack? It's true that in most cases the tonsils and adenoids will shrink as he gets older but that is not always the case. I also reviewed mine and my husband's family history. Although I was well as a child, my husband was frequently sick until he had a tonsillectomy at the age of 4 and his father was sick frequently throughout the years until he had a tonsillectomy as a teenager. In fact, my father frequently had colds and sore throats until the age of 28 when he had a tonsillectomy. Remember, rapid strep tests weren't available back then and the criteria for a tonsillectomy was not as strict. If in doubt, seek another opinion. Hope this helps!

Last edited by moderator2; 02-06-2009 at 03:34 PM. Reason: please review the posting rules

 
Old 01-23-2009, 08:05 PM   #9
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Re: Pfapa

Yes, your reply was a big help I actually just ordered a copy of his whole file, since birth, and just picked it up tonight!

He's been seen by the same pediatrician since birth, two infectious disease specialists, a pediatric specialist that specializes in difficult cases thru Childrens Memorial in Chicago (he actually gets 10 - 15 cases of year from all over the country), two ENT's, his eye doctor who did tests taking pictures thru the optic nerve of behind the eye and between the brain, he's had an MRI scan done to rule out brain cancer, he's had multiple, multiple CBC tests. He's been seen by an opthomologist and the dentist. We've monitored his fevers taking his temperature every morning and every night for 3 months, we had complete blood workups done every other day for one week prior to the fever, one week DURING the fever (yes, dragging him in there while it was 104.0!!), and one week after the fever. Oh boy, I know I'm forgetting someone or something!

Every test comes back that his body is 100% normal. Even the specialist who has actually dealt with periodic fever syndrome (the guy from Childrens Memorial) said he would not be offended if I seeked other advice.

Here's where I stand now... tell me what you think...... I'm preparing a letter that I am going to ask family to pass around to distant relatives that perhaps we don't even speak with or know well. I'm going to cover my mother and father's side and my husband's mother and father's side. Asking if ANYONE knows of ANYONE having this or had this.

Next, I plan on preparing packets with all of his info (that's why I requested a copy of his entire file, even though I've kept records of EVERYTHING, I'm going to incorporate all my other records with his main pediatrician's records) and mail them off to perhaps the Mayo Clinic, University of Chicago, St. Jude's for Children's Hospital, that tv show "The Doctors", absolutely anyone I can think of in hopes that SOMEONE will reply with some idea!

Every time he has an episode, we write EVERYTHING down. I write all of the symptoms he's feeling, his temperature every time we check it, when and how much medicine was given, if he missed school, you name it.

I've actually talked to three people who told me that their child had this when they were small. (These children now being in their 30's) and was told every time that it lasted about 5 years, and eventually faded away, and they never did find out why it started in the first place, or what caused them. Its frustrating for us because it was 5 years Aug. of 2008. So we are over the 5 year mark, its scary! Now the symptoms pretty much are headaches and fevers, but the fevers are not that high anymore. Usually about 101.5; his normal body temp being 97.4.

What do you think of the new approach we're thinking?? Out of all of the doctors we've seen, no one can think of any test we haven't done yet. On most of his blood tests tho, the only thing that was not 100% normal was his "neutrophils", they were slightly elevated. The doctor's were not concerned with cyclic neutropenia though.

Now that I have his records all in order, I want to go thru and look up on all of the lab works, the items you mentioned. Maybe something is slipping thru that the doctors are not seeing. I'm sure they are not taking my son's file home and reviewing it like I am, unfortunately.

If you were in our situation, would you remove the tonsils of a 12 year old boy if everyone's telling you they are fine, and its a gamble to see if it would work? What are the advantages and disadvantages of taking them out?

I really appreciate you answering, and I feel for your situation as well!! Your daughter is in my prayers too!!

 
Old 01-24-2009, 08:23 AM   #10
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Re: Pfapa

Hi My name is Tiffany- I replied in a different thread a few months ago about my daughter Mikala she is 8. Her symptoms started at 18 months and were present a lot for about 2 years. Her ped. said she was just having lots of viral infections. The episodes went down to 2 - 3 a year until 8 Months ago and they started up strong again with more symptoms adding on. I was not documenting until last June. I have noticed that she is getting other illness's now. She had mono the beginning of last school year and she had an enlarged spleen also. She was in the hospital this last November with pneumonia. And now we went to see a ped. infectious disease doctor at the children's hospital in the cities and she found CMV a virus in Mikala's urine. The doctor said it is a common virus that about 90% of the population gets, but most people do not present any symptoms. It can stay in the body for up to four months. She think that is why Mikala has been more sick lately. All other test have been coming back normal or I here the word fairly normal. When she is sick her inflammation count is high. I am going to ask for a copy of her medical records since birth and go through it closely to. I am concerned she is now getting these "secondary conditions" and the doctors seem to think nothing of it. The Infectious Disease Doctor saw Mikala when she was not having an episode of the fever and pain and I feel she is not taking us serious. She thinks that when the CMV is gone Mikala will be fine back to "normal" I asked her why Mikala has been sick off and on for 8 months and she said Mikala just must have had a mild virus, then picked the pneumonia then the CMV all right in a row. Has anyone else had other sickness with the episodes?

