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Bloody ITP

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14 years 7 months ago #3031 by alisonp
Bloody ITP was created by alisonp
No pun intended honestly!

About 6 weeks ago, I took my 13 year old son to see the ENT specialist because he keeps getting nosebleeds. Roger has had them for a few years now, they come and go, finally got round to booking him into see the specialist at the hospital. We saw him, he thought it was a problem with the vessels in his nose, but when he took family history I told him about Dougie and he thought he'd better also send Roger for a CBC before he did anything himself.

So his Dad took him back today to see the guy for a follow up appointment with a view to getting the offending blood vessel cauterised. But they won't do it because Roger's platelet count was 148 (i.e. as near as damm it normal but outside normal limits!!!!). A count of 148 would never cause nosebleeds anyway. Now he seems to be enmeshed in NHS stupidity - he's had another CBC, the results are going to the haematologist and then him and the ENT specialist have to decide whether its an ENT problem or a platelet problem. Its clearly a sodding ENT problem! The guy wouldn't even have done a CBC if I hadn't told him about Dougie.

Sorry, just cross because he will have another month or so of nosebleeds now before something gets done, and until then my bathroom will keep having mornings where it looks like there has been a massacre there! I know they are just being careful really, but it just seems too careful to me!!!!!

Rant over! Ali :angry:

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14 years 7 months ago #3055 by lucidawn
Replied by lucidawn on topic Re:Bloody ITP
Ali, my daughter has also had alot of nose bleeds in the past, and my son Josiah has them too. He also ALWAYS has petechiae on his feet and half way up his calf. He had a cbc that came back low once (like 98 or something), but not since. It would be horrible if he had ITP on top of his heart condition and MS. But there has never been another low cbc. They dont' know the cause of the petechiae, though.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 7 months ago #3062 by Bunnie
Replied by Bunnie on topic Re:Bloody ITP
Your rant is truly justified and your 13 year old probably deserves more than one himself. The seasons are changing here in the states and the dry air and allergies are impacting me. Nothing more fustrating than being 20 minutes late for work because you had to stop a nosebleed and clean-up. Then to have the clots drain for another couple of hours, yuck!

A few years ago, I had to do the cauterization because it seemed I was having them daily, so I really can feel for him. It really did help, although even at high couts if I'm not careful I can have them when the seasons change and the air drys out or my allergies kick in. Using a humidifier at night plus regular use of a nasal saline gel like AYR (put on on a q-tip swab it in the nostrals)helps me a lot. I like the gels a lot, but feel like the sprays dry me out more.

I've found that I can stop them more quickly if I do NOT stuff anything in the nose because when you remove the tissue you distrub the clot stopping the bleed. It's best to lean forward so it doesn't drain down your throat and hold the tissue under the nose. Pinch the soft part of your nose just below the bridge (the bony part)and/or apply an ice pack.

Although a few years ago, when my sister had one so bad it had to be packed. The ENT told her that since they live so far from the medical center to keep some salt pork in the freezer and to slice a chunk large enough to pack the nose. I haven't had them bad enough or long enough to brave it, but sometimes the old remedies work best.

"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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14 years 7 months ago #3063 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Donna and Bunnie, thanks for calming me down - I need it!

I've found out better what happened now. For some reason I don't understand, the ENT bloke thinks that the normal range for platelets starts at 180K - wish I'd gone because I'd have put him right there!) So he thinks that Roger is 30K or so down instead of 1 or 2 and on that basis has asked the haematologist to see him. I suppose that it can't do any harm to check again - can't help but think that the haematologist is going to laugh at the ENT bloke though.....

Unfortunately Roger is having loads of nosebleeds at the moment - 6 so far this week. So the bathroom might continue to look like a scene from Psycho for a while yet. I am wondering whether it is linked to the spring and his hayfever coming back? The doctor has given him some gel to put inside his nose, but I am going to try your humidifier idea at night too - he seems to be waking up a lot with bleeds at the moment.

