Anxiety in children: what’s wrong with that kid?

ImageDisclosure: I am not a medical professional – what is contained in this post is my own opinion as a parent.

Yesterday I attended a family reunion and while we were sitting at the table I had a discussion with someone who’s teen has been suffering from anxiety symptoms for years – I’m guessing since childhood.

The kid in question, just short of graduation, dropped out of school. He was finding it very hard to attend school at all as I remember the parent having told me about it a while back. Unlike his friends, he doesn’t drive or isn’t involved in sports. He works two days a week and I’m guessing he’s hiding at that place as I’ve never seen him there. In a previous discussion, the parent had told me he would no longer support him financially or otherwise and would give him an ultimatum. Of course, he’s out of solutions and out of desperation is trying to push the kid to the limit to get him going.There’s no doubt here that he’s being told by everyone what to do with the “ruthless” kid to get him going. The parents here appear as the victims of awful kids. I know, because I’ve been there.

An aunt was sitting at the table openly criticizing the kid and saying he wasn’t sick like my daughter was. The thing was that not so long ago – before my daughter’s diagnosis – that same aunt was telling other family members that there was nothing wrong with my daughter, that she was spoiled and manipulative.

As the mother of a teenager who’s been paralyzed by anxiety for years, I have my own thoughts on the topic and I’m pretty tired of hearing ignorant comments on kids who appear “normal” but can’t get on with their daily lives. I will say this:


What’s the likelihood that a child will not want to play, go to the circus, zoo, beach, or participate in other fun games or events such as a birthday party? My daughter used to sit under a tree in the shade when she was three. She was very sociable but couldn’t keep up with anyone and was more comfortable with adults.

What’s the likelihood that a teen will not want to go out with his friends to a school dance, party, or sporting event, or better yet that he will not want to drive a car? My daughter has never been to a school dance, will never know what it’s like to graduate from high school as she can’t attend school – and it’s not just because of her physical condition. She loves Dallas Green and I got her tickets to go to a concert but the preparation it took was excruciating. It didn’t matter that she wanted to go more than anything – it was hell for her. Her IQ is very high and she will make it to college one day, I’m sure of that. She’s pretty, tall, and has beautiful hair. She’s not particularly shy and is very articulate. Does she sound like someone who can’t go out? Not at all when you first see her.

It doesn’t matter how healthy, cute, smart, normal looking the kid is, if that kid can’t go about his daily activities as other kids can, there may be something serious to worry about – and I’m not talking about mental issues.

Anxiety is often associated with various illnesses. From the information that’s available is appears as though children, teens, and adults may become anxious because they are suffering from an illness. It doesn’t come out in lay terms to explain that certain illnesses cause anxiety from a physiological standpoint. Although dated, this 1990 article by Billings states that “Certain medical conditions may present as anxiety so that the unsuspecting physician may inaccurately misattribute a patient’s symptoms to a psychiatric rather than a medical condition.” This year, my daughter was diagnosed with a connective tissue disorder and orthostatic intolerance (OI) and the report states that her anxiety and panic attacks are of physiological (medical) rather than psychological nature. In other words, her psychological state is caused by her medical condition and otherwise related thereto.

Other than her behavior as a young child, where she essentially tried to exclude herself from any or all social situations, the first sign that something was terribly wrong should have been noticed when her anxiety symptoms couldn’t be relieved by any type of mood medication, nor cognitive behavioral therapy, nor threats. And yes, “threats” as we threatened to take everything away from her and it went so far as to send her to foster care as I was deemed an irresponsible parent who couldn’t handle my oppositional and controlling child. And yes, that really happened.

The first signs of relief came when she was first diagnosed with a thyroid disorder. A few months into thyroid treatment, the anxiety medication started kicking in – it wasn’t 100% effective, but it was so much better. And the literature shows evidence of that. Here’s an article published in 2012 by Hage and Azar in the Journal of Thyroid Research where the first paragraph says it all.

Around the same period of time, she was diagnosed with polycystic ovary syndrome (PCOS) – a condition where anxiety is often seen. This meta-analysis published in 2013 shows strong evidence of that. That being said, how do we know that her mood is affected by PCOS itself and not the thyroid issue at this point? I’m not sure just how much overlap there is between the two conditions, which by the way should be monitored more closely. Her thyroid levels appear to fluctuate considerably (for some other reason I will not get into here) and she may not be receiving sufficient thyroid medication. Furthermore, she’s on Metformin to treat her insulin resistance but is not receiving the full dosage usually suggested for PCOS (note that guidelines are not necessary updated to include this treatment option). There’s one thing we know for sure: Whenever she takes a break from hormone therapy (every 3 months or so) her anxiety levels increase and it’s a difficult week for her and for us.

