Willows Son Mike Crashes Out Big Time On 4th July .

[willows]

Hello all well the 4th of July will be a day to remember in our house from now onwards !!!!

As some of you may be aware I've been having big worries about my son Mike , who's now just over 17 1/2 years old and by the way just finished his first year at college, with what we think will be a pass at the highest level in public services.

Anyhow , Mike had to get a blood test done yesterday as he's been showing more and more signs of POTS again such as :

He has so much leg pain now at times he wishes he could get rid of them both.

He finds it hard to walk any distance , especially from the bus station to college in the mornings , which almost finishes him off by the time he's actually got there.

He cant get up hills very well ( we live in a village full of hills )

Gets excessively tired very quickly , almost like someone 'pulled his mains plug' ( dont we know that feeling well )

Has headaches 'out of the blue' almost once if not twice a week '.

He's had the most horrendous bowel problems with such awful contractions he's been known to almost pass out with the pain ,and this has gone on since he was just 7-8 years old , poor lad.

Nasty digestion problems (with coughing up blood at times )

Short term memory problems with lack of concentration which is making it harder at college, but having said this both Mark and I have always supported Mike in his work and helped him to go over things , checking he's put things down correctly etc, which is probably why it now appears he's the only one to not only finish the course ( of over 50 who started ) but he's also getting a distinction pass...............are we proud of this lad or what

Mike also has sleep problems.

That bleeding under the skin I have which begins with P ...something ???

He has days when he feels 'strange , looks like' death warmed up ' and you can see he's just not well , but he cannot tell you what it is thats wrong , all he keeps saying is he doesn't feel right ( and doesn't look it either )

So Mike and I went to my doctors yesterday to get thses blood tests , my local doctors who look after me are getting worried about Mike now and have managed to find a doctor who specialising in POTS in Torbay ( in Devon UK )and had already arranged for Mike to me seen by this person , so in the meantime they decided to do a few blood tests to rule out anything else before hand .

Mike went into the office and sat on the chair , he had said to me in the morning and then about an hour before this that he was feeling' a bit off today ' and instead of sorting out his lounge when we had finished this ( tidy and cleaning it when we got home ) he was going to lay down and have a rest for a couple of hours ................an alarm bell rang in my head ........... I looked at Mike and he did look a bit more washed out than he had when we left the house that morning

So nattering away to the male nurse , Mike then said as he was about to take blood 'I m really not feeling to good' the nurse suggested that Mike lay on the bed and have his bloods done , so he did this and all seems fine , bloods where taken and Mike was still nattering to us both .

I collected my stick and bag from the chair Mike had been sitting in as Mike slowly sat up , then he slowly stood up to go .... as he turned to look at me his face seemed to disappear ............all I could see looking back at me was a white face with two eyes !

So grabbing Mike by the arm I sat him in the big chair and asked him if he was OK , by this time the nurse had seem his face and asked the same , Mike said fine , the nurse asked me if Mike had problems with having blood taken , which I knew he didnt have , he's had so much taken over the past 17 years when he's been very ill that its just a piece of cake to him and no worries...................and while we where saying this Mike crashed ....................he started to shake, twitch and then fell forwards , luckily as nurse was on one side and I was on the other we managed to support him .

Mike now dripping sweat like he's been in a rain shower and was unconscious , I had to leave the nurse and get assistance from the office staff , one went to get mark who was in the car outside , he said as soon as he saw her coming he thought is either Mike had a turn , me hit the floor or both of us !!!!

Another member of the office staff came in and then another nurse , who on seeing Mike still out helped put him to the floor, feeling him now soaked with sweat , white as a sheet , still unconscious ( 5 minutes now and counting ) she called the doctor , a lovely lady doctor came in and couldnt find a pulse at first ..............called for oxygen and pillows for Mikes head and feet .

Doc then managed to find a pulse which was very slow and weak ( at about 45 ) so she called for an ambulance ( 999) by now we had 2 nurses, 1 office staff, 1 doctor and Mark and I in the room with Mike ..............and he's still out at 8 minutes and counting .

You could hear the ambulance coming from about a mile away and it was now that the Doctor so concerned with Mikes pulse and low hear rate that she made one of the nurses get the resuscitation unit 'just in case'.

