Daily Update of Saima Ammar
| August 11 |
| Thank you very much for your constant support and attention. I have uploaded the recent reports of Saima on the same address if you wish to go through that, you are welcome. The MRI report is 3 days old, and 3 days back the breathing rate went down to 58 and the doctors had to put her on the ventilator. They have started plasma exchange under the supervision of Dr. Ismail Khatri. Doctors wanted to do one more MRI but due to the ventilator, it is not possible. Currently, she is still in the ICU with ventilator. With the second plasma exchange however, her body responses have slightly improved. She is occasionally moving a leg and opening her eyes. Her vitals are absolutely normal. Today, Dr. Khatri decided that the steroids’ dose of 1gm was not enough. He in consultation with Dr. Zaeem has decided to continue steroids for the next 5 days in combination with the plasma exchange. They say that only an MRI can tell the progression of the disease but she cannot be taken off ventilator. Today they did a CT scan where there was no evidence of PE but the reports say that a possibility of INFACT cannot be ruled out. Her Pulmonologist Dr. Maryam was of the opinion that after 4 plasma exchanges, they will give a break of 2 days and continue for another 3 days. Dr. Zaeem is constantly in touch with Dr. Khatri and been extremely kind. I am looking forward to any advice or guidance from all of you for the betterment. I am thankful to each one of you profoundly. And Dr. Khatri, the wonderful doctor and great human being I thank you all and lets all pray for her better health.I will be uploading the recent reports as soon as I get them. So even if I don’t email you can check the new reports on the link here http://saimaammar.wordpress.com/clinical-reports/ |
| August 13 |
| Since last night, Saima has developed klebsiella in tracheal c.s and E.Coli+entrobacter in urine c.s. Her Hemoglobin level has dropped to 6 with no improvement in physical condition. Opening her eyes occasionally but not following the commands. Her upper body, arms and the neck region are not responding to stimulus. Dr. Khatri wonders that she has developed a serious blood infection which is affecting the improvement of brain. He has given plasma exchange a day’s break and reduce the steroids dose to 500mg for today instead of a 1000. They will use blood today to improve the HB level. They are also considering removing the ventilator for a while to see. I am not a doctor so I may be missing a lot of information. But since Dr. Zaeem and Dr. Khatri are constantly in touch I hope this case can be discussed and improvements may be suggested. I must give all the credit to Dr. Khatri for appreciating your generous advice. |
| August 14 |
| Doctors are suspecting MS or ADEM can be her problems. It all started with upset stomach. Then her right side went numb and we rushed her to the emergency. Since then her situation is deteriorating day by day. Currently she is on ventilator since last 4 days. She can open her eyes and move her legs but cannot follow the commands. Doctor Ismail Khatrai, a renowned neurologist, is currently treating her. Initially they gave her 5 injections of steroids per day 1g. then after five days of steroids they started plasma exchange. They did exchange the 17 plasma for 3 days and then give her a break for a day. Since last night, Saima has developed klebsiella in tracheal c.s and E.Coli+entrobacter in urine c.s. Her Hemoglobin level has dropped to 6 with no improvement in physical condition. Opening her eyes occasionally but not following the commands. Her upper body, arms and the neck region are not responding to stimulus. Dr. Khatri wonders that she has developed a serious blood infection which is affecting the improvement of brain. He has given plasma exchange a day’s break and reduce the steroids dose to 500mg for today instead of a 1000. They will give her 2 pints of blood today to improve the HB level. They are also considering removing the ventilator for a while to see. She is obviously not fit to fly. I’ve uploaded most of her reports on http://saimaammar.wordpress.com/clinical-reports/ . But recent reports of CT-Scan will take 24 more hours. I wanted to call you but not sure what Pakistani time can I call you if you can guide me on that. I will call you ASAP. Below is my e mail to a doctor friend 3 days ago that might help you in diagnosing her problem. I am not a medical professional I may b missing a lot of information. Please do guide me what info you require.Review of Dr Zaeem, CanadaHer recent MRI shows improvement in the degree the brain “lights up” when they administered gadolinium, which parallels the clinical improvement. Typically, what you expect in such cases is gradual improvement after few plasma exchanges. I am very hopeful that she will do well. |
| August 15 |
| Her ventilator has been taken off. Doctors have done tracheotomy. But she on oxygen only. Initially oxygen levels were 60 % now they have been reduced to 40 percent. No improvement in physical condition. She can open her eyes and move her legs – but cannot follow the command.Dr. Khatri has been gracious to keep me posted and we are in constant touch. I am also consulting some of my colleague neurologists here who specialize in MS alone. |
| August 16 |
| 5 sessions of plasma exchange completed. Doctors have decided to go to 2 more session on alternate days. |
| August 17 |
| Infections levels are reducing no improvement in physical condition. Doctors will do the MRI after last 2 plasma exchanges |
| August 18 |
| Last night her breathing and heart rate went too down so the doctors put the ventilator back on. CT scan is underway to check the progression of the disease. Potency of steroids has reduced to 300mg now. She is also getting 2 antibiotics for pneumonia and urine infection. Her physical condition is the same – she can move her legs and eyes occasionally but cannot follow a command. |
| August 20 |
| Her condition is deteriorating. The BP is going down and maintained through medicines. Doctors tried to take the vent off this morning but could not due to the respiratory issues. Dr. Arsalan thinks this respiratory problem has to do with the neuro effect where the patient’s brain forgets to breath. Doctors did not even take the chance of a CT scan. One plasma exchange is left which may be done today or tomorrow. She is on antibiotics for infection cure and steroids twice a day (300 mg) On the other hand her physical condition has improved with a better response level. She is opening eyes on command. Dr. Arslan even said there is more power in the left leg today. Still he did not sound very hopeful. He said we might give IV IG’s, the life saving injections, but he was very concerned about its side effects which might affect the kidney. Rest is the same. Though she cannot move her arms, still there is lesser swelling on arms and face. She is yawning and probably trying to speak which is not possible due to the tracheotomy in doctor’s opinion. Any advice from you all is welcome. |
| August 22 |
