Teen daughter diagnosed with ITP Aug.4th

My daughter was diagnosed with ITP on Aug. 4th this year....up until that point she has been my healthy child....she has a twin sister who has Autism/Epilepsy....and her older sister had heart surgery at 12 years old....no smoking, drinking, drugs....but...a Gulf War Vet...and concerned about the vaccinations....
My daughter came to me last week...after missing her first week of her new school..an arts school...where she had to audtion to get in....she passed....now...she has requested home schooling due to being exhausted....i feel like since the IV/IG...that she has been in a state of "zombiness"...is this normal? she also has body aches...knees and below...and wrists...any thoughts?? tku for your time!!!

Hi
To the question you pose is this normal. One thing I have learned through reading other people's posts that what happens to one person doesn't necessarily happen to another. We each have our own set of symptoms and reactions to treatment.

I myself at 25 year old was diagnosed with Idiopathic Thrombocytopenia Purpula. And to cut my story short to help you I have IVIG and Steroids and been fine. But my case seems quite different to otheres on here.

I hope someone will respond. Tiredness is a definate symptom and we all seem to experience it with varying degrees of severity. I hope there would be some way you could get an interview with the head of the school and explain what is happening so she gets to keep her place and go on the days she is stronger etc. They may be willing to make allowances. They cannot do anything if you dont' chat to them.

Any symptoms, my advice would be to ask the haemo but am aware that seems to be costly in the States. I am English and our health system is so different that I can ring my Haemo office right now - its 7pm in England now, and get a human voice to speak to about things. It seems so different in USA for all of that.

Hi LoriAnn,

Were her aches and pains present before IVIG? If so, (not to frighten you) but has anyone mentioned Lupus? I was diagnosed in January this year; I had aches and swelling in my wrists, hands, and feet joints. This persisted for 3 months until my platelets quickly dropped from ~200 to 100, then 50, then 8. When I was admitted with the result of 8K, a rheumatologist visited me and ordered a bunch of blood work to check for lupus-specific antibodies. This was the only way to determine what was really going on. She should definitely bring up the aches and pains with her physician as soon as possible.

I had IVIG and was tired afterward, but no aches and pains.

The only other symptoms for my lupus was Reynauds (hands get cold in the slightest of cold weather), and fatigue. ITP is associated with Lupus, and it often occurs in young women.


I hope she feels better and can resume studies soon!

Lori:

I wouldn't say that is normal for ITP or IVIG. If she had been on steroids, I would say that was a factor.

Lupus is a possibility, but there may also be other reasons. Maybe she has several low Vitamin levels (a lot of us do) or she has other autoimmune processes going on. If it persists, I'd suggest having her GP do further testing or see a Rheumatologist.

Dear Loriann,

When my daughter would get IVIG, it had a horrible effect on her. She was 12 at the time, and she would feel so bad after each one, exhausted and aching, bad headaches, very touchy and irritable. She didn't have joint pains, but it would seem to be more in her muscles, and just generally feeling bad, like having a virus or something. She wouldn't want to do anything. It seemed to make her mind very dull, too. How often has your daughter had IVIG? Now, I don't really know if that was just from the IVIG (she was getting weekly infusions of it), or if perhaps it was just what happens when the platelets are so low? Maybe was a combination, but she would always have 2 or 3 really awful days, immediately after each IVIG. Once we found a good homeopathic remedy for her, it cured the ITP (It's been 6 1/2 years now), but the moodiness, achiness and fatigue also went away, within a few hours.

I was also wondering what you meant when you said:
"no smoking, drinking, drugs....but...a Gulf War Vet...and concerned about the vaccinations...."
How old is your daughter? Is she the Gulf War vet? What vaccinations has she had recently? The military is so heavily vaccinated. Many of these could indeed cause problems, may have been responsible for the ITP in the first place. The MMR vaccine in particular is thought to have caused ITP in many children. You have to consider, too, that many vaccines are put into use, long before there have been any longterm studies on them. This was the case with last year's Swine flu vaccine. Homeopaths have had good results with helping to reverse these bad reactions of vaccines. That's largely why they've been so successful at helping autistic children that have been vaccine damaged.

Good luck with your daughter,
April

Hi Loriann--

My daughter was diagnosed w/ITP at 14, just as she entered high school--a performing arts HS! Fatigue was a major side-effect of ITP for her--and she had to catch the bus at 6 a.m., then stay after school for swim team practice. Wiped out? Definitely! To the point of not wanting to do much of anything else, even on weekends. She was also on steroid pulses, so it was hard to tell how much was related to what.