I just hope that the NHS doesn't chug along at its normal speed on this, because on that basis it could be months before he gets back into see the ENT doctor to get this mess sorted out. If there is ever a "next time" though, where I consider Dougie's medical history is irrelevant, I am going to keep my mouth shut!

Thanks for listening, Ali :S

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14 years 6 months ago #3514 by alisonp
Replied by alisonp on topic Re:Bloody ITP
I need another rant!

My son (not the one with ITP) has had at least one if not more nosebleeds every day for the past week. He had 3 on Sunday. He is missing large amounts of lessons because he needs to go to the cloakroom to stop the bleeding. My bathroom still looks like the scene of a massacre most days. After 6 phone calls to the hospital (weren't authorised to release test results over the phone) and the GP surgery (hadn't received the results from the hospital), I now know what his platelet count was on the second test - 143. So pretty much the same as the first test at 148. Apparently he still needs to see a haematologist - I cannot imagine why! Surely the NHS must have properly sick children to see? There is no paediatric haematologist at our local hospital so he would either need to go to Manchester or wait until the Manchester guy comes to Crewe in 3 months time for a clinic.

So I phoned the local hospital to ask whether he could have an appointment to see the ENT bloke again. I had a conversation with the secretary which went along the lines of "he can't see the ENT specialist until he has seen the haematologist". I tried very hard to keep calm, explain to her how disruptive this was for Roger etc. Finally she agreed to make him an emergency appointment for next Monday, but she thinks that the doctor will just send him away again until he has seen the haematologist......

I despair. I am sure that there is a quick solution to all of this - and its called cauterisation!

Thanks for listening :angry: Ali

P.S. Is no one updating this week - how are Tim, Caitlin, Danica, Jordan..... And how is Devyn - did you manage to hold off the IVIG Deanna?

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14 years 6 months ago #3554 by dbishop
Replied by dbishop on topic Re:Bloody ITP
Hi Ali,

Devyn's counts went up to 35,000 on mon, so we were able to stay clear of the ivig for now, we go back to the specialist on the 28th just to make sure that they are still up, or at least above 20,000. Were keeping our fingers crossed!!!

Sorry to hear about your frustrations over Rogers situation, it's frustrating having to do things on there terms!!! Hopefully it will get resolved sooner then later. How is Dougie feeling? Is he still feeling really tired?

Take care

Deanna

Mommy to Devyn 3 years old

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14 years 6 months ago #3595 by lucidawn
Replied by lucidawn on topic Re:Bloody ITP
Ali,
How frustrating! It must be very frustrating also that you have to wait so long to see a specialist. If they think he has a problem, shouldn't he be seen right away? I would be livid. I know that with Tim's dental problems, the dentist wouldn't see him until the hemonc wrote a note that said he could be seen at a certain count (I think it was 100k). I think that you would probably ask the hemonc to write such a note for Roger. Tim is stable count wise, but he is depressed and I'm perplexed as to how to help him since I can't really get him a counselor (insurance issues). Medicaid, the state medical insurance, doesn't really cover a psychologist. They would pay, but psychologists don't accept it. It stinks.

Hope you get Roger some help soon.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 6 months ago #3603 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Hi Donna,

Its good news that Tim is stable with the N-Plate. 50 is roughly what it is supposed to achieve right - I thought that it was supposed to take you to a "safe" count above 30.

The counsellor thing is both bad and good. Awful that he feels down enough to see one and to admit that he needs help - I know how bad my 16 year old would have to be feeling before he would admit that. But really really good that he recognises that, and he is willing to ask for and accept help. The NHS would have trouble with psychotherapists too I suspect. I hope you manage to find someone that you are both happy with (and one that doesn't damage your bank account too much either).

We are having a really good couple of weeks. Dougie has enough bruising on his legs to let me know that things aren't 100% (maybe in the 40-50 range), but equally, no petechiae since the weekend before last either. Its brilliant because he isn't worried everytime he tackles someone in football or plays a bit rough and neither are we. And all the tiredness has disappeared so that is great too. I keep on hoping that this is going to last but recognise that might be unrealistic. However, its lovely just at the moment and I am currently calm enough about it to have booked him onto an adventure camp in the summer holidays. He's had itp for nearly a year now, and he really hasn't come to any harm at all, plus his count is loads better than it was. The haematologist said it should be ok barring sudden crashes - I am not going to think about that, but if it happens, I guess we will deal with it then.

