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In order to protect the identity of the people who have shared their experience, information such as names and addresses has been modified and omitted. The images found on this blog are actual images provided by the girl's guardian.
Pilar tells us about the results she has seen in her daughter Matilde with the treatment of Valtrex, Cortisone and Immunoglobulins. Matilde, Pilar's daughter, was diagnosed with autism, recently the diagnosis was changed to chronic brain inflammation (encephalitis) possibly caused by herpes virus 6 and 7 infection.
Follow the case of Matilde:
Matilde's story continues here
Matilda is 9 years old. her biggest difficulty is communication and cognition, she has functional language, that she uses to express her basic needs, she asks for food, when she wants to eat. In a simple way, he asks for bread, he asks for fuet, he asks for yogurt, he asks for chicken and chips, but he does not elaborate a sentence where he says: “Mom, I would like to eat chicken with potatoes and yogurt for dessert”.
when you ask him something most of the time he doesn't answerLittle by little in therapy they have been practicing the YES and NO answers but they do not understand the concept well. At the level of intelligence has been tested and does not seem to have any problem in that regard, but at the school learning level, she is far behind what she should be, she knows the numbers, colors, geometric figures, letters, and begins to try to read some words with few letters, she also tries to write by reviewing the letters and She is already able to do some from memory by herself.
At the level of independence, She is able to go to the bathroom by herself, brush her teeth, need help to shower and comb her hair, dress herself, put on her shoes, make her bed, put her plate in the dishwasher, take her cutlery when she goes to eat, help herself water. When you go down the street with her, she respects the crosswalks, understands traffic lights, pays attention, doesn't cross the street and always waits for us to arrive and never runs away.
In general She is a calm, very affectionate, empathetic, extroverted girl who likes to be with people, play with her brothers and other children. (even if you don't have a game according to your age). As for her ability to understand the world around her, it has been increasing very slowly, little by little she has been paying attention to the things that were happening around her, becoming interested in people, places, what was happening.
Even sometimes she gets absorbed in her world, but just by calling her, she returns to ours.
About 3 months ago we started a new treatment prescribed by my daughter's immunologist, in the blood tests that had been done, it had come out that he had HHV6 (Herpes Virus 6) and HHV7
(Herpes virus 7) active (measured through the DNA PCR test), IgM was also negative to these viruses and had high inflammation markers such as Neuronal Specific Enolase, some elevated interleukin, slightly altered immune system, low response to some vaccines and markers of liver inflammation, with all this the immunologist concluded that he had an active viral infection and that her immune system was not producing the necessary antibodies to fight off those viruses that were probably causing her chronic brain inflammation, liver inflammation, and impaired immune system.
Based on these findings the immunologist prescribed VALTREX (an antiviral) and PREDNISOLONE (cortisone) at low doses. To begin with, I recommend doing 21 days of intensive giving Valtrex 3 times a day and cortisone every other day in the morning, at the end of the 21 days we go on to maintenance doses of Valtrex once a day and cortisone 3 times a day. week in the morning, plus intravenous immunoglobulin treatment at a rate of 0.8gr per kg of weight every 21 days.
at that time we began to see a significant increase in their expressive and receptive language, everyone, in the school even their therapists began to notice the improvement,
She began to interact more with people, to greet people, to call them by name, she seemed much more connected, less tantrums, more capable of understanding what was explained to her.
This change was not from one day to the next but rather gradual, We start to see little things. To look at new words that he used, in his ability to use several words together to form short functional sentences. And we began to see a small personality appear, one day she came to me and asked me to make her a ponytail but high, she looked at herself in the mirror and liked herself, she explained to me in her own way how she wanted me to comb it, she began to put problems in wearing certain clothes, when he had never shown any preference or dislike to clothes before.
the first infusion, he took us on a trip to another city, at 10 in the morning we were at the hospital on time, my daughter knew that we were going to the hospital to see the doctor and that they were going to prick her and do a "little bit of damage", but in exchange I could use the IPad as long as I wanted, I had been working on all this in therapy and I think I was already psyched up.
