New child diagnosis. Is this procedure normal?

I thank you all for your strength and wisdom. I look forward to partying with you all in the future.
May you all be blessed with GOOD Heath and Happiness.
Leat

Le'at, ITP patients do have trouble producing platelets as well as killing them off but heamophiliacs of every type, A, B and C have trouble with clotting factor and will have normal platelet counts.

Hi Ali, how was the conference on Saturday?

Hi Firkins, how was the Bar Mitzvah party that Mia went to?

Yael started her final tests today. Her teacher thinks she did better. Her purpura spots are back, but feel her energy levels are a bit better. I shouldn't have started back on dairy products. Yael is due to have a blood test on friday for lactose and gluten intolarance. Does anyone know...if I keep her off of dairy will it show up in the blood test. The last time she had milk was last thursday. Any suggestions as I don't want it to affect her during the tests which finish Thursday.

Best wishes
Leat

Dougie used to be lactose intolerant as a small child - he didn't have real milk until he was 4 or 5, but he consumes vast amounts now. Does your doctor think this is a possible issue for Yael? I've mentioned it before but have been virtually laughed out of the consulting room! I thought they diagnosed it with either a breath test or a stool sample as well.

I forgot to answer your other question about the conference. My experience was probably slightly coloured by the fact that I travelled over to York with a group of girlfriends on the Friday evening so was somewhat worse for wear on Saturday! There was an interesting discussion about the food intolerance study - as I understood it, they hadn't found any specific link with foods, but there was a suggestion that ITP patients may have an unusual gut flora which produced unique compounds in urine and these weren't found in any of the control subjects. Unfortunately, I can't remember what they were. Maybe Ann could explain this better than me as she might have been listening harder!!!!

Great weekend all in all.

When I went to the haematologist last Thursday she said to let Yael eat what she usually eats. This was after four days of keeping her off milk products when I noticed the spots had gone. On that day after the appointment she had a pizza and milkshake. The next day the spots had returned. The haematologist didn't agree with me to take her off milky products. But I requested a lactose and gluten test for this Friday to rule it out. It will defiantly be a blood test as I have a form/packet where the samples will be placed. I will mention it to the doctor who will be taking the blood test. The only allergy test she has ever had is pollen. She has a grass pollen allergy....unlikely to stay away from that!

I'm glad you had a good time, it sounds interesting....sounds like margarine in your gut. Will look it up, there must be some articles written on the conference.

Thanks
Leat

Hi Ali and Leat,

so glad you had a good women's weekend, Ali. They are so essential. Had one recently myself.

This dairy stuff is intriguing. When Mia was an infant, just going on some cereal and dairy, she developed what I can only describe as blow out diarrhea. Ungodly. Many times a day and very messy. She began losing weight and her growth curve leveled out for a while. Of course, I had to push like crazy to get the doctor to pay attention. She was tested for various things, including celiac (blood panel only), lactose (by breath test) and milk protein. They ruled out everything but milk protein allergy which they decided it had to be since it wasn't anything else. We took her off all dairy for several years, as Ali did with Dougie. Gradually we reintroduced dairy and now she eats a lot of cheese and sometimes milk in a sauce or something. Very curious about this as it is common to all three kids.

There is a strand about food on the PDSA Facebook page that's interesting. The gist of it is that some people's platelets are clearly adversely affected by specific foods. It varies person to person so far as I can tell so far.

Mia had a blast at the bar mitzvah -- danced all night and home at 11:30 pm! Thanks for asking.
Firkins

Thanks to Ann for the link

www.itpsupport.org.uk/conventionppt/showjohnhunter2012.htm

Thanks guys

Hi guys,
Hope all ok your end. Yael had her blood test on Friday so didn't get results till late afternoon. Her platelets are up to 70k....what a shock. Wow! We were so exited....that's a big jump from 17k the week before. Her white bloods were a little low at 5.3 but the doctor said its within the normal range.

I tell you I kept her off milk until she finished SATs on Thursday then let her have milk as normal on thurs eve and fri morning....boy she missed having milk. So I admit...I was wrong to keep her off milk as it didn't make a blind bit of difference to her platelets. Anyway didn't get results for lactose/celiac blood test as it was our Sabboth. Hope to get these results on Monday. They have also looked into this Factor XI deficiency, to clarify its not that. Will again find out during the week.

Does anyone know what to do if your child has a wobbly tooth and wants to pull it out? It's driving Yael mad and the doctor said to come into hospital if there is any bleeding from the mouth. Is it really soooo serious?

Best wishes
Leat

70 is a great number - PARTY!!!!!! You never know, this might be just a temporary thing for Yael yet!

Dougie's baby teeth fell out with very little bleeding. Yael shouldn't have much additional problem at 70 anyway, but I don't think I would bother with the hospital unless it was loads of bleeding that wouldn't stop for over 30 minutes. If she does bleed a lot, i don't know why this works, but it does - get a wet teabag and use it to apply pressure to the gap the tooth has left.

Thanks Ali,
She will be partying tomorrow when wall climbing...she is very excited that she can join in the birthday party.

Thanks for the advice on the wobbly tooth...never heard of the tea bag idea. I thought the doc was a bit OTT when telling me to come in strait away. But thought I'd check it out with the blog first.

I know it could be temporary...but will enjoy while it lasts...and hope that it will last.

How's Dougie doing?
L

Dougie's fine - we are going to Manchester on Monday to get the tests he needs in order to start on Eltrombopag.

I think 70 after a few months of ITP is actually quite a hopeful sign that the ITP may be acute. And even if it turns out to be only a temporary high, its very well timed for a climbing wall party!

Good luck with it. I really hope it works out for him.
Bw
L

Ali and Leat,
so glad about Yael's numbers and that all ismoving ahead with Dougie. Mia's numbers are holding steady after a big plunge, for which we are grateful.

According to Ali's math, 70 is worth 2 parties.

best,
Firkins

Hi Firkins,
So sorry to hear Mia's platelets had a dip. PG I hope all gets better soon.
Thanks for the encouragement. We will see how many bruises Yael will come home with in an hr. At leased I left her with a smile on her face.

Bw
Leat

Firkins - I love your new thinking! Dougie's treatment is designed to give him a count betwen 50 and 150 so we could have many, many parties to come!!!!! Its a shame Mia's count has dipped, but you seem a load calmer with it which is great.

Leat - have you counted the bruises yet? Dougie has been to climbing walls with counts which were easily under 30, and he didn't seem to get many.

she has a few more but no hematoma's which is a relief. Yael had a great time.

Tooth still not coming out. She wants to pull it out before english tutor comes tomorrow!!!
Hope all ok today
Leat

Hi, sorry I haven't been in touch, there is nothing to report. Yael took her tooth out yesterday. Bleeding time was 30mins. I didn't panic as I could see it was slowing after 15. The tea bag idea made us both giggle as she had a nice brown stain running down her chin that took time to clean off after. Thanks for that Ali.

Anyway won't be getting another blood test till mid June and the hospital hasn't got results for celiac/lactose tests yet. Didn't realise it takes so long.

Hope all well with you guys
Bw
Leat