| There are some good days and there are some bad days. Today was not so positive. The doctors took off the ventilator yesterday but today, 9:00 am in the morning her breathing rate went down and the lower blood pressure dropped to 35. She is also having respiratory issues so the vent was put back on.During the past 24 hours that she was off ventilator the doctors did not take the risk of an MRI. Her responses are the same but today she looked a bit fatigued and tired. Dr. Arsalan finally decided to go for an IVIG. It has complex mathematical system but what I understood, is that they multiply the body weight by 0.4 and that decides the dosage. Since her body weight is 85 kg, it came out to be 34 but they are giving her a 32mg dose for 5 days. The bottle is 5mg dose and takes a long time injecting 3 and 3.5 of them. So far it has had no impact. The pulmonary aspiration that she is on did not go well. Today as it was reversed as if the body didn’t accept it. It was the first time it happened but the staff told me that it wasn’t something to worry about. She looked fragile and weak but certainly opens her eyes and listening to voices. She still not following commands but tries to open her mouth – makes tsk tsk sounds and licks her lips as if she is thirsty. I keep updating her website so if you want to see the latest reports they are uploaded here http://saimaammar.wordpress.com/clinical-reports/The pulmonologist Dr. Farhat told that IVIG in her age will not have any adverse effect in the kidneys.I know she is going through a lot but knowing her, I have an intuition that she will come back as she is a fighter. |
| August 23 |
| Today was relatively a better day. So far she has had 3 IVIGs and it did not have any adverse reaction on her. The doctors took off the ventilator at 9 am today and she is still breathing fine. But Dr. Momina did start talking about the overall situation. She said that doctors have tried every available option in the world for this disease. According to her, she has not responded enough to any of the treatments. She also mentioned the long term rehabilitation plan and to think in terms of years now. But she also, like all of us, is hoping for the miracle. She thinks that the outcome of the IVIGs can only be seen after 4 days. So we are all hoping and praying for a miracle. Her physical condition otherwise is static, opening mouth and eyes, moving her legs but cannot follow a command. What I understand from the whole conversation that the more she stays out of vent better the chances of her recovery are. |
| August 24 |
| Today, Saima was absolutely fine till 6 pm. By then it was 33 hours without the ventilator. We were hopeful that if this continues we will have the MRI done by tomorrow. But at around 6:00 she developed increased amount of secretion and when the doctors tried to extract it through a machine, they realized that it was thickening and hard which was creating a hindrance in the respiratory path. In the meantime, her breathing rate and heart rate was going down. When her heart rate went down to 64 they decided to put her back on the vent. I saw blood in the secretion when the staff was washing the machine. Since then, her reflexes went slow. Her BP is going down – last I saw it was 78/52. The doctors are trying to give her some medicine to increase the blood pressure. They also suggested a wire that goes through the neck and helps the patient to receive an extra amount of medicine. She has also developed fever, 100.5 degrees and doctors are giving medicine for that too. Another thing that came up recently is his quantity of urine her body is producing. Last it was 200 ml per hour, normally it is not more than 40 ml. It looks like she is finding it difficult to open her eyes. Reflexes are slower than usual as well. The 5th IVIG was given today with 5 more to go. They give the injection at 2:30 in the afternoon and then another at 2:30 in the morning. She doesn’t look good right now. Let’s just pray for her health and a speedy recovery. |
| August 25 |
| It was an ok day. Saima was without ventilator till 9:00 pm. Her responses were the same but at 9:00 pm her breathing rate starting going down and doctors put him on the vent again. So far she had 7 IVIGs with three more to go. It didn’t have any positive impact on her condition. Her urine production per hour is quite abnormal. Today it was 250 ml per hour. Doctors have sent some urine sample to see the impact of IVIG s on her kidneys. Result will take 72 hours. But the best part of the day was when I asked her to smile and she did SMILE THRICE. |
| August 27 |
| It was a relatively better day. Dr. Memoona visited Saima in the morning and she said that after the IVIGs we have exhausted our treatment options. No further treatment for this disease is possible. The impact of IVIGs will show in a few days – let’s wait and see the outcome. Dr. Aftab, in charge of ICU, also visited and said that infections are reduced. They are still waiting for the blood culture and urine sample report, due tomorrow. He was of the view that it is advisable to shift her to UK if we can arrange for an air ambulance. But the family is of the view that only when she is completely off the ventilator we will think of this option. On the other hand, Saima’s condition is improving. Doctors took the vent off in the morning. So far she is on her own and fine. For the first time since she is admitted we noticed mental awareness and response. She was on instruction but she couldn’t move her leg even when instructed. There is still no movement in the upper limbs. But her mental awareness was certainly noticeable and encouraging.I will try to upload the results of urine and blood test by tomorrow evening. Please keep checking here http://saimaammar.wordpress.com/clinical-reports/ .Most of the time in the morning her responses are good but later in the day when she develops extra amount of secretions and while extracting those secretions she needs the vent. Dr. Aftab is giving the instruction to reduce secretions through medicine. Options of doing an MRI with a portable vent were discussed but no instruction so far has been given so far. |
| August 28 |
| The only good thing about today was that it’s been 31 hours and she is without the ventilator. Dr Memona visited her in the morning and she was happy with yesterday’s responses. She suggested that if we want to move her to UK, it’s not a bad idea at this stage. She explained that there is no further treatment they can do in Pakistan they have exhausted their options and now they are only managing the patient. She was of the opinion that Saima can get better rehab in UK and there is a less chance of any infection there. They found few new infections in her tests. She has advised the staff to stop one of the antibiotics and start a new one. Dr. Aftab, in charge of ICU, also visited her today. He also suggested that it’s advisable to move her to UK and since an air ambulance has the facility of a ventilator so it’s practical to shift her. He also admitted that Shifa ICU can bring its own infection to the patient. What I don’t understand is that few days back these were the doctors who advised us that she is not fit to fly. Why now? On the other hand her physical condition was not so good today. There was no response. It looked that she is in deep sleep or in a semi-coma like situation. She looked weak and fragile.It was a bad day after a very good day yesterday. One good day comes after a bad day. It has been the pattern since the day she was admitted to ICU. I am hoping and praying for a good day tomorrow. |