Recently, with the OI diagnosis and its treatment which includes a vasoconstrictor and salt tablets to increase blood volume my daughter’s panic attacks and anxiety have diminished considerably. Her mood has notably improved. It’s still not perfect but it is remarkable.

During the appointment with the neurologist who diagnosed my daughter, I asked the following question “What child doesn’t want to play and run outside?” And he replied: “A child who is not well.”

I stopped the aunt dead in her tracks at the table. I rarely speak up as to not intimidate people in front of others, but what got to me was the parent sitting across from me who suffers greatly because of what is going on and the things that society is telling him to do to correct his teen’s behavior when that’s not the solution.

As parents and adults we need to represent these children in order to stop this madness. No one should be robbed of their lives or be left to fend for themselves. As adults we have the ability to make a difference for the children.

Many illnesses are connected to anxiety and how this happens is not well understood. Treating anxiety while ignoring an underlying illness may not improve quality of life which is low in these children.  Let’s bring that to the table shall we?


42 thoughts on “Anxiety in children: what’s wrong with that kid?

  1. Great post!!! One of my daughters is very shy and suffers from anxiety, she misses out on so much and I feel it is leading to depression, she went to her gr. 8 graduation but could not participate in the “after party” saying she “had a headache” she finds it incredibly difficult to participate in sports, social functions or simply go for walk or shopping..thank you for writing this post, I for one believe you are an “authority” on the subject 😀 Thanks again.

    • Wow, you read this while I was still editing. A few typos.

      I’m so glad you read this. If you’ve been to health professionals and nothing has come out of it for your daughter, my advice is that you print this post and the articles that go with it and speak to your doctor again.

      Since I started doing that, the diagnosis have started coming in. We need to break this silence. I don’t care what they say, it isn’t normal for a child to be SO anxious that she is missing out on her life.

      My daughter is now suspected of having Chiari malformation. If that is the case, this would also be behind her anxiety.

      Hang in there. And if you need any help, please let me know. Maybe I can offer a little bit of information. Are you Canadian by any chance? We have an association here called the IFC that helps a lot when something like this happens.

      • We do live in Canada, we have an appt. this Friday. It isn’t normal for a child to miss out on so much, it breaks my heart to see her this way, every day is such a struggle for her and I feel helpless. I will print off and write down questions for him. Thank you again for this amazing post!

      • You may want to contact the ILC foundation in Toronto. They are of considerable help. I can give you the contact. They have links with help professionals and are very aggressive in having the kids followed the same way. The are now acting at a distance for my daughter. Please let me know how it goes! Good luck.

      • I should tell you that the process before everything really starts kicking in can be very long. It took me two years and there is still much more to go through. Just know that your little angel doesn’t have to go through that for life. Things will get better. 🙂

      • I know they will, I was very similar to her growing up, was really tough and no real help at the time. I have however developed some great coping skills. 😀 Baby steps, appointment with the Dr Friday then we take it from there, our Dr. is fantastic at least it will get the ball rolling. One day at a time.

      • I’ve just read this very quickly and will print off to read completely, from what I’ve read this could be something she suffers from, her heart rate is extremely high, just two months ago she had a Holter monitor to monitor her heart rate and had a small diary to fill in throughout her day, she suffers from headaches, shortness of breath, and lethargy….thank you so much for this just in a few short minutes of reading your post and the information you sent me , I am seeing the light at the end of the tunnel. 😀

  2. As is often the case with unsolicited advice, nobody seems to know more about your child than someone who is NOT their parent. Good for you for standing up to the aunt. There is value in what you and your daughter have been through. This post is a great example of that. Thanks.