Caitlin's IVIG experience was early in her ITP treatment, and really, it didn't work well for her. She was being medicated with other things at the same time, so we don't know if the headaches she was having was due to low iron, hormones, being short 2 pints in the blood dept, or the IVIG--but she didn't have the migraine-like symptoms I've read can happen after IVIG. Premeds before, and steroids afterward have helped many IVIG-ers.

I take it you or your husband are the Gulf War Vet? (THANK YOU for your service!)I have never seen any issue with a child developing ITP as a result of vaccines their parents have had. Some seem to have developed ITP after ther OWN vaccinations, though!

Body aches were not on our list until Caitlin had Rituxan, but they were mostly in her legs. Caitlin had special permission to leave class a few minutes early, so she could avoid the crush (and bruising) in the halls. Your daughter worked hard to win her spot--encourage her to hold onto it awhile longer, because a different treatment may leave her feeling much more able to tackle her classes. You may want to look into the possibility of taking some classes over the internet (we have Florida virtual school) because they can be done pretty much on her schedule. Maybe keep her toe in the water by taking one or two performance classes, the rest online and see how it goes? Who knows--they may be so intriguing she decides she can stay awake! What is her area? Dance would definitely be harder than the creative writing Caitlin was in!

Hope your zombie wakens soon! Ann, Caitlin's (23) Mom

Thankyou!!! I called her Hematologist yesterday and asked about Lupus...She stated that her ANA test came back Negative which rules out Lupus among other issues....I was relieved...My daughter is still exhausted and it is so frustrating to see her go thru this...I am trying to get her back into the swing of things....Our docs don't see fatigue truly as a sign of ITP...gonna send them some of the pamphlets...tku for your support!!!

Tku!! I will do that as well!! Her docs did say that in 20 years they have only seen about 2-3 kids who have fatigue and they don't factor fatigue in with ITP and they are looking into everything and keeping a close eye on her to make sure nothing else comes up! I have been quite impressed with how open and willing to take phone calls they have been with me. I have a child (khandy's twin) who has Autism/Epilepsy...so...I do researach and I don't believe everything I see...but..it helps to hear others who are going thru the same thing!! Tku!!

Dear April,
Good afternoon! No...I am the Gulf War Vet...and when I made a statement about drinking, drugs, smoking...I meant me...I feel like I have always been pretty good about being chemical free....yet...all 3 of my girls have had issues...the oldest had SVT and had heart surgery at 12...the twins...one with Autism/Epilepsy...and now her twin sister with the ITP....I am convinced the meds/vaccs in the military, the environment, vaccinations, and compromised immune systems have everything to do with this. Please let me know what we can do naturally for the ITP. We are in the process of fund raising to get my girls to a dr in New York who specializes in the Autism, Allergies, Asthma and ADHD....this is thru detoxing and vitamin supplements..diet..the gluten/casein free diet...etc....I am not one to put my kids on meds...for it seems to have horrible adverse reactions...
and...Khandy had a horrible reaction to the IV/IG in the hospital...halfway thru they had to stop it because she was vomiting and severe headaches and fever...and chills...it was terrifying to watch. The headache went away after about 10 days...they stated she had the Aseptic Menigitis...and than she got Cellulitis from the IV...this is from a child who never gets sick...she was my healthy one...
It has now been about 4.5 weeks after IV/IG and she still is exhausted...irritable and gets headaches on/off...also with aches/pains on/off....I would love to hear from you!! Tku and God bless!!!

Good afternoon!!! My daughter too is enrolled in the Arts Academy...arts school..and she auditioned with her writing...That is awesome that both girls have the same interests! Our docs aren't to concerned about fatigue being a part of ITP...feels like they are kind of blowing us off....even though they have been great...they have only seen a few kids with fatigue in 20-30 years of experience. My daughter sleeps about 10 hours a night and still is wipe out most of the day...At the present she is going back to online school and we are going to see about getting her into clubs...she does have to go next week for a few days to the Arts School...and a part of me hopes that this will encourage and motivate her to stay there!! She feels so isolated!! She worries that people think she is making up the fatigue....none of us do!!! She is never sick....well...until a month before she was diagnosed with ITP...than I thought the fatigue was due to stress from 7th grade...I had no idea!!! She is so strong and I am praying and hoping for the best!! It just is hard to see her go thru this!! Tku and God bless!!!

