One year later: An update on my daughter’s health
I just realized the other day that a year ago, April 1st to be exact (HERE), was the last time I wrote about our daughter’s health journey. I guess it’s about time I’d post about her again a year later. I have been putting this post off because there just aren’t any concrete answers but I can chronicle all the other things we’ve done and tried.
If you are new to my blog then you can read all the other posts HERE, HERE, HERE, and HERE (which was the first one). Last post I left off with going for the second round of food allergy and sensitivity testing at her natural healing doctor.
ALL OF THE PRETTY PHOTOS ARE CREDITED TO ALISON CONKLIN AND THE GLITTER GUIDE
After the results of the second round of testing, we started another strict rotation diet in which you leave all the foods out that she had a moderate reaction to (she doesn’t have any food allergies just sensitivities) and just rotated the rest of the foods. It really didn’t leave all that much to eat and was very difficult and expensive to keep up with since you can’t eat leftovers either.
Did it make a difference in her behavior? Nope, it didn’t at all but I guess it’s another thing we can rule out.
Right now we are still keeping an eye on her sugar intake but she isn’t completely sugar-free anymore which she was for 4 months last year. We stopped using Stevia and try to use Xylitol sweetener
instead of sugar which tastes fabulous. I really like it and use it in my coffee and other desserts now too. And she is still gluten-free.
(find out how I made my daughter’s headboard HERE)
She is also going to a local behavioral therapist with me weekly. She hates it but I keep telling her if she would just stop with her anger outbursts and uncontrolled behavior then there would be no need to go. That doesn’t make her change her behavior though and we keep going.
At that office, she has recently taken the Quotient Test to see if she might have ADHD which we didn’t really think she had to begin with and this test confirmed it. And we also did a Genomind saliva test which I know some people don’t believe in but I personally feel like I love having a spreadsheet of medications that wouldn’t be suggested to work for her. I don’t want to be stepping in the dark and having to try out all kinds of different medications with her should we ever go that route.
I did discuss behavioral medications after her tests but don’t see how these types of medications could benefit her. All of them ended up being on the list of ADHD medications which she doesn’t have.
Where are we at with her now to sum it up?
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Her clothing issues have gotten a lot better since her awful mental decline during our Germany trip two years ago (HERE) and the realization that she had a severe Candida yeast overgrowth in her stomach which caused her constipation (and encopresis) and awful behavior issues. She is able to wear a variety of clothing now which we definitely attribute to the strict diet we kept with her to kill the yeast and get her bacteria levels in her stomach to normal levels.
She is generally a happy bright and artistic girl again. She is good in school and her teachers only have good things to say about her. At home she is still a different story almost daily but compared to how she was 2 years ago it’s big progress in the right direction.
What is our biggest concern right now?
Her anger outbursts. It is very common for kids to keep it together in a school setting and then unravel when they come home in their comfort setting. We are hoping to teach her coping mechanisms so she doesn’t waste hours on petty issues. So far with no luck but I know she is trying and that’s all I can ask. I’m deathly afraid of her teenage years and puberty. The silliest small things send her over the edge.
I didn’t realize that a post like this would help me put things in perspective again and to show me how much we have accomplished over time because sometimes it really doesn’t appear that way.
Not having to struggle with her right now every morning over clothing is so much better. And I guess if there would be a magical pill against anger outbursts almost everyone would take it. There just isn’t a straight solution and I will try to see how I can help her and us figure this out.
I as well have struggled with severe anxiety again, especially over Christmas which is usually annually the case. I had to wear a heart monitor because I keep having irregular heartbeats. All of that was again related to anxiety. It’s so crippling at times.
My doctor has suggested anxiety and depression medication which I just refuse. I have tried to go for some massages and other relaxing services which I can’t generally afford but it certainly is better than taking awful pills where I get scared just reading the reviews and side effects. One fact about me is that I usually get every listed side effect which isn’t because I read them first and then have it in my head. I don’t usually do that.
He actually suggested Effexor, it really sounds like an awful medication. I wish insurance would pay for acupuncture. It’s supposed to really help against anxiety but unfortunately, it is really expensive to do on a regular basis.
There have been other personal issues that have contributed to my anxiety and it’s not easy trying to work through it all. Once again I can only say that this blog of mine helps me keep my mind off of things I can’t control.
So and now I’m wondering about all of you who have written to me in the past with similar stories and struggles, how have you been holding up and doing? It’s always nice to exchange stories and struggles because just maybe we can help each other.