  3. I’m SO glad you spoke up when your aunt said that and I do know it’s not your nature to do so (pat on the back!). I’m sure your other relative appreciated it very much. This is a really great post on a subject that is so misunderstood. There is another genetic disease in my family (I’ll keep quiet on that) and the comorbid conditions include anxiety, OCD, ADHD, and on and on. Luckily, this is well documented and understood by the medical community now, but you are right that other diseases can cause anxiety as a result of the disease itself and it is NOT recognized. I do hope this will change in time. I’m so sorry about the foster care fiasco–you’ve mentioned this before. I can only imagine how awful and even confusing it would be, as if the rug were pulled out from under you. Gut wrenching. You were doing all that you could (as if the gov’t knew better).
    Hugs, A

    • Thank you, A. Maybe some day I’ll be able to write about the foster care experience itself. They were so convincing that I almost believed them…

      And yes, the aunt spoke loudly and I was very direct when I answered – perhaps more than I should have been. We were at least 20 people and everyone went silent when I spoke; I think they were surprised mostly. Then of course the conversation was diverted. But to the man sitting across from me I said: “You can push him as much as you want and give him as many deadlines as you want, if he can’t move today this will not be better six months from now”.

      All I’m saying is that MAYBE there is an underlying condition. And if not, well some patients who suffer from severe anxiety are getting good results from Seroquel. My daughter’s psychiatrist was saying that to me not so long ago.

      I’m curious about that illness you mentioned… 😉

      • I think you did the right thing and anxiety should never be seen as something that needs guidelines or pushing–it’s a mental health issue. I just can’t discuss my family’s health issues on here–some other bad stuff happened last night online and I’m just not sure I even want to keep blogging. I’m a mess with my own issues and my cat. I’ve been thinking about this for some time. I say too much and then pay the price due to the losers out there who hide behind their computers. Have to get ready for PT (with no sleep last night). Sigh…

  4. Bravo to you for speaking up to Auntie Dearest!!!! Dear God self-righteous, know-it-alls piss me off!!!! And oh I hope you spoke to the parents, because they need some talkin’ to. Who I feel worst for is the young man. He needs support. He needs to understand himself and record over all the negative tapes he has recorded and all the negative tapes all the people in his life have recorded. Can you imagine the internal diaglogue he has? The negtive thoughts he must have? That is the saddest part of the story. Oh I hope he gets help…

    • It was the second time I spoke to the father – a single dad. This time I told him things would only get worse. I think he’s torn between people telling him different things – my cousin, his girlfriend, and her mother who is that aunt I mentioned. I’ve been trying to connect with the dad so that he introduces the boy to Gen, thinking maybe she could speak with him or game with him on Xbox to establish a connection. But so far, nothing. It’s sad and it chews me up on the inside.

      • What does dad think, intuitively? Sometimes one must block out all the external chatter and just listen to instinct. You have done well, keep being there, making offers, sometimes in cases such as these that is all you can do.

      • You know, he’s really following what people are telling him but then I could tell he was miserable at the table. He said he felt that since his son was able to work two days a week it meant he was fine. I told him not to be fooled because my daughter was telling me how difficult it was for her to do what people asked her to do when she was forced out of the house and the mental planning and effort she had to make is beyond belief. I told him not to assume it was easy for him to get out there even if he did some stuff.

  5. Wonderful post! Too many people seem as if they not only don’t “get it,” they don’t want to. They’d rather put any type of mood/psych/behavioral issues down to bad parenting and/or “bad” kids than admit there’s much unknown and incurable, sometimes untreatable, in the world of Western medicine.

  6. Great post!! Having a chronic disorder and living a life that is by no means easy has really taught me to look at others differently in their various situations. I was always an empathetic and sympathetic person but now I’ve found that those traits in me have increased tremendously. Suffering (whether it’s first hand or through someone you care about) strengthens those traits more than anything in the world. I find myself so much more open minded about what others are going through, and I really noticed that in you in this post. It’s so easy for others to judge or tell you what to do with something they know nothing about (I seen so much of this directed at my parents and brother during the horrible years my brother had severe behavioral issues). I’m glad you spoke up, that one supportive voice can mean the world to someone who’s constantly getting the opposite end of it from everyone.

  7. Sheepy Sheep,
    You have to keep posting so I can blab with you (and I like your posts). Hope you and Gen are well–or should I say that Gen is steadily improving. Dr. Fraser is excellent btw if you end up going that route. He’s all over the journals, etc. MM (kitty) and I are seeing the scary oncologist on Wed. for the grim news and I’m praying for a miracle–all bad in the journals which I already knew, so may be offline for a couple days as I have to get up so early you wouldn’t believe it and will then have a breakdown again if I can’t do anything for her (or even if I can b/c it will just be a stall).

