Michael Warechowski IV

Updates on our sweet Michael

I hate medications!

Medications are a necessary evil. Trying to figure out the right ones and the right dosages… Sometimes I wonder if Michael would be better off without some of his meds.
On Christmas Eve last year, (about 1 month after his emergency brain surgery for hydrocephalus) Michael had his first ever seizure. At least, that’s what we thought it was. They were few and far between for a while but then they got more frequent. We started him on a new med earlier this year to treat his seizures (called Keppra) but it didn’t seem to make much difference. The seizures (or “episodes” as we now call them) would come in clusters and sometimes he’d go a week or 10 days without one. Then, these episodes began to have some other symptoms along with them that made us think that they were not seizures, but PAID episodes.

Just a quick recap – Michael was diagnosed with PAID syndrome in the fall of 2012. PAID stands for Paroxysmal Autonomic Instability with Dystonia. Basically, all of his autonomic functions (things that the body controls automatically like respiration rate, heart rate, blood pressure, body temp, pupil dilation, hiccups, muscle spasms, etc) go haywire all at once. It is a painful to go through and thus, very hard to watch Michael experience.

So, we started the process of weaning him off of his seizure meds (since we are thinking he’s not having seizures) and he did great with that. He did not have an increase in the number of episodes with the lower dose of Keppra. So, we then began increasing his Clonidine (the medication used to treat PAIDs). But now that we have increased his Clonidine, his episodes are MORE FREQUENT! WHAT THE H***? He has had about 5 episodes in the last 2 days. He hasn’t been very comfortable and isn’t sleeping as well. This makes no sense.

You may be wondering if we did an EEG to see if these episodes are seizures…Well, yes we did. However, the brains of MLD children will always show an abnormal EEG but that does not necessarily mean that the are having seizures. When we saw Dr. E in Pittsburgh in July and we described what these episodes were like, she said she thought they sounded like PAIDs and Mike and I agree. So we are back to the drawing board – I guess maybe a 48 hour video EEG is what we need to do. My only concern is that these episodes come in clusters so what if we schedule the EEG and he doesn’t have one at all? Then we have wasted 48 hours of testing just to find nothing and get no answers. I’m at a loss right now and my heart just breaks seeing Michael go through this.

On a side note, I had a thought yesterday… I was at the hair salon and I saw several old ladies accompanied by their adult children taking them to get their hair done. Just as I will take care of my parents when they need me, these children were taking care of their parents. I got sad thinking, who will take care of me and Mike when we are really old? We won’t have children or grandchildren to care for us – to spend time with us. I just can’t believe that I will live my life without children to watch grow up…

I’m okay – it’s just certain situations at random times that make me sad for a minute. Then I get home to Michael and all is good – he always makes me feel better. I just love him so much. More than anything ever.

2 Comments »

Michael’s story

The MLD foundation has asked for help in spreading the word about MLD. They asked us to write a short story about Michael’s diagnosis – from then until now. Here is what I wrote.Michael was a perfectly healthy, smart and funny little boy. At 20 months, he was already saying his ABC’s and counting to 20. He was typical by most standards. Except….he couldn’t walk. We began wondering about Michael around 16 months but the doctors just said he was a “late walker.”Well, when his 2nd birthday approached, we knew something wasn’t right. After months of testing, a brain MRI and urine test confirmed that Michael had MLD – Metachromatic Leukodystrophy. Shortly after his diagnosis weheaded up to Pittsburgh, PA to see the world’s most knowledgeable doctor aboutMLD, Maria Escolar. She warned us that this disease progresses very fast, especially in the beginning. We had no idea how fast she meant but we soon found out.

We received Michael’s diagnosis on March 27th,2012. At that point he could still do everything except walk unassisted. By September of 2012, only 6 months later, Michael had lost all of his abilities.He could no longer sit up, hold his head up, talk or eat by mouth. He was very uncomfortable most of the time, whimpering, vomiting, sweating and crying everyday. We didn’t know how to get him comfortable and he couldn’t communicate with us. We spent a few months trying to figure out what medications would make Michael comfortable. A second and third trip up to Pittsburgh got us on track and we finally got Michael on the right medications and dosages. He was finally comfortable by the spring of 2013.

