Why The Orange Rhino Has Been Silent

Dear All,

I have received so many wonderful emails wondering if all is all right as I have been ridiculously silent both on Facebook and on my Blog. Some of you have asked if I am pregnant. Nope, I am not! Some of you have asked if I am busy writing another book. Nope, I am not (but if I were…do tell what you would want it to be about!) And some of you have asked if I am simply done with being The Orange Rhino. Nope, I am not.

What I am doing, however, is surviving, just getting through each day.

The last five, well seven really, months have been an incredible emotional roller coaster ride for me – all leading up to today. If you recall, my baby, Mac (who is actually a big kid as he tells me and not a baby, but whatever, he is my baby in my mind!) had an absolutely horrific seizure in September. This wasn’t his first, but it was his first in one and a half years (we thought they were gone), and it was his first where he didn’t talk for two hours after (I truly thought I had lost him) and it was his first that impacted him longer than the seizure period (he started stuttering two weeks after and hasn’t really stopped, although speech therapy is helping.)

Little did I know that that seizure would mark the beginning of a long period of mommy feeling worried, sad, scared, and out right exhausted. You see, once that seizure ended, Mac had high fevers every two to three weeks and since high fevers seemed to be the cause of his seizures, every two to three weeks I was on high, high alert praying that he didn’t have another seizure, praying that he didn’t temporarily stop speaking again; praying that he speech wouldn’t worsen even more; praying that we wouldn’t be taking another ride in the ambulance to the Emergency Room. Luckily, he didn’t have another seizure…until November 6th.

But two days before that seizure, I was given yet another reason to worry.

My mommy gut said, “Enough is enough with these very frequent high fevers. Mac just can’t seem to get better and that isn’t right.” My doctor agreed and we did blood work. I have not once received a call from a doctor post blood work – until that day. I knew when my doctor called I needed to be concerned, and I was right. She walked me through the few items that concerned her and then taking my limited knowledge of the medical world I said,

“Do we need to be worried about Cancer?”

She replied, “Well, yes, it is on my mind. But it is the third item on my mind. The first is an autoimmune disease, the second is just bad luck, and then comes Cancer. But I really think it is an autoimmune disease.”

Needless to say, that didn’t comfort my husband or me so in addition to seeing a Rheumatologist for the autoimmune concerns, we also decided with our Pediatrician to get an ultrasound done to work to rule out Cancer. Fun times.

Are you still with me?! So many dates and facts. It all leads somewhere, I promise! Can you see why I am so exhausted?! So that was all on November 4th. November 5th we saw the Rheumatologist who ordered more blood work and who shared that she felt Mac might have Lupus, but most likely had Periodic Fever Syndrome. Mac’s brother Andrew had this so this wouldn’t be a surprise. That said, I point blank said to her,

“I have been through Periodic Fever. This truly doesn’t seem like it. I am telling you, something else is up and given that fevers cause his seizures, I really want to stop them.”

She agreed and said that in addition to her testing, that it was time to go back to the Neurologist. Well seeing as the pediatrician had said the same, and that Mac had a seizure the next day, I made the appointment stat (don’t ask why the delay, that’s another story!) Fast forward a few days. The neurologist ordered a brain MRI (to rule out a brain tumor given his seizures, the stuttering, and the blood work), a three-day seizure test, and a genetic test to see if he was in the early stages of pediatric epilepsy.

Now I will uber fast forward to all the results, the last of which we got a week before Christmas. It was a LONG six weeks mind you and all while I was supposed to be focused on my first book. I obviously wanted to do nothing else but get my son healthy but I will admit, I was and still am devastated at the timing as it was a lifelong dream to publish a book and it was so difficult to enjoy the time. (Don’t hate me for saying that; you know me, I am brutally honest.)

I did, however, temporarily enjoy the test results.

The genetic test came back negative. No epilepsy. Sweet.
The ultrasound came back negative. No cancer. Sweet.
The brain MRI came back negative. No tumor. Sweet.
The blood work came back negative. No lupus. Sweet.

So what was I left with? Lots of negatives, which was a positive, but still no answer.