By the time the ambulance arrived Mike had now been out cold for around 20 minutes and was just starting to come back , with 3 ambulance men in the room , 2 nurses, 2 office staff , 1 doctor , Mark and I still in this small room little space was left for Mike to lay out , all 6 foot of him and you couldnt have squeezed a cat in if your wanted to to !!!!!!

So with Mike hooked to heart monitors, drips ,oxygen and BP monitors we fought our way out of the Doctors rooms and to Derrifords hospital where after a 15 minute drive we arrived and Mikes pulse was still only 40 beats a minute and still dropping below and setting all the alarms off !!!

So , guess what ?????????

After all this time of Mike being 'out cold' still looking unwell , still having such a low pulse rate and sweaty etc you will not believe this one ................... I explained to the staff nurse what POTS is and that Mike is going to see a specialist as it it so rare in Devon etc ( took me about 15-20 mins to get it all over to her ) the staff nurse was very concerned as Mike was still pale and you could see he was unwell ...............she went and got a doctor , who unbeknown to him I watched as he looked POTS up on the net and sat reading about it ...............he then came to us and begin to explain that he knew all about POTS ( OMG what a liar) he explained that 89% of all people who get POTS get well .....................er , sorry I said could you repeat that and explain !!!!!!!!!

He then said that in clinical trials he had learnt about ( er , what sight was this I wondered ) 89 % of all people who had POTS especially young people of Mikes age who had showed any small signs of this condition , became well within a year or more and had no other signs from then onwards ............................oooooooooooops may be this Doctor should have actually read Mikes notes in which a letter from our doctor had been enclosed which clearly said quote'

MIKE HAD BEEN SHOWING SIGNS OF POTS NOW FOR OVER 4 YEARS .

This doctor did not impress the now more awake Mike , Mark or myself with his stupid explanation of POTS and how it effects you , he'd of done better to of just got us all a cup of coffee and washed the floors than made out he had any understanding of POTS , he actually made himself look a right 'fool ' Mike , like both Mark and I where not impressed and at this time Mike asked if he could go home as he didnt want to stay in a hospital that had no understanding of what is possibly wrong with him and of course this wonderful doctor said yes.

Mike , who was still laying on a hospital trolley had the drip taken out of his hand and then promptly started to crash again ........................ at which point Mark sat him upright and we both started to talk to him , got him a very cold drink of water and he got the colour back into his face and body once more.

15 minutes later we got out of the hospital , quite honestly if Mike had been unwell again last night I would of refused to have him admitted to Derriford in Plymouth , but kicked up a huge fuss until he'd been taken to Torbay hospital up the coast from us for help .

Both mark and I knew that if Mike was taken into Derriford he'd get no help at all , and we where right , what makes us mad is the fact that this so called Doctor who came and told us these facts and numbers had been sitting reading this off the net some 2-3 minutes before he came to see us , so much for doctors training and expertise .

Mikes OK now , a bit tired , look pale and still not 100% himself , but at least at home if he does have another crash , both mark and I have 1000% more POTS knowledge than the local NHS hospital has and we actually know how to use it .

Willows.

[ajw4790]

Oh, my! That sounds awful! I hope he is feeling better now! That ER sounds like they had no clue and needed to not try to pretend they did... I hope the new dr. will be able to help and will know what he is talking about!

[willows]

Sorry I haven't been able to get back about this but two days after Mike crashed I had a very bad fall and have been unable to do anything as I have been stuck in bed until now.

Mikes looking and feeling much better now, he's had a rushed appointment from the Torbay hospital and is all set to go and see the new man at the begining of August .

Mikes showing so many signs of POTS now and I am more certain every day that he is following myself down the dark and miserable Pots road, its almost a mirror image of myself , especially when he crashed , OMG he did exactly what I do when I'm really bad .

I feel for that poor lady doctor who has never witnessed myself or Mike being unwell before , I think you could say she was shocked .

Anyhow I'm now up and starting to move around again , I 'glitched ' just for a couple of seconds I blacked out and fell backwards like a broomstick ( as stiff as a board) holding a box and hit the centre of my back on the upright hoover as I landed..............with a loud smack on the floor .