The first year after Michael’s diagnosis was the hardest year of our lives. To see your only child go from being able to carry on a conversation with you, being able to laugh and play to not being able to do anything…and even worse, to be in constant pain was hard, to say the least.

We now at 2 years post diagnosis and life is different now. Michael is stable. We have a routine. He is comfortable although, he does have some bad days. We have had a few scares, some trips to the emergency room and 2 emergency brain surgeries. But Michael is stronger than any human I have ever seen. He handles everything with such calm gracefulness. Despite everything he has been through, he still manages to smile sometimes. He still shows us love through his eyes. He has taught us strength, patience and understanding. He brings us indescribable amounts of joy. We play and interact in our own ways. We still have fun and even though Michael can’t communicate, he is very much alive inside. He is just trapped in this body that doesn’t work. He likes to be stimulated – read and talked to, held and loved on. So we spend the majority of our days doing just that – loving on him, talking to him and cherishing the fact that we have him.

10624825_10153132353668916_7354815530410153178_n

Leave a comment »

Muddy for MLD!

Hey everyone! Michael has been healing up nicely after his surgery. However, this last week has been kind of rough. He’s been extra snotty and had some diarrhea. We saw the pediatrician on Friday and they did some labs. We aren’t too concerned – we just hope he’ll feel better soon!
I’m sure you have all heard of the ALS Ice Bucket Challenge. Well, we need to get the word out about MLD too! So the MLD foundation has started the Get Muddy for MLD Challenge! Here is a link the a video I did. Please accept the challenge, get muddy and donate to the MLD Foundation. All donations are helping find a cure for this dirty disease. Mike, Michael and I thank you in advance!

Leave a comment »

Muddy for MLD!

Hey everyone! Michael has been healing up nicely after his surgery. However, this last week has been kind of rough. He’s been extra snotty and had some diarrhea. We saw the pediatrician on Friday and they did some labs. We aren’t too concerned – we just hope he’ll feel better soon!
I’m sure you have all heard of the ALS Ice Bucket Challenge. Well, we need to get the word out about MLD too! So the MLD foundation has started the Get Muddy for MLD Challenge! Here is a link the a video I did. Please accept the challenge, get muddy and donate to the MLD Foundation. All donations are helping find a cure for this dirty disease. Mike, Michael and I thank you in advance!

Leave a comment »

Surgery Update

We had our appointment with Michael’s neurosurgeon this morning and after looking at Michael’s MRI, he agreed that something needs to be done but he is not in any immediate danger. He recommended we schedule surgery for next week. However, we had already kind of planned on the surgery being this week and had made arrangements at work and whatnot. So we are going to go ahead and get it over with tomorrow at noon. The sooner we can fix this, the sooner Michael heals and gets to feeling better. The surgery will take about an hour and a half and we should be in the hospital for a couple of nights assuming everything goes smoothly. So please keep Michael in your thoughts and prayers and when we get home, I’ll post another update!

As always, thank you all for the continued love and support.

2 Comments »

Good to be home! (long post)

Many of you have probably seen some pictures and posts on Facebook of our recent trip. We didn’t want to tell everyone that we were going but rather, wait until we got back to give a full update.

Last Tuesday morning we flew out to Pittsburgh for two reasons – First, to see Dr. Escolar (the world known “expert” on MLD) and get some testing. And second, to attend the MLD Family Conference. If you have been following us for awhile, you know that we’ve been up to Pittsburgh 3 times prior to this visit. When Michael was first diagnosed, we went up there every three months. Well, we haven’t been back up there in about a year and half and since the MLD Family conference was being held in Pittsburgh, we thought we might as well kill two birds with one stone.

When Mike and I travel with Michael, we break it up into 4 phases. We try not to get too overwhelmed with the whole traveling thing so in our minds, if we break it up and conquer one phase at a time, we stay a little more calm through the process. Phase 1 was getting to the airport and through security. Phase 2 was getting Michael on the plane and having a smooth ride. Phase 3 is getting him off the plane and getting our luggage. And phase 4 is getting to the car and getting wherever we’re going. Michael did AWESOME through all 4 phases. Not a hiccup, not a delay… nothing. As far as traveling goes, it was as smooth as we could have hoped.

