Category Archives: Tuberous Sclerosis

Medical Marijuana, Modified Atkins Diet for Seizures, Parenting, Tuberous Sclerosis

MAD is helping the seizures!

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I have not used our Seizure Tracker app for three days. We have had a few seizure-free days here and there since I started tweaking his diet a couple months ago, but three days in a row isn’t so common and is pretty exciting. I’m not gonna get ahead of myself and say there won’t be future break-though seizures , but I’m so relieved to know diet therapy is truly helping. It does NOT work for everyone, so I’m thrilled that it is working for Connor.

If MAD does do the trick, it saves us from moving on to the more extreme ketogenic diet which would force me to become an organized planner, the absolute antithesis of what I am.

To be honest it hasn’t even been hard due to Connor’s delays. Since Connor is still a bit fickle about textures, he has never developed a taste for a lot of the stuff other two-year-olds have. He doesn’t eat chips and cookies. A good portion of his diet is is still pureed and I rely heavily on baby food portions of meat and vegetables. Since he’s picky about more solid food, I also buy prepackaged portions of chopped carrots  and green beans that are soaking in water and softened for him so he can transition to more texture. I also buy boxes of chicken nuggets without breading and meatballs. Basically, everything is already portioned out with all the nutrition info on the side. So it’s easy to keep track of his allotted 10 net carbs a day.

I started tweaking his diet a couple months when we were trying to get in somewhere to start the ketogenic diet–only to discover most hospitals take months to get you in. For a long time I just reduced his carbs, but didn’t stick to a particular limit. I just avoided pastas and gave minimal fruit. It seemed to help a little, but seizures were still almost daily. As I read more about it, I started giving him half and half occasionally instead of milk. Then, a couple weeks ago, after checking in with a nutritionist, I started stirring olive oil into his food, and switched from milk to heavy whipping cream mixed with water. I try to spread his carbs and fat evenly through the day. There is no specific amount of fat required–just “liberal use.” To figure out the 10 grams of carbs, I just look at the nutrition info and subtract the dietary fiber from the carb count because those carbs don’t count. I bought book that goes in my purse listing nutritional content of food for the process of getting him to eat more table food. Then I went to Walgreens and purchased Ketostix. Those are used to periodically check his urine for ketones. If the diet is being done correctly the color of the strip should reflect moderate to large ketones. The first time he had small, so I worked on spacing out his fat intake and his last two checks revealed large ketones in his urine. Ketones are what is left behind when the body starts burning fat for energy instead of the glucose from the carbs most of us run on.

Checking the urine of a kid in diapers is super fun. A book had recommended using cotton balls to soak up urine and squeeze it onto the strip. The writers apparently haven’t had much experience with today’s super absorbent diapers because I have to tear through the lining and stick the strip into…whatever that stuff is that spills out of a torn up diaper. Things that would have made me vomit before a kid.

One of the first changes we saw a few weeks ago was that his random seizures during the day were significantly reduced. But waking up was still a big trigger for him. I knew I would see one almost every morning and after nap. But even those have reduced, and I have seen none for three days. He even woke up twice this afternoon–mid-nap and at the end of the nap. I watched closely. No seizure!

Plus, when he was weighed recently he came in at 30 pounds. Last time any med changes were made, he was 27 pounds. So we are seeing this improvement, even though his meds aren’t calculated at his current weight. It would be so amazing to get him off one, if not both, meds. Fingers crossed.

Here are some photos from Disability Day at the Georgia capitol the other day. Several parents went to represent HB 885, which we hope will pass and move this state toward allowing people to access the medicine they need.

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Parenting, Tuberous Sclerosis

Acceptance or Denial?

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I often question how it is that I’m handling things so well these days. I was a walking ball of anxiety for the first few months after Connor was born, and now I just feel so…normal — an adapted sort of normal — but normal nonetheless. At one point I even started questioning whether I was in denial, rather than just being adjusted. It probably helps that the second year of Connor’s life has been much smoother than the first. But I’ve seen a lot of online dialogue regarding birth and diagnosis stories. Some people have developed PTSD from the traumatic circumstances. Years later the thought of those circumstances still has a traumatizing effect on them. I don’t really think about it that much. Connor’s seizures started hours after birth, leading to a five-week stay in the NICU, so it was definitely traumatizing, but why is it that I’m able to just block all that out and not think about it, while others find themselves seeking therapy or suffering at the very thought. That’s actually what led to me wondering if I was in denial. I even Googled it (haha), but I think I’m too functional to qualify (of course, I found about eight other unrelated disorders I might have).

Chris recently spent some time going through some stuff in the office. When I went to bed that night, he had placed the buttons that Northside Hospital gives out to families when a baby is born on the table next to the bed.

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And suddenly, I was crying. I used to be a big cryer, but I hardly ever cry anymore. So I was surprised by my reaction to the buttons. They made me sad that we didn’t get to have a normal start and it brought back the feelings of fear. I remembered asking for something to help me sleep –which they wouldn’t give me — and lying awake bitter that I could hear other people’s babies on the maternity ward crying in their parents’ rooms. I remembered how cruel I thought it was that I had to stay on the maternity ward at all. I remembered how I didn’t quite know what to do with the buttons at the time. I don’t even remember if I wore one. But I knew how excited I would have been about them had everything gone normally. I love cheesy stuff like that.

