Medication and Therapy

Photograph property of MyOnlySecret

This week has been frustrating. My 10 year old son has ADHD, a sensory processing disorder, and a moon disorder. He takes 3 different medications that help him with various aspects of his mental differences. We usually go through Walgreens and just pick up his medication but this month we thought we would try Express Scripts, since we have new insurance and we heard things would be easier and that it would cost less. Now I didn’t realize my son’s doctor would take a few days to order his medication, and then Express Scripts would send said medication via their slowest carrier in the world, or else I would have just told his doctor to just fax the RX to Walgreens this month….

We ran out of his ADHD medication….. (Sends S.O.S. signal)

Now I know not everyone “believes” in ADHD. But I would like to challenge you to sit in a room with my son for 1 hour…. with out his medication. Heck, he is hyperactive WITH his medication. This poor kid literally cannot sit still. He is jumping off couches, and having a hard time just “peopling”. It is hard to see him like this because we have been medication since he was a young child. We saw great improvements with medication and therapy. Now my son isn’t the “typical” ADHD that you think of when you hear about ADHD, no…. he’s the kind that literally cannot function.

My son is in special education due to his mental illness. He was a bright young child back before all the symptoms hit. He still is bright but a bit more…. aloof. He is out there with his imagination, and that’s fine. Kids can have an imagination, kids can go run and play. It’s when they can’t sleep due to their racing thoughts, the endless energy, the inability to see past themselves… it’s a lot.

I have had people tell me my son seems pretty normal for a child with ADHD. And then the medication wears off… (no literally, I had a sibling see this happen) at night time his pills wear off a bit and his inability to stay still spikes. People had this realization that I was not the mom who medicated her son for “no reason”. No we have a reason…. the reason is …. my son was not able to get an education with out medication.

This week has been hell . I knew by the time the medication was ‘shipped’ that it would be at least a day or two late – and that we would be out of pills. Now his pills for his mood disorder did come in on time, the essential ones that he takes twice a day…did not. Last night my son got ZERO sleep. He told me he kept waking up and that he is really tired today. I have been trying to make his pills last by cutting the dose in half -so at least he was not going cold turkey. But tonight and tomorrow he has no pills….

It sucks because we know they will be here either tomorrow or Friday – and we do see his doctor sometime soon – and I will be throwing an adult temper tantrum with his doctors office for taking 3 days to order his medication after we called it in THREE times.

I have been told by some friends that he might “mature” once he hits puberty, and that maybe JUST MAYBE, he might be able to stop some of his medication. It would be nice if he didn’t have to rely on medication his whole life. Life is not going to go easy on him.

I don’t fully understand this illness, but I know how it is to have a mental disorder. I have severe depression. I live with it … and that’s that.

Today I went to the doctor’s office for a cough I have had for 5 weeks now. And the nurse asked me if I had any thoughts of Depression. I said yes, but that I was not there at the visit for those concerns today. He told me to keep fighting. I think he understood that this was just something I live with, but I didn’t need medical attention for it today. He did make sure I felt safe, etc. Which I do. I am not suicidal right now. Just Depressed. I did tell him I would be making an appointment soon to get a new RX for my antidepressants though. I think that re-assured him that I was indeed taking my health seriously – I just had bigger fish to fry right now. Like being able to breathe. That seems important right?

They do want me to see a behavioral therapist though. I know I need to see one too but I feel like I only find doctors who stay for a year – and then they jump ship. My last doctor quit when I got pregnant – so … about a year and a half ago…I haven’t been seen in over a year…

Back to my son, his doctor is nice but he’s old school. It took a lot of pushing on my end to get him to not prescribe a controlled substance. We actually put my son on an antidepressant for part of his ADHD and it helped with his mood disorder. We found other drugs that we found work very well together. My son’s therapist quit last year also. Not his prescribing doctor…. his behavioral therapist whom he spoke to weekly. It sucked. We have not found a new one that clicks with us.