Yep , you could say I was in pain and of course it set of one the worse POTS bouts I've ever had , sicking up everywhere, sweating like a river , breathless, grey , unable to eat , drink, sleep, headaches, blurred vision and angina ..............and NO I will not be doing it again , trying to get to the loo when the pain is at level 11 out of 10 and your so stiff and want to be sick with every step is something I dont want to repeat .......famous last words

Anyhow ................all's well in the household again , unless you take onto account the wall thats been ripped half down by hubby dearest and the HUGE flying ants nest he found in it ...........and YES, men with many disabilities can still run fast if they have to ! ! ! ! !

Take care ..................willows.

[pat57]

Please lay him flat next time it stabilizes the BP. If he has neurocardiogenic syncope it can be dangerous to keep him upright. A faint can often be aborted if you lay down and a seizure can be induced by failure to become supine.

I'm tired- I'm sorry to be so brief but it is important.

I wish him luck with the new DR>!

[ellen]

Yes, Pat is so right.

I'm surprised the lady doc called for a pillow under Mike's head.

I had a similar faint in a doctor's office and they insisted I sit in a wheelchair; as I tried to put my head down to increase the blood flow someone forced me to sit upright and I went OUT completely. I heard the poor doctor cry, "Call 9-1-1!"

I ALWAYS ask to lie supine when having blood drawn. Feet elevated is even better!

I hope Mike is getting the medical care he needs.

[willows]

Hello all ,

sorry I've not been back on but it appears I did more damage to myself than I thought , when I did a 'glitch' in the loft

I've been in so much pain and it seems I've also torn something in my chest ( above my left boob) and its damaged nerves under my left arm /side and also damaged my right knee.

The chest problem has set off an infection and I an on antibiotics now and my knee is driving me mad , its so painful to walk with .

And then to top off the lot I've got something wrong with three of my teeth on the right hand side of my upper face ...........haven't been able to eat for three days and am in so much pain . I saw the dentist today who said nothing wrong with actual teeth but its my gums and he then stuck some stuff on them used a lamp to seal it and then put some banana stuff over the top of it ...............and had me screaming around the surgery room clutching my jaw and tears streaming down my face !!!!!

So he had to take the banana stuff off again !

Mikes is much better now , feeling a lot happier and looking well .................its just me again .

Well better me than him is all I can say .

I'd better go now as I'm so tired again , love to all , when I'm up and actually on my feet I'll show you some photo's .

Ami xxxxxxxxxxxx

[willows]

After another session of Make sliding down the wall in my room looking like death and sweating again we've now been to see the POTS man and OMG he's the Biz.

Over the next 6 weeks poor old Mike is having a TTT and an echo cardiograph, ECG, a 5 day heart recording and so many blood test including ones that they inject him with stuff to check all sorts of things.

This doctor in Torbay hospital Devon seems to know his stuff and I was quite impressed, so impressed that I am going to ask my GP to send me along as well !

So far .............after spending sometime talking to the doctor about how Mike was a prem baby and didnt walk or talk until he was almost 2 ( yep, very late ) and then how from the age of 3-4 he's done nothing but catch everything thats going including bleeding from the kidneys at 4 years old so bad that a professor from addenbrookes was called in to sort it and having glandular fever at 10 years old ( no one else in our village had it ) being tested for BT at 7 years old, having croup , pneumonia, chronic high blood pressure, low blood pressure and all sorts of other strange and unusual illnesses ....well this doctor is listening and taking notice............well done !

I dont know about you who have children , but a lad who is 6 foot tall and of a good build to catch so many unusual illnesses at such early ages just doesn't seem right to me ..........and the doctor agrees.

Its almost as if he's copying my bad health from an early age but with different illnesses and its so worrying , but at least the doctor has seen sense to get Mikes 'hitting the deck' sorted out before it starts to effect his college work .

I'll keep you informed of events as they happen ..........................willows....... mikes mum.

[ellen]

Willows, that's encouraging news about the new doctor. Hope all goes well with the tests and you get to the bottom of Mike's problems (and yours as well!). -ellen

[ajw4790]

Hi,

Sounds like you found a good dr. I hope they are able to help!

[willows]

Today 28th August , Mike, Mark and I went to get some of the tests done on Mike for this new POTS doctor.