Acceptance or denial? I guess I’m somewhere in between.

Medical Marijuana, Parenting, Tuberous Sclerosis

The hearing on HB 885 and a diet decision

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I guess blogging really can be therapeutic. After I posted Friday about our trip to Birmingham regarding the ketogenic diet, I just didn’t feel right. I had a tightness in my chest that I hadn’t experienced in a long time. Anxiety? I couldn’t stop obsessing over our appointment with the neurologist and how she just wasn’t on the same page at all. I guess it’s true what people say about going with your gut. I looked back over my correspondence with CHOA. I had never cancelled our March appointment just in case. Connor is already responding so well to the tweaks in his diet that aren’t even the full-blown MAD or ketogenic diet. I went upstairs to find Chris and said, “you know…we still have the CHOA appointment, and the nutritionist said she could help me start MAD at home…” And within seconds it was confirmed that neither of us were comfortable moving forward in Alabama with that neurologist. So I emailed the nutritionist that we would be sticking with CHOA and I am waiting to here from her.

Yesterday I attended the first committee hearing on HB 885. I don’t know what I expected, but it wasn’t what I got. It started late as the morning session had gone long. Some members came in late to the hearing as they were at other meetings that overlapped. Paige Figi — Charlotte’s mom featured in the Sanjay Gupta special — flew in with Joel Stanley from Realm of Caring to testify about what they are doing in Colorado and the success they are having. They are in the process of getting FDA-approval and they are doing studies, but it is a time consuming process and children with severe seizure disorders don’t have time to wait. They explained that they are a heavily regulated industry. They also said they now have a waiting list of over 2,000 people nationally and internationally, hoping they will be allowed access.

Dr. Mike Green then testified and shared that the Medical Association of Georgia supports the bill. Dr. Smith testified about his experiences having a child with a seizure disorder (Doose syndrome) and the awful side effects that can come with seizure medications. He and Dr. Green also shared about the Epidiolex drug trials that are going on. Epidiolex is manufactured by GWPharma using CBD as the active ingredient. Dr. Smith tried to get his child into one of the studies, but they were full. Dr. Flamini also testified. He is the neurologist to many of the kids whose parents are fighting for this. He is actually the mysterious neurologist I frequently refer to in this blog. He is very supportive of CBD studies and is applying for Investigational New Drug status (IND) so that he can work with Epidiolex in his office. It is a very lengthy, difficult process to work with a schedule 1 substance, but even if he is approved he is very limited in how many people can use it. Though he was testifying in support of HB885, he is actually excluded by the bill because he has a private practice. It would only be available via research hospitals.

I also want to point out that Epidiolex is in trial phase and not yet FDA approved. It has been granted orphan status, which speeds things up, but we’re still talking years. May I remind you that vigabatrin was not FDA -approved in the U.S. until 30 years after the first trials. Ahem.

Several parents shared their heartbreaking stories. Janea Cox shared about Haleigh, pleading with the committee not to let her daughter die. Aaron Klepinger shared about the amazing success their son Hunter is having in Colorado and how badly the family wants to come home. One dose stopped him from clenching his fists so tightly that his hands would bleed. Jonathan Jiles shared about his son Kason’s battle with Ohtahara syndrome. Sgt. Chris Clark, a 26-year veteran of the police department shared about his family and how his wife and child are in Colorado for treatment while he remains behind to provide income and insurance. He also shared that his son had a brain surgery that caused a stroke. I wished they could have had more time, but were all rushed because of time constraints and the impending bad weather.

Then came the oppositional speakers with lengthy presentations. Sue Rusche from National Families in Action opened with a YouTube video she took of an advertisement for Indispensary in Colorado. Dispensaries are where you can buy marijuana products. It took me a while to ascertain her point, but it seemed to be, hey, look at all these recreational marijuana products. These are available in the same place as where some of these Colorado parents are obtaining their child’s medication. It was a long, slow video with lots of silent footage of recreational products. Personally, I was shocked it was allowed to play out in full considering the rush for time and that testifying parents had to talk quickly. It was also quickly pointed out by Rep. Kaiser that it was irrelevant. Georgia is not Colorado. This is not what we are doing here. That is simply a place in Colorado where medicine may be picked up, but we wouldn’t have that here. We are interested in a non-psychoactive oil that can’t get you high only ONLY; recreational is not on the table. We want an oil form, not buds. Rusche was clearly not supportive of products such as Charlotte’s Web which has saved many lives in Colorado. She pushed the Epidiolex trials repeatedly and insisted it was not hard to get, that any doctor can apply for IND status and have it in 30 days. This was after Dr. Flamini already testified that it was a difficult process. The doctors behind her were also shaking their head as she spoke. But no matter what was asked, she insisted that Epidiolex, courtesy of GW pharmaceuticals was the only suitable option. She was so insistent that one of the reps eventually questioned whether her organization received money from GW. A representative then asked her if Epidiolex is so easy to get, why aren’t these parents doing that? “I wish they would!” was her response. And at this time, I ask you to recall above where I mentioned that one of the testifying doctors tried to get it for his kid and couldn’t. At that point, Rep. Peake asked her, ‘Would you tell Aaron Klepinger to stop giving Hunter Charlotte’s Web and get in line for Epidiolex?” She said no.