Mac continued to have high fevers frequently but also developed hives and a concerning rash, both of which still come and go, mostly when he is sick. An allergist (also an immune system specialist and infectious disease specialist) ruled out allergies (yes, we got to see another doctor as the rash concerned both our pediatrician and rheumatologist who are working together phenomenally) and confirmed that his immune system had no apparent problems. He also confirmed that his last few months health wise were concerning but that all of Mac’s doctors had been very thorough in their work. I guess that was re-assuring, but again, I was left with no answers as to why Mac was so frequently getting sick!

That was February, about six weeks ago. While I still had no answers, Mac hadn’t had another seizure and his fevers were getting shorter and lower so I felt rest assured that he had just had bad luck getting sick this season. HA! Why should this mama start really okay with things?! A few weeks later I discovered that Mac’s back was covered in small, pin point bruises and that his legs were equally covered in bruises.

The pediatrician took one look and sent us for blood work stat. He normally isn’t worried but seeing as he called me the next morning at 7am to see if I had gone for blood work yet, I knew he was as worried as I was that internally bleeding or something was going on (I knew that type of bruising can be a sign of a blood disease as I was told to watch for it.) The good news: nothing major causing the bruising. Phew. The bad news? Mac’s white blood count was low. AGAIN. You see, a few weeks prior during his now standard blood work, his count appeared low, but barely. So we all ignored it. But this time it was much lower. Enter new potential diagnosis: Cyclic Neutropenia.

This is when white blood cells (which fight infection) drop every three weeks leaving one quite susceptible to getting sick. Now this, this would make a boatload of sense! We were told to check blood work again in three weeks. If the numbers went up, voila! most likely an accurate diagnosis. If they went down, well, add cancer to the mix again.

Three weeks passed last Thursday. I was a mess all day. Scared, scared, scared. I tried to write to you all then but couldn’t. I tried to write the night the results came back, but couldn’t. You see, the numbers dropped, again. Mac’s white blood cells have been dropping dramatically for almost two months now. My pediatrician confirmed what I knew weeks ago and had asked, but had been told, “not yet, not yet. We all still think periodic fever syndrome is probably the result and time will tell. If things change, then it will be hematologist time.” Well, things changed and it was hematologist time!

I cried when I called the office to make an appointment because you see, the hematologist is also an oncologist and calling a place where the phone answers, “The… Pediatric Oncology Department” is heart wrenching. Not a call I liked making one bit especially since I was told to get in ASAP. I spoke with the doctor who still feels that Cyclic Neutropenia is likely the cause but still, until I know that, I am surviving, getting through each day as best as I can until I know my worried mind and heart can rest.

We go to the doctor today.

It has been a long four days waiting for the appointment. I just want to know the next steps. I just want Mac to be healthy. I just want to stop worrying. I just want to hear it has all been bad luck. I just want to hear that all my fears, while well founded, have been proved wrong.

So this my dear friends is where I have been: worrying about one of the loves of my life. I have also been worrying greatly about another son who is struggling greatly. Getting through each day with him without losing my cool and with finding as much patience, empathy, love and forgiveness, truly leaves me with no energy left come the time all the boys are asleep. That said, at least I have enough energy to get through the days and giving my boys all that they need while they are awake. Being productive at night, doing the things I so long to do (eh hem, writing!) can wait. My boys are my priority. I know you all understand this and would equally tell me to not worry about not being present, but it’s important for me that you all know I haven’t left you, but that I am here, doing my best to be an Orange Rhino despite all the stress that life has thrown me.

Doing my best to do all of which an Orange Rhino must do to move forward: go one step, one moment at a time; find perspective; take care of myself so I can take care of others (hello sleep!); talk myself through tough moments; and laugh and connect with my boys as I can.

Stomp forward Orange Rhinos…stomp forward!


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80 thoughts on “Why The Orange Rhino Has Been Silent

    • Thank you for sharing. There is nothing more important than where you are. My children and I will say prayers for you.

      • Your article a few years ago was the single most amazing piece I have ever read. It resonated with me then, and continues to now. Its taken me 2.5 years to get back to reading your genius words, and now i see you are dealing with far greater issues. I am so sorry for you and for your family.
        I hope and pray your son is okay. My smart, insightful brother-in-law is a top hem-onc dr. in Westchester NY. Please let me know if he can be of help to you.