First he had to have 7 lots of blood taken, which none of us where told about ....................OMG this so called nurse just sat Mike down on an easy chair and started ..............of course the first thing that happened was Mike went as white as a sheet followed by bright yellow , sweating like mad and then started to heave

But did this nurse care ............NO, he just carried on while I held Mikes head up and shouted to Mark to find a sick bowl as Mike was heaving something rotten by now ..........but did this nurse give a monkeys.............NO he just carried merrily on , Mike was getting drenched with sweat and looked like any second now .................and he did , out cold ...........but guess what ?????

The nurse carried on and even looked up at my son and ...........GRINNED at him neither my husband or I can honestly say at this point that had we been alone with this nurse either of us wouldnt have said a few unkind words to him or had done something that would have been something very out of character for both of us , and how my husband didnt drag this nurse off Mike and shove him out of the room , well I'll never know because we both felt utter contempt to this male nurse , his uncaring behavior and the fact that he thought it was somehow 'funny ' at what was happening to Mike by grinning at him.

So with Mike unconscious and me holding him onto the chair and mopping up the sweat that was pouring out of him I at least managed to stop him falling onto the floor with this nurses needles still attached to his arm ...........some 10 minutes later after this nurse had written up all the labels attached to the blood samples ( and no there was no other patients in the room , no other blood samples to mix up present in the room and no medical emergency going on around us at the time , so he was just acting like some uncaring , ignorant pig)

Having finished his paperwork he turned around and said to my husband and I 'when he's finished you can move to the room next door and lay him down '!!!!!! When he's finished !!!!!

As mike started to come around , some 15-20 minutes after blacking out , still sweating and the most awful colour imaginable , Mark hauled him to his feet and literally dragged him out of this little room .........where outside was a load of people waiting for various blood tests, chemotherapy infusions and to see the doctors for tests etc ...........

As Mark dragged poor Mike out of this little room , now with plasters stuck up and down both arms from the tests the people sitting in the waiting room and the staff all looked shocked at what they saw and a ripple of 'Oh , MY OOO' went through the room as my one handed husband literally dragged poor Mike , who couldnt walk , looked like death and who's eyes where rolling in his head .........with help from no one of the nursing staff who just stood and watched us struggle between us .......to a section further down that had beds in cubicles so Mike could lay daown and recover on , Mark struggling eventually manged to get Mike onto a bed and after around another 10 minutes or so he started to look a bit better in colour. I had brought him a sports drink as I knew this may happen , so with some care I managed to get him to 'sip' this over a period of 20 minutes.............only to have this male nurse come back and take more blood ..............and watch as the colour started to drain out of Mike face again.

So what did I do ??????????????

No nothing violent , which is what I wanted to do to this man , after all what mother or father seeing thier child being treated in such an uncaring way wouldnt want to give back some of the 'wonderful care ' that the person was giving thier child ............but I didnt .

Instead I got up went to the other side of the end and grabbing Mikes face turned out towards myself and started talking VERY loud at him , very fast and with some excitment .............'Guess what ' I said all excited ( not )

'I'm going to book us a cruise for next Christmas to the Caribbean ............a suite with two bedroom ..........' even the nurse was looking all excited now ............. Mikes eyes light up ...........' and ' as I started again ' I thought as we have all been so ill for so long and one almost nothing holiday wise , well christmas 2009 will be something to remember.

Blood test over and done again .........more drink given to Mike and of course he started to ask questions about the holiday next christmas.

All way well and I'd been talking to both the boys for around 20 minutes now and Mike and Mark where both looking happy and and fit again .................when yep, he came back again for a third time and more blood. Poor Mikes face was a picture as his right arm was very sore now , so the nurse went to the other side ...............with me grabbing Mikes face again and setting off talking about the shopping spree we would have to do in order to get all clothes we need for the cruise ( blimey what a mum will do for her kids )

So off I went again in full swing , on and on about evening suits , box ties and the number of different restaurants the could eat in etc ....................blood test finished again , and Mike still a nice pink colour and talking to me !