Loriann,

Please, please, get in touch with April. She was able to help us so quickly with our son. Inspite of nothing else working, homeopathy did work for us. My DS is now recovering well. Not just his ITP, but also his food allergies and other health issues he has had his whole life (largely vaccine induced). It is amazing for me to watch him begin eating things he hasn't been able to touch for quite some time. I KNOW she can help you. You can message her via this board by clicking on her profile. Yes, there IS a natural way to cure ITP. And you can CURE it - inspite of everyone saying it's a "remission." And yes! Fatigue is so real with ITP. My son was exhausted - even when he didn't want to admit it.

Blessings,

patti

Dear Loriann,

The natural treatment I used for my daughter, and now with a number of other ITP patients, was the 200 year old form of medicine called Homeopathy. As we've all seen and heard, time and again, 'every patient is different, will have different symptoms, and different treatments will work for each'. That is one of the main differences between homeopathy and conventional medicine. Homeopaths are always looking for the unique and defining characteristics of the patient, rather than the disease, and so each patient gets an individualized remedy to suit them, not the disease. This is actually a pretty ancient and profound thought:

“It is more important to know what sort of person has a disease than to know what sort of disease a person has.” -Hippocrates

I've written quite a bit about it on the Original forum. You can read a lot about it in the Natural Treatments section there, under the thread, "Homeopathic Doctor". My daughter's story is also there:
discuss.pdsa.org/topic.asp?TOPIC_ID=23985&whichpage=1


She just recently turned 19. I always look at her birthday as a reminder of the miracles that God can show us. It was six years ago on her 13th birthday, that we nearly lost her to an anaphylactic shock reaction to IVIG. It is also the beginning of her healing with the right homeopathic remedy. Her counts went from 11k to 411k in 4 days.

And, as Patti has found with her son, "cure" implies so much more than the absence of low platelets. It is health on every level, in every area of one's life -- even things that have always been labeled 'incurable', perceptions and life-shattering events that you might think you could never get over, could never change...well, you might be surprised.

I am continuing to see good results in ITP patients who come for constitutional treatment. So, don't get too discouraged. I live in a major military town (San Diego), which is also a major medical research city. Over the years I've seen ads for research studies of military members whose kids have developed vaccinia, after their parents got the smallpox vaccine. So, obviously, others are aware of some of the dangers of the vaccines affecting the children. I've seen numerous military kids in my practice that come in with horrible eczemas, seizure disorders and asthmas and a LOT of kids on the autism spectrum! One of the autism groups I was asked to speak at, the moderator claimed that the rate of autism in their area was 1 out of 16 in military kids!! I live very near military housing, and every single day I see so many of these obviously damaged kids in the grocery stores, the schools and the playgrounds. It is a tragic and disturbing thing to see, especially since so few of these families are getting any adequate services. Even if they are, it is all so senseless and shameful that innocent lives are being damaged like this, yet the lies about the safety and effectiveness and necessity for vaccines, continues...


April

Have you had your daughter tested for tick diseases such as anaplasmosis and Lyme? Anaplasmosis can trigger the ITP (it did for my daughter) and Lyme could explain the aching joints. I just posted in the Lyme/ITP thread a bit more about my daughter's history.

My daughter has what I call "recurrent acute ITP", meaning her counts return to normal between triggers. Only twice has it been bad enough for IViG. She too had aseptic meningitis the first time but the second time it went better with more pre & post medication. But it wiped her out for at least a week or two, exhaustion wise.

Each time she has a bout of ITP I see an extreme change in her personality. Extreme exhaustion and grouchiness precede the petechia by about 12 hours.

Even when she has normal platelet counts, I see her needing more sleep than my other kids. But there's no truly actionable symptoms, it is just the way she is.

She's in college now (this started when she was 12). She currently has her first away-from-home head cold. We're hoping her ITP stays dormant but who knows what shall happen.

Hang in there!

hi, i just wanted to mention that i feel tired and have aches in my legs & knees too..my hemo did all tests n everything was normal.she said its not related to ITP, may be early case of arthritis..my leg hurt wen i try to sit down.wen i sit down to reach somethin 4rm lower rack in fridge my knees & legs hurt.never had any treatment for ITP.really hope ur daughter feels better..i'm from india where homeopathy is used frequently with good results.i like to mention something though, make sure you are going to a good homepathic doctor..