| August 28 |
| Currently she is having the following infections. I have no idea whether they are hospital related or her illness related. 1. PSEUDOMONAS + ECLI2. klebsiella + VE IN3. TRACHEAL + C/S4. CANDIDA + ALBICANS + VE IN Urine C/SI have no clue what they are and what’s the intensity but the doctors have told me they are treating them with some antibiotics. Please guide me. I will get the names of antibiotics by tomorrow. It’s been almost 36 hrs that she is without vent but her responses are going doing but vitals are stable and normal. |
| August 29 |
| Yes it was a better day. Saima stayed without ventilator for almost 61 hours but at 10:00 pm tonight she again developed some secretions and while extracting that her heart rate was going down and she needed the vent again. In charge of ICU was of the opinion that since her vitals are stable so they might take the vent off in 5 to 6 hrs. Dr. Sardar Aalam from UK visited her today and had a session with Dr. Ismail Khatri. He was of the opinion that there is no point of taking her to London at this stage. Family should think of London option in a couple of month’s time. He also reassured that the protocol of her treatment is absolutely right; any good hospital would have done the same in such a situation. In the morning doctors were of the opinion that she should be shifted to the room tomorrow but since she was again on the vent by 10:L00 pm, I doubt they will take the chance of shifting her. Dr. Sardar Aalm also told us that she is on the recovery path but no one can tell the exact time of recovery. He told that it will be a long bumpy ride. He saw the reports and was of the opinion that most of her infections are Hospital/ICU related.This creates confusion that if we shift her from ICU to save her from infection then what if she might need the ventilator emergency care? Please advice. I managed to get the list of medicine she is been given every day and was shocked to see the long list. 1. INJ TAZOCIN 4.5 mg TDS (19 Days)
2. INJ TARGOCID 400 mg OD (16 Days) 3. INJ TIENEM 500 mg TDS (2nd Day) 4. INJ VANCOMYCIN 750 mg BD (2ND Day) 5. INJ RISK 40 mg IV OD 6. SYP DUPHALAC 30 CC OD 7. INJ CLEXANE 40 mg S/L OD 8. TAB CHEWCAL 1 x OD 9. TAB REQUIP 0.25 mg BD 10. PHYSIOTHERAPY BD 11. Chest PHYSIOTHERAPY TDS 12. SYP MUCONYL 2TSF TDS 13. INJ DIFLUCAIN 200 mg IV OD And below is the detail of the liquid diet she is getting. 1800 CALORIES BLEDERIZED DIET 250 + 50 CC H2O q H Via NG In the above list injection 1 and 2 have recently been stopped. She was awake most of the time today and was responding to commands like blinking eyes and smiling. There is still no movement in her upper limbs. |
| August 30 |
| It was an ok day. There were moments when she was awake but most of the time she was sleeping. When she was awake I noticed unnatural jaw moment as it was not in her control. Her vitals are stable and she is off the vent since 8.20 am.The doctors have started advising us to take the chance of keeping at home with aggressive nursing support. Dr Shazli was of the opinion that it’s the only way to keep her away from ICU related infections. They also suggested that it’s in the benefit of the patient as they are just managing the infections at this stage there no further treat available anywhere in the world. He also explained that her body is fragile it can catch any infection at any minute and infections do slow the recovery process. I had a meeting with Dr Khatri he is ok with keeping her in ICU for next few days and then gradually shift to the room and then to home. We might have to buy our own vent and other equipment including the dedicated nursing staff even if we shift her to the room. Another doctor in the late evening suggested she should be moved to UK ASAP coz of better rehab facilities. Dr Tariq Tasaaduq has the same opinion. It’s all very confusing. |
| August 31 |
| Today certainly was a very good day. Saima has been off the ventilator since last 42 hours. After 26 days doctors gave her diet orally. She swallowed it well. Initially she had few spoons of yogurt then in the dinner she had clear soup, blended diet and fruit yogurt.A speech therapist came today to help her train to speak with the trachstomy and Saima did try to speak but when she was trying hard it looked that she might spit or vomit. Her vitals were stable throughout the day and most of the time she was awake and responsive. She did manage to follow the commands at time. Occasionally her jaw movement was out of her control. Dr. Khatri did send a message to the family that it’s in the benefit of patient that she should be taken home to save her from hospital related infections. We have finally decided to take her home as soon as we have a complete set up for her. I guess it will still take at least 5 days.Doctors will try to attempt an MRI tomorrow if she stays out of vent. She kept smiling throughout the day but at times it looks that she has lesser control on her facial muscles. I have up loaded new test on the website http://saimaammar.wordpress.com/clinical-reports/. Please have a look. |
| September 1 |
| Today was an ok day she did take the diet orally and was awake and responsive throughout the day. Last night after 44 hours she needed the ventilator for only 30 mins. Today she is fine without it. Doctors have advised us to take her home and arrange for nursing staff and equipment for her. We did manage to get the latest equipment for her but as far as qualified ICU trained nursing staff is concerned it’s extremely hard to get in Islamabad. So we are in a fix we want to save her from infections but can’t find good nursing staff who can mange ventilator and suction machine. Don’t know what to choose? |
| September 2 |
| Today was a difficult day for her. She was with out for quite some time. It is difficult for her to breath. The doctors let that happen to see how much her body can take but at 7 30 pm her breathing rate started going down and they put her on vent again.Though it was a difficult choice to make but the family decided to shift her at home. We have almost completed the arrangements. Buying equipment was the easiest thing but finding good ICU trained nurses was quite a task. We are still working on it and in a couple of days Inshallah we will sort this out. I still fear taking her home with vent but almost all the doctors are of the opinion that it will be good for her. She has developed some rashes today doctors were of the view that they are because on some reaction of any medicine. They have started anti-allergic for it but till 1:00am it was still red and looked painful.She didn’t take the diet orally today and doctors decided to go for PEG TUBE it’s a small surgery of 20 mins .they think it will be easy to mange and help her get the maximum nutrition. Her dietitian was of the view that she needs high protein diet at this stage. She looked sleepy and pale today but was quite responsive to Dr. Khatri in the morning. He is quite happy with her progress. |