So after this we went to have an echo done on his heart and then he had a 7 day monitor fitted , this can be taken off every day when he showers................which surprised the new nicer nurses somewhat as Mike having had it put on immediately asked ' oh , what about my daily showers '???? which somewhat surprised the nurses as most lads of this age who have to have thier hearts tests seem to use the monitor as an excuse NOT to shower daily

So we cam home .............well almost ..........we had to stop off in Torquay at the bank for Mark and as Mike and I sat in the car we happened to notice a very nice shop , which had some wonderful bits and bobs in including a wonderful Chinese silk/satin bag, with matching padded mirror, lipstick case and coin purse ( which Mike found that matched exactly) the bag is a sort of a cross between emerald green and royal blue ( of you can imagine the colour ) almost like the colour of the gem apatite ............and it matches a wonderful absolutely beautiful Chinese evening jacket I have ...................

So, it looks as if Mark, Mike and I will all being going on a cruise around the western Caribbean next christmas as my wonderful sons just bought me the bag and other bits to go with my jacket for one of our evenings on board!!!!!

It was defiantly the right time to tell them both , I'd kept this idea so quiet for so long and I'd been keeping clothes Mark or Mike had bought me in a suitcase for this for about a year now ( with them thinking i'd lost the plot for some reason )

Mike is over the moon about the trip and the blood test and what happened have disappeared and he's started to look up all the places we are to visit .

Of course you know what I've now started dont you ???

A count down in months , then weeks then days ( as it gets nearer) to the biggest holiday my son has ever been on and possibly Marks and my honeymoon after 6 years of glorious wedded bliss.

Well there's only around 480 days until board the airplane to Miami to start our holiday ..............as long as Mark can fly and is well enough , Mike can fly and is well enough and the same goes for me ............480 days is a long , long time to keep bug free and mobile.

More test and appointment with his consultant in September , I'll tell you any results as they happen .

AMI ....................Mike ( grinning in his sleep ! ) and Mark ( snoring like crazy , hence me down here on the putor) XXXXXXXXXXX

[willows]

Mikes not having a good time of it at the minute , the heart monitor that he has to wear until the 3rd of September which is stuck onto his chest and has an electrode stuck to his side with so called 'extra sticky , almost gel like pads' keep going 'walkabout' in the night add to this the fact he has a plastic curly wire around his neck and this leads to all sorts of strange sounds coming from his room at 2am ....3 am.....4 am onwards.

The poor boy keeps waking up either being strangled by the cord around his neck which with a mind of its own seems intend on adding parts of his pillow or covers to its person , Mike unaware that the cord has taken hostage parts of his bedding does the 'arms above his head and shaking the covers movement ' only to be meet by the cord , which is able to be stretched from around 2 foot long to 3 foot long , suddenly turning into a huge spring which mounts a nighttime attack on him shooting covers , cord and any other bedding caught up in the 'free for all' back at him with whacking him in the nose with some force ........... rather like being smacked on the nose with a cross between an elastic band and a slipper , well that woke him up ! .

Unfortunately the under arm electrode has also taken on a life of there own since entering the house and seems to have one object in life , this being to move upwards in a quiet undetected manner whilst the poor lad is sleeps, then to suddenly attacking him like some crazed hairdresser tearing out his under arm hairs by the roots ......... ...........just visualize the poor lad sound asleep , innocently turns over and then all of a sudden someone armed with a pair of pliers grabbing a handful of hair and pulling the lot out , of course said lad jumps up shouting at the top of his voice in a 'very genteel manner and voice'

(cough , cough) ' oh , dear ..........someone is attacking me ' which leaves no one in the surrounding area in any uncertain terms that he's having body hair being pulled out from somewhere .

Add to this the central heart monitor which should be right smack bang between his breast bones in line with his armpits going 'walkabout' and ending up by his left ear or stuck to his belly button , which if realised without thinking at 3 am in the morning springs back on the stretchy lead whacking him on the forehead or chin and I think I can say Mikes nights are at this time filled with a sort of night time activities that any good sadio masochism would dream of !!!!!

In an effort to bring him some relief I've now taken to strapping Mike's chest area up with that stretchy rubberised crepe' bandage at night , so now he looks like he's been inflicted with some strange condition that grows large lumps about his body.

Mike likens the bandage to how us girls must felt when we started wearing bras for the first time as he keeps wanting to scratch , scratch , scratch all the time ( that brings back memories for me ) but at least he's not being attacked all night anymore..............nope.............now he says its like having a small rubber bra strapped to his chest which is full of itching powder................I dont know , you just cant win can you !!!!