They took us to pediatric oncology, the nurses were very kind and patient with my daughter, I had told them that it could take a bit to put my daughter's IV in. They told me not to worry, it would surely go well.
Three nurses came to the room where we were, I took my daughter and sat on top of her with my legs around her so she couldn't move hers and I took her free arm, one of the nurses stretched her arm with firmly but carefully and the other nurse felt her vein, in a matter of seconds she had already pricked my daughter, removed the needle and left the catheter in place.
My daughter barely had time to cry for two seconds because everything was already in placeWhen he saw what they had put on his arm, his first reaction was to look at me and tell me that it was done, it's his way of saying that something is over and that he doesn't want it anymore, I told him that if he didn't touch it, I'd leave him the iPad , the negotiation was quick and there was no more to talk about (it must be said that we never let you have the iPad, only on planes, trains and doctors, so when you have the opportunity to have it, don't complain and accept whatever).
With the catheter in place, they escorted us to the room where my daughter decided to sit in a reclining chair. I put a cushion under her arm so that she could stretch it out as the nurses told me.
The first thing they did was give him a serum with the premedication that the doctor had prescribed, Sodium Chlorate 0.9% 500 ml + Dipyrone 500mg + Hydrocortisone 25mg to pass in 60 minutes, After an hour they gave him the immunoglobulins, The nurse told me that since it was the first time they were going to do the infusion very slowly, more or less in about 7 hours.
They started at a minimum infusion rate and increased it every 30 min. During the 7 hours I continued to give my daughter plenty of fluids to drink, the doctor had recommended us to drink at least 3 liters of water a day, 3 days before and 3 days after. On the day of the infusion, my daughter drank at least 5 liters of water, she did not stop drinking water and since they had told me the importance of hydration, we continued with the water for the following days.
During the 7 hours of the infusion my daughter ate, had a snack and ate some snacks that she had brought (a banana and some gluten-free sticks) she was calm all the time watching movies and series and she did not complain about anything.
When we left the hospital we went to the hotel, had dinner and went to the room early.
My daughter arrived at the hotel room, sat at the table and began to draw for 1 hour, calm without moving and super focused, I thought "is it possible that the IVIG takes effect so quickly?"
It was a curious thing that I discussed with my husband, I had never seen my daughter sitting for so long drawing.
The next day we went back home, my husband and my children came to pick us up and we spent the whole day out, eating with friends and visiting the place where we were. My daughter spent the day well, calm, normal, she continued to drink water, but not as much as the day before.
The next day, two days after the infusion, she got up and from the beginning of the morning she began to complain of a headache. I began to encourage her to drink water, but for some reason she didn't want to, she was very whiny, sort of crying, she implied that she was not well. We talked to his doctor and he told us that it was normal to have headaches two to three days after the infusion. She spent the day from sofa to sofa, she didn't eat, she slept and finally the next day everything had passed, and she was the girl she always was again.
Every day that goes by we see that their language is increasing, what used to be just single words are now 2-3 word phrases, his communicative intention is increasing and more and more we see that he says things to get attention and wants to share them with others, he calls people and tells them Let them look at what is happening or what he is doing.
Another thing that is drawing our attention is that understands more and more complex things, This morning when I got into the elevator I told her from afar "take your sock down because you've pulled it up a lot", she looked at me, she looked at her socks and pulled them down
This a few months ago was unthinkable.
Before giving him the first IVIG infusion, we did laboratory tests. HHV6 was no longer present in the blood, only herpesvirus 7 was still testing positive. It would seem that the Valtrex has been doing its bit, but it still needs more to stop it from reproducing.
Time flies by, and We have to go again to give him the immunoglobulins, We start the day with a two-hour drive to get to the AVE station, she knows that we are going to the hospital, but she also knows that the train trip awaits us. She is looking forward to it because it is the moment in which we leave her the IPad without restrictions, she is happy, days before she begins to ask again and again to go to the train, we tell her the day it will be and she continues asking for it.