Now I've just got to sort the nosebleed issue out with our Roger and we will be dandy - he's averaged more than one a day this week, so things aren't going well on that front! The gel that the doctor gave him doesn't seem to be making any difference, and I know from last year that the problem got worse as the hayfever season wore on. So I've got to be very firm on Monday when we go back to see the ENT guy. If he wants to waste NHS resources by getting the haematologist to see Roger, fine, (I mean, wouldn't we all be overjoyed if our kids had a count of 143!) but he needs to stop the nosebleeds in the meantime.

Here's hoping for some happiness for Tim anyway, Ali :)

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14 years 6 months ago #3752 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Oops - knew I had spoken too soon.

On Saturday, exactly two weeks since Dougie's petechiae went away, they came back....damn! He seems to have a distinct pattern at the moment - two weeks up, four to five weeks down (ish). His ups don't seem to be up in the 100s like they were before either. But I am thankful that down only usually means 20-30s too.

Just wish I could figure out what makes it go up and down like that.........

Ali :)

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14 years 6 months ago #3761 by lucidawn
Replied by lucidawn on topic Re:Bloody ITP
Ali,
You know I think its just the bodies continuing battle. On one front his immune system is tagging and destroying platelets. On the other front his body recognizes he needs more platelets, so the bone marrow produced a bit more, and then at times can't keep up so it crashes. That's how I look at it with those swings...but I'm not an immunologist or hematologist, lol. Adolescence seems to be such a time of change in the body too, so maybe it will balance out at some point. We can hope. For Tim, his balance came as a crash he can't recover from. I am a realist, so I tend to think that this is what he and I have to deal with until there is a better treatment or a cure. Knowing his grandma's history of severe refractory ITP, and that it has been lifelong for her until very recently (she responded to Rituxan), I tend to think that is Tim's future until there is a cure. Maybe auto-stem cell transplant of some sort (I was reading about it for MS), or gene therapy (I know ITP is not considered hereditary, but we have three generations of ITP on his dad's side). Maybe researchers need to look more at that side of it for a treatment/cure.

Oh, one more thing. My other son, with MS and heart disease, has been having alot of nose bleeds recently. He tends to have them at times, but he's had several in the last few weeks.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 6 months ago #3788 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Well, I took Roger to the hospital, but I am still not sure what is happening.......

They cauterised a vessel in his nose, but they were not sure it was the right one??????? He's got to go back next Tuesday so that they can take another look. Lets hope this works.

His platelets were only slightly off at 143, but his white blood count was really low - 2.3. I've got a copy of Dougies last count and his was 7.4 and according to that, the lower tolerance is 4.5. I've no idea what a low count means, so I am going to phone the GP again and ask. LOL, I think that the GPs receptionist might start blocking calls from our phone number!!!

Ali :unsure:

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14 years 6 months ago #3794 by xray001
Replied by xray001 on topic Re:Bloody ITP
Oh Darn Ali - sorry to hear that the petechiae are back.

I have been really enjoying this past week -- Danica started the Decadron two weeks ago (with a count of 4) and was at 160 four days later. I knew not to get too excited. We were scheduled for IVIg last Monday. It was fairly early, and I knew that it would be a hassle trying to get her blood done so early, so I checked it Sunday night - it had dropped to 22 in two days, so I knew then that we would be having IVIg on Monday.

That was last Monday, and I have not checked her count since then. I am sure that she is very happy with that.

I only work three days this week (Tues-Thurs),so I will probably check her on Thursday. She is scheduled for IVIg next Monday.

When we were there last week, I told the nurses about Danica's neck pain and swelling behind the neck. We went up to see her hemo, and he said that the Decadron should not do that. He said that when she takes the next Decadron, she should take it on alternate days, for 8 days, rather than every day for four days. That was just to try to lighten the side effects. If it does not help her count, then he recommend splenectomy. He is not keen on using Rituximab, or any of the other treatments such as NPlate, as they only just came into use in Canada, and he does not want to try them on Danica.

