Question for Deanna

Hi Deanna,

I wanted to ask you what makes you think that Devyn's count is improved by having a fever.

Dougie is now bruise and spot free (wayhay!!!!) 1 week after having been covered in them. His count was 29 on Monday, but apart from the old bruises, his skin looks totally normal now and I think his count is a LOT higher. He's only been ill with a temperature twice since he got ITP and both times seem to have been followed by a big improvement in counts. It might just be coincidence, but I don't think it is.

His doctor didn't believe me when I said that I thought his count would go up because of the fever - in fact he even told me that illnesses make ITP worse. BUT, I am convinced that a high temperature does somehow reset Dougie's system. I am just hoping that this improvement lasts as long as the last time. You said that you thought that Devyn's high count last time was a result of his illness/temperature the week before - have you ever noticed that before?

Wouldn't it be good if we could just recreate this effect without the illness and temperature coming first!!!!

Ali

Ali - it is thought that for some people, an illness distracts the immune system from destroying platelets because it is busy fighting the infection/virus. That is the easy explanation. I'm sure the technical one is much more involved.

My son was diagnosed in 2002 and has chronic ITP. After a couple years of really low counts (single digits) his counts started going up with certain illnesses. We saw this with ear infections, strep, and the flu. The doctors usually dismissed it as coincidence, but I am sure it was not coincidence. His count would stay up or week to two, just as if he had a treatment. The common cold always made his count go down. Lots of other parents of chronic kids have reported the same sort of thing.

Wesley had really low counts for about 2 and 1/2 years. He had Winrho about 30 times,IVIG 3 times, IV steroids twice and we watched and waited when he stopped responding. He was given the label severe, chronic and refractory. When he stated kindergarten, his counts started going up on their own. His counts bounced all over the place for another 3 or 4 year. He has had near normal counts about three years now. Near normal is really good!!!! I haven't seen any ITP symptoms in years.

Cathy (Mom to Wesley 11 - diagnosed 4/2002)

Hi Ali,

Before Devyn had his fever his counts were probably good because i only saw a couple unknown bruises but i was shocked to see that his counts were over 200,000. I though for sure that the fever would bring him down because usually illness makes his counts drop.

We are due for a CBC in the next week or so.....although Devyn has been exposed to the chicken poxs so we are waiting to see if he gets them so we may wait to get that CBC done.

He has only had a fever once before with ITP and if i recall correctly his counts went up that time as well.....but like i said many ilnesses have brought him down, last year at this time he got the stomach flu and his counts dropped the lowest we have ever seen them and his little body just couldnt get back to safer numbers so that is when he had his second IVIG treatment

I would not be surprised at all if Dougie's counts are up.....I will keep my finger crossed

Deanna

Thanks for the replies people.

Whatever the cause (and I am totally convinced it was the illness) I am loving the result! No bruises, no rash, no nothing. Not booked in for another test until May, but he looks like he did the last time his counts were in the 100s. And if it is like the last time, he's going to have a good few months of higher counts to look forward to.

I've told that if/when his counts take a nose dive again, we are going to go out in search of a sick person!!!!!

Ali

Ali,
That happens for Tim too. And then a few weeks later he has a drop. The hemonc says its because during an illness the immune system is distracted by the virus or bacteria. Instead of concentrating all effort on the platelets, now the effort is divided between the illness and the platelets, so there is less destruction.

Hope that helps. I don't know why your hemonc says its not a factor.

Ali,
Hooray that Dougie's counts are back up again
I remember being so glad when Camden got the H1N1 swine flu a few months after his ITP diagnosis and we were praying his numbers would stay in the 200,000+range-I think he did get a 6 week stretch out of it. His pediatrician is convinced that Camden's pattern is sickness=higher platelets and that he can should reserve a seat in the waiting room for germ exposure should he start to dive.
With spring upon us, good numbers for outdoor fun=happy moms!
Take Care!
LaMonica
mom to Camden (10yrs) dx 6/2009

To All Moms,

There is quite a bit of research out there that suggests that the important thing to consider with a fever or with one of the eruptive diseases, such as chicken pox, measles or rubella (which usually also have fever), is that the body should be allowed to have the fever naturally. When the fever is suppressed, that is when complications arise.
Fevers can be suppressed with Aspirin, Tylenol, Ibuprofen, Motrin, etc. Note that many OTC drugs contain acetaminophen as an ingredient. (Acetaminophen poisoning is the main cause of liver damage these days, as many times, multiple products containing it are given at one time, resulting in an overdose.) Even mechanically reducing a fever, such as with alcohol rubs or cool baths is not advised, as these also suppress the fever (besides usually being quite disliked by most kids!). Even fever-reducing herbs are not a good idea. Fever is a healthy function of the body, and should not be feared. Only in cases of drug poisoning or heat stroke would we want to reduce it.