The only good thing about our insurance changing this year is the cost of medication. The plan we were on last year was a high deductible plan – I mean this year we are still on a HDHP but the medication is a copay. It’s separate. Which works for us – because every time I would go to the pharmacy last year I would pay $200 – $300 per medication and the pharmacy staff would feel bad for me. I reassured them that we were fine. We can afford it. We just wish we didn’t have to. But this new insurance only charged us 12.50 for 3 months of pills (this is only one rx, not all 3), but still, the cost of THREE months was less than just ONE month of pills. It is nice to have that option.

Oh and my medication? The one I want to go back on…was not covered by my old insurance… but it IS covered by the new insurance…now it’s not fully covered but… we can afford it. I just feel bad for wanting this medication… it will be 185$ for 3 months of pills…but those pills make me a better person…. so ….. yeah its worth it. I am going to get my doctor to write me that new RX soon so I can get back to being happy.

Now this post is a bit long – sorry about that – so I will end it for today – and maybe post on a lighter subject tomorrow.

But do you take pills or go to therapy… how much do you pay for your mental health or others?

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I am trying to connect to more bloggers – so if you have a website or a blog, link it in the comments :0)

Food Trials

Okay you get a second post today because I actually wrote most of my last post the day before, but I was just lazy and went to bed early before posting it.

Food Trials

My daughter has FPIES aka Food protein-induced enterocolitis syndrome, it is a rare food allergy. http://fpiesfoundation.org/ (for more information)

So far she reacts to Oats, Wheat, Rice, Broccoli, Pineapple, and Corn. Most of her reactions follow the typical FPIES reaction of severe vomiting after 2 hours of consumption, along with change in temperature, pale skin, restlessness, gassy, and diarrhea. She does not have any IGE reactions to foods yet (so no hives, or anaphylaxis).

We are doing food trials this month. That’s when I introduce new foods to her one at a time, and wait… I wait for her to get sick. So far with only a few foods on her list, we are pretty good, but the foods she has reacted to are generally found in almost everything. When I food shop for her, I have to read ALL of the ingredients, because I swear that the baby food companies hide things like RICE and OATs in EVERYTHING! (No seriously, go read a baby food package, on the outside it will likely say the fruits and veggies it has, and it will leave out the oats and rice that thicken it).

Here is a sample of what we buy for our little girl

Notice how certain foods have a giant T written on them? Those are new foods, with new ingredients we have not tested. The ones with out the black hand writing are safe foods. Quinoa has been a life saver for us since most baby foods have oats or rice in them to thicken them when your baby gets older. We also recently passed puffed millet. So now she can have some cereal that she can pick up herself.

I am lucky though. My baby has safe foods. There are other parents who have children who are literally allergic to everything. My daughter used to react to my breast milk, she spit up so much and I would tell the doctor about it but since she was not in any significant pain, they said she was okay. But once I stopped eating oats, wheat and rice, she stopped spitting up and gained a ton of weight. *listen to your gut instincts parents*

This is my daughter, Lillian, she is 13 months old this month. (January 2019)
Lily’s birthday cake was actually just ice cream with whipped cream on top (2 of her safes)

Why am I posting this? Well – when I first thought my daughter had a food allergy, the doctors seemed confused about the symptoms. It is considered a rare disease. I joined FB groups for it and did a lot of research. And like many parents of children with FPIES, my daughter’s doctors didn’t know how to handle this, or test for it (there is no test currently). So I am writing this to connect to others – if you have a child and you suspect a food allergy but the doctors won’t do anything, you are not alone.

I found a great support system on facebook groups. Just remember to not be afraid to speak up. You know what is best for your baby and you know what is normal and what is not normal.

Lily, January 2019


Friends?

Good Afternoon,

Why is it so hard to make friends when we get older? I know it’s not just me. But I find it extremely hard to find people *offline that would like to actually hang out with me. I don’t find it hard to talk to people online. There is a difference.