| September 3 |
| She is off the vent since morning. There is sudden increase in the rashes its growing all over her body her neck, back chest and her arms are full of it. Dr Khatri thought of starting some steroids for it but since her immune system is not too good he decided to wait. Doctors have sent her blood culture which will come in 72 hours. Her WBC was going down today it was 4200. We have almost arranged everything for her at home and by Sunday her room will be all set with a home vent but Dr. Khatri said he will not advise to take her home in this condition. He said her brain activity is slightly improving every day but the infections are slowing down the progress.She did speak twice today 2 clear words after almost 24 days. Most of the time she refused to takes the oral diet that’s why an NG was used. Due to her condition doctors postponed the PEG TUBE procedure for couple of days. |
| September 4 |
| It was a mix day. There were some high n low points. She has been on the vent throughout the day. Her rashes are still not improving. She had the small surgery of PEG tubes today and she was running fever almost 100. The blood culture shows some serious infections in her urine and blood. What I understand these infections are serious than the previous ones. The doctors have started a new antibiotic with cortisone 100 mg.Her NG tube is out and in the evening after almost 25 days she was talking she said many small complete sentences. Her conscious level was better in the evening. Dr. Khatri said the neurologically she improving every day but the physical condition due to infections is quite contrary to that. Her WBC is going down today it was 3200. We have created a blog for her with her new pictures and few poems, people have written for her. You can visit this blog and send her your prayers and best wishes. Blog link: http://saimaammar.wordpress.com |
| September 5 |
| Saima s conscious levels are increasing. She talks even with the track. Reply to the questions smiles on the relevant things. Her diet because of PEG tubes is good with high protein. Last night a doctor in ICU saw for the first time moving her hands fingers which is not less than a miracle. She is on the vent since last 24 hours. Her WBC is going down alarmingly. Yesterday they were 3200 today it was 2400. There is a swelling on her arms and feet. Doctors did start colamycine antibiotic but since she was getting drowsy because of it they stopped and started another antibiotic. Her urine and blood culture report is still awaited. But doctors do suspect some serious infection in it. Her hp was also low today it was 8.5. They might give a point of blood today. They won’t allow us to shift her to room or home in the current situation. She is defiantly improving neurologically but her physical condition due to infections is not too promising. We have created a blog for Saima’s friends with her new pictures. You can send her your prayers and best wishes. Blogs link is: http://saimaammar.wordpress.com. |
| September 6 |
| There is very good increase in saima s conscious levels. She was awake throughout the day – talking all the time. There were times when she wasn’t making any sense. At times she kept repeating one word, but there were times when she was responding to the questions properly. Her voice is becoming loud and clear. There is an element of anxiety and irritability in her behavior and she mentioned many a times that she is in pain. Doctors think it is a good sign that she is feeling the pain. Dr. Arslan visited her today and he said he was more than satisfied with her responses. On the other hand her heart rate is alarmingly going down. Lowest it went to 39 and the emergency doctors said if it goes below 35 they give a dose of an injection 5 mg. I am forgetting the name of the injection but right now her heart rate is fluctuating between 46 and 55. There was also problem in her urine production once it totally stopped but then they gave her LASIX and she responded to that. This has increased the urine output. She has huge swelling on her arms and they have become stiff. The swelling is also traveling to her legs and feet. Doctors are not worried about the swelling. Dr. Kamran Rasheed visited her today and he was of the view that the swelling is because of reaction of an antibiotic. (Again forgetting the name). Her blood culture result came today there are infections in her blood and urine – doctors say the blood infection is a very minor but the urine infection needs more care. There is a slight increase in her WBC yesterday it was 2400 today it was 2500 but still it is considered a good sign. The doctors want to keep her few more days in ICU then they might shift them at home. Dr Shahzad of ICU was of the view that brain edema cannot be a reason of low heart rate it might be some infection or reaction of any antibiotic. |
| September 7 |
| It was a relatively a quite day. She was in anxiety till 11:00 am but after that she was quite and calm. Her responses were better her voice was loud. She was off the vent since 8:00 am then they put the vent again at 6:00 pm for one hour and so far she is still without vent.Her heart rate has improved tremendously today it was near about 80 throughout the day. The only problem we could notice other then the vent was her urine output. It was 50 ml in 4 hours. Doctors have put her on a low dose of LASIX which is so far yielding the results. Last night after a long time doctors gave her few spoons of ice cream. She liked the taste and kept thanking the doctors. There are some certain physiological problems which she has to face with improved consciousness. She could feel that her arms are not working and all the morning she kept asking everyone where my arms are.I am daily up dating her blog, please keep checking it. Blogs link is: http://saimaammar.wordpress.com/ |
| September 8 |
| Today was again a calm day. She was off the vent since last night and was again put on vent at 10:00 pm tonight. Her heart beat and blood pressure was normal throughout the day. She didn’t need another LASIX and her urine output was ok. She was drowsy and was responding only when she was asked a question. Doctors have found 2 infections in her urine and blood culture. They found flavobacterium in her blood and E.Coli in her urine. What I understand from this that the blood infection is not so serious but the urine infection needs special care. They are giving her injection – SULZONE. Tomorrow they might try to shift her in the room with the home vent and after Eid Inshallah they are planning to send her home. They might take her out on wheelchair tomorrow in the hospital garden which will be a big change for her. They were also planning to give her ice cream after one hour. I am glad she will finally taste something nice. Her WBC was 3300 today. Yesterday it was 3400. I have uploaded her latest test results on the website. We are praying day and night for her well being.Please share your prayers and comments on the link http://saimaammar.wordpress.com.
