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Best advice for parents and ans to questions?

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10 years 10 months ago #36365 by runnershirl
I'm curious what other pieces of "advice" or "observations" other parents have learned from trial and error that would be worthy of sharing with others?

Our story: 3yr old diagnosed 6 months ago with ITP with original counts of 4k. After 4 days in hospital (to my surprise, very little other testing was done on her), she had one petechiae and significant bruising, purpura in mouth and respiratory illness. IVIG raised levels to 400! After IVIG, she complained of chest pain, bubbles in chest, leg pain, was extremely irritable and more needy than normal. And, of course, regressed in areas such as sleeping in her own bed, and potty training. Four weeks later, bruising returned. The last 6 mos have been that yoyo we all know. Two weeks ago she had nosebleeds and it took us several days to get labs done with a 2nd opinion childrens hosp we were working with, and eventually were sent to a walkin clinic. by then symptoms faded and her labs were 100ish. One week later, she was scheudled for yearly exam and received nasal mist style flu vaccine (and pediatrician said she could receive despite ivig)...Three days later, mucousy nosebleeds, lots of petechia, extreme irritability, bruising, etc. Her platelets dropped to 9k, and she was administered IVIG#2. Now, once again complaining of foot pain, bubbles in chest, groin lymph node pain (and it's pink there), irritability, hair hurting, etc. (Am I the only one who is frustrated by knowing so very little about the product being administered to her?)

Here are a few of my questions--if any of you have answers:

1) IVIG - Interested on FDA feedback, long term effects, any recalls, alternatives to IVIG that work as well?

2) Who are the most well renowned drs in the field of ITP?

3) Best tests to rule out other conditions, and why doesn't anyone want to do anything more?

4) What does it mean to have a platelet antibody?

5) What natural dietary or homeopathic changes has anyone tried and found beneficial? (on that note, I have noticed my daughter's platelets raise after Reiki energy healing treatments.)

6) Daughter LOVES yogurt...any found correlation between that bacteria?

7) Flu vaccine safe or unsafe for ITP. Safe or unsafe for recipients of IVIG?

8) Any knowledge whether stem cell blood can be used for treatment of ITP?

9) What medications do ITP people need to avoid?

10) If this goes chronic, I'm interested to know parameters other parents may have given their little ones re: sports, life evetns, etc. and whether kids developed phobias of hospitals, and advice on how to minimize that?

11) How do caregivers survive...by that I mean literally? I started a new job when this diagnosis occurred, and while I'm a very tenured professional, one can only miss so much time from work. Hubby is disabled due to chronic migraines adn spinal issues so I'm often doing this alone...ARE there any organizations out there to help parents in this situation? And what about if I do indeed lose my job? Trying to hold it all together by a mere thread it feels at times.

Thx for the responses and input.

I've tried researching the pages, but asy ou all know, when we are in the point that we are in, time is limited.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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10 years 10 months ago - 10 years 10 months ago #36388 by Sandi
I'll try to answer your questions. Feel free to ask more after you read this.


1) IVIG - Interested on FDA feedback, long term effects, any recalls, alternatives to IVIG that work as well?
IVIG is usually thought of as a rescue treatment, meaning it can get counts up quickly but does not usually last. There was a recent black box warning placed on IVIG regarding renal failure. I wouldn't consider it a good long-term treatment plan. There are other treatments of course, but they carry risks as well. Has your child tried anything else?

2) Who are the most well renowned drs in the field of ITP?
Dr. Bussell and Dr. Provan, plus the PDSA medical advisors. pdsa.org/about-us/our-medical-advisors.html

3) Best tests to rule out other conditions, and why doesn't anyone want to do anything more?
ITP can be diagnosed with a CBC and a look at the blood smear. Other tests are usually not necessary if the patient does not have any other suspicious symptoms that would point to other disorders. I'm not sure what you mean about anyone wanting to do more. Like what?

4) What does it mean to have a platelet antibody?
Platelet antibodies are produced by the body and they cause the platelets to be targeted for destruction. No one knows why this happens, but the body begins to destroy parts of itself. With ITP, it's the platelets. Other autoimmune disorders can target other parts of the body, such as the thyroid or tissues, etc. The antibodies can come and go; they are not necessarily there for life. Antibodies are usually a good thing; they are needed to protect a person from illnesses and diseases. Once in a while though they turn on the body and become destructive and that is what causes autoimmunity.

5) What natural dietary or homeopathic changes has anyone tried and found beneficial? (on that note, I have noticed my daughter's platelets raise after Reiki energy healing treatments.)
The answer to that question is impossible to answer. You could do a search or read the natural treatments section. A handful of people over the years have found that eliminating things from their diet has helped, but that varies with everyone. It can range from sugar to gluten to fruit...no one thing works for everyone and it's a long process of elimination.

6) Daughter LOVES yogurt...any found correlation between that bacteria?
Well, some people believe that probiotics help the immune system long term and there are studies on that, but again, it doesn't work for everyone. Research in that area might be beneficial to you.