Just allowing the child to have the fever naturally, or assisting the body to deal with it with homeopathic remedies, which work with the body, not against it, will let the body do it's work efficiently.
Our bodies have innate wisdom--we get into trouble when we start thinking we know better than it.
When fever or eruptions are suppressed, the disease is driven into deeper, more important organs of the body, and that's when you suddenly end up with more serious diseases like ITP, Autism, Rheumatoid Arthritis and other Autoimmune.

I think this may account for some of the disparity we see when ITPers get ill-some get increased counts, others counts tank. It would be interesting to know whether or not any fever-reducers were given, and how that seems to correlate with the resulting counts.

This would also apply to vaccines, which commonly stimulate a fever--and, what's given? A fever reducer. Could this be why some see a drop in counts after a vaccine-maybe it's not the vaccine itself, but rather the body is not allowed to have the fever, and so the disease is held in the body, rather than being expelled to the outside? It's been noted by both researchers and parents of autistic children, that high fevers often cause a sharp improvement in their autistic symptoms. I wonder if the same might apply to ITP patients?

The same thing happens when eruptions are suppressed, whether with Benadryl for hives, or using hydrocortisone creams on eczema. Again, the disease is driven in deeper. This is why we almost always see asthmatics have a history of eczema. When an embryo is formed, there are 12 stem cells, from which all the other cells of the body arise. It's interesting to note that the skin and the lungs are formed from the same stem cell, so there is a relation between them. When skin eruptions are suppressed, the disease is pushed into the lungs, and voila! Now we have asthma!

Bottom line--suppression of fever or eruptions is a no-no.

Thanks for all the input. I have yet to figure this ITP out. Our son has Di George Syndrome, ITP is completely opposite of the Di George Syndrome. Our son has had 3 times in 1 year, levels at 3, 2 and then 7 last week. One doctor seems to think viruses are getting worse because they had a 13 year old girl and 15 year old boy in hospital same time as our son. They had never been diagnosed, with ITP and caught cold around same time as our son. It frustrates me because every time our child gets sick I watch like a hawk, never knowing which one will be fine or ITP. IT makes me feel a little better hearing that fevers seem to help. We went to hospital and stayed night for Cole’s ITP and came back with something awful!!! Influenza A. Fevers non stop. Our 2 year old got bronchitis in 1 day, Cole now has Croup. It will be interesting to see if no ITP from this, but he got ITP from a cold he fought for a couple weeks? I am confused. I do not give Tylenol all the time (stay away from Ib profin because of the ITP). He gets fevers and fights through them, he is tired of taking meds, a complete battle. I try to give, but he fights me, so I watch.

April interesting information. Eczema, always around us, thanks for more understanding I knew it was a sign of food allergies also. At one Cole tested positive to soy, dairy, wheat, egg white, and nuts. His skin and GI system took a beating until we finally narrowed it down and took out of his diet. He is doing much better now, just nuts, we will wait to rule out at 7 (per Allergist).

ITP has me so confused. Our son has had so many other issues, heart surgery, severe reflux, food allergies, hearing issues, Di George Syndrome, this is one more thing on the list. Thanks for all your thoughts. His numbers are up right now, and praying they stay up, but he is having fevers, chills, getting very sick fast like we all did.

Hmmmm. Dougie had a high temperature for about two days and was noticeably feverish for one - shivering one minute and too hot the next. He had two lots of paracetemol in that time. So it was partially suppressed but not totally. I am not a great giver of medicine and he isn't a great taker of it, but I think it is justified sometimes.

La Monica, Donna, Deanna and Cathy - you've confirmed my suspicion that I probably know more about ITP now than the paediatrician does! Its good to know that the connection is not just a figment of my imagination. We might be joining you and Camden in the doctor's waiting room La Monica! A slight illness every couple of months would probably do the trick for Dougie. How is Camden doing anyway?

Hey Ali!,
Camden is doing fine-48,000 today His numbers have been between 30-50,000 allowing him some freedom outside from me with his bike and basketball! He has had some nose bleeds and bruises, but nothing serious. There are so many germs and sick kids in his classroom he is bound to stay up until the summer