(Click on COMMENTS page to post your comments/prayers) |
| September 9 |
| Mashallah, Saima stayed stable throughout the day. Her vitals are improving and she is without vent since last 20 hours. Today her WBC was 3300 and it seems that her memory is also coming back in phases. There are times when her responses are very sharp and at time they are slow. Dr Arslan advised that it is good to take her home after Eid holidays which is Tuesday 14thSeptember. We also don’t want to take any chance. At home her room is equipped with the most modern equipment and ICU trained staff (24/7) has been arranged. Keep praying for her speedy recovery. |
| September 10 |
| Saima is doing fine today. Her vitals are stable. WBC is 3900. She is off the vent since last 45 hours. She kept sleeping throughout the day. The more she stays away from the vent more fragile and weak she looks. |
| September 12 |
| Saima is much better now. Her vitals are stable. WBC is 5900 and most importantly she is without the vent since last 3 days. Her conscious level varies from time to time but most of the time she feels drowsy and sleepy. Doctors plan to send her home by Tuesday. There is still no movement in her upper limbs and rest of the body movements is also weak. |
| September 13 |
| Saima is without the ventilator since last 4 days though in the process she has become very weak but her vitals are stable. It seems that it is difficult to talk to her. Her voice is very weak and you can barely hear it. Doctors are planning to shift her home tomorrow because they think since there are no further medications for her neurological ailment so to prevent her from the hospital related infection it is in her benefit to go home.A panel of doctors will meet tomorrow at 11:00 am to make the final decision. We plan to shift her by 3:00 pm and hopefully she will be home by 3:15 pm. We have arranged a good quality ambulance with oxygen to transport her as quickly as possible. The drive is not more than 15 mins in normal hours. Her oral eating has improved. I fed her a bowl of fruit yogurt – she liked and actually wanted more of it. Her conscious level has increased, its now 13. Her WBC was 5500 today and yesterday it was 5900 which I suppose is the border line case. Her BP was on the higher side 160 -95. She is been given oxygen contentiously and with oxygen rate 10, her breathing rate was 92 – normally I guess it has to be 99. Our arrangements at home are complete. We have bought the best of equipment including a home ventilator. Good quality staff has also been arranged. Things are looking good but in my heart I am scared. I hope and pray that everything will be fine at home. |
My Correspondence with Dr Ismail Khatri, in which he has tried many combinations of medicine and then recommended Brig. Moddat Rana for further treatment.
| 18th October 2010 |
| Dear Dr Khatri Thank you so much for giving your valuable time to discuss the current health situation of my wife Saima Ammar: MR No. 472591. I am also extremely grateful to you for giving her an appointment on Thursday 8 15 am. I know your busy schedule and value of your time so it truly is a privilege.I thought since you have been kind enough to give me your e mail address. I find it a good opportunity to share the current health situation of Saima with you in order utilize the appointment time to the fullest. Saima is Masahllah improving and for her current improvement, we all are indebted to you, and your care and concern for her. Following is the current situation of my wife. VitalsBP 110/70 -120/70Pulse 110 to 120 /minute
O 2 Saturation More than 95% on room air Since she was discharged (16th September) she didn’t need the ventilator Chest No need of suctioning. Very little secretions. She can cough very well and occasionally spits the phlegm. Abdomen Diet 1800 calories via PEG TUBES. Which includes fresh juice, blenderised vegetables, cereals, chicken soup, minced meat and mushrooms etc. Occasionally she can eat orally which includes banana, toast, fried egg, chocolate, biscuits and few sips of tea. She swallows the oral diet well and at times enjoys the taste. She does not complain of dyspepsia, nausea or vomiting CNS. She sleeps normally. Her memory works in flashes at times she remembers everything with the minutest details and at times she can even forgets the names of the closed family members. She can recognize people on their voices. She can move her neck left, right, up and down on command. She can also open her mouth on command. She can’t move her legs and arms on command even when she tries too but there are times when she is in a healthy mood and she tries her maximum flickers of contractions are seen in the muscles. She is talking normally but feels pain due to the track. Physiotherapy She is having 2 sessions of physiotherapy everyday which has improved her neck movements and there are involuntary movements in her legs and arms. According to her physiotherapist Dr. Furqan (Fauji Foundation Hospital) her muscles are in spastic stage now and reflexes are exaggerated. She goes out in the lawn twice a day for an hour or 45 mins on a wheel chair and enjoys the fresh air. She complains about pain in her body but cannot describe the location of the pain. There are times when she is extremely agitated, upset and angry. For pain she is getting 1 tab of brufen 200 mg every day. Cultures 29/9/10 Tracheal Culture Pesudmenous Which is sensitive to all kind of antibiotics 7 days oral ofloxion 500 mg was given 29/9/10 Urine Culture Candida 5 days oral fluconazole 100 mg was given Gynecological issue and history She hasn’t had her periods since 4th of august. But before the attack of MS/ADEM she was suffering from continuous heavy menstrual bleeding for 4 months. She took famila low dose for one month but it didn’t stop the bleeding for one day. Next month she had contraceptive pill Diane 35 for one month which stopped the bleeding. When she was admitted to the hospital it was her last day of periods. 2 months before she was admitted to the hospital she had had her DNC done to remove polyps in her uterus from Dr Yasmin’s clinic. Two years back after her 3rd ICSI cycle she was diagnosed with empty follicle syndrome Respiratory Situation: Tracheotomy tube is closed with Sunni plast so that she can talk and traechastomy balloon in deflated. She is breathing through nostrils and maintains Oxygen saturation on 0.5 or 0.25 liters/minute and even maintains oxygen saturation up to 4-6 hours, without oxygen. Her bowl movements are normal but occasionally she needs PR. Labs 16/9/10 1 9/9/10 25/9/10 12/10/10 Sodium 141 140 139 139 Potassium 3.7 3.4 4.2 4.0 Bicarbonate28 26 24 24 Chloride 106 105 102 100 Creatinine 0.5 0.5 0.4 0.6 BUN 16 11 19 05 Urea Glucose 119 100 100 123 Hemoglobin12.2 0.9 11.6 12.5 MCT 37 34 36 37 MCV 92 92 92 96 WBC 7600 5900 6700 6600 Palette231000 209000 239000 251000 Medicine Currently she is having the following medicine 1. TAB Prednisolone 5mg Half tablet BD 2. Tab Tinize 2mg Half Tablet BD 3. Tab Requip 0.25 mg 2 Tablets BD 4. Tab Iberet folic 500 mg 1 Tablet BD 5. Cap Risek 40mg 1 Tablet OD 6. Tab Brufen 200 mg 1 Tablet OD 7. Tab Laxotinal 3mg 1 Tablet At night 8. Tab Xanax 0.25 mg 1 Tablet as per required 9. Atem Nebs 4 times a day 10. Tab Motillium 10mg 1 x TDS 11. Syp Dupmlac 30 ML TDS The Plan · Thursday 8 o clock we will meet you for the consultation · 9:30 we have the appointment for MRI, with your consultation · 10:30 we have the appointment for OR to remove the track, with your consultation of course.
