Medical History

5/3/2008
Philippos Pomonis
Aged 12.5
Address:Tragaki,Zakynthos Island,
Greece Currently Inpatient at Aglaia Kyriakou Childrens Hospital,Athens

History (from parents)
Previously healthy
Good School Grades
“Hyperactive child,
very interested in football”

History of Trauma (from father)
January 20th 2008
Fell of tractor sideways,driving 50 km/hr
Landed on Head
Loss of Consciousness for around 1.5 hours then walked and talked
Admited to rural hospital on the island, no history available, but said to be“ok” Fitted 18 hours later, intubated and transferred to mainland and ITU

ITU History (Key points taken from ITU’s referral letter to Greek Rehab Centre)
The letter states that following the transfer he stayed in ITU for one month, was extubated on 05/02/2008 and sent on for Rehabilitation on 20/02/2008. Verbatim: “On arrival in ITU the child had bilateral upgoing plantars, his response to painfull stimuli was decerebrate posturing and there was diabetes insipidus. He had a CT performed which is described as having haemorrhagic contusions in the right temporal, left frontal regions and falx as well as a petrous(lithoid) fracture on the right.
A Godman ICP monitor was placed and transcranial Doppler was performed so as to check flow in the middle cerebral artery. At the same time an INVOS transcranial tissue oxygenation measurement was instituted. From the second day of admission he started having high ICP and he was started immediatelly on hypertonic Sodium solutions to which he responded. His ICP then became more resistant and he had to be put into a barbiturate coma with pentothal, with maintenance of his CPP>60mmHg.
He was extubated succesfully on 5/2/2008. He had no problem maintaining his airway and a good ETCO2. It is obvious that there is significant cerebral damage but he is gradually improving. He started some limb movements and has started talking (simple words). Feeding is via NG tube and it seems that he can manage fluids. He is on antiepileptic treatment, Oxcarbazepine. He never fitted in ITU and continuous EEG monitoring was normal. He left ITU with a recommendation for intensive physiotherapy /rehabilitation without delay on 18/2/2008”.
Parents tell me he was on steroids in ITU, which were stopped on the 16/2, this is not mentioned in the letter.
It seems that no preventive measures were taken (seen by inexperienced physio, no splinting etc).
The letter does not mention how many days he was ventilated, the family say he had been of the ventilator for some days before transfer. #For further details of ITU stay, the doctor who signs the ITU letter is Dr Andreas Iliadis, tel +30 2610999807 /782 /345 or Fax +30 2610994683 #


Further Medical History

Arrived in Athens for Rehabilitation at EIA on 20/2/2008. Unfortunatelly EIA does not accept children and is geared for >18yr olds(he was accepted via “political” intervention), therefore doctors there did not feel confident to deal with a child and his medical issues.

So when he developed a high temperature on the first day in EIA (National Rehabilitation Centre) they transferred him on 21/02/2008 to the on call Children’s Hospital for investigation of the temperature. That Children’s Hospital kept him for a few days and then sent him back to EIA on 26/02/2008. There was an issue with lack of therapists at the Children’s hospital, the Ward felt he had complex needs they could not cater for, so having performed a repeat CT,started him on antibiotics(Meropenem, antifungals, high dose methylprednisolone) and got him apyrexial, they sent him back to EIA on Cefuroxime axetil plus most of the other medications he continues on currently, which are listed in the next paragraph.

At EIA the Occupational Therapist just about managed to get a basic functional and splint assessment done when he was moved again to another on call Children’s Hospital where nobody knew him, due to high temperature recurring. Doctors have told family temperature is “central”, not infectious.

I have been given a summary sheet detailing the current admission today, signed by the NHS Pediatric SHO and Senior doctors who care for him. He was admitted for his current inpatient stay on 28/02/2008 with a temperature of 40+Celsius. I see from Lab results that he had indication of infection with a high White Cell count (16.000 with 93% neutrophils), a normal CRP (2), a high blood glucose (steroids), normal renal function, electrolytes, liver function, urine dipstix and microscopy, CXR. Following the admission he had a CT brain which is said to be “no different to the previous” . I have not seen any of the scans myself and a have not seen any of his initial or subsequent Xrays. I translate the CT report of 28/02/2008 verbatim: “the slices were taken every 5mm in films before and at 10mm in films after IV contrast. There is a subdural collection-hygroma of the left frontal region, which is 6mm thick and there is a smaller one of the right frontal region which is 4mm. There is widening of the lateral ventricles and the 3rd ventricle and the temporal rami.We observe that the temtorium on the left side seems to have dense appearance. There are no focal changes nor areas of abnormal uptake in the supra and sub tentorial brain. The basal cisterns look normal. There were no previous films available for comparisson. There is a suspicion of fracture in the right sided temporal-petrous bone”. Obviously this is a report that is very different to the report mentioned in the ITU notes. I can make no further comments.

The blood cultures are negative.He has been apyrexial from the second day of admission. ¨Ηe has been having a high blood presure. He is slowly being waned of the steroids. As at times the BP has been exremely high, with a usual measurement being 150/100 mmHg, he will be assessed both by nephrology and cardiology sometime soon. His medication currently consists of:

Ceftriaxone, Teicoplanin,Methylpredinisolone,Ranitidine, Antifungals, Oxcarbazepine, Low Molecular Weight Heparin and nasogastric feed. He gets given Diazepam at night.