I have been using the internet since 1996. I have made friends via the net, some even stretch back 15 years! I ended up meeting quite a few of them as well ! Heck I met my husband online via a free dating site. But as I have gotten older it’s gotten harder to meet non-creepers online and actually feel comfortable meeting up. I made it a rule to not just “meet” with someone randomly. I like to get to know them, form a relationship or friendship and then meet.

I think maybe it has to do with my location as well now a days? I used to live fairly close to NYC but now I live in New Mexico. How did I end up here? Well, my mother moved out here from Texas. And when my son’s father decided he wanted to be with some other woman, I told him I was moving out to be near family. I didn’t think this through, I should have thought about WHERE I would be moving. I mean, New Mexico is a beautiful state, but whats out here?

Anyways, I do have a good support system on Twitter, but I am just so frustrated with trying to find some friends in person. I would like to go out to lunch occasionally, maybe hang out by going for a walk. I have two kids so pretty much anyone that would want to be my friend has to accept that. And I am married, so …no romantic stuff. I am literally only looking for a friend. Maybe I can try one of those meet up things again sometime soon? I have social anxiety so.. getting the strength to go to one of those is tough.

People tell me to try a dog park with my dog Gwen… well Gwen is a great dog, she can be shy too. (I KNOW, she took after me with the social anxiety).

This is Gwendolyn, she is a pure bred Irish Terrier. She’s a sweetheart.
This is our cat, Finnegan (I am sharing him too because it would not be fair to not include him)

Where do you meet people? Let me know, maybe I am just doing something wrong?

If you’d like to connect, I am @MyOnlySecret on Twitter. You can @ me, I don’t really do the DM though, so public messages please.

Trying to find my place in the world wide web and in life

Good Afternoon world,

I am in no way new to blogging. I have to warn you that I honestly am trying to find my way in life. I am a 33 year old mother of 2 beautiful, and very difficult children. Well, not the baby, she’s not difficult, she’s just a baby. But I do have a 10 year old with ADHD, a mood disorder, sensory processing disorder and possibly ASD (we are getting him tested very soon).

I have other blogs but I failed to keep them updated due to every day life, work, stress and just over all….I would say depression. Yes, I am one of the lucky ones, I have Major Depressive Disorder (Diagnosed back in 2003). I have lived with it through the years and sometimes I do okay. Other times, like today, I cry.

I don’t want to alienate anyone, but unless you have had depression, you likely will not understand it. And even when you have had it, if you are really happy right now, you sometimes cannot connect with others who have it really bad. It’s a really sucky thing to have. For those of you aware of what depression is and how it is treated here is my shake down so you can understand me better.

I have social anxiety, but I do not have the big “panic attacks” that some people have, I just stress about EVERYTHING. My body sometimes feels like its tied into a huge knot full of pain because of this. I have MDD (Major Depressive Disorder), and have had it since I was a teen.

I am not currently medicated for a few reasons. #1 : cost of medications, #2 : my psych doctor left his practice and I have not found a new doctor, #3 : I want to get pregnant again in the next year or two and am apprehensive about starting and stopping meds all over again (we just did this, I have a 1 year old), #4 : Depression lies, sometimes I just don’t feel like I deserve anything. Including help.

Why blog now if I have failed in the past? Well… I need to blog. I just went PRN at work (I am a medical coder and I work from home) – so I am no longer full time. I did this to take care of my kids and I need to also do some self help. Will I keep this up? I hope so. Join me in my journey. I don’t mind talking to people, you can also find me on Twitter (@MyOnlySecret) you can follow me there and I do follow back often. I also want to meet others who might connect via the differences and similarities in our lives.

So hello, and welcome to my blog. Follow me and keep up to date, and if you would like me to follow you, comment away 🙂 I love to read when I have time, and I love to listen to audio books with my kids.

-MyOnlySecret


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