The week before going we have the urine problem again, it smells very strong, and when this happens, his behavior worsens, he seems to regress, he is less cooperative, it is difficult for him to pay attention, he complains about everything. We began treatment to lower the Escherichia coli, which is usually the problem, he began to improve, but the day of the trip arrived, he was particularly irritable, and I'm afraid the experience was not going to be as good as the first.
When we got to the hospital, she knew perfectly well what we were doing, she was not very cooperative, she did not want to have the line put in, it took two attempts, the nurses and I had to immobilize her, it was a bit of a struggle, crying and complaining, but in the end They put the line on him and he calmed down.
The infusion of the immunoglobulins went well, they cut the infusion time a bit, instead of 7 hours like the first one we got closer to 6.
When I finished and asked him to return the iPad to me, he began to cry, I don't quite know if it is the effect of removing the iPad or of having been immobile for so many hours or of the same treatment, but he spent about 1.5 hours protesting, whining, refusing to do anything he asked. We went for a walk to air it out and then we went to the hotel. He slept well with no problems and woke up the next day like nothing happened.
As the first time he had felt unwell two days after the infusion, we were waiting for the same thing to happen, but this time he felt fine. During the trip, both she and I think we caught a cold (I think the air conditioners in the hospital, the hotel, and the train were to blame). When my daughter returned, she had a cough, headaches, and she said she didn't feel I felt fine, I even thought that maybe the headache was due to the infusion, but it's hard to know, since more than 48 hours had passed.
A week and a half after the infusion, we again had the urine problem accompanied by her discomfort and disconnection. Once we dealt with the issue, we saw improvements again, more speech, longer sentences, more ability to understand.
Rather, we see subtle but steady progress that began with Valtrex and cortisone.
It's hard to say, I haven't seen an increase in improvement since we started the IVIG, but since we started the antiviral and cortisone. I want to think that IVIG is gradually contributing to its anti-inflammatory and immunomodulatory action.
If anyone wants to read more about immunoglobulins here is a link: https://inmunosalud.net/index.php/defensas/70-03-inmunoglobulinas
To give an example, I gave her quite complicated instructions and I don't think she had ever told her before, she wanted to look into the mouth of her brother who had braces on his teeth, her brother had his mouth closed on purpose In order not to teach her, I told my daughter to cover her nose so that her brother would have to open his mouth, and to my surprise she understood and did it to her brother.
It is these kinds of things that we are seeing, and those that give us hope day after day.
The treatment that we are doing VALTREX + CORTISONE + IVIG I have the feeling that it needs as a next phase, the Valtrex is doing its antiviral effect trying to prevent the replication of the Herpes Viruses 6 and 7 that we had active, the cortisone is reducing inflammation and the IVIG is immunomodulating and also reducing inflammation, BUT, I think we should also be somehow REPAIRING the damage that inflammation has produced in the brain during all this time.
Another issue that I am seeing is the effect of cortisone, my daughter takes 5mg 3 times a week. The day she gets the cortisone I have the feeling that she is more lucid,
I have to look more closely if this is the case, I would also like to study cortisone substitutes on a natural level. One thing I have noticed is that my daughter is beginning to develop faster than she should, she is 9.5 years old and she has started to grow hair, an early development will have consequences at the hormonal level that it would be better to avoid.
11 days ago today after the second infusion, my daughter's therapists tell me every day with disbelief what she is doing, today they told me that my daughter had been playing a board game with other children during the therapy session, this is what It seems something normal in a child, it is the first time she has done it, she had never shown interest before, nor had she had the ability and/or the will to sit and show attention.
That she has followed all the sessions with great interest, on a more concrete level they told me that she is improving a lot with reading (she is beginning to put sounds together to read words) and the same with writing, she is beginning to write words on her own.
We are still very far from normality, but closer than a few months ago!!!
In these three weeks several things have happened that I think are worth telling.
On the one hand I decided to stop the cortisone (prednisolone), my daughter's urinary tract infections were becoming more and more frequent. It all started with the smell of urine, in a matter of days it went from normal urine to urine with an extremely strong odor, similar to public latrines. At that point my daughter's behavior underwent a radical change, she went from being calm, happy, happy, to being irritable, whiny, grumpy, not responding to anything, not following any instructions, crying over everything, it was like seeing her disappear in front of my children, transform.