Tschüß
You are such a great mom doing all that you can for your daughter. I hope that your quest to find the right answers for both of you comes to light soon. XO
Great to hear that she is doing better and that you are so strong. But moms can only be strong, right? I am with you on the medication thing…I refuse ALL of it…just grab a glass of wine my friend:-) Smooches!
Don’t make the mistake of thinking that just because it doesn’t require a prescription wine is not a drug, or is totally safe. Any time you drink to deal with emotional issues you’re self medicating, and it can become dangerous very quickly.
Really?!?! That wasn’t a necessary comment.
reading it all like this it is amazing to see the strides lilly has taken- i am so happy for her! and i get the unraveling as sawyer is like that with us. this year has been SO much better but it has definitely taken us time to get to where we are now and there are still very bad days mixed in there. but i will take it over happening almost every day for a while last year!!!
I send you a lot of goog energy. Kisses
Julia,
Don’t give up! You are doing a wonderful job as a parent, friend and teacher. Your daughter is very lucky to have you and your husband support her. I have Celiac disease. Although I didn’t find out until I was 32, having my husband as a supporter has kept me going in the right direction. I have given up all faith in doctors and believe a holistic and functional medicine approach is the only way to get real answers and real results. I too did the full array of food sensitivity testing . According to the results I was ‘sensitive’ to about 95% of the foods listed. After doing much research, I found out that those tests are highly inaccurate and really don’t give any proof of anything. Rather than starve myself, I simply added more exercise, prioritized sleep, stuck to 90% unprocessed, organic, grass-fed, fresh food and most importantly cut out as much stress as possible. That included cutting out a lot of people in my life. I am doing well. I highly recommend yoga for both you and your daughter. It is my medicine for mind and body. It promotes a moving meditation that I’m sure your daughter will benefit from. You can easily do it at home with an online video for free! I’m sure you are doing all that you can and I completely understand how emotionally taxing and financially straining it can be to sort through an unknown illness. Progress is progress and that is a wonderful thing!
lots of hugs!!! just keep being there for her, and that’s exactly what you’re doing!
Julia my heart goes out to you and your family. I can only hope and pray that next year you can write about more advance in your journey.
xo
Patty
You are doing a great job. Hugs and healing light your way.
You are such good mother and seem to be doing all that you can. Of course you would be anxious. Our daughter is 36 and can still suddenly get angry over the smallest thing. She is just now learning to realize what has happened and apologizes immediately.
Girl, thanks so much for the update. I’m so happy that she has made strides this year. The clothing alone is huge! I totally get where you are coming from when you have a perfectly behaved kid at school/events but at home – it’s totally different. Greyson has angry outbursts as well and has just stopped hitting. Teachers at school/church can’t believe it when it comes up that he’s aggressive at home. The things that are hidden behind closed doors, right?! It sounds like you are doing a fabulous job and have you heart in the right place. You just need to take care of yourself!
Julia, Anxiety medication made my life so much better! I realized once it was treated that I should have been on these my whole life. My stomach aches subsided and it really helps you put things in perspective. As the Dr. said “if you had diabetes, you would take insulin. This is from a chemical imbalance in your brain so why wouldn’t you take the medication? ” Please try them and I guarantee they will help. My husband had an angiogram and all kinds of tests because he was having attacks and he thought it was a heart problem. Turns out he was having anxiety attacks and now takes medication and feels fine. Just a thought. The one I take has had the least side effects for me. It’s Zoloft. Also, anxiety is genetic, might explain some of your daughters issues. Sending hugs and good vibes!
I’m sure you know this, but just in case, xylitol is toxic to cats and dogs. So make sure any in your house is locked up from your kitties, as well as any food containing it.
I’m with Mary. Zoloft has made a huge difference in my life. I have diabetes, and emotional upsets can and do raise my blood glucose levels. With Zoloft it’s much easier to keep them down. I don’t get angry as easily, and the depression is kept at bay.
Yes, it’s a good thing to look for the source of a problem and treat that, but when the problem remains after everything else is done it’s time to treat the symptoms. And sometimes the best idea is to begin by treating the symptoms. If I were having trouble breathing because of anxiety attacks then, yes, I would want to do something about the anxiety that was causing the problem. But the first thing I would want is to get my breathing stabilized.
I 3rd this! I am on Zoloft and it has done WONDERS for me! It has put my life back in order and I don’t feel out of control/depressed/anxiety ridden all the time. It keeps it at bay but sometimes the anxiety slips in..but I can handle it.