On a lighter note, I will be off for three weeks, as lambing is due to start on May 3. However, it did start already - I have four lambs now -- all from yearlings which is weird,b ut they are all doing very well.

The weather is not cooperating very much though - it was nice for a while (wearing t-shirts) and then it got cold, and we have snow. It is only +3 today and cloudy. We do need the moisture though.

Good luck with Dougie.

I wish you guys all the best.

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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14 years 6 months ago #3800 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Hey Michelle

Its good to hear from you - I've been wondering how Danica did with the decadron this time round. Clearly no better then? That stuff sounds really horrible, so I hope that the next one spread out a bit works better for her, or at least doesn't have as many horrible side effects. I am surprised that they keep trying it for her, given that it seems to have had minimal sustainable effect so far. I can understand your doctor's reasoning is about the rituxan and n-plate, although I think I would find it frustrating not to try at least. Are you ok about the idea of splenectomy? Poor Danica has had sooooo much to deal with over the last year, she needs some kind of a break.

Despite her cleaning habit, I am pretty pleased that I am not DAnica's mum at the moment. It must be difficult for you all to live with her low counts and the treatment ups and downs. It makes me realise how lucky Dougie is. Most of the time his count is at a level where he just gets on with life as normal - ok, his count is low compared to "normal" people, but it isn't really a problem. I am guessing it is about 30 today, but he's played footie at lunchtime with all the other kids with no problem today. Despite the fact that we are now a fortnight away from the 1 year anniversary of his ITP, I still have enormous faith that it will just go away at some stage. My other son on the other hand ....... has just had another nose bleed, so I guess that the cauterisation didn't work that well! And I have to take him to the GPs on Friday to discuss his blood test result - I have no idea why the hospital couldn't discuss it with me today. My mum says our family is clearly determined to bankrupt the NHS this year (LOL!) cos my dad is currently getting some really expensive chemotherapy for myeloma too.

How many sheep have you got? My uncles farm on the Isle of Man and are just reaching the end of lambing. It seems like a time of year that is VERY hard work. One of my aunts currently has four orphans living next to the Aga. When we were kids, my cousins used to adopt the orphans and I was always so jealous of them and these lambs when we used to stay!

Ali :laugh:

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14 years 6 months ago #3816 by ktonooka
Replied by ktonooka on topic Re:Bloody ITP
Hi Ali,

I haven't written in a long time but thanks for asking about Jordan. She is doing good for the most part. She had a pulse of pred in mid March and has been low since (28-48) but not needed treatment. Her new hematologist wants to watch and wait more instead of treating. But she tested at 20 today and we may give her IVIG this week. She has some more dancing this weekend and then it should be over for the school year. I am still contemplating Rituxan in June when school is out.

I've been reading about your troubles with Roger and his nosebleeds. And maybe the cauterization didn't work. How frustrating! Hopefully you will find out more when you speak to his GP. I wanted to tell you that Jordan also tends to have a low end or just lower than normal WBC count (usually 3.5-4.0 but sometimes dipping into the 2's, the low end is 4 here) I have asked a few times about that but more in regards to treatments and will the low count be a problem? Haven't got any real clear cut answers to that. I asked it specifically in regards to Rituxan treatments and haven't gotten an answer yet because the doctor said he was going to review her CBCs and then let me know his opinion. That was in March!. Guess its time to ask again since summer is coming soon! Am interested to hear what your doctor has to say about that.

Sounds like Dougie is doing okay and mostly going about his normal life with his counts. Jordan pretty much does the same, when I told her her count today, she just said oh well and shrugged it off. Most of the time, she takes it better than I.

Tomorrow is the 1 year anniversary of Jordan's diagnosis. I also still have hope that someday this will go away for my kid and for all of ours for that matter. Take care.