7) Flu vaccine safe or unsafe for ITP. Safe or unsafe for recipients of IVIG?
This is controversial. Half of us believe that vaccines are necessary to prevent illnesses that cause platelets to drop, and half of us believe that vaccines are disruptive to the immune system and can cause more autoimmune problems in the long run. Research will provide both sides of the issue so you have to decide for yourself. As far as I know, vaccines are not harmful for people using IVIG, but may not be as effective.

8) Any knowledge whether stem cell blood can be used for treatment of ITP?
It is not a standard, accepted treatment at this time.

9) What medications do ITP people need to avoid?
If counts are low, aspirin and NSAID's should be avoided since they can cause platelets to be less sticky. Other than that, it's a judgement call.

10) If this goes chronic, I'm interested to know parameters other parents may have given their little ones re: sports, life evetns, etc. and whether kids developed phobias of hospitals, and advice on how to minimize that?
Here is a guide regarding sports, but it is best to ask your doctor and go by your child's symptoms: www.itpkids.org/content/itp_sports.html

I don't know how to help you regarding fears of hospitals, maybe other parents can chime in.

11) How do caregivers survive...by that I mean literally? I started a new job when this diagnosis occurred, and while I'm a very tenured professional, one can only miss so much time from work. Hubby is disabled due to chronic migraines adn spinal issues so I'm often doing this alone...ARE there any organizations out there to help parents in this situation? And what about if I do indeed lose my job? Trying to hold it all together by a mere thread it feels at times.
I know it can be difficult to work and manage an illness, but I only know this from an adult patient's point of view. I don't know your situation, but these are things I did to minimize lost time at work. I scheduled appointments as late in the day as possible, so I could just leave a bit early instead of missing chunks of my day. I preferred to use treatments that didn't take a long time (for that reason, I never had IVIG). I spread CBC's out when possible. Some doctors go a bit overboard with checking counts and in time, I realized that I really didn't need as many as was suggested, so I negotiated with my doctor. Do you have a parent that could fill in sometimes? You have to find what works for you and in time, most people do. It's always a bit time consuming at first, but it does settle down. I don't know of any support groups, but this place sure helps people a lot!

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10 years 10 months ago #36418 by juliannesmom
Replied by juliannesmom on topic Best advice for parents and ans to questions?
On the subject of flu vaccine: The year before my daughter developed ITP, the girls and I had the flu mist vaccine, because there was a shortage of the injected vaccine, and the medical community were reserving the injectables for those who could not have the mist. The mist is a live virus, as I understand it, and more likely to cause certain immune responses. Once ITP was diagnosed, our hematologist still wanted her to have the vaccine, but urged us to get the shot, not the nasal mist, because a rev in her immune response would tank her platelets. He also urged the rest of the family to have the shot (so she wouldn't have flu virus in her home to rev up her immune system) and not the mist (because those who have the mist may theoretically "shed" virus for a few days, which would expose her and rev up her system). Any time my daughter was fighting a virus, her counts tanked.

On the subject of other tests: IVIG is a treatment, but is also somewhat diagnostic, as our hematologists explained. If the platelet count responds to IVIG, it is quite unlikely that any other condition is involved. While the IVIG is in the system, the immune system stops attacking the platelets. If your daughter had other reasons for a low platelet count, this likely would not happen. Our daughter had a great response to IVIG, but, like everyone else, her response was temporary. It seemed to me, however, that once the tanking of platelets stopped, and the count rose, her decreases were less dramatic, and she leveled off at a safer count for a prolonged period. Once she was labeled "chronic," which at that time was six months but I understand now is a year, she did undergo a bone marrow assessment, including a test which took some weeks to report, and which assessed for "precancers." Everything turned out fine.

How to manage chronic ITP: It just becomes a part of your life and your routine. My husband was a nurse, and about seven months after our daughter's diagnosis, he was able to take a weekend shift, which meant one of us was always available. You may have to call on family or a close friend now and then, or you may have to hire some help. Yes, it disrupted my work tremendously until my husband's work hours changed. The stress will either lessen or become manageable over time, but I know it is tremendous right now. On the bright side, your child is of an age that makes it likely her ITP will resolve. Our child was almost 13, which made it likely hers would be permanent. She entered remission at about the 1.5 year mark, and has had good counts ever since. There is hope for this with your child as well, and perhaps sooner.

IVIG can have terrible side effects, and we deemed it a rescue treatment best reserved for a truly dangerous count or a prolonged bleeding episode. When our daughter had low but not dangerous counts, we did "watch and wait," and restricted her activities accordingly. At 30 and higher, she could play mild tennis, but not go for the corners. Teachers, coaches, and peers were informed of her issues and restrictions. (We were blessed with a small, loving, private school.) When she had to have IVIG, the first episode left her with such a headache she returned to the hospital to rule out a head bleed. After that, we insisted on not only premedicating but keeping up the benadryl and tylenol throughout the infusion, continued benadryl and tylenol for a day after the infusion, vigorously hydrated, and she had a shot of decadron/solumedrol at discharge from the hospital on the second occasion, because she had mild headache developing. She never had severe side effects in her second or third infusion. We were blessed that she has not required a fourth.