Some doctors from CHOA spoke. While they have reservations, they are very interested in possibilities of CBD oil. Then Rick Allen of the Georgia Drug and Narcotics Agency spoke of the challenges of getting it here due to it’s classification as a schedule 1 substance — no doubt a major hurdle. He said that where we stand, something like Charlotte’s Web cannot be brought into the state legally. University of Mississippi is the only place permitted by law to supply as part of research projects.

Then came, what was for me, some of the most disturbing testimony. Karen Tinker gave lengthy testimony as a mother of a son with epilepsy. I was confused at first. Why was she at the end rather than with the other parents? Why have I never seen her or heard her name before? As it turned out, she wasn’t testifying for the bill. She was testifying against it. She started out with a similar story. Many meds failed her son and he recently received the VNS implant, which she acknowledged comes with it’s own dangers, and wasn’t guaranteed to solve the problem. She talked about her methods of evaluating treatment options for her son, and said that she had chosen not to use Onfi because of potential side effects (a med that I felt we had to try for Connor). But she stated that CBD oil did not have the research to back it. That we needed wait to several years to see what studies would say. She likened the passing of the bill to opening Pandora’s Box and said she worried that all the positive headlines about marijuana would lead her teenage son to try recreational pot. After the fact, I saw her Linked In profile. It turns out she owns a company that provides mobile drug testing of employees to companies. She doesn’t seem to differentiate between medicinal and recreational.

It was heartbreaking that a parent of a child with seizures would do this to other parents. Especially after Janea Cox had cried and shared that Haleigh has stopped breathing 56 times in the last month.

I respect the right of every parent to choose the course of action for their child. Not every parent is comfortable with medical cannabis at this point and I respect some would not opt to use it. Just as Tinker chose not to use Onfi, we did choose to use it. I do not respect someone that tells others they shouldn’t do something that could save their child’s life. I am so lucky that Connor’s situation is not as dire as the situation of the testifying parents. It’s cruel to try and stand in the way of something that could save their lives.

After that, a couple doctors testified that had been recruited by Rusche. I’ll be honest. I didn’t hear much of what they had to say because I was still in shock over Tinker’s testimony. At that point the hearing had hit three hours and it was an hour and a half past when it was supposed to end. The remainder of speakers were asked to return to the next hearing.

I’m not sharing all my thoughts at this time on the hearing in the blog. If interested, I can talk more one-on-one. I will provide more detail at a later date. All I can say is that yesterday was an eye-opening experience.

Medical Marijuana, Parenting, Tuberous Sclerosis

Politics and Pinot

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Oh, I have a blog? I should probably update it. I’ve been so busy. I’m starting to get materials together for the D.C. trip with the TS Alliance in March, been filling out paperwork for Connor’s services and looking into starting hippotherapy (horses-yay!), and trying to read the books I bought on the ketogenic diet. I’m a tad bit nervous and anxious to get started. I’ve already tweaked his diet a bit to be low carb and higher in fat, which I think is helping his seizures, but no where near what the diet requires. It’s way too extreme to do without medical oversight. I can’t totally relax though because our appointment in Birmingham is Feb. 4, but that is just to meet with the neurologist. Though I was told he’d be admitted soon after, Connor doesn’t actually get scheduled for the clinic until that appointment. I’m scared they’ll pull some unexpected wait to start out of their pocket. I’d kept our appointment at CHOA just in case they could get us in earlier and save us the travel or in case something went awry with Birmingham. But come to find out, even though Connor’s neurologist has spoken to several people, and I have spoken to several people regarding starting keto, they still have him down for starting modified Atkins diet, even though the plan of action was changed before Christmas.  I wish someone could explain to me how I have several conversations with someone about the fact that I’m bring Connor in for one thing and at no point does anyone say, “oh oops. He’s scheduled for something else!” Whatever. It’s the same old thing with CHOA every time, no matter what it’s for.

I’ve also been wrapped up in the sudden and surprising momentum of the medical cannabis movement in Georgia. The parents I’ve been talking to did an amazing job of getting the attention of the media and several legislators. Things are rolling and there’s more to come! I’ve been emailing my state legislators and the governor and we’re really seeing a lot of growing support. Access to medical cannabis has the potential to be life changing for so many suffering people.

Connor’s stubborness is reaching epic proportions. He will be two in March and he still won’t give up the bottle. A couple weeks ago I thought we were rounding a momentous curve. He has a sippy cup with a mouthpiece that can be interchanged with the bottle nipple. We’ve been more focused on cup drinking lately so it had been a while since I tried putting the actual sippy cup mouthpiece on the sippy cup instead of the nipple. I handed it to him and there was 15 seconds of drinking. My hands were on my mouth, trying not to gasp, practically jumping up and down. Then he stopped, pulled it out of his mouth, gave it a careful visual inspection, realized he’d been had and threw it down. The next 30 minutes were a standoff in which he would have no part of it. He had to accept a few sips from his training cup and his straw cup (which he’ll only take when urged and helped) before I relented and gave him the nipple. I like to create the illusion that I’m winning.