I broached the subject of starting Baclofen and giving Botox but I was told that they have not got local experience in using such medications, so will not use them on the ward. I don’t have prescribing rights (I am a private practitioner called in by the family), so I need to find out what way one can sort that out, if it can be sorted. I could not get a wheelchair either, as it needs to be bought by the family. NO OTHER MEDICAL INFORMATION IS AVAILABLE YET

Current Therapy situation:

Unfortunatelly there are no paediatricians or paramedical staff trained to see to the rehabilitation of children in the Childrens Hospitals in Athens, although they are the best such hospital services in Greece. In the Hospital he is in there is no therapist for Speech and Language/Swallowing and no one who works with communication. So I have asked a private practitioner to visit the hospital to assess him. There is no Occupational Therapist to assess and splint him. So another private practitioner will visit. There is a very willing young physiotherapist on site who tries his best, but I have had to call someone extra with experience , another private practitioner to come in for physio. The lack of NHS paramedical staff is serious and the lack of knowledge as well as free time and the space and equipment to care for patients is profound in this underfunded service.

I think the best for this child is to move him to a “normal”long stay ward with intensive therapy facility /rehabilitation centre, which is not available in Greece.

(It is an impossible task to be running around, having to negotiate with therapists in the private sector as to who can be kind hearted and flexible enough to come in to the state hospital and fight against the odds, getting a bit of intervention started).

Description of Current Clinical Status

(see the video which the family has uploaded into their blog…it is in multiple video type formats divx,flv and adi , it could not be mailed due to size and also getting sent back as spam protection systems do not let it arrive, it gives the general picture but is not a good exam as child was terrified, it was only the second time I met him briefly that it was filmed…).

Phillipos has been lying in bed, raised at 30 degrees, for the last 1.5 month, although I am sure he could now manage to sit in a chair. He is as tall as the bed (1.68 cm). One small pressure sore on one of his shoulders. There is a remnant of a nearly healed surface injury on the back of his head. Venflon in foot, nasogastric tube in situ for enteral feeds and loosing weight (visually) according to family.

Four limb involvement ,spasticity in arms much more that legs, assymetrical in the arms, symmetrical in legs (probably left slightly more), in the legs the spasticity is minimal , proximaly. Exremelly stiff pectoralis major on the left.

Terribly upset when he met me. Crying “AAAAA” openmouthed in a stop-start fashion (apparently he can go on for hours), so I could easily look deep into his thrush filled mouth . Understands everything said in room. Eventually laughs at jokes and becomes a peacefull and visually attentive boy.

Communicates by shutting his eyelids. (Two weeks ago spoke in short, easily understood sentences, I need to find out what has happened to stop that). Will not let one examine,spasticity increases and he cries, afraid of what will happen. Eventually proved he could drag his legs upwards, it seems symmetricaly.Nurses have told mother he helps a bit with body movement when they roll him in bed. I saw none of this. Can’t get him to wigle toes or cross legs across each other and he can’t lift them of the bed. At present there is not a problem at the ankles. Tone increased more on the left than the right.

The arms are in a sorry state. Left already has a 30 degree fixed flexion contracture at the wrist, which is in ulnar deviation.Fingers fisted so tight that nails are bitting into the flesh, they correct. Left arm and elbow in slight internal rotation and the whole arm is completely straight. One gets near full range of movement on bending the elbow but at the shoulder there is a lot of pectoralis major pull and the shoulder is very difficult to get moving ( I have not seen Xrays, it is not fully out of joint clinicaly). Interestingly, this arm has been left like that for 6 weeks . The right is the more typical spastic upper extremity, both elbow and hand, thankfully no fixed flexion contractures, but going that way fast as well. He has minimal purposefull, non spastic, movement of fingers.

Vision impossible for me to assess, seems not to have visual field loss and nods yes to the question “can you see exactly the same as before?”. Hearing probably fine. Can smell. III-IV-VI, eye movements normal. Blinking a bit slow. Symmetrical motor V and VII. Chewing on demand feebly, no drooling, no dribbles. Tries to cough on demand. (all these responses feebly executed, with a 30 second delay, same as the purposefull closing of eyes for a yes or for a no). Trapezoids and deltoids ok and looking down his throat there is a central uvula, and posterior stuctures are high and symmetrical and do not seem to move with the AAA phonation. I did not examine for gag and corneal reflex, as I want to have his confidence first and will get some feedback from the Speech and Language Therapist.

In nappies although it is said that he can produce urine on demand and mother says he manages to pass wind and stool on demand as well (nappies used as he is in bed and stools around 7 times a day due to ng feeds).

Interventions:

To date there has been no serious attempt at rehabilitation, not even prevention of deformity.

I have not got the means to prescribe and administer what he needs (Baclofen, Botox) as well as to get the right environment for therapy sorted (we even lack a wheelchair, we will have to rent it, if we can). But by working on contacts and negotiation, I might suceed to get something partialy sorted.

I hope sometime over the next days he will have the following:

* Speech and Language assessment (clinical swallowing assessment)
* Speech and Language Communication advice (I hope, otherwise I will do it myself)
* Occupational Therapy assessment (splints )
* Regular Expert Physiotherapy has been started at long last
* No hope for neuropsychology,social work etc involvement
* I have no idea of the quality of the therapists input, no idea whether they will write a report for you and can’t do anything about that, as they are independent practitioners.

Another problem is that most of us who got involved over the last days are private practitioners and this is a huge financial burden. But it has to be done, in whatever way, as the NHS does not have staff. At least he has an NHS bed. That is about it and that is why I can’t care for this young man in this country and why he needs to move from here fast.