Have they talked about putting your Daughter on medication? She sounds like me when I was a kid, great in school but when I got home..total melt down. I WISH help was given to me when I was younger…
And I fourth this. Don’t know where I’d be without my Zoloft. And if you do decide to go the medicine route remember that it may take a few tries until you find one that works. And also sometimes the medicine may stop working and you have to switch to a different one. Thanks for being so brave and sharing your struggles.
Perfect time for an update! K and R just asked how Lilly was doing and when you were arriving in Avalon! I am happy to hear there have been some improvements! Take care of yourself girl!! I know it is easier said then done!!! Can’t wait to see you soon!! Hopefully salt air, wine and sand in your toes will help your anxiety!!
Thank you for the update. I subscribe to your blog and I always look for your posts on the latest news and your daughter.
Time flies and she has grown. Stress on all family members must be so high at times. I wish an answer could be found.
How is this situation effecting her development? Will she be overwhelmed with puberty? Will it be early, late?
If possible please use acupuncture. It’s so much better than drugs. Can your daughter use acupuncture?
Thank you for being so brave and sharing. If possible keep us loyal followers updated. And hugs to all your family.
Julia, so glad to hear she’s doing better and you seem to have found the physical cause of her problems two years ago. What a beautiful little girl! Does the therapist believe in cognitive behavior therapy?
On the subject of anxiety and medication, anxiety seems to run in my family and depression in my husband’s family. So, maybe the odds were against my son to begin with. His anxiety really manifested itself when he stopped going to school in the 10th grade! It seemed like no one out there knew how to help us. Not school, not therapists. He didn’t fit the mold. He’s very bright and not a behavior problem, so they didn’t know where to put him but still penalized him for not coming to school. Long story short, he graduated with his class, went to UVA, dropped out, went back, dropped out, had two hospitalizations. I’m not sure if he would have survived without medication. I understand your reluctance and admire it, but don’t let it blind you either–whether it’s for your daughter or yourself. By the way, I’ve been on Effexor for years, and without it I’m not sure how I would have gotten through my son’s traumas. Again, I’m not advocating for that or meds in general. Just try to keep an open mind.
I so feel for you.
You rock, Julia! Thanks for sharing.
Do NOT Take Effexor. I took it and it seemed to be okay until I bumped up to the full dose, blurred vision, memory loss, etc. I took it for four months and it took me six more months to wean myself off of it without horrible side effects.
Have you tried going to the Chiropractor? That’s what finally worked to cure my lifelong depression and anxiety.
Julia,
My daughter had similar issues as yours when she was younger. We didn’t know about candida back then, but the sensitivity to clothes and outbursts were frequent, which I always attributed to her being a red-head, ha! She’s now 19 and really SO much better. I have noticed she uses our dog as a coping mechanism, I only wish I could send our dog to college with her now, but we get them together as often as possible. I can’t remember if you have one, but that might be an option. There’s a lot of research on Pet Therapy. We’ve had a maltipoo and now a cavachon, both as hypoallergenic of a dog as there is. She also took up long distance running in high school which I think provides a stress outlet as well. Don’t get me wrong, she will still have an occasional outburst, but she usually saves them for me (her safe place) and spares most others.
Hang in there, I know it’s tough.
Try yoga for your anxiety. You can do it at home or go to a class. Works wonders!
I won’t be a person who says take this or definitely don’t take that. Everyone is different and drug packages have to list every possible side affect for legal reasons.
Having had to increase medication including a new drug in 2014 I was keen to reduce down last year after the issues had eased up. My anxiety went up again and it was a specialist I see for physical illness that convinced me to keep on the meds, even when thinking about trying for a family.
There is no wonder drug and I completely sympathise with you for getting side effects. New drugs are licensed all the time and you might ask your doctor about something like quetiapine if SSRIs don’t work for you.
My doctor said this about pregnancy but it could equally apply to you. You have to weigh up you without meds and the impact on your life vs you with meds and the impact of that. Sometimes the answer is meds, even when we would prefer not to. Best of luck.
Julia,
Please know, that having been down a very similar journey with my son, you sound incredibly wise.
My son is now 30 and doing very well. Some social interaction type things, that I and most people find very easy, are still difficult for him, but the anger settled after the teen years and he’s now, a very easy going guy.
When we first started to face the similar symptoms, at about the same age as your daughter, I was a new RN and thought medication was the way to go. However, many different trials and combos did very little to help, and he finally rebelled when he was about 16. I couldn’t disagree with his choice, having learned about the dangers of these medications with long-term use and the fact that they just weren’t effective.
Keep doing what you’re doing…a natural approach, while continuing to look for alternatives. Best wishes.
