also have to go with the report to start my physical rehabilitation and early intervention. The report specifies where we have to go to make an appointment to get started as soon as possible everything and you can start working out and trying to recover what I lost.
daddy comes and we go to the doctor, start ups and downs of medication, left the hospital with 4 anticonvulsants, although one of them is in retreat, oh I'm still not the ideal dose for me tells us the neuro-pediatrician, so they start increases. Anticonvulsants, like almost all drugs, is in relation to weight, so I try to upload them gradually to the maximum that my age and my body to tolerate. We are in March, almost three times a week going to the doctor, the doctors up the medication but I'm still with difficulty, so again for a visit. Every time we go we discussed and can not rise more drugs! but in the following query re upload. The doctors decided to send me an injection of ACTH, is a very sensitive medication, must be very careful with it because it has many side effects, is almost the last possibility is a strong medication used in children with West syndrome, the epileptic syndrome is a very serious disease and treated with this medicine.
started with him, and also with the daily monitoring of my vital signs, I have to go every day at the hospital Perpetual Help prick and prick before I take vital signs, blood pressure, heart rate and saturation blood oxygen, luckily, the nurses and assistants know us and are very good.
Meanwhile, Daddy and Mommy fixing what my rehabilitation, delivered all the documentation for the early attention, but first we to pass an initial assessment of my state, at the Center Base where you have to fix all this will say that about 8 or 10 months before I make an appointment, my mom gets angry and tells them that it is making "care early "early and start placing complaints. At the same time trying to get other sites and perform such rehabilitation are ASPACE, they are hollow but commented that the services cost 25 €, not to be charged to assist you but it is a partnership and what you give is a small contribution so that everything works well, my parents find it a negligible amount for what it is and decide to make an appointment, you mami me for the first valuation and know the team ASPACE palms are all wonderful and above fully understand what we are going as we are not the first case they have. My early rehabilitative care is wonderful, very loving and kind to me, I think we get on well, though I'm going to spend almost the entire section sleeping.
meantime, these shots I have cut off the crisis, now I have the 4 anticonvulsants ACTH, crises are but I feel sick, do not cry as I express it with a nagging, all are concerned and the doctor who more, decides to withdraw the injection because he says "life is taking no chances" mom gives a downturn because this medication I had no crisis but at the same time does not happen to me worse. A day the same, the seizures start, more and become stronger and pilgrimages to visit.
Today is Friday, do not remember that exact day of April, last night I did not stop and I have very bad crisis, let urgent medical consultation or daddy or mommy going to work, this is the last day I'm going to query ; of Maternal and Child Neurology, the doctor sees me and send me back to the ACTH, Mommy does not understand anything, had not said that he risked life?, ie risk of death, does not understand, I back up the medication, but if the last day he said we were on the tops! my parents feel as if they were flying blind, as if tubiesen no idea what to do as well in that consultation the doctor spends more time tending the phone for his private practice than attending to me. Mommy Daddy has to control not to do anything serious, because it is very angry, all I can say is I am very concerned brain and imply that I'm going to look bad, he may be right but maybe not, he still does not I can assure. This is the trigger for my parents seek out another doctor.
Call 902 from our private insurance and give a neuro-pediatric center of Madrid that has an agreement with AS ...., do not hesitate to call the doctor urgently and undertake to address this Monday. Start moving things and find tickets, we'll stay home godmother.
The doctor is testing me, are like three days and after this tells us is not as serious as we believe, that I will change all medication and I will improve, my parents leave the consultation with joy can not believe that everything is so nice here and so black on the palms, but they stick to the good news, is true that this doctor has shown more interest in me than the other doctor. I change the medication and I removed the ACTH, but sends me a steroid pill.
At first, as always, the medication works, my parents maintain ongoing conversations with the doctor, and I have an appointment for May, also coincides with the fellowship of my cousin so we're anxious to see how they respond to this long-term treatment . The steroids make me swell up a lot and leave me a little more hair, but I'm just looking, that they all say.
day is about the appointment the new doctor, I still have seizures but fewer and looser, and like every time we travel I get unwell, another great cold, and of course, another hospital, my parents are very concerned because the appointment with the neuro- pediatrician is very important because you have to see if I have to remove and hidroaltesona (the steroids I take, and should not be lengthened in time consumption), also have to value my epilepsy with EEG is a test routine check on my head inside, to me they have done since the first time and I'm a bit tired, but good is an occupational hazard, ie I have no choice, lol.
all over me about my illness I am not vaccinated and mom is afraid that re-infect me of something else in the hospital, there are many babies unwell and I have no vaccines, so mom talks to the plant doctor, who met before and told him if what he sees I'm stable, I can be discharged, the doctor says he appreciates but that "protocol", (who is this man, I wonder, because whenever he's in everything and never over does not mean mom) can not give me discharged without being a minimum of days monitored. Then mom decides that if I see well have to take the voluntary discharge.
already well and keep breathing oxygen saturation, she knows suck up my mosquito machine and left us asking my high voluntary and when we get to Madrid we go to the clinic Moncloa is the insurance company to confirm that I am fine.
will continue ............
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