Karen
mom to Jordan

Karen

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14 years 6 months ago #3824 by lucidawn
Replied by lucidawn on topic Re:Bloody ITP
Ali,
My other son is having issues now too, with nosebleeds among other things. He has MS and he's having a flare right now. I can't get him in to his neuro and feeling that frustration. I'm hoping to get some major blood work done for him, and he'll probably have an MRI soon. He always has petecheai on his feet and ankles, and sometimes up his legs too, but no low counts. Nobody seems to know the cause, but its not normal and not related to MS. He needs a major workup. Right now he's having dizziness and confusion, as well as short term memory loss with migraines and nosebleeds. I wonder what his blood work is like.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 6 months ago #3832 by xray001
Replied by xray001 on topic Re:Bloody ITP
Pretty weird that three of us are approaching the one year anniversary! Danica's will be in June.

I have over 100 ewes, plus we are just over half way through calving - we are calving about 250 this year. Kevin is on his last week of holidays this week, and then he goes back to work.

Yes, doing the decadron for the third time seems like an exercise in futility, but that was the original plan - try for three months. I am guessing that she will not get a count as high the next time, as she has gone down very fast the last two times, so i am thinking that it will come up the days she takes the decadron, but then will drop on the days that she does not take it. I guess only time will tell.

Part of me just wants to do the splenectomy to avoid these other drugs, but then, once it is gone, you can't put it back in, and it is not a guarantee that it will work.

Ugh

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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14 years 6 months ago #3965 by alisonp
Replied by alisonp on topic Re:Bloody ITP
I am going to have visited every hospital in the North West of England at this rate! Got a phone call from the hospital this morning to say that they were referring Roger to see a haematologist in Liverpool as an emergency case (don't know what that means). I've asked both the hospital doctor and the GP about his blood test results and they seem really reluctant to tell me what the issue is, but I gather that they are worried more about the lack of white blood cells (lymphocytes??) than the lack of platelets. On the positive side, he seems fine!!!! Also positively, Dougie doesn't seem to have many petechiae or bruises.

Last year I didn't even know what blood consisted of, never mind what a haematologist did! I am going to be an expert in blood at this rate.

Ali :unsure:

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14 years 6 months ago #3976 by tacmom
Replied by tacmom on topic Re:Bloody ITP
I hope nothing ends up being wrong with your other son! You asked me before about Caitlin's low white blood cell count and I forgot to respond. The drs were never worried about Caitlin's wbc unless it got below 2.0 and that really only happened once. She has a diagnosis of chronic neutropenia on top of her ITP diagnosis, but occasionally, her wbc does go up into the low normal wbc range.

They were really only worried about it when she was first diagnosed because they didn't know for sure if it could be ITP when her wbc at the time was 1.5. She was getting over the flu. When she got another blood test at the hospital to see what was going on, her wbc had jumped up to 2.1 so they were not as worried. They think Caitlin's "normal" is between 3.0 and 4.0 because she didn't have any symptoms of illness or extreme fatigue when her wbc was in that range. I really think the drs worry alot more about a high wbc than a low one. Keep us updated!

Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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14 years 6 months ago #3987 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Pauline, thanks for this. Its good to have Roger's results put into context. I "think" that his first test was 1.0 and the second was 2.3. But the doctor won't tell us for some reason, so that is based on me and Roger reading the doctors screen when he went out of the room!! The paediatricians at that hospital seem a lot less secretive than the ENT department - the doctor who sees Dougie is happy to show me all of his tests!

As my new years resolution this year, i vowed to give up worry!! Don't think I have entirely managed, but I am very chilled compared to how I would have been last year. Am hoping that "emergency" referral means within a week or so though - you never know with the NHS!

Hope Caitlin is feeling better from her cold and that the n-plate is working well.

Ali :)

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14 years 6 months ago #4049 by xray001
Replied by xray001 on topic Re:Bloody ITP
Ali- I hope you get our referral soon!!! A count is 1 is not good. Usually, a high WBC is caused by a bacterial infection, and a low one indicates a viral infection, but things with Roger sound a little more serious than that.