Sarah
PS I love your blog.
Parenting is hard, add special needs and health issues and I can’t imagine who wouldn’t have stress and anxiety. Wish I had some secret to heal all that ails you but it sounds like taking it day by day is the best course for now. Glad to hear things have improved, hope everything continues moving in that direction. Good luck!
Glad to hear such improvements with your beautiful daughter. You have so many friends online and off who are supportive of you on this journey, so I will try to keep my comments brief. Only you know your and your daughter’s full situation, so you have to do what you think is best for you, but here are some of my comments.
1. Effexor. Don’t discount this or other anxiety medicine. I am actually on effexor for perimenopause (off label studies support its positive usage for menopause) and it has made a world of difference in my horrible mood swings. I have had depression/anxiety in the past so I think that is the other reason I have responded well to it. I am on the lowest dose and personally have not had any side effects.
2. Acupuncture. Try to find a community acupuncture office. Sure, it seems weird to do acupuncture with a bunch of other people in the room, but it brings the cost down to being quite affordable and as you have said, acupuncture can be quite effective for a multitude of issues.
3. yoga/meditation/mindful breathing. I also credit these to helping me become more balanced, less stress.
4. Essential oils. Personally don’t know too much about this other than I usually use lavender to help promote restful sleep. I think I even read somewhere where a German company made a lavender pill for natural anti-anxiety relief.
Good luck and give yourself credit for doing as much as you do for your family. Lastly, don’t forget to take care of yourself as well so you can be the best person possible for your family.
FWIW, Ari had big issues with angry outbursts when he was younger, but his teenage years have been relatively blissful and conflict-free (so far! knock wood!). I think cutting out gluten did help a lot in his case (if he slips up too often, he goes through a day or two of being an unreasonable monster again), but I imagine just growing up helped a lot, too. So glad she’s come so far over the past two years and hope things continue to improve going forward!
I work in a mental hospital and mental patients don’t like taking “all those pills” so when they get out and can stop taking them they kill people. Medication is not all bad and evil. Anti-depressants/anti- anxiety medication is like most others you have to sometimes kiss a few frogs to find the one that works best for you. Its just something to think about.
Julia,
Bless your heart! Thank you for sharing. You’re in my thoughts and prayers.
I struggle so much with anxiety. My body really reacts and I get awful stomach pains and symptoms. I’ve been lucky to find two wonderful behavioral therapists to help me rationalize and acknowledge my fears without auto placing me on medicine. It’s an option but luckily a few months of weekly therapy seems to soothe me in my most stressful times. I also find meditation to be very helpful in the moment. Thank you for sharing your story- I hope it continues to get better.
Be strong, little girl!
Don’t be afraid of medicine! I also have anxiety and depression. I found that my family doctor was NOT knowledgable about antidepressants. Seeing a psychiatrist in combination with a therapist is the best decision I ever made! The psychiatrist was so knowledgable about all of the different types of medicines and how changing the dose would help. I started on Effexor and did not like it. I switched to lexapro, kept working with Drs to find the right dose, and haven’t looked back! Once we found the right medicine, I felt like myself again. People give up on antidepressants pretty quickly but they take time to find the one that works best for you and like I said, most family doctors are not as comfortable with all the different types of medicine that’s out there. Medicine is not the only answer but for me it helped me to fee more balanced so that I could work through my anxieties with the help of my counselor. Email me if you have questions- it is normal to feel depressed and you can feel better!
I live in Minnesota and my acupuncturist charges on a sliding scale $15-45 whatever you can afford. You should see if there is an acupuncturist that does something similar in your area. It’s so beneficial and could probably even help your little kiddo. It’s amazing!
Kudos to you for not just medicating her right off the bat. Too many doctors go straight to medicine instead of figuring out what’s wrong. Holistic should not be a dirty word. We are humans, not robots, and the food we eat nowadays is straight crap. Mandy at Life.yourway.net has some posts about one of her daughters not being able to eat food with red dye in it because it enrages her. That’s what I initially thought about when reading your posts about your daughter but it doesn’t sound like she’s eating a lot of artificial stuff. I’m a firm believer in junk food making us sick and real food healing us. Good luck in endeavors to help her feel better and I think you’re doing a fabulous job.
Hi Julia,
I’ve really enjoyed your blog over the years and I was hoping you would update us on your daughter’s progress. I’m glad to see things have improved. I know it’s frustrating that the journey isn’t over yet but it sounds like you’re doing all the right things and she is lucky to have such a devoted mom. Hey, maybe the hormones of puberty will balance her out…?!
