TOPIC: child age 5yrs with chronic i.t.p

hi im new to this so bear with me lol,single mum i have a child young girl who is nrly 5 she was diagnosed with chronic i.t.p when she was 2yrs old but believe she has had it longer than this, i have been looking up on diff ways to try and raise her platelet levels so i have started today to give her aloe vera has anyone had this and tried it ??? and is they anything else u could suggest im in uk and over here the dr do nothing at all so im at my witts end she is getting sick alot to picking up viruses all time from school and out HELP plezzz

Hi

I live in Crewe and my son has had ITP since last May - 6 months with counts under 20 and then the last few months all over the place!

My son also has a consultant who prefers not to treat unless there are serious bleeding symptoms - it seems to be the norm over here, although not at all in the States. Although I found this very difficult at first, I think it is OK now. It was difficult to live with when he was at school with a count of under 5 or even 1 on a couple of occasions, but he didn't come to harm. #I just keep repeating the consultants mantra now - counts aren't important, symptoms are (and when he says symptoms, he means something more than petichiae or bruises). All treatment for ITP seems to be a balance between risks, side-effects, and benefits and I am just not convinced that the (small) risks are worth it. I think its a decision that you have to be happy with as a parent though, and if you aren't go and talk to your daughters consultant again - they are doing trials of new drugs for itp at the moment in some hospitals and there are a lot of alternatives you could try.

You must be very strong to cope with this alone and for so long, so don't give up

Lots of luck, Ali

P.s. I am guessing you live somewhere in the Portsmouth/Isle of Wight area?? I grew up in Gosport!

hi ali thks so much for talking to me i live in the southampton area we are moving to u.s.a as i have family out there , it has been very hard since we knew and yes i do get down at times , but ur right not to give up god its so good to talk to someoen like ur self whoknows what its like thank you x

Hi, Years ago I had a friend here who gave her son Aloe Vera. She would never come out and say she thought the aloe vera caused his ITP to reverse but I always wondered. I did give it to my daughter for a short while but she didn't like the taste of it. What made you decide to give it to your daughter? It's supposed to be healing and some people wonder about leaky gut and ITP so I don't know what it could hurt. Have you told your doctor she is taking it? If you notice any weird symptoms talk to your doctor. Best of luck with it. I tried quite a few things with my daughter. Vitamin C is thought to be helpful for some people and I have heard vitamin D also. You can get her vitamin D levels tested. Where are you going to move in the US? There are local support groups for ITP in many areas of the US now. You can find them on this site. My daughter had ITP with low counts from 12-14 but she has had a normal count for a few years now. She slowly rose over time. Let us know how your daughter does, Debbie

Hi My son is 5 years old with chronic itp and we are on the watch and wait programme. Every 4 weeks he has his bloods done and then we see his consultant. After reading many threads I have come to the conclusion that he is being given the best treatment ie no treatment. I do feel that he can have horrendous mood swings and the dr said that this really has nothing to do with his condition. But he gets quite low and miserable and says mammy "why do I feel like this" and after having two other children now teenagers i now that this is not normal. I really do feel his bloods are dropping, he tends to mark easily after one of these episodes. I was surfing and found some seminar notes from american specialists and they are really trying to get the doctors over there to treat the patient/symptoms not the count. So maybe when you get over there things may be diferent. Good Luck.

i have been looking on the net research realy willing to try and natural way to help my little girl i saw that raw veg and strewberrys and aloe vera was on the top list of things that could help raise the platelets i have also been mixing it in water u can hardle taste it i have been given her just the 10 ml to srat with and build upon it as says to take 25ml twice a day with or with out the water im willing to try anything right now just to help her she loves her raw veg so thats another pluse aloe vera is good for internal and out ternal .... we are moving to florida merritt island , her count at mo is 3 we did have a patch whereshe looked great for ages then bang it came back worse than ever she had blood blisters in mouth rash all over she was tierd as well another sign i noticed when her counts drop

my little one gets real tierd when herplatelets drop and yes she can become moody to i think where ya body is so run down trying to do what it has to do it can be exhusting for the child as well as ur self i find it worse when she gets sick with colds flu sickness i cant sleep to good always up waiting for something lol only time i get to relax when she is at her dads which anit offten another good thing moving to florida il have the support i need from family uuggg i cant wait