        If not, please know that you are in my prayers. I realize as a complete stranger that may not mean much. That said, your article meant so much to me. My mother hit and yelled. A horrid combination. As a mom to 3 young loves, i yell. Not as often as she did, yet far more than i ever dreamed I would. They HATE it. And don’t deserve it. I will print off your top ways to avoid yelling and will purchase your book. But more than anything I appreciate that you don’t think its about deciding not to and therefore not doing. It takes more than thought and desire. It takes planning and action. And commitment. And planning and action. And commitment. Again and again.

        And so I will attempt to begin the journey. I want desperately to end this cycle of terrible parenting. And raise children who can be kids, with discipline and guidance, without yelling. Thank you for the reminders.]

        A forever fan,
        Cheryl Raff

  1. I am so sorry I just new it had to be Mac, no other reason but a sick baby would keep you so busy. i’ll have you all in my prayers.

  2. What a stressful and heartbreaking time. While we miss your wisdom and insight, your priority to care for your family and yourself is paramount. May the collective energy and support of your readers be with you as you navigate through this difficult time. I wish you certainty, hope and peace in the coming days, weeks and months. Kiss those little ones for all of us.

  3. Sending good vibes to you and your family. It’s awful when a child is unwell especially when you don’t know how to help them. Will have your family in our prayers.

  4. Hang in there, Orange Rhino. Thinking of you and little Mac. Your heart and focus is right where it needs to be. Sending all positive thoughts and well wishes for your little guy. Big hugs!

  5. it brings what is important into perspective. Your readers, orange rhinos and the blogosphere can wait, my dear. You have children to love and yourself to care for too. If that means reaching out to those of us fellow recovering yellers so be it. We’ll be here.

  6. Please know that this community that you started is here for you as much as you have been there for us. Someone else in this community has been through something similar. That’s what can be comforting about community. I think I hear the musings of your next book: how to help the entire family deal when one falls sick. Please know we are all praying for you and your little one and all of your family. Sending love and healing energies!

  7. I am so sorry. You and your beautiful family are in my thoughts. I pray Mac will be OK. Stay strong and positive–one day at a time…

  8. I will be praying for you and your family. Thank you for sharing your fears and worries. You are doing a great job! Keep on going with your gut feelings!

  9. May the Lord be with you and your family in your hour of need and give you the words for your questions to the doctors, give you the strength to be strong for your family and the courage to your son to fight!

  10. I am so sorry this is happening and probably the hardest part of parenting to keep your cool and be an orange rhino. I do suggest two things. 1) Remember – you don’t have the luxury to lose it! You will be going through some really tough times with this in the days and weeks ahead. I feel for you. But you do not have the luxury to lose it.

    2) Always trust your mommy gut. Doctors are notorious these days for dismissing parents intuition. Don’t let them. This is your best protection for your son.

    Hugs all around.

  11. Oh, bless you and yours! I can feel the anxiety and worry you have been carrying, and dear, sweet mama, you are doing such a good job loving on all of your boys. It is so hard to think “gentle” & “patient” when we just want some answers. My heart goes out to you. I am praying for you and your sweet Mac. What a hard day to wait for!

  12. Sending love to you and praying for your family. So sorry to hear of these exhausting and terrifying challenges. Good for you for taking the time to sit down and write about it and process it – not for us, so much, but for you. Namaste, y’all. xoxoxo

  13. I am so sorry to hear your baby (big boy) is so sick, I cannot imagine the fear you have been gripped with. Many prayers for health and patience sent to your family. I figured it was the health of your youngest as those had been the posts that had stuck in my heart. I have been praying for him and will continue to do so. Please focus on your family without guilt. I am sorry you did not get to enjoy your book being published the way you should have, however it at least gave you a few brief moments of happy in an otherwise scary time. Wishing you and your boys all the best. Hoping life is better and allows you to be on more in the near future. Good luck today at the doctor.

  14. Wishing you the best of luck today at the doctor. Sending prayers and best wishes that you find the answers you are looking for, and with the best results possible.