I just wanted to echo a few of the comments above regarding medication. I struggled with depression and social anxiety for years. I didn’t come to terms with this until after I graduated from college. I just figured I was an extreme introvert and generally negative person. I, too, was hesitant to be put on medication. I nearly had a nervous breakdown over nothing, I just started to feel really, really terrible. I could hardly get out of bed and I knew I had to take action. I started with one-on-one therapy, then group therapy, and finally my therapist said I “I know you don’t want to take medication, but your problem is clearly biological. we are dependent on the chemicals in our brain to give us a sense of ‘wellness.’ If these chemicals are imbalanced, you will not feel a baseline ‘normal’ like most people do. I think you should try medication. You can always stop if it doesn’t feel right.”
I started with Lexapro and it made me feel AWFUL. I was even more depressed than I had been to begin with,, and felt suicidal. I know that sounds scary, but I knew that was a potential side effect, and I had enough self-awareness not to act on it. I used it for two weeks and stopped. Then my doctor put me on Zoloft and it was clearly the right recipe. It absolutely changed my life. I honestly think it saved my life. For the first time ever, I felt like what it feels to be “normal.” I hate feeling dependent on medication, so I’ve tried to go off it a few times. However, my mom can always tell when I stop taking my medication – I become irritable, easily offended, have no energy, hate social interaction, and can barely function in my daily life. Therefore, I plan to take it for as long as I need to, even if that means for the rest of my life. Like others have said, if I had a heart problem, I wouldn’t think twice about taking a daily heart medicine. This is no different.
I respect your personal beliefs and I know you are doing the best you can for you and your daughter. I just wanted to share my experience with medication in case it’s a route you choose to explore one day.
Best of luck to the both of you. Thanks for your blog.
Effexor and going gluten-free changed my life. I have depression, anxiety, and neurocardiogenic syncope, and Effexor and eliminating gluten made all 3 conditions tolerable. I used to have fainting episodes and periods of depression weekly – now they are down to maybe twice a year. Trying to figure out what works for you is tough, but I know you’ll find it. <3
Thank you for sharing your story of both you and your daughter. I’m happy she seems to be getting better, baby steps are still steps! You are amazing for keeping so on top of things with her but please remember to take care of yourself that way you can keep taking care of her! When I lost our twins at 24 weeks I became very depressed but knew I had to be better for my daughter so I went to therapy so I could talk but life didn’t get better and even though the depression lifted I was left with severe anxiety. I tried exercising which helped and eating better but ultimately I decided to take a low dose of zoloft. It made a world of difference. I am not a medication person, natural child birth, rarely even take an aspirin but my therapist told me there’s no shame in medication to help your anxiety no one frowns on someone who takes insulin for their diabetes or pain pills after their surgery. Everyone is different I know I just wanted to share my experience.
I’m only 4 and a half months into the journey. I often ask myself those same questions, would she ever have gone to the moon like she wanted, although probably not in a pink rocket; would she have got herself a pink car or live in a pink house. Probably not but they will always be questions I ask
I had a UK physical done in LA and company paid for this, I called clinic as I wanted a copy of this and was told that it is companies property since they paid for this?
Is this true as I thought I would be able to have copy of this for my own records, I do not work for them at present.
So good to hear your daughter has made strides, especially with regards the clothing issue which must be such a relief! You are such a good mom, though, just remember we are all trying to do our best here and you are doing a remarkable job with your gorgeous girl! Sending hugs xxx
Thank you so much for sharing, Julia. Your account gives so much encouragement for those of us struggling with these issues over long periods on time. I know you’ve done a ton of research and your readers are always so helpful and kind with their comments. Maybe you’ve gone down this road, but have you checked your thyroid and vitamin d levels? Adding vit d to my routine, especially in the winter months has helped me incredibly!
I don’t have much words to explain. I just have one words to say… Stay Happy 🙂
Thanks for updating us Julia. I’m so happy to hear that your daughter has made progress. I remember reading your post last year. I can’t imagine the stress and anxiety it must cause along with life’s other challenges. Wish I could offer words of wisdom but I’ll just give you a BIG virtual hug!! xoxo
On the topic of anxiety and depression (both of which I suffered from greatly as a young adult) I found that taking the maximum daily dose of Vitamin B and Magnesium “cured” me. The difference after a couple of weeks was like night and day. Nowadays if I go prolonged periods without taking vitamins I feel myself slipping again but all I need is the VitB/Magnesium combo and I’m good again. Hope this helps. Xx