At first, thanks to D-Mannose (a simple sugar of natural origin, useful to hinder or treat cystitis. blocks the growth of bacteria in the urinary tract and prevents them from attacking the bladder walls and causing inflammation) and oil of oregano (a natural antibiotic, It has antimicrobial activity against gram-positive bacteria such as Staphylococcus aureus and Bacillus cereus, and gram-negative bacteria such as Escherichia coli.) we managed to lower the infection of escherichia coli, always causing my daughter's infections, but, at this point where we could be dealing with the infection every two weeks I decided to discontinue the cortisone as it seemed to me that the tendency was to get worse.
Consult with several doctors and they all had the same concern, cortisone is immunosuppressive and as such can promote infections, They wondered the logic behind the use of cortisone in my daughter's treatment. My observations of the first 4 months in which my daughter was only on the Valtrex and the cortisone were improvement, so I think she did well, but I think now was the time to stop.
Right now we're on the train on the way home, yesterday he received the third dose of immunoglobulins, everything was good. We arrived at the hospital at 9:30 a.m., half an hour of administration paperwork, and around 10 a.m. they took us to our room. My daughter came telling me that she did not want to be hurt, says "pupa no mama, the pupa is here” (with pupa refers to the puncture from the catheter insertion).
This time it was much better than the previous time, she complained, cried and squealed but much less, the nurse was quick, put the line in her hand, which by the way I recommend since the first time when they put it on her arm every time she flexed her elbow the pressure increased and the device that controls the medication dripping whistled, and I spent the time checking my daughter so that her arm was straight and still, which is not easy when what she wants is to take the iPad and watch her movies.
Once the line is in place for my daughter, there is no more problem, she sits in the recliner in the room, asks me to cover her with the sheet and put the cushion on her belly and thus she stays for hours and hours happy with her Ipad.
This time the immunoglobulin infusion was 7 hours plus 1 hour of premedication before starting and 30 minutes of serum at the end. In total, between one thing and another, we arrived at the hospital at 9:30 am and left at 7 pm.
After the infusion, she never seems to feel any side effects, If it is true that she drinks a lot of water as the doctor recommended, at least 3 liters of water a day, I think she drinks more. The night is good, he sleeps as usual without any problem.
Today is the day after, this morning woke up, content and happy and talking a lotShe told me everything she saw around her, I don't think I've ever had so much communicative interaction with her before. We were in the taxi on the way to the station and He was telling me everything he was seeing through the window, I took the opportunity to test her and see if I got more than what she would normally say and yes, to my surprise I asked her a question that required her answer, my daughter almost never answers questions.
It is a subject that they have worked on a lot in therapy but it seemed that there was no way for him to understand the concept of the question and the answer of yes and no, and even less to answer a question with a sentence.
Today in the taxi, as I saw her so connected with the outside world and so chatty, I asked her:
«What color is the sky?"Without hesitation he told me:"Blue”.
I almost started to cry... This same question that I have asked millions of times and that I had never had a direct answer before, today just like that we have commented on the color of the sky, the trees that were on the sides of the highway and the little birds that lived in the branches of the trees.
Hallucinated by the conversation with my daughter, I wanted to pull the thread a little more, she talked about her hand, she pointed to it to me, she asked me to give her a kiss pointing to her hand. I showed him mine and told him: «how many fingers do i have«, showing her 3 fingers, she has gone through each of my fingers with her index finger saying «one two» and when he reached three he looked at me and said (answering my question): “Three”. The emotion could… I said to myself: «ask him again«, showing two fingers I have asked him again: «how many fingers do i have" And the same "one"… stare and his response: “two”.
We have gone all the way commenting on the things that we were seeing on the street, she didn't stop talking In his own way, often disconnected for me, he really likes to repeat phrases he hears in the drawings he sees and he repeats them mixed with the things he says to me.