 
Old 01-26-2009, 02:42 PM   #11
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Re: Pfapa

Tiff/Marley, etc.

I don't check my email on the weekends as I don't have Internet access at home. With regards to the CMV, I have to look into that. I think most importantly, a thorough history is important. Technically, I have read that 80% of diagnosis is based on history and in my own practice I find this to be true. When it comes to children, I think alot of practitioners provide reassurance if nothing obvious is found. However, it is the psychological damage that can be done that I worry about. The other night my daughter was having a nightmare, yelling "No more pokeys (her term for needlesticks)". Despite using EMLA cream before getting her blood drawn, she is terrified of needles. Also her 3 y.o. sister has been remarkably well but tends to "act out" every time her 4 1/2 y.o. sister is sick. I do believe that in PFAPA there is no long term consequence to one's health but it's still hard to accept it as a diagnosis as there is no actual test for it and the criteria changes based on the author.

If you have access to your child's chart, look and see what the diagnosis have been throughout the years. Even if the WBC is normal, was the absolute neutrophil count high? I am trying to do some more review of the medical literature and there is a snow storm heading our way so I might not be in for a couple days. I will keep posting.

 
Old 02-05-2009, 07:27 PM   #12
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Re: Pfapa

KRWalters

I requested a copy of my daughters medical record since birth. Signed the consent form and received a small packet in the mail of about 4 office visits 2 lab work sheets and doctor dictations from last November to now. Do you know what I need to do to get all of her record? Do I ask for a copy of her complete file? Does it make a difference asking for her file vs. her record? We moved three years ago. Do I need to call our old clinic to get the complete record of her first five years? I would appreciate any feed back. I am getting nervous about her getting these "secondary conditions" of mono, pneumonia, and CMV. The doctors are not confirming PFAPA but they are not leaving it out of the picture. She has been symptom free for the last month. She is not on a regular schedule so it is also hard not knowing when she is going to get so sick again.Thanks for all your input.
Tiffany

 
Old 02-06-2009, 08:59 AM   #13
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Re: Pfapa

Hello everyone! It has been awhile since we have been on here. What a rough few weeks it has been. First of all tiff76, you will have to request a copy of your child's records from every doctor that she has been to. This is a real pain. Also, as far as genetic testing goes, my daughter's oncologist/hematologist told us that there is a form of the Mediterranean fever that affects only those with a high amount of Scandinavian blood (TRAPS???). I have also heard stories of people having no idea that they had Mediterranean blood actually testing positive for the fever. I would get the testing even if you don't believe it is applicable just to rule it out. Also, my daughter's tonsils ALWAYS looked normal and in the few clinical trials that have been done this was often the case.

My 3 1/2 year old daughter had her an adenotonsillectomy on January 19th. We have to wait to see if this cures her fevers. We should know very soon since they are monthly fevers. I pushed the oncologist and pediatrician extremely hard for this after doing lots of internet research. My doctors agreed since we had no other options after doing every blood test available for 2 years. They then referred me to an ENT with the recommendation for the tonsillectomy. I brought the ENT all the information I could find on the internet about Pfapa and without reading it he agreed to do the surgery based on the recommendation of the other two doctors. Don't take the surgery lightly though. I have heard many stories about kids being back to normal the same day of the surgery. My daughter was not like this. We were sent home after the surgery, but had to return the next morning. She was extremely dehydrated because she wouldn't drink (in fact she wouldn't even swallow her spit) and in a lot of pain. We ended up having to spend 4 days in the hospital on morphine, fluids and steroids. If this worked to cure the fevers it is well worth it. It is hard to watch such a little child in misery so often. I will let you know if it cures her fevers. We can only wait and pray! I'll say this again too, don't take no for an answer with the doctors. Be pushy (but not rude)!

 
Old 02-06-2009, 04:57 PM   #14
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Re: Pfapa

Many of the symptoms here are very familiar to one's I’ve seen on a number of boards, depending on which symptom was the most “dominant”.