    Within a week or so I’m going to put a “Taking A Break” post up (just a short note to readers) so we can chat on there, as well. I’d like to keep MM’s post just about her. Sorry I have the stupid e-mail issue. Now I’m freaking out b/c someone copied or did something with the post where I totally bashed my doctor–can’t figure it out. My eye is permanently scarred from him!!! Well, I’ll ask you somewhere else, but it showed up in the section where people click on links and I don’t have a link to it, so worried now that my pic is up. Oh, Canada is so much better without all the litigation.

    Feel free to delete this as it has nothing to do w/your post–just wanted to check in and tell you what was going on and make sure you guys are OK and say that I’m thinking of you. My blogging friends (just friends–you know who you are) really surprised me when this happened. I thought people would think I was a crazy cat lady, which I am. I’d contact you via your new route but it didn’t work out with the real crazy lady I briefly knew on here. After it goes to your e-mail, then you are e-mailing me to mine (sans WP), which is tied to my stupid Hotmail address, so I have to go back to the contact page to reply. Total mess. I love Chrome but it has this issue that Gmail doesn’t have (or I can’t figure it out) and I can’t see in Gmail and don’t want 2 separate accounts–and so cluttered!
    OK, talk in a bit… A xo

    • Hello A! Always nice hearing from you! I’m sorry this thing happened to you regarding your post. Some people have nothing better to do! If I were in your shoes, I’d feel the same way.

      Gen is doing better than before but not well enough for physio which is a real problem right now because she has to exercise to relieve some of her POTS issues. I’m not sure what to do at this point. Trying to hang in there and be positive. We’re seeing her doctor on the 15th and maybe that will shed some light on what we’re suppose to do or not. I always tend to push her but to no avail – I find that things get worse that way. I just so want her to be able to do her schooling – it worries the hell out of me.

      I’m also hoping you’ll get better news for MM. Poor little girl. Plus you guys are a pair, and no you are not a crazy cat lady! Last year, Cole had a little growth on his armpit and it nearly drove me crazy. Ran to the vet who said he has blocked sebaceous ducts or glands or something of the like. Since then he’s been growing them all over. They’re tiny but are not reassuring to me. Plus they really seem to bother him. Also, last summer he started coughing every time he’d get active. He obviously has something going on but we can’t hear it at the vet. I can’t afford to see a cardiologist with him. So I’ve come to the conclusion that since he’s not suffering and his doing well for now, I’m just going to let it be. He has serious anxiety issues and last year bit someone badly because she plunged her arm down in front of his face (she wanted him to sniff her). He felt cornered, took the shape of a hissing cat and all hell broke loose. Anyway, it’s a crazy story I’ll share with you sometime. 🙂

      And don’t worry about the mail stuff! We’ll figure it out. xox

      • Oh no, I thought Gen was already doing physio–where did I get that from? Has she tried doing it lying on the mat (low table)? I would think light exercises that way would be OK as I see very old and debilitated near me at PT doing things that way. I do hope the next Dr. appt. will offer anything. Btw, nothing happened on my latest post–I confused you, I just am trying to keep it on my kitty so will put up the other one soon.

        I grew up with a dog that was 1/2 German Shepard and she was very nice, but had that protective streak they all seem to get (no anxiety as we got her as a puppy–actually, probably did from the crazy house). Sure glad those lumps were benign (dogs seem to get more of that) and the cough may be a little asthma. Moush Moush has it and coughs with the humidity, but as she’s not active, I can’t say if that makes it worse. It sounds AWFUL and I pat her chest until she clears everything and back to new! X-rays show asthma, even with no wheezing and the phlegm-y cough. I wonder if you can find info online if it sounds like something else? I don’t think cardio problems would cause a cough so save your money. Yes, her appt. tomorrow is going to be on the credit card (like the biopsy). At least I still have my savings–even if my surgery took a huge chunk out. I don’t know what I’d do w/o it. I only buy needs and not wants (except my ridiculous hair products for my crazy hair) and have a small deficit each month, but if anything can be done to buy MM more time, they also have a thing called care credit or something, but would rather not deal with interest if I can.

        Stay hopeful! I’m trying a new med after 6 yrs (that I mentioned to the doc, of course) and am having issues with it, but did get some better pain relief for a couple days before I had to lower the dose. So, some hope is out there.