In spite of all this, we did have a great night out this weekend with two of our couple friends. Connor spent the night with my parents and we went to a wine tasting, dinner, had some drinks and hung out at a friend’s place. Part of the excitement was that we would be able to sleep in on Sunday, but I was having so much fun that we didn’t head home until four. I don’t think Chris was too pleased — he really treasures his sleep — but he humored me.

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This morning I met up with Sara and her two boys for a trip to the Fernbank Natural History Museum. I wasn’t really sure Connor would be into it, but he had a blast. They have a pretty sweet play area.

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I’ll close with this open letter written by Aaron Klepinger. I posted previously about his son Hunter.

My son Hunter has had intractable epilepsy for over 8 years and the seizures have severely impacted his development. He was able to do more before his seizures, such as stand unassisted against the couch. After starting to seize, he has regressed to a 1 month old development level. He depends on us for everything (transferring, feeding, diapering, etc.). We have failed 12 pharmaceuticals, often with devastating side effects such as hours of screaming fits, increased seizures, non-stop sleeping, no sleep, etc. We have tried vitamin supplements, chiropractic, intense neuro-developmental therapies, ketogenic diet for 2 years with constant dietary changes, and VNS implanted (https://www.epilepsy.com/epilepsy/vns). 

He also has been diagnosed with a movement disorder. He flails his arms and legs and moves his head in all directions usually for hours at a time, sometimes in rapid succession. He moves and kicks so much in bed, we have had to put his mattress on the floor because he has fallen off the mattress. We are considering having to make a custom bed for him to keep him safe. His wheelchair has had to be customized heavily to stop him from hurting himself. We modified our Georgia home for his protection also. His shower there is extra wide so he doesn’t punch and kick the walls as he did when he was bathed in the bath. We also had to buy a ~$2000 bath chair out of pocket to strap him down while we bathe him. The typical chair covered by insurance would not provide enough support.

Since starting medical cannabis treatment, we are seeing way less seizures, more moments of relaxation, more happiness, greater eye contact, and greater awareness of his surroundings. Throughout his life, he has had a lot of GI issues, including constipation. We have noticed better motility with his bowels as we have increased the medical cannabis. He also used to clench his fists so tightly he would cut his hands with his fingernails. He did this fist clenching almost 24/7/365. He no longer does this.

In reviewing the past ~3 months of online seizure data, his seizures have gone from 17% of days without seizures (likely less than 17% if I dig further into paper records sitting on a moving truck now) to 47% of days without seizures after starting treatment (47% is a confirmed, hard number). Seizures that were 5, 10, or 20+ minutes before are now under 2 minutes. His more mild seizures we can’t even tell if they are a seizure now they are so quick and unpronounced. He holds his arms out as if he thinks he’s going to seize and then the seizure never comes. And this is all on a low dose, having just started medicine. Seizure medicines usually take months to tweak to a proper dose and this is the same way.

Haleigh Cox and 150,000 Georgians that have epilepsy should have the medical option of this gift from God. Thank you for helping us come home and share this medical treatment with so many other people suffering. 

For your colleagues in the House and Senate, Georgia has a great medical tradition, including Emory, the CDC, and many health oriented companies and non-profits such as the American Cancer Society. We should step to the forefront on this health issue too and lead the way for states like Alabama and Tennessee that are considering legislation. Lets look at the science and put patients first. Medical cannabis is improving my son’s quality of life dramatically. It is our moral obligation to end the suffering of sick people. Lets pass some legislation this session before someone dies from unsafe pharmaceuticals. Compare the 40+ side effects (including death) of the most prescribed seizure medicine (Depakote) to the side effects of cannabis (none, virtually). Add to that the benefits that patients are seeing. It is clear the science supports medical use of this plant. Lets move forward with a bill in 2013 so Haleigh can live and Hunter can come home and stop being a prisoner in the state of Colorado.

Parenting, Tuberous Sclerosis

My Take on What Not to Say to a Special Needs Parent

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I’ve read with some interest several circulating posts regarding “Things Not to Say to a Special Needs Parent.” I’ve never reposted the links though. It’s not that there is anything wrong with these posts, and there is nothing wrong with the fact that others repost them, but I just find myself too much able to see both sides. There might be one or two I agree with, but there are always a few that I think are genuinely well-meaning. The people who write them do it from the heart because that’s how they feel. Others repost and comment that they totally agree because they have similar experiences. But sometimes I think these posts unintentionally leave people on the other side of the fence feeling like they can’t say anything for fear of offending us.

Some comments are insanely obvious in their offensiveness, and I understand their inclusion on these lists. In fact, it is sad that someone even has to point out that you shouldn’t say these things:

1. What’s wrong with him/her? (Many parents don’t mind being asked about disabilities. Just do it politely and out of earshot of the child.)