There is a condition that would explain many of the symptoms your children are experiencing…it often starts out as the “cold” or the “flu” with chills, fever, headache, lethargy, and/or muscular pain. But unlike colds or the flu, there are usually no respiratory symptoms…at least initially. Symptoms can ebb and wane but fevers often are chronic and it is not uncommon for them to recur on a regular basis, or every 3-4 weeks. From what I understand, the reason they recur, in part, is dependent on the life cycle of the germ/parasite/protozoa/bacteria that is causing the infection. Of course the child’s immune system and other factors would impact the timing as well. I would also mention that these symptoms can disappear on their own and go into dormancy for days/months/years/decades only to emerge at times of stress or illness. Left untreated, the condition can deteriorate and different symptoms can occur but most people don’t connect them to that “cold” or “flu” bug they had weeks/months/years ago. Symptoms of arthritis, joint inflammation, memory problems, mood changes, and sleep problems may develop as well as symptoms affecting the senses, nerves, etc.

Sometimes these symptoms get better after antibiotic treatment for another condition…sometimes the symptoms (or new ones) appear to get worse after antibiotic treatment (this is the herxheimer reaction)…but in both cases, the response suggests the antibiotics are doing their jobs!

Sometimes steroids are given to treat the symptoms and often in cases like these, despite a short improvement, symptoms can quickly escalate in duration and in intensity. This is because steroids suppress the immune system which is trying to fight the infection(s) in the body.

This condition is causes by one or more infections that are very, very difficult to diagnose…but if caught “early” easy to treat. Only one laboratory in this country has tests sophisticated enough to test the many variations…and even then, there are many false positives and many false negatives. For that reason, the government and international (yes, this is a world wide problem) specialists advise treating the symptoms even if the tests are inconclusive.

This disease can be acquired a number of ways...through the blood of a placenta (an infected pregnant woman), theoretically through a blood transfusion (although it has not been proven as yet), some coinfections may be transferred sexually (hopefully this would not be the case for a child), and some can be transmitted through a variety of insects, primarily a number of different ticks, fleas, and flies. Because children often play outdoors, they are at high risk for acquiring this disease and/or its coinfections.

The disease is Lyme Disease (and its coinfections) and it is running rampant in some areas in our country…although it has reached epidemic proporations in the parts of the Midwest and along the NE states, it can be found in every state in the union.

More can be found on the following sites:


<a href="http://www.healthboards.com/boards/showthread.php?t=69543">Lyme Disease Information</a>

[url]http://www.nlm.nih.gov/medlineplus/ency/article/001319.htm[/url]

Please note that the administration of steroids for another condition may put a child with undiagnosed Lyme in jeopardy. Lyme patients who have received steroid treatment sometimes deteriorate rapidly, and sometimes die…so please oh please be an informed parent.

Last edited by bethsheba; 02-06-2009 at 05:00 PM.

 
Old 02-06-2009, 06:40 PM   #15
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Re: Pfapa

First of all, I have to say it has been great corresponding with you all! I've never tried this resource before... message boards.... but I feel with communicating with others and find out tests they've done, or sharing tests we've done. It really helps you think of new avenues you haven't tried yourself! So thank you!!

One asked about obtaining records. Each year, I buy a thick family planner. (its our life!!) I make sure there is plenty of room for writing under each page. Besides the every day stuff, appointments, etc... I also records EVERYTHING when my son has his fevers. I record on each day of his occurrences every time I check his fever, what the temperature was, when we gave medicine and how much and of what medicine we gave. I also record all of the symptoms he's feeling on that particulay day, if he's eating, etc.. This has become very helpful. Next I save them every year so I have something to look back on now.

I would suggest always asking for copies of lab reports, or any tests results, literally ANYTHING when you go to any doctor. Scans, x-rays can be put on a cd as well, upon request. But what is helpful about ordering a copy of your child's medical file is then you get all of the doctor's notes. I requested a copy of my son's file, I said I wanted everything from the date he was born until present. I also explained to the nurse when requesting it, that it has nothing to do with the doctor, and I do not plan on switching pediatricians or anything, but explained my son's rare condition and that I want to review everything and see if I could get someone to look at the file and perhaps with a "fresh" eye, see if anything pops out at them that perhaps we haven't tried yet. When I got a copy of his file, it was very beneficial seeing the doctor's point of view in writing after each visit. But I agree with another posts, you have to do that with each physician your child has been seen by. Compile it all together.

Since this condition with my son, I have been requesting records on my kids (all of them) and keep them filed. I just tell the nurses that I like to keep accurate records at home, so someday when they are adults, they will have accurate records of their own health. Ex: My husband never knew if he had chicken pox as a child, and both of his parents are passed away. When our children were in pre-school, they were coming home with notes telling us they were "exposed". I was afraid to have my husband by the school until we finally went and got him vaccinated. Just another reason why its good to always have records about everything. Also, I never thought in the beginning it would be important to record every cold, but after going thru this with my son. I record EVERYTHING on EACH child. Also, because with 3 kids, our lives get so hectic sometimes, I find if I write everything down, there is no chance of an overdose, second guessing when they had their medicine last. Everyone in our family knows, it is always written down ..... in "the book"!!!

Hope this helps!!

 
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