      • I was referring to that older post you mentioned where someone had done something to make you uncomfortable (where you had bashed the doc or something).

        About Gen, she’s “enrolled” for PT sessions for a while now. BUT, she is so not well that on most days she can’t get out of the house. She can do what they teach her there at home – mostly exercises to strengthen her ligaments which are important of course. Gen suffers from extreme anxiety issues which have gotten way better since she started treatment for POTS but still, I’m not sure what’s pulling her down this much. She has lived since birth with many of her physical symptoms (head being to heavy, headaches, pain, lack of energy, and so on and so forth) and it’s hard for me to understand because she rarely speaks about anything. Physically, the cardio had told us she was like a 75 year-old person. But my mom is 75 and she’s very fit and active. My grandmother who passed at 94 was fit and active. Not sure what to compare her too. There is a lot of pain also and I find that she is now eloping whatever she knows will make it worse. The thought of going to the dentist for her bi-yearly check up is driving her into her shell. We’ve done 3 or 4 physio sessions on the recumbent bike and she did well – she was able to do up to five minutes including many breaks in-between. The PT feels Gen is brought down by the sessions and is not sure if she can handle them right now. It’s so complicated. Not sure where to look to. Maybe it’s the possibility that she may indeed have a Chiari malformation and once this was treated, perhaps she could stand at least a minimal level of activity. I really don’t know – all of this this is pretty awful.

        About Cole, if I throw the ball for him he’ll fetch but won’t be able to run back to me. He appears fatigued and out of breath and will just lay there. Maybe you’re right and he has asthma. Furthermore, I find he’s better this year then he was last year. Took him to low tide which is hard because he was running in water up to his shoulders and he did really well. He was tired but not coughing. 🙂 And yes, I think he may have been protective of me the day he bit that woman. He doesn’t have a mean streak in his body. He’s very gentle and loving with everyone – it was a freak thing.

      • Sorry I got confused so much–it’s probably all the stress. Yes, I’m freaking out that my doc got a link to that post or something, even though I don’t mention his name. Anyway, I got a bit of hope (no real cure) and some answers from the oncologist today. Also got 3 hrs of sleep and the monsoon is back so I’m not all the way here, but wanted to get back to you. MM had a CT scan which took a long time as they had to give her anesthesia and I’ll know the results tomorrow. We need to see if these new tumors (another popped up) are superficial enough for surgery as she has hardly any connective tissue left there due to the amputation (they removed muscle, etc.). Scan will also check all her organs for metastatic disease. Either way, she will soon go on a new, off-labeled chemo drug that is cheap and a pill (!) and can work very well even with this type, but there are no studies yet and it’s hit or miss if it works. Her vet has only used on 2 cats with this and 1 is doing OK and the other didn’t respond, but that’s too small of a group to know the % who do respond (with no toxicity issues, which are unlikely). So, hoping it will work and she can take that and maybe just live with a low-grade cancer (and have surgery). I was so tired I got a bit lost if the drug can actually get rid of it or not–it cuts off the blood supply and does something to the genes (need to research this week). We believe she has a cancer related to a vaccine (VAS)–they used to give these in the scruff of the neck (inoperable) and now give lower in the hind leg in cats. I won’t bore you as you’re a dog person, but this was a concern last time, but we thought no as the tumor was in her shoulder. The thought is that this may be a new cancer and the vaccine created an area that became predisposed to cancer for life (akin to bad sunburns and skin cancer later on). Really sucks, but I got an answer and her oncologist is so wonderful and compassionate (what’s that?)–wish he were an EDS doc, too! Just thought I’d share what’s going on with us.

        On to Gen… I thought she had cranial instability per the last appt.,–is the doc leaning toward Chiari now? I’m familiar with the latter more as when I thought I had fibromyalgia, it came out that a lot of fibro people really had Chiari 1 (probably EDS in my mind). It’s so overly Dx’d. Did she have an MRI and formal Dx of anything yet? I hate that you have to wait up there as you can get imaging so quickly here. We all know the Dx is everything.