2. That kid needs a good-old fashioned spanking. (Or any other disciplinary type of advice). 

3. Were you taking medication while you were pregnant? (Really? Was YOUR mom taking medication while she was pregnant with you?)

But so many of the things on these lists I believe are coming from really well-intentioned people. Some of these things came from me at some point. To be clear, I’m not criticizing you if these comments upset you…I DO get it. And I’m also still fairly early in the game. Check back in a few years. Maybe I’ll feel differently.

1. I don’t know how you do it! or I couldn’t do what you do!

This easily would have come out of my mouth two years ago. It would have meant that I’m genuinely impressed by your strength. Now people say it to me. But the truth is, you can do it because you have to. If I had known before I ever became pregnant that Connor would have health issues, I would not have had kids at all. But life doesn’t work that way. If I can do it, you can do it. You’ve just been lucky enough not to find it out. So I choose to take it as a compliment. That’s me. But I do understand why it bothers some parents.

2. Have you tried…

For me, this is all about tone and presentation. This is not in and of itself offensive to me. I do not mind suggestions or telling me something you read or saw worked. I don’t mind when friends and family tell me that they know someone who recommended this supplement, or that they read an article that mentioned this type of therapy. You are simply giving me an option to look into. That is cool. What is not cool, is presenting it like that’s what I should have been doing all along, or that something is wrong with me because I’m not doing X, Y or Z. In my case, I will say the obnoxious comments like this have only come from online people I didn’t know personally. When I mention my son’s intractable epilepsy, don’t tell me I SHOULD be giving him fill in the blank with the latest hot supplement.

3. He seems fine to me!

I know my kid is delayed. But not having any other kids to compare him to I’m not always totally clear on where he stands on every little nuance. I don’t mind people commenting about the areas in which he is relatively on schedule or performing well. That being said, it’s going to come off very insincere if you say it when it’s a situation where it’s clearly not the case.

There is really just one thing I’ve found that I hate…like, beyond despise.

It’s the God stuff. God doesn’t give you more than you can handle. Or God gives special children to special parents. Or God has a plan.

I have never been a particularly religious person, but I’m not an atheist. I do like to think there is something after we die. I hope there is. But the thought that these paths are chosen and that my child and I were selected to deal with this makes me mad. I can deal with free will and the thought that things just happen because they happen and it’s up to us find our own path in life. The thought that it was part of “God’s plan” for my child, or any child, to be born with an incurable genetic disorder does not bring me any sort of peace. It infuriates me. I don’t want God to have a plan that included this because then that means the plan could have been altered so that he had been born without it. That doesn’t exactly make me fall on my knees.

But here is the tricky part. Some special needs parents do believe this and use these phrases themselves. What ticks me off, brings them comfort.

You won’t always get it right. Circumstances and moods change. Connor spent his first five weeks in NICU. His seizures started the day he was born. We met with countless doctors, nurses, therapists, chaplains and volunteers that would stop by his bed. A discussion of his medical condition would inevitably always close with, “Congratulations!” Congratulations on what? That my kid has some disorder I’ve never heard of and they can’t control his seizures? That he probably needs brain surgery? That I have no idea what is going to happen to him and I’m so scared I can barely breathe? But of course they said congratulations. I just had the most adorable, awesome kid ever born on the face of the Earth. I just wasn’t in a place to see it right then.

At the end of the day, it is really hard to know the right thing to say. All you can really do is have good intentions and be supportive the best you know how. We will let the ones that aren’t fade from our lives. 

Parenting, Tuberous Sclerosis

Merry Christmas! It’s a tonic-clonic seizure!

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I can’t believe Christmas is over already. Seems like it was Halloween a week ago. Connor had a good Christmas, despite some not so fantastic developments beforehand.

I blogged previously about his bout with bronchitis and I mentioned that instead of an increase in seizures, which can happen in times of illness, he had a major decrease. Turns out many other parents have experienced this when illness causes their child to stop eating much. Hopefully, that’s a sign that the ketogenic diet will work for him. Did I say ketogenic and not modified Atkins diet? Yes, you read that correctly and I’ll come back to that.

Turns out, a week and a half almost seizure free wasn’t worth it because once he recovered and started eating again, they came back with a vengeance. They were longer, rougher and he was wobbly for a bit afterwards. His seizures for the last several months have topped out at 30 seconds. Now they were lasting two minutes. And they looked…odd. I sent a video to his neurologist who called me with the %&*# news that Connor’s seizures had morphed into tonic-clonic (grand mal) seizures. Now, I knew they were rougher than the partials we have always dealt with, but you can read descriptions all day long of seizure activity and it still may not look exactly as expected. So they were rougher, but still not as rough as the grand mals I envisioned. I was shocked and not shocked at the same time.

So damn. A new seizure type. Common in TSC, but we had been lucky to go so long without that turn of events considering Connor’s seizures started at birth. Until now, other than partials, his only other confirmed seizure type was infantile spasms. I have sometimes suspected absence seizures, but those are tough to peg.