  15. I am so sorry for all you have been enduring. It’s so hard emotionally & physically to have a chronically sick child and to not have answers or a concrete diagnosis. My 7 year old son has suffered for 3 years with swollen lymph nodes, chronic severe abdominal pain, headaches & frequent vomiting. We have been through MRIs, ultrasounds, endoscopies, blood work, allergy testing, etc. etc. and also – still no answers. The “C” word has also come up with us, but thankfully so far has proven to not be the case. Hang in there. Prayers for your sweet boy, you & your family.

  16. My prayers love for you and your family! Take care and know we are all cheering you on. We will be here when you come back. Good luck and God bless!

  17. Hang in there! Sending you strength and prayers…you have helped all of us so much now we can send you good energy too:)

  18. I am so sorry to hear about all you have been dealing with Mac. There is nothing worse than having a child that is ill and the diagnosis is unclear. My thoughts and prayers are with you and yours!

  19. My thoughts and prayers are with you and your family and especially Baby Mac!! Your stampede of orange rhinos are right here with you cheering you on, holding you up and wishing that very soon life will be back to normal for you! X

  20. Sending love and light to you and your family! You are such an awesome Mama, writer, and community leader. Thank you for the update. Looking forward to the next and hoping for some good news and an accurate diagnosis for your precious boy!

  21. I cannot tell you how much you are in my prayers today. My whole yelling-less journey began because of you and I am so so so grateful for that. I will keep your whole family and Mac especially in my prayers. Stay strong. Easier said than done, I know. But we are with you in spirit.

  22. Thinking of you and sending prayers of strength your way and Mac’s way. My Mom had cancer twice and it shook me, but hers was an easy diagnosis and treatment. I cant imagine how stressful it would be with a child where it is all unknown what the root problem is. My counselor told me something yesterday that stuck with me: “The real tradgedy of cancer is not ultimate death – we all die. The tradegy is not having lived and embraced your time fully.” I’m trying to embrace my Mom and savor all my time with her, however many years (hopefully decades) she has left. Granted its a different situation than a child, but try not to get so wrapped up in the stress of diagnosis that you cant enjoy time with your family. Easier said than done 🙂 but you are doing great.

    We all care about you, even though we havent met you. Your blog (and hopefully book someday) has changed my outlook on yelling and given me hope that its not just part of “who I am”. Thank you from the bottom of my heart.

  23. thank you for sharing your journey, i cannot imagine how difficult each day is for u and your family. we have walked the road of medical uncertainty with our middle child but nothing to this extent. it is worse not knowing, with knowing there is a plan of action. we wrestled with God asking “why us? why our kid?” we don’t have all the answers but enough time has passed to see His provision each step of the way. praying for comfort and support for u and your family during this time.

  24. My 8 year old was committed almost a week ago. My other 3 (all under 7) are struggling, my husband and I are struggling. Just barely stomping ahead ourselves. I have that same desperate fea and hope with every phone call. Maybe we will get answers! What if we don’t want the ones we get? What if we don’t get any? Its heartbreaking and terrifying. And then the Damn world isn’t considerate enough to stop. You still ha e to feed your kids, grocery shop (and oh God what if you run into people and they ask for updates?)there are still dishes and laundry and kids who are fine and need your smiles and joy. Big giant hugs. It sucks when your kid is sick.

  25. I am so so sorry you/your family is going through all this pressure. Unanswered questions. I pray that soon some result will point you in what direction to go, and from then on things to get better! Keep the faith!!!
    Love, Monica

  26. I am so so sorry you all have to struggle day after day. All my prayers go to you and your family.
    We lived in DC since 2010. Many health issues, tests, negative results etc etc… falling sicker and sicker as if body is slowly shutting down. I decided to take an oblique approach.
    Long story short: mold infection ( which does not appear on allergy test). Entire family on Mold protocol: amazing. Mold infection affects The immune system, thyroid, sight, digestion, weight, skin, breathing, fatigue, brain fog, mood swings , heart, asthma …. I am so angry at all the various doctors who are good will yet short sighted. We waisted 5 years and spent so much time in medical offices. Thanks to God we were inspired to think differently to approach this.
    PM me for more details if you wish.
    You have a tremendous power to hold yourself and your family together, you have a huge heart. You have shared this with the Orange Rhino. You are an amazing human being. Keep searching. Keep asking. You will win.
    Take good care, cc

  27. I worry with you – you are not alone. There is nothing scarier than health issues with your babies. I am sending prayers to Mac, you & your family. Hugs

  28. What a long journey. I hope it continues to improve and you get some answers. Well of course you haven’t better blogging. Wishing you all the best news.