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| 20th October 2010 |
| Assalamoalaikum,Thank you very much for all the effort you and your family have put in for your wife.I must admit that the summary that you have sent is better than many of our doctors can every write. It is a blessing of Allah that she has recovered so much. I see some room for adjustment in medications which will InshaAllah make her feel even better. I will make the necessary arrangements when you come on Thursday InshaAllah.Sincerely,Ismail A. Khatri, MD |
| 24th October 2010 |
| Dear Dr KhatriIt was extremely kind of you to see Saima Ammar (MR No 47-25-91) on such a short notice.We have had 2 MRI s of brain done (with n without) contrast. I am sure u ll b aware of the results by now. Spinal cord MRIs could not be done because of saima s increasing anxiety and constant movement. She is much better but since her tachstomy has been replaced with new talking track of sheely doctors say she will take some time to adjust with it.The gynecologist Dr Nabia did see her and recommend few tests. All her tests results are in the normal range but prolactain level. Its suppose to be between 15-26 but in saima s case it was 43.5. I ll soon discuss the results with Dr NabiaWe have also sent new track cultures as one can hear the sounds of veezing in her chest which might be the result of any infection but she does not have fever.
Her oral eating has improved in the last couple of days. As we discussed if you can kindly suggest the changes in medicine on e mail it ll b a great help. Thanks for your care and concern. Ammar Masood
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| 25th October 2010 |
| Assalamoalaikum,Hope and pray that you are doing fine. May Allah bless you and your family for the great work you are doing.Her brain MRI shows significant interval improvement, which probably suggests that the diagnosis of ADEM was correct. The MRI of cervical spine is limited but whatever is available to view has no significant abnormality.The increased prolactin level can be treated with medicine. Dr. Nabia will tell you about that. Her periods may be irregular because of that.For the changes in medicine, I will suggest the following plan now:Tab. Prednisone – Stop
Tab. Tinize – Stop Tab. Requip 0.25 mg 2 + 0 + 2 Tab. Iberet Folic 1 + 0 + 1 Cap. Risek 40 mg 1 + 0 + 0 Tab. Brufen 200 mg only when she complains of pain Tab. Lexotanil 3 mg at night Tab. Motilium 1 + 1 + 1 before meals Syp. Duphalac 30 ml three times a day Add Zoloft 50 mg 1/2 tablet at night for 1 week, then one tablet at night daily Add Risperdal drops 0.5 ml at night for 1 week, then one ml at night daily Continue Atem nebs as needed. Sincerely, Ismail A. Khatri, MD
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| 25th October 2010 |
| Assalamoalaikum,I forgot to write the medication for spasticity in my previous mail.Please give Baclofen (Lioresal) 10 mg 1/2 + 0 + 1/2 for one week, then increase to 1/2 + 1/2 + 1/2. Email me in couple of weeks about the response.Sincerely,Ismail A. Khatri, MD |
| 3rd November 2010 |
| Dear Dr KhatriAs advised by you I am submitting Saima s health up date after almost 2 weeks.Her current state is as follows.Blood pressure is always normalPulse 100-120 /minOxygen saturation 95 -98 on 2 litre /min
Active Complaints Increase in sleepiness after taking full dose of zolaft i.e. 1 tab at night since Sunday Yesterday she was not fully active and since last night till today she slept for almost 20 hours and still she is feeling drossy. She was complaining of nausea which was resolved after taking 1 tab of Gravinate via peg in the morning When she is awake she complains of pain in body. Before Sunday when she was taking half a tab of zolaft she was fine and her mood was ok. She was able to memorize minor things and was able to recognize people on their voices. She was very aware and concerned about her disease and the future outcome of her disease. She wanted to meet her doctor to discuss her disease in detail. Recently she wants to meet her friends and relative. I must mention 2 incidents here. The first one happened on 21st October when she came to hospital for MRI , consultation and change of trachestomy Dr Zafar Iqbal changed the trachestomy in his OPDset up. Where h e used the dilator to widen the trachestomy hole. Right after the change of tracehstomy her HR started dropping from 100/min to 60 /min. We immediately rushed her to Dr shazli s clinic where Dr Shahzad was also present with respiratory therapist. According to them chest was absolutely clear and due to dilating the trachestomy hole this droping of the HR and saturation is secondry to vasovagal and on that day she was put on ventilator for 8 hours, This settled down after 72 hours and after that HR and sats were maintained by her. Second incident occurred was on 30 October mid night when she became so panicky that her oxygen saturation dropped to 74%. Her respiratory rate was also more then 45-50 min. According to the nurse chest