        I do hope you can just take 1 issue at at time. If you try to tackle all of Gen’s issues at once, you’re going to end up in the ER yourself (happened to me!). Seriously–it’s too much for anyone, Sheep. I know you are THE BEST MOM EVER, but can she hold off on the dentist (like 1 x yr)? I only went 1 x year as a kid as that was the norm and never had cavities. I can tell you are SO overwhelmed and it’s because the issues ARE so vast. May I make the teeny suggestion again that you take advantage of the therapists you mentioned (through one of your jobs). Being a caregiver is very hard–look at me with my cat! Imagine a person! I don’t know what the heck happened with my counselor, but he is my lifeline right now and the only way I am not a total wreck (was for a few days/comes and goes) due to my cat–I know not the same as Gen–but also everything else I have on my plate.

        Lastly (so long), I think if Gen is still doing some exercises at home that’s better than how she was before. Maybe “before” needs to be the baseline so that way everything above that is better. Same with me. My baseline was stuck in a condo and a deconditioned mess. So, my pain is still awful but if I just keep going to PT once a week and doing my stuff in here, which I can do, then better than baseline. I just have to keep building from there. Also, do you think Gen may have a bit of a social phobia or agoraphobia from being home for so many years? Just a thought about why she can do PT at home but not at the clinic, etc. Just a thought as I’ve dealt with that, but not personally. Just sounds familiar. I’m sorry Gen gets anxiety from POTS. I felt like I was about to fly (worst fear of flying here) for the past 2 days and do know what it feels like it and have a Hx of panic attacks (the hyperventilating kind), but they’re caused by situations. I do know that people can be totally incapacitated by it (or agoraphobia, etc). Well, one issue at at a time I guess–what else can you do?

        Well, that was way too long. I shouldn’t comment after a day like today–hope any of that was useful. I don’t know how I’m even awake….
        Hugs ❤

      • I use to be a cat person. Really. I had this beautiful charcoal cat named Felix. I only became a dog person when I got Gen a dog and she (Hailey) was keeping away from her because she wasn’t well. It doesn’t matter what kind of pets we’re attached to, they mean the world to us. I know you are going through something very difficult. Don’t hold it in, A. Love hearing about MM. I sure hope the chemo pills makes it all better! They probably work by “cutting” dna rungs in the bad cells – the one that no longer go through apoptosis. I’m keeping my fingers crossed and sending good thoughts your way!

        About Gen, it’s just that she needs to be checked for Chiari as well. She’s having serious hearing issues and bladder problems as well (lack of control). I’m suppose to complete the paperwork for her to be seen at that clinic in the states. She has had a CT scan a long time ago as well as two MRIs. They didn’t reveal anything but then I’m now being told that she needs to be standing during the MRI for proper assessment. I don’t think we have such a machine in Canada. Something is definitely not right as she doesn’t tolerate anything (physically). And you are right, I need to take one thing at a time. I am mentally avoiding the whole thing – just taking one day at a time. I know that doors will open for her soon. The ILC foundation are of great help – I spent quite a while last night with them on the phone again.

        The agoraphobia was really really bad but apparently also part of the OI issues. It is so much better since she’s on the meds – not sure how this works. Now she’s not afraid of going out anymore (I’m still not used to that) and it seems to be a physical issue mostly. It used to be that she couldn’t even look at people.

        Thank you so much for this comment and your suggestions. They do make a difference. I hope you can rest well today as I can’t imagine what you are going through with your condition and having to be out there like that with poor little MM. Hang in there! ox

      • Thanks for your thoughts, Sheep. ❤ It's been a crazy 48 hrs and I dropped MM off last night at the clinic due to my driving (vision) issues for surgery today ( in a couple hrs!)–they won't be able to get the wide margins–just spoke with the surgeon. MM is not happy being there at all and I felt so bad, but I couldn't get a ride so just did what I had to do. I also got up at 7:30 am (awful)–you'll be so proud of me. I have the worst jet lag from this week! I so wish this was the 1st cancer and we could get the wide margins like last time and it would be a cure. I'm putting all my eggs in 1 basket with this new drug.

        So, the cancer-targeting drug (Palladia) is our only hope. It's not actually chemo from what I researched (did I mention?) and I'm SO GLAD YOU'RE A BIOLOGIST! I do know about the drugs that attack the blood vessels to tumors, but not the DNA aspect. Thanks for the info–I need to research it more but no time and now I'm in worry city. Anyway, surgeon feels he can get the 2, superficial tumors (one was partially removed in the biopsy), but the microscopic stuff will be left behind and you know how that goes and and fibrosarcomas grow so fast–that 2nd one just popped up in a week! As it will all be microscopic and the creepy tentacles again, I'm hoping the Palladia will work on that. So worried! I really do think it can be a cure if it works.