Upon arriving at the station, the taxi has left us at the corner of the building, the station is under construction and has not been able to reach the entrance, we got out of the taxi and my daughter asked me to take the suitcase, As I would do with my other children, I began to remind her of what happened to us last time: "I told her to take the suitcase but at one point, she let it go and a man had to come to tell me that my daughter had left the suitcase, I was looking at the bills on my phone, walking, knowing that my daughter was by my side, but I had not realized that she had let the suitcase go."
Today while I was telling you this, she listened to me carefully and at no time has he let go of the suitcase. I've had one of those moments that I've been having with her lately, completely normal, there are seconds when I forget and feel that she is just a “normal” girl.
This week We have an appointment with my daughter's immunologist, We will discuss the issue of cortisone and we will see what he tells us. I am looking forward to sharing the progress with him and for him to tell me about the other children who are also following the same treatment as my daughter.
It's been 5 days since the third dose of immunoglobulins and a week and a half since we stopped the cortisone, the pee smell has improved and his behavior has also remained stable, I think it was the right decision to stop the cortisone.
People who haven't seen my daughter for a long time insist on the great difference there is in terms of communication, it's true that she speaks much more and above all with more coherence.
We are in the 2 week post 3 doses of IVIG and we have had the follow-up consultation with my daughter's Immunologist.
The doctor is happy with the progress and He tells us that we must continue with the IVIG, I tell him that I have suspended the cortisone because I thought it was negatively affecting my daughter's immunity, causing urinary infections to occur more often, he tells me that he agrees, and I ask him what is the purpose of giving the corticosteroid, he tells me that at the beginning of the treatment it is important to reduce brain inflammation and that is why he gives it, after six months of treatment he sees it as good to stop it. We talked about Valtrex, the antiviral, and if we should continue, I raised the questionable efficacy of this medication to eliminate herpes viruses 6 and 7.
tells me that in other patients Valtrex has managed to reduce the viral load but it tells me that 6 months of treatment are enough. He tells me to continue only with the IVIG for now and to do follow-up visits every 10 weeks. To see if there are any quantifiable improvements, he recommends that I do an analysis with two markers:
These days we are noticing more advances in the language. We have noticed that he has begun to link two sentences, for example, a while ago he came to me and told me:
-Mommy kiss,
I gave him a kiss, and then he told me
-I like kiss.
Another thing we have noticed is that has begun to express what he likes and dislikes in much more detail.
In the morning I told my children to get ready to go to the beach, from afar I told my daughter to go to the garden to get her swimsuit and towel, He came back with his swimsuit on and with 4 towels in his hand, I told him no, I only needed one and he went and left the rest (this ability to understand and follow more than one order is new).
We got in the car and got to the end of the street where the traffic light is, we were going to the beach where you have to turn left, I turned and she protested and said that she wanted to go the other way, to another beach that she likes better.
Another new thing I've noticed is that is beginning to have preferences in the clothes he wearsIf I prepare her clothes and I tell her what to wear, she tells me no, and she changes what she doesn't like for what she likes, I think it's more related to comfort, but it's also true that she has started giving me my clothes that she likes the most, he comes to me and tells me to change my swimsuit and put on red, he seems to like that a lot, or to take off some pants and put on a dress, dresses seem to be his favorite item of clothing.
She had never shown any preference for clothes before, he put on what I gave him and said nothing.
In some things he seems to be losing the rigidity in his conduct. At the beginning of summer, one day she went into the sea, there were waves and one carried her over, she became afraid and stopped going into the sea to bathe.
The other day We went to the beach, there were waves, and I began to play with my other children, she was on the shore watching us as we jumped the waves, I approached her and told her to come that I helped her, I told him what to do when the waves came, which was to turn on your back and jump up, without further ado he gave me his hand and entered the sea, we began to walk in, jumping over the waves and turning every time a slightly bigger one came. Suddenly He began to say that he liked it, that he was happy, and he began to enjoy the waves, since the other day, he is no longer afraid, and he gets in without problems.