Willows.

[juliegee]

I just wanted to say that you're a wonderful Mom, indeed, to do all that you can to distract Mike during those awful blood tests. The perfect time to spring your surprise! That nurse sounds like a sadist, almost seemed like he enjoyed hurting your poor boy. My son, Mack, 15 y/o, also passes out almost every time he gets his blood drawn. Once, they kept him for several hours in the lab because he couldn't walk. They had a cot set up in back. Occasionally, the nurses don't believe that Mack will pass out & refuse tollet him recline. I usually end up catching him on the way down. I tell him to stretch out all 6'2" of himself on the laboratory floor. Grrrr. I wanted to let you know that you're not alone!

Julie

[Bella127]

I'm SO sorry your son had to go through that! I hope he is doing better now (and you, too, willows - from your fall!). How ignorant of that nurse, and the rest of the staff, to carry on as if your son is "just fine"!! Grrr... it's hard not to speak up at times like this, but I'm sure you didn't want to say anything at the moment at the risk that he would take it out on Mike with more poking/prodding/bad blood taking skills!! That's always what my mom worries about - speaking up at the moment and then having them take it out on me.

I can completely understand what Mike is going through as far as no one believing him that he doesn't do well when having blood taken! I can't count how many times I have told the person taking my blood, "I have a heart condition and get very faint/lightheaded and sick when having blood taken", and yet their response is something like, "Oh, that's just nerves. Everyone gets like that." !!! No, they don't! I don't know what it takes for people to truly "get it". It's obvious that your son was feeling completely horrible, and the fact that that male nurse had a smug grin on his face is just appalling!

I feel for you. It is good news though that you will be going on a cruise for Christmas!! That will be so much fun, and will definitely make for a nice "break" from the medical environment for a while. I'm sure that lifted everyone's spirits.

Thinking about you and hoping you don't have to deal with a situation like this again! (Although, sadly, we have to be prepared with every new doctor, nurse, etc. because you just never know)

Hugs!

Chrissy

P.S. I had my blood taken last week, and when I told the nurse that I get very lightheaded, etc., she used a pediatric needle instead of the adult-sized one. Do you think this would help Mike at all? Just a thought -- it was definitely easier this time around for me with a smaller needle.

[Tessa]

I am so sorry about your son?s experience having the blood test done. And you suffering too.

I am not a doctor, but his reaction seems a Hypovolemic shock. I know, a blood test is not a large loss of blood to provoke such a shock, but with POTS and whatever we have, I guess that our body can easily react as if there was a serious loss of blood causing such a shock.

Treatment includes keeping the patient warm, with legs raised and head down to improve blood flow to the brain, putting a needle in a vein in order to give fluids or blood transfusions, as necessary; giving the patient extra oxygen to breathe and medications to improve the heart's functioning; and treating the underlying condition which led to shock.

Three goals exist in the emergency department treatment of the patient with hypovolemic shock as follows: (1) maximize oxygen delivery - completed by ensuring adequacy of ventilation, increasing oxygen saturation of the blood, and restoring blood flow, (2) control further blood loss, and (3) fluid resuscitation. Also, the patient's disposition should be rapidly and appropriately determined.

I would prepare by drinking plenty of fluids before the test and after the test (fluids and electrolytes to recover).

Also do not have the blood test sitting but lying down with the legs up.

Ask them to get the blood in only 1 tube to fill the others up later (not using one tube after another on him)

Before the blood test, they should control his bp and hr rate too, because if bp is too low, they should cancel the test or start IV fluids at the same time.

That?s my opinion and suggestion.

I hope you can find a doctor who can help you.

My best wishes for you and your family.

Love,

Tessa

[willows]

Thanks for all your replies guys, its so very nice to read all your comments and your help on this .

Today we go back to the hospital to give over Mikes heart monitor and may be have a wander around the town as its right by the sea.

Mike got his TTT test date , its on the 8th October which isn't to long away .

I'm now asking to be sent to this doctor in Torbay as I feel he is really trying to sort mikes probelms out and get a diagnosis , which as you know is half the battle won , so hopefully he may be able to help me with some of my meds etc.

Thanks again all Willows.