        Back to Gen–how did I know she'd had agoraphobia? I'm glad the meds are helping that. OK, I don't want to add anything to your plate, but when you mentioned the bladder issues, a light bulb went off. Have you heard of tethered cord? This is fairly common in a sub-group of EDSers. Something to think about and TREATABLE with surgery from what I've read with EDS, so back to Dr. Henderson I presume. How soon 'till she can get an MRI? Jeez, I got a CT scan the same day for MM!

        More info in case you haven't heard of this and other symptoms seem like Gen, too. Ignore the spina bifida connection as I've heard of this over and over again with Type III EDS as mentioned:

        I so hope you get an answer and an MRI as soon as possible. I know it's out there (I really feel this) and wish you guys were in Baltimore, too. The monsoon is awful here right now–came early again–and I feel so sick so I think it's best I stay in the normally dry desert and deal with the not so great docs here. Argh. OK, off to worry about kitty again and then clean this whole place and make a nest for her before she comes home Sat night.
        A xo

      • Look at the mode of action of Palladia under the clinical pharmacology subtitle. The trick is to inhibit growth by inducing cell arrest and apoptosis (death) which is what is faulty in cancer cells. Sounds like a good drug. Lets keep our fingers crossed.

        And yes I’ve heard of tethered cord… Spinabifida occulta was seen during a back x-ray but then removed from the file. I still think it’s there but anyway, whatever it is we need to correct it.

        I’m really proud of you and amazed at how good you’re handling this nightmare. Still keeping good thoughts for you and your little girl. xox Big hugs to both of you!

      • Dr. Sheep (friends of all other animals),
        Thanks so much for the link, even if your explanation made way more sense to me (hence giving you the doctorate!). Lol. Omg–you wonder why Gen is so smart? I just kept re-reading that section (and scratching my head) and then freaking out over the side-effects and dogs that didn’t make it w/mast cell tumors, which is what it’s labeled for. I thought this was used in humans, but now I get why you have to wear gloves. Sort of spooky and MM hates pills!

        The thing that’s really making me nervous (aside from no studies, etc.) is that this is off-labeled in cats and the only data I have to go on with fibrosarcomas, which they are aiming for in cats, is our oncologist saying 2 cats like MM couldn’t have surgery and 1 is alright w/Palladia and the other didn’t make it. I know it’s probably not a flip of the coin, but that’s all I know (aside from a blog I ran across whose cat took this and didn’t made it–nooooo!). I just wish they could have gotten those wide margins and then I wouldn’t have to even worry that much like last time with the huge, deep tumor.

        Anyway, I really do appreciate your research and I sure have found out who my real friends are on here through this, not that I was worried about the Sheep! Wonder what those fake-followers are up to or the ones who popped by on occasion? Argh. I’m glad you know about tethered cord (figured you did) and now that you mentioned spinabifida occulta that seems even more suspect. I’ve never heard of that, but went to school with a couple kids with full-blown spina bifida. Hmmm. Maybe Gen can just get an MRI at a vet clinic up there if they run like this place. I know that sounds terrible (excuse me), but how long does this take? Well, it took me 5 mos to get an echo (which is why I made the Canada joke in that post). How ridiculous! They have a cardio at the vet clinic… Hmmm. I feel so bad about the stupid wait and poor Gen!!!

        Lastly, after I have my initial freak out about things, I tend to be the eye in the storm and go back to all I learned from my father about keeping it together and staying VERY organized, which helps with the madness–like the “one day at a time” concept. My father claims to have ADHD from the neurological disease in the family (seems overly focused like me?) and he’s big on being organized and having lists, so I learned all that as a kid. Too bad he’s such a putz now (oh, word for male anatomical part in Yiddish). I did get the whole room cleaned (like a hospital!) and have a little area for MM under the table all set up for when she comes back. I think I did 5 loads of laundry in the laundry room here to get everything clean and free of any stray cancer cells–like they just sit around or something! I’m so worried about her undressed incision and the very rare event that they actually got it all in surgery. So, no sleep again, level 9+ muscle pain, nauseous, monsoon-y mess, but I knew I had to do it so I could bring her home tomorrow nt. And people bugged me about never having kids. Ha!