Shortly before this development, his neuro had changed his mind about the recommended course of action. As I mentioned in another post, we were trying to get him into the Children’s Healthcare of Atlanta at Scottish Rite or Egleston ketogenic diet clinic for consultation regarding modified Atkins and seizure control. They couldn’t get us in until March, four months out from when we sent his records over. It took a month for them to even make the appointment, and our neuro was quite perturbed that after a month of trying to get started we had gotten nowhere and had three more months to wait. He did not say this, but my guess is that he was on board with MAD when he thought we’d be able to test out the efficacy quickly. Now, that we are facing several more weeks of seizures, I suppose he wants to take a more hardline approach. With the appearance of tonic-clinics, I’m very much on board now, whereas before — I was NOT thrilled with the idea of keto.

So we have continued our efforts to get in earlier at CHOA and they also referred us to Johns Hopkins and UAB in Birmingham, which also has a TSC clinic.  Johns Hopkins also can’t get us in until March. So far UAB is the winner with a date of Feb. 4. So unless we get a miracle at CHOA, we will drive two hours to Alabama, which is preferable to flying to Baltimore.

In the meantime, we have upped his vigabatrin, something we were trying to avoid. His seizures shortened again and were less severe, though they still leave him wobbly. Most days he’s had one. Until two days ago when he had five. Yesterday he had one that left his right arm almost useless for 30 minutes after.

But on a happier note, Connor sure cleaned up at Christmas. We opened gifts at home in the morning with Chris’ parents who were in town, then headed to my parents for the afternoon and dinner, then stopped by Chris’ brother’s house where Connor went hog wild with his 10-year-old cousin Cody and their dog.

We can now start a family band, hopefully less annoying than Laughing Pizza, with Connor’s new keyboard, drum and xylophone. I continue to live vicariously through him by getting him a tent for his playroom (I can’t wait until he’s old enough for the Power Wheels I never got in the 80s). One of the gifts my parents gave him is the rideable airplane from Cars. He likes it until he accidentally triggers the mechanism that makes it light up and make noise. He takes off like a bat out of hell, so I suppose I will remove the batteries for the time being so he can play with it without fear of being eaten or chopped up or whatever it is he’s afraid of. He otherwise adores spinning the propeller.

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The Christmas gift exchange between Chris and me was rather perilous…for me. Chris is not a “stuff” person. If it were up to him, we’d have a lot more bare square footage in this house. He always makes a list, and I always feel compelled to find at least one thing not on the list. However, I’ve completed his collections (that I started) of Chicago sports team Mr. Potato Heads and garden gnomes. I knew he wanted the Lego Rockefeller Center for his office, so score! An off-list item. Except when I got home, I made the mistake of asking for the updated Christmas list since I had only looked at his November birthday list. Guess what he had added? Dammit. So I gave it a shot by picking him up a button-up shirt at Belk. I stuck to his beloved Izod, but veered from his color palette. I knew there was a 95 percent chance of exchange. Mine’s on the left, his exchange is on the right.

The hubs prefers a more subtle earthy hue...unless the Bears are playing.
The hubs prefers a more subtle earthy hue…unless the Bears are playing.

For me he did a good job with three necklaces he picked out on his own, in addition to some Loft clothes I picked. He also got silly with this, which surprised me because my excessive mug collection drives him bonkers.

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He also picked up a cow chip clip that moos loudly, as I am obsessed with black and white cows and hold to a belief that if I can get it out of the pantry with no one knowing, the calories don’t count. Massive backfire on his part. The thing is so sensitive, that even after being buried in drawer, open the fridge — MOOOOOOO!. Pour some milk — MOOOOOOOO! Turn on the sink — MOOOOOOOO! Then on New Year’s Eve it went completely batsh** and wouldn’t stop mooing even when we were sitting on the couch partying hard with VH1’s Happy Endings marathon surrounded by laundry (jealous?) I was upstairs when I finally heard Chris lose it and yell, SHUT UP! I heard a drawer being yanked open, so I rushed down to save my cow from possible obliteration.

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I’m also thrilled to say we made it through all of 2013 without one hospitalization! Since Connor will be admitted in order to start the keto diet, we will not be able to say that of 2014. 2012 gave us five weeks in NICU, a brain surgery and an in-patient VEEG. Here’s hoping we all have a medically uneventful year.

One last thing — please keep in your thoughts that one of our newer TSC families entered our world of seizures last night and had to welcome 2014 in the ER. I’m hopeful they will quickly find seizure control. He’s doing well I understand.

I was contacted by Dave Terpening Insurance Company to be part of their “I Was Thankful for Insurance When…” post on their blog. I love any opportunity to get the word out on TSC so check it out here.

Clapping with Grandma (Chris's mom)
Clapping with Grandma (Chris’s mom) and remembering Lost back when it was good.
My brother came in from NYC and refused to change a single diaper.
My brother came in from NYC and refused to change a single diaper.

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Mommy is so awesome, i even lover her Mii.
Mommy is so awesome, I even love her Mii.
Christmas Eve bowl-off.
Christmas Eve bowl-off.
Mommy has lost her mind. I'm not getting in that.
Mommy has lost her mind. I’m not getting in that. Mommy is also questioning why her footwear looks so orthopedic here.