heart was clear and trachestomy tube was also clear. By increasing the oxygen inhalation up to 10 liter /min sats became normal Chest Clear. No need of suctioning and she berating normally without effort GIT Takes diet via peg tube 4 times a day. She also takes oral diet occasionally. She passes soft stool once a day CNS Currently sleepy although fully orientated Before Sunday she was fully aware and alert. She wanted to meet friends and relatives. She is concerned about her disease She is talking normally and making sense Now before passing stool she feels it and gets a little panicky Her sensory level is more on the left side then right arm. In lower limbs there is no sensation Muscular – skeletal system There is voluntary movement to some extent in her upper limbs more on the left limb. There is a slight movement in her arms on command She can also move her lower limbs but that movement is involuntary She can move her neck in all directions on command. Medicine 1. Tab Reqip .25 mg 2tb x BD 2. Tab Iberet Follic 500 mg 1 x BD 3. Cap Risek 40 mg 1 OD 4. Tab Motilium 10 mg 1 x TDS 5. Tab Zolaft 50 mg at night 6. Tab Baclofen 10 mg ½ tab x TDS 7. Tab Laxotinal 3 mg At night 8. Respiridol Drops 1 ML MS 9. Atem nabs 6 hourly 10. Syp Moulnyl 2TSP PRN 11. Ispoaghol Husk 2 TSF 6 hourly 12. Tab Ganaton 50 mg 1 x TDS 13. TAB Ciproxin 500 mg 1 x BD(7 days completed) 14. SYP Duplalac 30 ml BD 15. Tab Brufen 200 mg PRN Please do recommend any changes if you feel the need for it Ammar Masood
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| 3rd November 2010 |
| Assalamoalaikum,Drowsiness comes from both Zoloft and Baclofen. Try to decrease the Baclofen first. Bring it 1/4 + 0 + 1/2. If that does not improve her sleepiness, only then decrease Zoloft to 1/2 at night. Let me know how these changes helped.Ismail A. Khatri, MD |
| 20th November 2010 |
| Dear Dr KhatriLet me start this e mail by thanking you. Your care and critical decision at the right time has improved Saima s condition a lot. You have been instrument in her improvement. Me and my family don’t have any words to thank you for your kindness.Sir allow me to share saima s current condition and future plans for your consent and perusal.Saima is much better then what you saw her last. She is eating orally and swallowing it fine. Her sats , BP, HR , Glucose are normal. Results of CAM7, CBC, URINE RE are with in normal limits. There are more and more movements in her body more so on the left side. She can feel vibration on every part of her body. On the right side sensations are lower then left side. She can move fingers , arms and too some extent legs on command. She can even lift her belly on command. Her mood and memory are absolutely fine though her sleep time is almost 12 hours a day. She can blow air from her mouth and on command can inhale from nose.She still has tracheotomy. Now that she has more sensations in her neck she feels irritated because of it. There is a involuntry movment in her neck from left to right and she said since the tracky hurts her throat that’s why she moves her neck but mostly it looks involuntary.
She passes her stool regularly and its mostly soft and painless but lately she has started feeling her bowel movements. We plan to admit her to shifa hospital on Sunday night in a private room with your approval so that a multi disciplinary decision can be achieved to remove the track and she will have the opportunity to have a visit from you every day. Please let me know if that’s possible in your hectic schedule. Tomorrow we plan to to send all her relevant test to lab so that on Monday you have her complete picture in-front of you. We would also want Dr aftab , Dr shazli , Dr Mobeen , Her gynacalogist and head of physiotherapist to visit her if possible. Kindly let me know if this plan is ok with you Thank you once again. Ammar Masood
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| 20th November 2010 |
| Assalamoalaikum,Hope and pray that you are doing fine. Thanks for your kind words. May Allah give her complete recovery, aameen.I am not on call next week and hence will be primarily responsible for out-patient clinic. However, I will do my best to visit her at least for few minutes every day that she is in hospital, but I cannot guarantee you what time it will be. From your email it appears though that there is very little that I can add as she has already made remarkable improvement alhamdolillah.Let me know when she is admitted.Ismail A. Khatri, MD
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| 3rd December 2010 |
| Dear Dr KhatriIts amazing how nicely u remember even the attendants of your patients. When i saw you in your room last week i could not resist to say salam to you and briefly tell you about my wife’s health. You were kind enough to give me few minutes of your precious time. I take the opportunity to brief you more about saima s condition.Saima Current health conditionCurrent Complaint. Anxiety and FearShe does not like visitors and shy of meeting people.