Neat that you are moving to Merritt Island, Florida. I had an aunt who lived there and visited her years ago. Nice place to live. Hope you can find a good doctor down there. I think fresh vegetables is the way to go also. Dark green veggies help with clotting which is good when the platelets are low. It's great to do research and try what may be helpful to your child. Have you looked at celiac disease? Some people are helped with that diet.
Platelets carry seratonin so when platelets are low people do feel down and tired. The good ITP doctors know this. A lot of the doctors used to say this isn't part of ITP but the doctors in the know do say this is a symptom.
Best of luck with your move. Hopefully your daughter will see her platelets rise very soon. Take care, Debbie

solentgal, with the strawberries, do you just have them by themselves or do u have to do something specific with them, because i love strawberries so i take them to work with me all the time and it doesn't seem to help raise my platelets at all, so i was just wondering if something has to be done to them before u eat them??

I had a good indication my platelets were back down last week as i was realy tired and feeling run down, they came back at 18 and i have a feeling they haven't gone up much higher this week as i am still feeling really tired and just like i want to sleep all the time. I have another blood count on tuesday, so i'll find out soon enough.

i have just been giving her the strawberrys as they are i have not noticed much diffrence my self not yet asonly just started todo this also been trying her with aloe vera juice in water norm dose would be 25ml twice daily but cause she is younge i have chosen togive her 10 ml once a day and build up on it also been giving her raw veg to

hi ya debbie my mom has been looking into dr,sover they but if we have to travle we dont mind .i have been giving ali her raw veg and fresh veg when cooking .i never knew about dark green veggies so will be given that a try iwill also lookinto the celiac disase x

Good for you to keep looking for what can help your daughter. There is a list somewhere here of ITP doctors. Also a warning list of foods and drugs to avoid. A few people have been helped by the celiac diet. Have you read people's stories here? I am sure there is a local support group in Florida just not up to date on where. That might be a good support group for you. Also PDSA has booklets about different subjects that you might ask for. You are doing a good job in getting educated about this frustrating disorder. I teach preschool and one of my students got ITP before she started her three year old year and sill has it in Kindergarten now. It's hard to deal with in kids so young. She was doing pretty well but all these winter illnesses have caused her to go low again. Hopefully with the spring she will do better and your daughter too. Take care and good luck on your move. Have you thought about flying with low counts? People have some ideas about that and it probably would be good to ask your doctor too. Debbie

What are your daughter's counts? Does she bleed or bruise easily?

her count last week was 3 has been low as 0 beofre now yeah has brusied easy and sometimes she willget blood blisters in mouth witch bleed or if she has a cold she will get a running nose with blood in it to

wow, thats a low count. My son tonio had a low count of 0-3k only once and it happened during a viral flu of sorts with counts of 24 then dropping to 18 the next day.

We just got outof hospi though, after a 3 hr nosebleed last saturday, 3 vomits of pure blood, and 3 x of him defacating blood, IVIG was the only option. Of course in my country we have to pay for this expensive med. But at least we have peace of mind for at least a week.

That must have been such a frightening time for you and Tonio. Hopefully he'll continue responding well to the IVIG. Good luck to all of you

Cheers
toffeegirl

wow really sorry to here that keep stronge hunny x touchwood ali has not had it to bad with bleeds i thik id freak out , i freak out everytime she gets sick with just colds or sickness especial when she bruises my fingers are crossed for u both hun x

thanks for the support people.

sorry for sharing in your thread solentgal, i just thought it would be encouraging to you to know that youre not alone.

Anyway, the good news is, his bleeding in the feces and his bloody vomits were a product of the excessive bleeding from the nose. The greater concern is internal bleeding like what happened during our very memorable holiday in HK Disney a year ago. Be strong everyone and more platelets

thats ok chick take care and like ya self oranyone feel free to leave message its good toknow that we are notall alone xxxxx much love x