Steroids have their place but have terrible side effects. Some here have found decadron pulse therapy to help. With our daughter, the crash after the treatment took her count lower and so rapidly that she developed a nonstop nosebleed necessitating her third IVIG treatment (fourth hospitalization). Short-term prednisone, however, got her count up enough to have teeth extracted for braces. (Stubborn baby teeth wouldn't let go. Seven had to be extracted. This was done by a pediatric dentist under anesthesia in a hospital OR with our hematologist right down the hall. Special dressings were used to stop bleeding.) Prednisone tastes terrible, and our daughter retched up her first dose. The pharmacist replaced the pills and urged me to dunk the pill in a spoonful of applesauce, not to hide it, but to mask the taste. She knew what I was doing, and why. She went along, and it worked.

You don't need the best doctors in the field, but if you want to read their articles, they are reassuring. You do need a hematologist if you don't have one and if you can reasonably get to one. Ours were at a teaching hospital at a medical school, and they were fabulous. They were familiar enough with ITP that they didn't overreact, and were able to give good advice and reassurance. (Plenty of common sense coping advice came from right here at the PDSA, too.)

Most folks haven't found diet to be a cure, nor a problem. My daughter loves yogurt, blueberries, and lots of other foods that are said to help or hurt counts, and her counts never seemed to be affected by diet. (Her counts did seem to tank when fighting illness and after excessive sun exposure.)

Medications: PeptoBismol is another no-no for ITP patients. It contains salicylates, similar to aspirin.

We dealt with fears the best we could. EMLA cream helps some kids have less painful IV insertions. Some kids prefer finger sticks (like mine) and others venipuncture for their CBC draws. Some prefer the "butterfly" needle. The children's hospital we used made it as comfy as possible for kids and moms. There was a window seat that made up into a parent's bed in our room. I kept a suitcase with pajamas for both of us, a change of clothes, and some essentials, as well as puzzle books and such, with a couple of pillows and blankets in the car. We were ready if a CBC showed she needed to go straight to the hospital. I made our "nest" as well as possible when we settled in, and it was bearable.

Good luck dealing with this. Come here often, and you will find tips, helps, and loving listeners.
Norma
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10 years 10 months ago #36628 by mumofwill
Replied by mumofwill on topic Best advice for parents and ans to questions?
I think the above posts have pretty much what I would say. As far as fear of dealing with hospital etc my son also is on the autism spectrum and I use social stories. I took loads of photos and also got some off the internet. I made up a book all about going to hospital including why wiht pictures of blood and bruises and platelets, blood draws, doctors, nurses absolutley all that I could. It talked about feeling sick and things that hurt and make him feel sad also the things that make him feel happy. We take it with us to each doctor and hospital visit. He shares it with the staff and it helps him to be distracted. It is always available for him and we often read it of a night. It has been an invaluable tool.He also has a toy dog and everything that is doen to him gets done to the dog too and this helps him to have a little bit of control in the situation. My son is 5 and was diagnosed with ASD in June 2012 and ITP in July 2012. I also have ITP. We had a visit to peads this morning as he currently has a count of 2000 and pupura, patechia and multiple spontaneous bruises. He does not have any bleeding though so we dont treat.
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10 years 8 months ago #37447 by runnershirl
Replied by runnershirl on topic Best advice for parents and ans to questions?
Thanks to everyone who replied..Very good info!!

Update: Daughter's 2nd IVIG was 9/3. Platelets didn't get as high this time, but seemed to stabilize in the 100's since then, or appearing so. Hema did recommend that we monitor every 2 weeks because after 2nd IVIG, she had (confirmed) black tarry stools, but no confirmation of why. During this though her labs stayed 100's, though taking a slight dip from 169 to 111 in 2 weeks, but I'm learning it's still okay. About a month ago, I discovered the poor kid had a gaping hole in her molar! She's only 3. And then another molar, etc. A follow up to dentist confrimed at least 4 and surgery was recommended, but due to ITP in a hospital environment. I went thru the first few weeks of feeling guilty of how I could have allowed my 3 year-old to have cavities...how is this even possible? We brush her teeth and take care like any caring aware parent. I sought 2nd opinion from Encology Dentist as referred by her Hematologist, who advised me that it's likely as a result of all the meds she's had to take in such a short time and their effects on her teeth. This is 1st I'd heard of IVIG and other meds affecting her teeth. Anyone heard of that?

We followed up with panoramic imaging yesterday and the treatment plan is to extract 4 molars, (?!?!), perform pulpotomy on another, perform cavities on 4 others and seal others. I'm floored. Oh, not to mention, medical insurance won't cover...Who knows about dental, but we have to come cash out of packet before out child who's screaming in pain every night can have this urgent dental surgery.

I can't help but to wonder, if this so common that meds affect kids teeth: 1) why don't drs advise you to undergo more frequent dental exams? 2) ha sanyone else experienced it; 3) what else are they not telling me that IVIG's and other meds which they've administered (and not provided me with exact details on); and 4) what happens to parents who must quit job to tend to children who are in and out of the hospital? What's next? No mentions of potential of renal failure except for the few posts here or there...Why shoudl a bulletin board of other parents the best resource for information?! That is really bothersome to me!

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