So that it is understood where we came from, last year he only went into the sea two or three times when it was flat as a swimming pool, I tried all summer and she kicked, screamed and did not want to know anything. With a single explanation of how to avoid being carried away by the wave, I got her to swim. It's definitely a new attitude from my daughter and I'm thankful for it.
I have asked one of my daughter's therapists to make a small report on how her evolution has been in the last 6 months to give a little more information about my daughter's starting point, which coincides with the start of treatment from Valtrex and cortisone.
The therapist has only seen my daughter after the first dose of IVIG, then the summer started and she hasn't gone to therapy anymore. We'll see how he sees her when the course starts in September and she already has 5-6 doses of IVIG.
Matilde has improved a lot during the last 6 months in terms of communication, understanding and social initiation. He has begun to say hello, goodbye, and thank others by name, which he did not do before. As she began to recognize more people, we also began to work on asking people, with whom she is less familiar, for work materials. In this way, we work on your ability to communicate your needs. He used to freeze up and say nothing in front of other people, but he slowly began to approach different people on his own initiative to ask for materials.
We had taught her polite phrases for asking for things and we worked hard on incorporating the object of the request into the sentence, as she would often refer to items she wanted just by color, and this created a lot of misunderstandings and frustrations. She learned the names of frequently needed objects and when she needed to be more specific, she also learned to attach adjectives to nouns. The school informed us that they had started asking the lunchroom monitors for more food, something they had never done before.
His communication skills further developed when he began to use different tenses, and to answer using the correct tense according to the questions. He learned the present continuous to respond when asked what he was doing. This awareness pervasived in her daily life as she spontaneously reported her observations of the world around her, calling therapists she knew into the room just to tell them what she was doing. In turn, it showed that their interest in others and the initiative to engage in social interactions had increased.
More than that, at the beginning of the year he learned the phrase "I don't like it" since otherwise he would leave without saying anything, which was disconcerting to those around him. It was also frustrating for her not being able to express herself, but later in the year she started expressing that she was "sad" and "mad" along with "I don't like it." He also recently started answering questions from others, namely "do you like it?" and "how are you?", with short answers like "yes, I like it!" or "happy!"
He has also demonstrated the ability to learn and maintain information, including how to sound out and write simple CVC words, and do simple counting and math activities. It also became easier to teach her because she was more patient, less rigid, more communicative, and seemed to understand better what was being asked of her. We also saw an increase in his working memory where he was able to follow two-step instructions.
He also began to make some connections with his past experiences, so that when we showed him a photograph he could relate to it and verbally express in single words or phrases when he went or where he had gone. One day I even asked about his weekend and although he didn't give a full answer, he was able to suggest what he had done with single words ('birthday party') and the names of those who were there.
His learning process has been gradual but progressive, and importantly, we see that his ability to learn is growing.
It's been a week since we gave him his fourth dose of IVIG, this infusion was much shorter.
They told us at the hospital that since they had already given him 3 doses and everything had gone well they were going to pass the immunoglobulins instead of in 7 hours in 5 hours. We started at 10 in the morning, they put the line on him and they gave him an hour of premedication. At 11 he was able to take the immunoglobulins and at 4 we had finished.
The second day after the infusion complained of a headache and at night he went to sleep without dinner because he was not feeling well, the next day he woke up well and he did not complain of a headache again.
This time we have not seen so much progress. What's more, he hasn't been well for a few days, his urine is very strong again and we believe that something in his body is out of balance.
At our next medical visit they are going to look at the ammonium in blood, since in the past he had had seasons in which he had very high ammonia, at that time when his ammonia rose his behavior worsened a lot and our doctor treated him with citrulline, molybdenum and ornithine, sometimes also lactulose.
Ammonium, when not properly eliminated from the body, can accumulate in the brain and alter the nervous system. In these cases, ammonium behaves like a neurotoxic agent, it can also affect energy production in mitochondria and increase the pH of the intestine, influencing the digestion of food and absorption of nutrients such as B12 or Zinc.
Looking at the symptoms produced by the increase in ammonia, Matilde seems to have several of the symptoms:
We leave you here a link to an Instagram post that explains more about ammonium toxicity.
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