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Flying with Uncle Carey.
Flying with Uncle Carey.

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Connor loves Cleo the dog.
Connor loves Cleo the dog.
Dining out with Cousin Cody.
Dining out with Cousin Cody.
Escape at the bowling alley!
Escape at the bowling alley!
A cool cousin is one that gets down and crawls with you.
A cool cousin is one that gets down and crawls with you.
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Parenting, Tuberous Sclerosis

Poor baby has bronchitis.

2 Comments

Connor is still sick. He seemed to not be running a fever after Thursday, and though he slept a great deal, he was somewhat active on Friday. But Saturday and Sunday he slept. And slept. And slept. He was also congested. I was hoping he was just working his way through the cold, but the amount he was sleeping was getting quite worrisome. He actually had his first sleepover at my parents Saturday night. He had a few bursts of energy there, but he definitely wasn’t himself. I took him into the pediatrician first thing Monday morning where he was diagnosed with bronchitis. Oh, and he had a fever again. Had his fever come back, or did my ear thermometer royally suck? I checked when I got home, and it told me his temperature was perfectly normal, even taking into account a margin of error. Fantastic. He was probably running a low-grade fever all along. He’s always warm anyway. He inherited that from his dad and I assume they are both secretly descended from the shape-shifting Native American tribe of Twilight’s Jacob. I was super cautious, always taking it from both ears multiple times and making sure mine was in the normal range for comparison because I know user error can be an issue with those things. At any rate, I do NOT recommend the ear thermometer from Safety 1st. I dug out his old NICU thermometer and stuck it under his arm. That method, which is supposed to less accurate, was far closer to the mark. And we bought a second rectal one for future situations. Apologies in advance, Connor. Fancy technology has never been my friend.

Since he was still doing so crummy, by Monday I did figure there might be another underlying issue, so I went in expecting to be told he had an ear infection. His ears were great. It was his chest that was terrible. It wasn’t his usual pediatrician, but one of the male doctors I hadn’t met before. Sorry to stereotype, but I prefer female doctors most of the time. Generally speaking, they put off a more empathetic vibe and listen more. (And yes, I have experienced the EXACT opposite with both sexes as well). Men often seem abrupt and more rushed. So I didn’t talk with him as much as I would with his regular doctor. But I was a tad hesitant that he prescribed antibiotics. I was ready for them when I thought it was an ear infection, but I thought, isn’t bronchitis viral? Yes, I should always ask, advocate and all that, I know…I just didn’t ask enough this time. I read up on it afterward, and antibiotics aren’t typically considered helpful for bronchitis since most of the time it is viral. But perhaps he was ruling out other possibilities, preventing another infection, being super cautious, so I am giving them. This is my first time dealing with Connor being sick in a manner that is not TSC/seizure related so I’m learning. Again.

The weirdest thing about all this is that illness and fevers typically cause a spike in seizure activity. Instead of a spike, we have seen a major decrease. I’ve caught two since this all started. He usually has 1-3 most days. A bright side, I suppose. If I keep him in viruses and covered in snot, maybe we can be seizure free?

He is better today. Still very tired, but he did summon the energy to throw a puzzle all over the floor in the playroom this morning. That room has stayed spotless since Friday. And he’s staying awake to watch the TV more today. Yesterday he slept ALL day.

But we did get his first sleep over at Grandma and Grandpa’s done. That was the first night he’s been away from both of us. I went to DC earlier this year, and Chris has had a couple of business trips, but it was weird to sleep in the house without him. When I woke up in the middle of the night, I checked to make sure the cats were breathing just so I felt like I was serving a purpose. But I did sleep until 10:15. It was AH-MAZING! No alarm at 8 for meds. I felt like I was 25 again! No… 30. At 25 I would have slept past noon. Chris and I used our free night to see Catching Fire (can I please be Jennifer Lawrence?) and eat at Marlow’s Tavern.

Here I present a montage of Connor’s varied sleeping positions at our home and my parents’ house:

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And a few bursts of energy:

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Accredo Pharmacy Problems, Parenting, Tuberous Sclerosis

A quick note on Accredo Pharmacy…

11 Comments

I mentioned a while back I had received a voice mail from someone at Express Scripts regarding my blog entries about my issues with Accredo. I also briefly spoke with her on the phone. I mentioned I still had comments coming in from readers who were experiencing major issues as well. She said she would definitely take a look. I do appreciate that the parent company reached out. And I really, really hope something will be done at Accredo. Something must change because the comments continue to come in. I’ve been adding them to the body of the post that originally got attention here. I will continue to do so. That being said, if things do start to turn around, I want to hear about that, too. Please let me know how it is going!

Update: Jennifer Luddy was the person I spoke with. She commented below with a way to contact her. Hi – This is Jennifer Luddy from Express Scripts. We do care very much about our patients, and if you have a service concern, we want to make it right. Please send me an email atExpressRxHelp@express-scripts.com, and I will assist you.

Check out this Facebook group formed by a reader to combat this issue here.

Parenting, Tuberous Sclerosis

Medical maladies and eating strategies for the picky eater that will eat anything — sort of.