We had our first day of testing on Wednesday. Michael got weighed and measured, got all of his vital signs taken. He saw Dr. Escolar (she couldn’t believe how tall he has gotten!), got his hearing and ears checked. He saw the PT team and they looked at his vision, the range of motion in his joints and what he can and can’t still do. PT also adjusted his wheelchair so he is sitting much straighter and more comfortably. Wednesday was full of good news! His ears and hearing are perfect (although, we are still waiting to hear the results of how he is processing what he is hearing). Dr. E said Michael looks REALLY good. She said she has never heard an MLD kid with such clear lungs and airway. I suction Michael about a million times a day so I guess it is paying off! The range of motion in his arms and legs are good – he has good overall tone. Some of the best news we got is that they think Michael can still see! He can’t see too well but we thought he was pretty much blind. The therapist explained that most Leukodystrophy kids suffer from Cortical Visual Impairment. He can see better in dim light and he can see reds and yellows more easily. They recommended some fun apps and things we can do with him to keep him stimulated.

Wednesday night we ordered room service in the hotel and just relaxed. Our Thursday appointments didn’t start until 12:00pm so we slept in, exercised and then headed to the hospital. On the schedule for Thursday was an MRI and lumbar spinal tap. Michael needed to be “put under” for these procedures. We stayed with Michael until he fell asleep and then went out to the waiting room. We waited for about an hour before we saw Dr. Escolar come out. We were surprised to see her and she had a “look” on her face. We knew something was up…

She explained that she couldn’t do the spinal tap because Michael had a large hematoma around his brain. Basically, his brain is bleeding. She is a very compassionate doctor so she explained everything very well and took her time talking to us. She said she needed to consult with the Neurosurgeon to determine what to do for Michael. After talking to about 5 different doctors, we learned that this bleed is not acute, meaning it didn’t just happen. It’s more chronic – kind of like it a slow leak that builds up over time. Dr. Escolar thinks that the shunt he had placed (as a result of his hydrocephalus last November) drained the fluid too quickly causing a blood vessel in his brain to burst. The neurosurgeons actually wanted to admit Michael, do another CT scan and then, surgery. If that had happened, we would still be in Pittsburgh and would continue to stay there for over a week. Dr. E really communicated with the doctors on our behalf and explained how different these kids are and that we need to be conservative – we can’t just jump into brain surgery! They all recommended (including Dr. E) that we see our neurosurgeon here immediately when we get home. The first appointment we could get was for this Tuesday morning. They will look at the MRI that was done in Pittsburgh and make a recommendation. Michael will probably be having surgery sometime this week :(

The conference started Friday morning. I’ll keep this part of my update a little shorter. I’ll just say – it was GREAT! Just when you think you know all you need to know, you learn something new! All of the parents of the MLD kids are so knowledgeable and amazing. We learned about new research and treatments taking place (unfortunately, none of the treatments would help Michael), ways to enrich and improve Michael’s quality of life. We met so many amazing people and let me just tell you (again) how beautiful these little Earth angels are! There were about 12 or 13 MLD sufferers, most of them having the late-infantile version like Michael. Michael had an amazing time. They provide a respite room with lots of volunteers to keep the kids occupied and active. They did all kinds of crafts, played games, had story time and even live music! It gave Mike and I piece of Mind that we could attend the conference meetings and that Michael was safe and having fun. The picture in this post is of Michael all dressed up for the Saturday night “Glow Party” and of the three of us at the Butterfly Release Ceremony. This ceremony is done every year to honor the MLD sufferers that have passed away over the last year. There was such a long list of names…very sad….
It is so good to be home. We are a little on edge not knowing what this week will bring. Obviously, we are just hoping that Michael will be okay…

As always, thank you for sticking with us. I will update again when we know more about his brain bleed. Love to you all!
photo (4)

4 Comments »

Teeth!

Mikey had his first ever dentist appointment today! I was a little nervous but I took him to see the dentist that me and my family have been going to for over 15 years. Mikey did so good and Dr. Chris said I am doing a great job brushing his teeth!

On a sidenote, Mikey hasn’t been feeling too good the last few days but we are hoping he is just fighting something. Let’s hope this tough little guy knocks it out in no time!

20140619-144854-53334493.jpg

20140619-150348-54228742.jpg

2 Comments »

Update

10177889_10152884790838916_5135776903580009836_n I want to apologize for not updating sooner – fortunately, there isn’t a whole lot to report.