Danica tested 19 last Thursday, so she will have IVIg tomorrow.

I hope the weather improves for tomorrow when we are away. WE have had snow and wind. Had twins born in the night, luckily I was out there shortly after they were born. Much longer, and they would have been dead. I worked on them for an hour (tube fed them colostrum from mom), and warmed them. They are doing fine this morning. We have had so much moisture, and things are sopping out there.

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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14 years 6 months ago #4065 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Hi Michelle,

It is cold here today as well, although not snowing. I think that one of the ski resorts in Scotland is still open though which is very late for here.

I seem to be descending into haematology hell with my boys! Me and my husband were saying yesterday that maybe we should ask them to do a CBC on our other two sons as well, because we are getting a bit paranoid. It would be interesting anyway; I keep wondering what Dougie's "natural" level of platelets is, so knowing what his brothers counts are might throw some light on that. I am having trouble thinking that there is much wrong with Roger - in the past couple of years he has only ever been to the doctors to get antihistamines in the hayfever season and he is never off school sick. And he is fine now. The thing is that they only tested him because of Dougie, not because they thought there was any problem, so as far as I know he could have been walking around for ages with a low count. The hospital don't seem to be treating it as particularly worrying so I am taking my cue from them.

Hope that the lambing continues to go well and that your weather warms up a bit.

Ali :P

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14 years 6 months ago #4093 by Ann
Replied by Ann on topic Re:Bloody ITP
Why don't you ask for a blood test for the other children? You may find that it's just a familial difference. I'd ask for an FBC rather than a CBC though 'cos we ain't American. :P

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14 years 6 months ago #4094 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Oops, the trouble is that my knowledge of these things comes almost exclusively from this site. However, I consider myself well told now Ann!!

If you heard me constantly telling my children that they go to the cinema to see films rather than movies, and that they eat sweets rather than candy, you would know how unlike me this error is!!!!

Ali :woohoo: :) :laugh: :P

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14 years 6 months ago #4154 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Went back this morning to see the ENT bloke, but he said Roger needed to see the consultant who isn't available until 28th May - so that was a waste of a morning then! On the positive side though, although the cauterising that the doctor did last week didn't reduce the number of nosebleeds at all (his average is still 1+ per day), it has reduced their severity and length - he only requires a hankerchief at the moment, not a sink!

Still waiting to hear from haematologist at Liverpool, but I get the impression from the doctor this morning that it could be a while.......zzzzz

Ali :huh:

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14 years 6 months ago #4161 by alisonp
Replied by alisonp on topic Re:Bloody ITP
P.S. Donna, writing my last post has prompted me to ask whether you had any luck in getting Josiah to the doctors and whether he was any better. It is soooooo unnecessarily annoying to have to wait for appointments. The NHS is always criticised for the length of its waiting lists, but i've always assumed that an emergency referral implied some degree of speed before this! Also I don't know how you cope with having two kids with medical problems - I am having trouble just keeping up with appointments at the moment!

Ali :)

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14 years 6 months ago #4179 by lucidawn
Replied by lucidawn on topic Re:Bloody ITP
Ali,
We finally got in to the neurologist last Friday. He was not really listening to much and treated me like a wart on Josiah's brain. He finally said he thought that all was fine and that he didn't think the MS was flaring. We have contacted the National MS socieity and they will be helping us find another Neuro and also get him to the Peds MS center in Alabama (we are in North Carolina). Josiah is also going to Canada this year for the teen MS camp...he is looking forward to it.

Sorry to hear about Roger. I hope its just a fluke for him and that all checks out. It is tough having two with med issues, but after a while, it becomes normal and you don't think much about it.

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 6 months ago #4201 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Donna, that sounds like it might be a good outcome long term even if it isn't at all what you need at the moment. I hope he is feeling better anyway.