        Talk soon… You’re such a gem and I will get that “Taking a Break” post on my blog once she’s settled so I can be reached on there. I think I want a pic. of her recuperating in her little nest. You can always contact me on any other post if need be–no problem at all.
        A x

      • Hi A. Can’t wait to see how everything went. I wanted to tell you as well not to look at PI information too deeply. I’m always interested in the contraindications and mechanism of action. The reason for that is that as you probably know, research is governed by the ICH (International council of harmonization). The good thing about that is that all over the world, we can develop drugs and treatments and establish guidelines and rely on all of them – meaning share them all over the world. Drugs are hence prepared in consideration of guidelines that are based on common grounds. As such a lot of the information contained in there is “warranted” and should mostly be taken with a grain of salt. I’m talking about side-effects and so on. There are so many things behind research and as you know, just with EDS it is so difficult to come to a full understanding of the symptoms and what goes hand in hand or not. Therefore, the side-effects you see listed are there because of certain criteria but you don’t know how the research process and structure was mounted and whether everything was done perfectly. Sometimes a certain population profile should be excluded to obtain proper results but it doesn’t mean that it was because maybe no one thought of it or even knew about it. Get what I mean? It’s all far more complex than that but we have no choice and we need these guidelines because otherwise not of the side effects would be taken into consideration righteously. And even after a drug is labelled, the effects are not always reported by patients or doctors so we don’t get the right picture anyway. Sometimes it frustrates me but that’s the way it goes. And we’ve all heard of efficient drugs such as the one Gen is on (the vasoconstrictor) which is at risk of being removed from the market because no further studies were conducted to assess efficiency – even if we know it’s doing miracles for people.

        You can think of a cancer med that acts the way that drug does as breaking the rung of a ladder for that cell for instance to be able to go through a normal cell cycle – or life cycle – which is what cancer cells don’t do. For you to understand all the binding and molecular mechanism behind the drug as such can only sometime be helpful if you want to compare it to another drug and you are really really curious about it. It doesn’t really fill a purpose for us. As for off-label, well you know how we use mice and other little creatures to establish the functioning of new molecules. Who knows if it isn’t good enough for some other animal or even humans? When there are no options out there, why not give it a try. The reason why a drug may work better on a subject compared to another probably resides in one’s in the ability at the molecular level to process everything. We are all so different and perhaps some people or animals have better catalysts for whichever reaction we are looking for. I can’t tell you how happy and amazed I am at the fact that these vets you are dealing with have the love of science and knowledge to understand these things and chose to treat your little girl to give her another chance at life. I am keeping my fingers crossed again and am proud of you for your faith and courage. Keep it up as MM needs that right now and is really worth it.

        Thank you for the wonderful comments and I’m flattered to be referred to as Dr. Sheep. 😉


      • You are Dr. Sheep! Thanks so much again for even more info that I can understand (and sorry about all the typos before–I see them when my comment posts and blows up!). I did read that a cat had to take all these GI meds due to the side-effects (no toxicity issues) and MM just hates meds, so worried as she spits them out or hides them and then I find them! This specialty center is the best and people come from all over the SW to treat their animals, so it’s about the only good thing here–that’s why I want to check myself in. Haha. My savings account is dwindling more, but that’s what it’s for–medical bills for MM and me! This is what’s important and I could care less about money as long as I have a roof over my head (and good credit!). A lot of it is my back pay from SSDI (disability) and it’s been sitting for yrs.

        I’m picking up MM tonight and per the call this morning, she’s doing well and her incision is very clean. I don’t know how I’ll keep her off the bed (doc’s orders) as she’s on strong narcotics and is actually alert, so it will be a LOUD night with her (very vocal cat). Maybe I can let her up the next night, but she has so much trouble getting down, even with her ottoman. Next appt. will be in 10 days or so to remove stitches and get the Palladia and hopefully have any good news from the biopsy (not holding out for that).
        A ❤

        Thx for the compliment. Don't forget I had the week of meltdowns and huge panic attack before I got it together! 🙂

      • Typos? Where?

        Great to hear she’s doing OK so far. 🙂 Can’t wait to hear more good news! 😉

        I love verbal animals. Gen’s dog and bird are like that! Just like her!

        And by the way, do take some credit for the way you are handling all of this. You deserve it and are doing good. 🙂 xo

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