  29. Wishing you all the strength and positive thoughts there are to wish! I hope you receive good news today that allows you to really breathe again 🙂

  30. As I think of all the work you have done being the Orange Rino I feel in my heart that the steps you took and all that you have learned and taught about not yelling has probably blessed you so much in this time of worry and stress. Worry and stress are probably the biggest triggers most moms face when trying not to yell. The habits you created for yourself, all the hard work you have done to be the best mommy you could be to your precious boys has set you up now to be able to handle all that you are dealing with. You are a great example to many. God bless you and your children. My heart and prayers go out to you and your sweet family.

  31. Prayers of strength for you, prayers for a quick accurate diagnosis, prayers for no suffering! You are and have been so courageous..stay strong, seek our help, loads of love hugs and strength.

  32. I cried reading this. No parent should have to go through that! It’s heart wrenching. Prayers go out to you and your family. I hope they find answers and he gets healthy soon! God bless you!

  33. My heart dropped as I read your blog. First because it breaks my heart to hear a mommy struggling with a sick kiddo especially when no one can tell you why. I know that struggle all too well. The first half of your post described my daughter, minus the seizures. She used to have chronic high fevers which triggered hives for her. No pediatrician, allergist or dermatologist could figure out what is causing the reaction. We still have yet to figure out why and I am writing you after we had another episode just 5 hours ago. Heart breaking to watch our babies suffer with no known reason. Just know I am praying for both our babies that answers would be found and their bodies healed

  34. I’m so sorry that you have to go through this. We as mother’s are so versatile but we can only take so much. I wish you the best of luck. I also want to bring up a diagnosis that was bouncing around in my head while reading this. A family friend has a son that want through a seizure phase and there was a reason for it. Try doing some research on PANDAS…not the animal lol. Maybe it’s something to bring up, maybe it goes nowhere but it’s worth a shot.

  35. Thank you for sharing this with us; I know it must have been hard. I’ll be praying for you and your whole family. You have a lot of people out here who love you and are with you in spirit.

  36. Dearest Orange Rhino, I was wondering what was going on because I never saw anything from you, but I thought FB just didn’t show your posts. It happens.

    I am so sorry to hear what your family has been going through, and it isn’t over yet. Hopefully you will get some answers and a plan of action so you’ll be able to enjoy springtime worry-free.

    Take care, much love from Switzerland!

  37. I am so sorry you and your family are going through this. I will be sending good vibes & prayers for Mac and the rest of the family. Give him a big hug and kiss. xoxo

  38. I can’t even comprehend what you have been going through and what you will continue to go through. But, I do want to say this. Take care of you. Take care of your family. You have spent many many hours building up this community and I, for one, understand that you need to pull back and focus on your family right now. That’s okay. Please know that if you ever feel like you are losing it though, you might consider posting something, somewhere, so that we can come together and support and pray for you and your family. That’s the best thing about community.

  39. Whenever someone talks of periodic fevers I immediately think of Lyme disease. If he hasn’t been checked for Lyme, please have him checked right away. It is one of the least diagnosed diseases and is largely overlooked. I pray that you figure out what is wrong and it is easily taken care of.

    • I agree about the lymes disease. My husband’s secretary had the same symptoms and they said that wasn’t it….until after suffering seizures for months they finally tested for lymes….and that’s what it was. PLEASE CHECK FOR THIS.

  40. “I know you all understand this and would equally tell me to not worry about not being present, but it’s important for me that you all know I haven’t left you…” And we haven’t left you. (((HUGS)))

    Take care of you…keep taking care of your family.

    And thank you for taking care of us by reconnecting/sharing what’s been going on in your world. My heart aches at all of the pain & suffering your little one has had to endure…and is still going to be enduring. I also ache for all that your family has been going through. My thoughts will be with you and your family!

  41. Thank you for sharing your heart and your life with us. Your number one priority should be your boys, your hubby and YOU! Your dreams, of writing a book, will come true, in time. Go, be mommy and know that the OR community supports and loves you. I will be praying for you all.