Aside 2 Comments

I had a physical last week. When I got home, I announced that I only had six months to live. My parents laughed and rolled their eyes, a natural reaction from anyone that has known me for 33 years (they were there to watch Connor since Chris was working upstairs). Chris told me to stop it. He never enjoys my macabre sense of humor. I’m not allowed to play games like “What If?” or “Would You Rather?” He doesn’t like hypotheticals, where as I thrive on knowing things like, If I died, would you keep the cats or give them to my mom?  Or, would you rather be married to a donkey or smell like a port-a-potty no matter how many showers you take.

My doctor confirmed that she thinks the headaches I’ve been having are migraines — mild as far as migraines go — but still migraines.

I also took Connor to a dermatologist for a wart he’s had on his foot for some time now. One $50 co-pay and $4 for parking later, off I go to Walgreens for standard over-the-counter Compound W. Sigh. I did like the dermatologist, though. He was an old guy that put out the vibe of an old-timey pharmacist. AND he was familiar with TSC! Even though we weren’t there for anything TSC related, he saw his history and asked questions about how Connor was affected, and he was familiar with various organ involvement. It sounded like he had even been the one to diagnose people based on facial angiofibromas, who were otherwise unaware of their condition. It’s always nice to come across a medical professional that actually knows what TSC is, and that he knew about the effects beyond the dermatological made me quite happy.

In other medical news, CHOA is once again trying to give me what I now know is a migraine. We finally got the call to schedule Connor’s first visit to the keto clinic so we can consult about the modified Atkins diet for seizure control. Want to guess when the appointment is? March 18. March. 18. Lots of four letter words when I hung up. I’m still not really clear on how this is going to go. She told me the nutritionist would call me. Possibly to start the diet before that? I couldn’t get a real clear answer, though I expressed my dismay at waiting three months. She also couldn’t tell me how soon the nutritionist would call. So I think we start the diet via phone consult, which is better than waiting three months, but I sure would prefer meeting with the expert before making such a drastic change to Connor’s diet. But like I said, I’m not even sure if that’s the plan yet.

I must also accept the blame for making Connor sick this week. Connor came down with his first normal, run-of-of-the-mill illness. We’ve had seizures, brain surgery and weeks in the hospital…but not one bout of ordinary childhood illness. He woke up late Wednesday night coughing and ran a low-grade fever most of Thursday. No fever this morning, but still coughing occasionally. Fantastically, though fevers typically lower the seizure threshold, I saw no seizures during the course of battling his temperature with Tylenol and Motrin. But why my fault he’s sick? I recently blogged about his superior health and just this week, I thought, man, we might just make it to his second birthday with no viruses! My bad, buddy. I know better. I’ve been sleeping on the floor next to his crib the last couple nights because it makes me feel better mentally — my hips hate me though. Chris would have done it, but Connor doesn’t tolerate snoring.

So it has been a lot of lying around and sleeping, along with more PBS than usual. If I see this Mouse King episode of Super Why one more time, I will scream.

Progress in the eating arena:

On the bright side, it appears we are making progress in the eating arena. His speech therapist has been providing tools to work on his sensory issues with his mouth. He does not appear to have any other sensory issues whatsoever, but try getting him to use a sippy cup or eat food with no degree of pureeing has been about as fun as…as…as trying to make an appointment for anything at CHOA. To eat non-pureed food, it had to be cut extraordinarily small and he would eat in very limited quantities. But this week has been far more successful at getting him to drink from this cut-out cup (which allows me to see how much he’s getting, as well as prevent it from hitting his face making him buck away).

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He also ate this whole serving of mac-n-cheese. Just a couple weeks ago, I had to cut the pasta up and mix bites with pureed food so he wouldn’t just store it in his cheeks like a chipmunk. But he demolished the whole thing with no mixing or cutting this week.

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He also did well with this, though he didn’t finish due to stubborness. The bites he did take, he swallowed, while before this one was almost inedible because he just built a fortress of peas and meat in his mouth.

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These are his other fancy tools:

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The blue and orange thingy can hook to his clothes or seat and its purpose is to prevent him from throwing his utensils. Unfortunately, they slide out anyway, so that’s not really helping. The purple and green spoon is bendable to work on getting him to feed himself. Angling it should aid in helping him put the food in his mouth. This is all theoretical as he shows little interest in anything other than being fed or throwing spoons. Or removing food from the spoon with his hand. The purple tool is a textured spoon to desensitize his mouth. He hated it at first, but now it doesn’t phase him. That’s a Nuk brush on the end. He hates that bad boy. It is also to desensitize his mouth. Not just for eating food, but also for rubbing it around in there. The therapist added the rubber grip so he could hold it himself, I suppose not realizing that his complete and utter hatred for it means that if you actually put it in his hand, it will immediately be on the other side of the room.

Now if you’ll excuse me, he just fell asleep and I’m going to check his temperature. He’s made it pretty clear that if I stick that thing in his ear one more time, I get a Nuk brush in my eye, so cross your fingers…

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By the way, my blog is nominated for a couple of awards over at WEGO Health. Thanks to those who have endorsed me already! It’s not too late 🙂 to do it here.

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