With good counseling session from the family and close friends the fear and anxiety goes temporarily. Dr Furqan (Physiotherapist) say her Muscles are more spastic , lower limbs more then upper limbs, knee extensor and hip adductors are in grade 2 plus, rest of the muscles are showing flickers of contractions. She can raise her pelvis in crook lying position. She can hold her neck independently for more then 2 mins. Dr Shahzad a kind family friend who visits her quite frequently has observed the following things. 1. Lately she feels anxiety and fear even before performing small tasks like changing positions , eating food or getting prepared for physiotherapy etc 2. Her sensations in all four limbs have come back and she she can feel vibration sensations in all four limbs as well. 3.There is more motor response in left half of the body then right 4. Hemodynamically she is stable and eating orally Thanking you again for your care n concern. Ammar Masood
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| 4th December 2010 |
| Assalamoalaikum,Hope and pray that you are doing fine. Thanks for your kind words. Pray for me.It is encouraging that she is making slow but steady recovery alhamdolillah. Anxiety and fear are not out of expectation. Can you please email me the list of her current medications so I can adjust antidepressants/anxiolytics and also possibly increase the dose of ant spasticity medications?Sincerely,Ismail A. Khatri, MDAssistant Professor of Neurology
Shifa College of Medicine Consultant Neurologist and Head, Division of Neurology Shifa International Hospital
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| 4th December 2010 |
| Dear Dr KhatriThank you very much for your kind reply. Saima is currently having the following medicines. 1. TAB REQUIP 0.25 MG 2 Tab BD2. TAB IBERET FOLIC 1 TAB BD
3. CAP RISEK 40 MG OD 4. TAB ZOLAFT 50 MG 1 HS 5. TAB BECLOFEN 1/4 AM and 1/2 at PM 6. TAB LAXOTENIL 3 MG 1 HS 7. RESPPERIDOL DROPS 1 ML HS 8. SYRUP DUPHLAC 30 CC BD 9. ISPAGHOL HUSK 2 TSF TDS 10. ATEM NABS 4 HOURLY 11. SYP MUCONIL 2 TSF TDS 12. TAB MOLTILIUM 10 MG 1 TDS Last time when i requested you to plz have a look at her medication you reduced BECLOFIN 10 mg from (1/2 + 1/2 + 1/2) to (1/4 + 1/2) tab, because her sleep time was more then 18 hours a day at that time. Waiting for your feed back Ammar Masood
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| 6h December 2010 |
| Assalamoalaikum,Increase Zoloft to 100 mg at night and Risperdal to 1.5 ml at night.Continue other medications at current dosage and let me know of the effects in 5 to 7 days.Allah knows the best.Ismail A. Khatri, MD |
| 10th December 2010 |
| Dear Dr KhatriIt was extremely kind of you to reply my e mail regarding my wife’s health. As advised by you i am briefing you about the impact of change of medicine after 5 days.As directed by you we have (Increase Zoloft to 100 mg at night and Risperdal to 1.5 ml at night.) But her complain of anxiety and fear is still there though her sleep time has increased more then 14 hours a day.She is scared of minor activities and her mood is mostly down and fatigued. Her vitals are absolutely fine and she still has the trach, PEG tube and urine catheter on.
She is eating orally and we use the PEG tube only for the medicine. She is having one hour physiotherapy every day though she is initially reluctant to go for it but as the session progress her mood improves slightly. She does not like visitors at all and skeptical of meeting them. She does talk to friends and family on telephone but cant hold a conversation more then 3 mins. Her response to the family is good but only when she is awake n aware. I am waiting for your kind feed back Ammar Masood
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| 10th December 2010 |
| Assalamoalaikum,Stop Risperdal and Lexotanil.Start Seroquel 25 mg once at night for 3 days and increase to 50 mg once at night after 3 days.Start Ativan 1 mg at night.Let me know how this helped?Ismail A. Khatri, MD
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| 17th December 2010 |
| Dear Dr Khatri As instructed by you we have changed saima medication last week from ( Zoloft 100 mg at night and Risperdal to 1.5 ml at night) then again on your instruction we Stoped Risperdal and Lexotanil and started Seroquel 25 mg once at night for 3 days and increase to 50 mg once at night after 3 days.we have also started Ativan 1 mg at night as advised by you.Now her current condition is as follows1. There is no improvement in her fear and anxiety rather its aggravated to quite an extent. She is scared of eating, having steam, changing positions, taking bath , changing cloths or any small little disturbance makes her feel uncomfortable. Here i want to mention she has great will power and she tries her best to overcome these issues but i feel that currently its beyond her control.2. Her sleep routine has been disturbed Her sleep time is more then 10 hours a day but she is uncomfortable in her sleep3. Her appetite has decreased drastically and yet again we have to use PEG tube for feeding . Before this current change of medication she was taking food orally and was enjoying it and peg tube was only used for medication
4. Stiffness and spasticity has increased in her left sided limbs 5. There is still more sensation n movements on her left side of the body. 6.. As far as her body movements are concerned they are increasing day by day yesterday she sat without support and held her neck independently for more then 19 minutes. Just a pillow was given to her as back support. In that 19 minutes episode she was absolutely normal and her vitals were within limits. 7. Her GIT system is working normally with the help of ispoghol husk, duphalac and motilllium. She is passing stool daily and she does notice it in advance. 8. Her sleep time is ok but mostly her sleep is disturbed. In my personal observation laxotinal does suit her more then ativan. This is my personal opinion but since i am not a doctor my opnion should not matter. Saima is currently having the following medicines. 1. TAB REQUIP 0.25 MG 2 Tab BD 2. FOLIC Acid 1 TAB OD 3. CAP RISEK 40 MG OD 4. TAB ZOLAFT 100 MG 1 HS 5. TAB BECLOFEN 1/4 AM and 1/2 at PM 6. TAB Ativan 1 MG 1 HS 7.Sequreell 50 mg HS 8. SYRUP DUPHLAC 30 CC BD 9. ISPAGHOL HUSK 2 TSF TDS 10. ATEM NABS 4 HOURLY 11. SYP MUCONIL 2 TSF TDS 12. TAB MOLTILIUM 10 MG 1 TDS Waiting for your kind response. Ammar Masood
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| 18th December 2010 |
| Assalamoalaikum,Hope and pray that you are doing fine.It may be a good idea to show her to a psychiatrist at least once. Three main psychiatriasts in town are Dr. Fareed Minhas (Benazir Bhutto Hospital), Dr. Mowaddat Rana (Military Hospital), and Dr. Rizwan Taj (Shifa International Hospital). Do not change any medication until you have a psychiatric opinion. Ismail A. Khatri, MD |
Review by Dr. Andrew Maccnob
Dear Tariq
Thnkx for your email. I have had a look at the patient’s husband’s notes and the doctors’ thorough letter and report of her repeat imaging.
Unfortunately I have little to add. I would agree that there is no evidence from the imaging (or indeed the clinical picture as described) to suggest that there is any current or ongoing activity of her disease. The implication from this is that no further specific anti-inflammatory treatment (such as steroids, plasma exchange or other immunomodulatory or immunosuppressive agents) would be indicated.
She is left unfortunately with a severe neurological disability which her neurologist and urologist are addressing. It does not sound as if she is a candidate for active rehabilitation with a view to increasing her mobility. However she may benefit from assessment in a spinal unit or specialized neurorehab unit from the point of view of managing her quadriplegia, spasticity and sphincter problems.
Regards
Andrew