A while back, I mentioned that we were going to try B12 injections with Michael. Well, he got his first injection on April 15th – a smaller dose just to get him started. He handled it well so the following week, we upped his dose. The very next day, he pooped on his own for the first time in probably 3 months. We were very excited to say the least! We began giving him the injections at home, every 3 days and guess what? He started pooping on his own every single day, sometimes twice a day! We were very excited about this. The only problem was that with each dose, he became increasingly uncomfortable – he began grinding his teeth more than usual, yawning a lot, his stridor got worse, and we couldn’t get a smile out of him for over a week. We decided to skip his next scheduled dose to see if he seemed better and he did. However, the pooping stopped right away and we are back to giving enemas.

So, what we have learned from this is that the B12 definitely helped with his gastric motility and his ability to poop on his own. It also made him more alert and awake during the day. We also learned that the Methyl part of the B12 was basically building up when it should have been breaking down thus causing the increased agitation and other side effects. So we want to continue with the B12 because of the benefits but we don’t want him to experience the negative side effects. So the plan is to add in BH4 (Biopterin – a cofactor to critical enzyme pathways) to help him break down the build up of the Methyl part of the B12. We will then slowly add the B12 injections back in and keep him on the BH4.  Hopefully that will allow him to experience the benefits of the B12 without the negative side effects.

Our Naturopath is just amazing. He is so brilliant and cares for Michael so much. Once we get the B12 situation under control, we are going to begin IV flushes of Glutathione. Glutathione is a naturally ocurriung substance in our bodies but for Michael, we are hoping that it can help clean out the toxic build up in his brain. It is basically an intracellular antioxidant. With MLD, it is ultimately the build up of Sulfatides that kills these children. We are hoping the Glutathione can pass the blood brain barrier, get in there and do some “clean up!” It certainly isn’t a cure but it might help him function better, feel better or maybe delay the disease a little. That is, if it works. We’ll try anything (as long as it is safe and natural for the most part) if we think it will help Michael in the slightest.

Thank you for reading my more “scientific” post. I’ll try to update again soon. Here’s a recent picture of Michael – look how big and handsome he is!

 

3 Comments »

December of 2012 was the last time we took Michael up to Pittsburgh to see Dr. Maria Escolar and her amazing team. They are our (and by “our” I mean all MLD families) go-to for questions, answers, testing and comfort in the MLD world. 

We just found out that the annual MLD family conference, which we attended for the first time last year, will be held this July 18th and 19th in Pittsburgh, PA! This is super convenient because we have been wanting to take Michael back up to see Dr. E for sometime now but traveling with him is difficult and expensive. We’ll be able to “kill two birds with one stone” this summer! 

Up to this point, we have focused on comfort over intervention. We want Michael to be happy; to be comfortable; to be where HE WOULD WANT TO BE. But now we are realizING that in order for him to be comfortable, we must intervene a little. So, the areas we want to focus on at this visit with Dr. E are:

  • How can we continue to manage Michael’s pain? Is he on the right medications at the right dosages? 
  • Without putting him through a lot of pain, how can we keep his tight (cute) little legs loose? Many kids end up needing their Achilles “snipped” because their calves and feet get so tight. 
  • We know he has bad scoliosis – that is part of the disease. But how bad is it? Should we be concerned? 
  • How far has he progressed at this point? We might need an MRI to show us where he is because sometimes, an MRI can show us how much time we have left. 
  • How is his hearing and sight? We know his sight is pretty much gone but it would be nice to know from a medical standpoint what we have to work with, you know?

We are excited to see all of the other beautiful families at the conference. I must tell you that I never knew true beauty until Michael got sick and we got to meet other MLD kids and their families. I don’t know what to say -These kids are just beautiful. Another MLD mom said it perfectly – These beautiful kids are trapped. They are with us and they live through us. They hear and feel us but their sweet little bodies cannot do what they want to do. 

The other night as I laid in Michael’s bed I thought to myself – He (Michael) is wiser than me. I truly believe this. He probably brings me more comfort than I bring to him. He makes me feel safe. He makes me feel special. How can such a small being have so much power?

These kids are SPECIAL. Believe me.

In the famous words of Lina Sereno (a wonder woman MLD mom), “Hug your babies.”

Leave a comment »

I love Saturday mornings.

20140412-095821.jpg

4 Comments »

Follow

Get every new post delivered to your Inbox.

Join 60 other followers