I am the greatest believer in the NHS, and they've been fantastic with Dougie, but I am beginning to think that me and that great British institution are not on the same page (so to speak). This evenings converation-

Hospital - the first appointment we can offer Roger to see the haematologist is 14th June
Alison - But my local hospital said that they had requested an emergency consultation
Hospital - Thats the earliest possible appointment.
Alison - I had the impression the term "emergency" meant something shorter than 6 weeks in the future
Hospital - I'll go and talk to my supervisor
2 hours later......
Hospital - I'm afraid our system doesn't let us offer you anything sooner
Alison - your system?
Hospital - we can't override the booking system. It has no facility for emergencies. You will need to phone the consultants secretary tomorrow morning and ask them.

GRRRRRR - I am being driven to that port and lemon..........

Ali :angry:

Sorry, I know this hasn't got a lot to do with ITP but I needed to have a bit of a rant!

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14 years 6 months ago #4229 by lucidawn
Replied by lucidawn on topic Re:Bloody ITP
Ali,
It does have to do with ITP because it affects your family and your child's health. My parents were in Cananda for a mission and my dad had a small heart attack, and my mom broke both of her hips. They had insurance, but were told it would be six months before they could see a specialist! They had to come back to the States to get emergency care! As much as people whine about our health care, I don't think you can beat it. You have to buy insurance though (and those who can't, for the most part, can get the state health insurance, which is free!). I hope that our lame healthcare plan is repealed. In a country as big as the US, it just won't work to socilise the medicine. Can you imagine the waiting lists?!

Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 6 months ago #4230 by alisonp
Replied by alisonp on topic Re:Bloody ITP
Donna,

To be fair, I think that the NHS is absolutely fantastic for most things. Dougie hss mostly had great care and I've liked that fact that they have looked after him and reassured me without treating him unnecessarily. Both my mum and dad have also had some cutting edge treatment in the last few years. When my mum shattered her shoulder blade into 20+ bits, nobody thought she would regain the use of her arm, but the surgeon who put her back together was just so skilled and her physiotherapy was also so good.

In my experience, what the NHS is not so good at is a) queues, and b) non-emergencies. It takes ridiculous amounts of time to see specialists for non-urgent things which nonetheless really adversely affect your quality of life - like old ladies who need their hips replacing, and instead become frail and housebound while they are waiting. I also find that, like many large institutions, it sometimes gets a bit caught up in its own rules and regulations and ways of doing things. My sons would say that it gets its head stuck up its own a**e. And I think that maybe I found that bit of the NHS last night.

However this morning, I got on the phone to the doctors secretary and talked her though my concerns about the delay and she was so helpful. She got him an appointment on the 17th of this month (about a month earlier than originally suggested) and also talked me though my rights to get hold of Roger's medical records like the copies of the letters which have been sent to his GP and the haematologist. So tomorrow, I am going to talk to the sister at the local hospital and politely point those same rights out to her and ask for copy letters to be emailed to me - and then I can stop imagining the worst! When you have asked and asked and just not been given a straight answer, its quite easy to let your imagination run riot - still a total waste of energy though!!!

Ali :) :)

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14 years 6 months ago #4249 by xray001
Replied by xray001 on topic Re:Bloody ITP
Oh my goodness, I cannot believe what I am reading about Roger and the run-around with trying to get an answer.

That is so frustrating when they tell you that you need to see "another" specialist, but that he can't see you until the year 2020 (ok, I am joking with that year, but isn't that just the way it seems - six weeks is a long time - it feels like it is FOREVER into the future).

I am glad that they at least moved it up a month. But still - that is a long time. Obviously there is something the matter with Roger, and it is just so unfair when they find something, but then, can't tell you.

Congrats Ali - I see you are a gold boarder. I am impressed. However, part of me worries that you spend a little too much time on the computer - perhaps with a little too much port and lemon!!! Ha ha, I just love reading your posts, because you speak so different, such as "bloke". You are truly entertaining, and an amazing person, and I am glad to have contact with you.

Michelle - mom to Danica - age 13
Diagnosed 8-6-09
No response with Prednisone, WinRho or Rituximab.
over 60 IVIg infusions (every two weeks)
Three Decadron pulses - count was up while on the Decadron, and then fell as soon as it was stopped. SPLENECTOMY done 7-June-2011 Last count 594

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