  42. I am so sorry to hear that Mac’s difficulties have continued with no resolution yet in sight. But, even in reading all the worries, a part of me was thinking that, had you not had the opportunity back in 2012 to recognize your struggle with how you were dealing with your emotions and frustrations and have time to work on them and change them, the impact of this last six months would have been so much more devastating to your family. It serves as a reminder to me that the struggle and the (re)learning in the short-run will pay so many dividends for such a long time to come and that becoming a successful Orange Rhino means that, when life’s crises do strike, I will be better equipped not only to handle them for me, but also for my family. My thoughts and prayers are with you and your family as you continue to support Mac and each other.

  43. have not looked you up in a long while, but today was super yelly for me….and what do i find? your most recent post of your most personal challenges.
    wow. blew me away. changed my perspective 1, 2, 3
    prayers for you and your beloveds….

  44. I am very sorry for all you are going through! Your posts got me through some rough Mommy moments that could only be made better by my own effort and change through the guidance of the Orange Rhino, I wish I could do the same for you! Stay as strong and focused as you can, keep positive thoughts and if you remember nothing else just breath, pray and breath. Thank you, for confiding in us. I hope Mac gets well soon!

  45. Hi! I have read a few of your posts and really liked them. You are a source of inspiration to many. I was deeply moved to read your struggles. All the best to you and your family. My god give you strength to face your challenges. Hindu philosophy says whatever happens, happens for good. Though it’s very difficult to contain ourselves during difficult times, have faith and keep moving. May God bless you and your family.

  46. Thank you for sharing…of course we understand!!! My heart breaks for you and I will continue to keep you and your family in my thoughts…I’ve reset my counter 3 times in 5 days for my daughter not listening (one of my triggers, lol!!), I can’t imagine trying to go through what you are going through and still not yelling…you are an inspiration and kick-a** mama!!!

  47. thank you for sharing. having a sick child is the worst, and mystery illness just adds to the stress, the fear. my baby was in the hospital for 12 weeks, so my heart is with you and your family. i hope you find an answer and a solution, and i hope they are overwhelmingly positive.

  48. Thank you for sharing. I want you to know that I am on day 27 of Yelling Less and Loving More. Your OR challenge has helped to make such a huge improvement in my life, our home life, and the lives of my daughters! It’s always important and helpful to remember that things can always be worse, and this email from you will be a reminder of that to me. I will keep you and your family in my prayers. Thank you for sharing your troubles…I hope knowing that we all have your back will help keep you strong through this challenging time. Best wishes to you and your family. xoxo

  49. I’m so sorry you are going through this gut-wrenching time. My youngest has had some health issues (severe allergies, allergic reactions, Reactive Airway Disease, multiple Urgent Care visits and rounds of steroids/antibiotics/nebulizers) over the last few months as well, so I can somewhat relate. It’s terrifying thinking of the possibility of all the “what-if’s”. I hope you get some definite answers soon. My thoughts and prayers are with you and your family.

  50. My son just turned a year. A friend of mine sent me the link to this website, because my son is having a lot of the same symptoms as yours is. Seizures and muscle spasms, but no epilepsy and clean MRI. Rashes on his face and chest that come and go almost on a daily basis. High fevers, up to 105.1. No one can figure it out. He also has frequent infections, and is now Failure to thrive though, he hasn’t been gaining weight, and loses weight frequently as well.
    I’ve been doing so much research, trying to find something that fits all of this. None of our doctors seem concerned enough to try and figure it out though. I hope things get figured out for Mac, and that he gets better soon.

  51. My now 13 yr old daughter was diagnosed with Neutropenia when she was 2 and was released from the Hematologist at age 7 because she went into remission! Lots of antibiotics whenever she had a fever and blood work each time she had a fever…yeah, she got poked a LOT as a toddler and was fabulous about it! She never required special meds (cancer meds can help force the bone marrow to produce more cells to help fight any infection) but she was on tons of antibiotics for months at a time and she would get sores often. We kept rags of bleachy/soapy water around to keep her face/hands clean (this was before lysol wipes), kept her full of protein via pediasure or something like it, and just waited it out! Praying that your journey with this will end soon…its awful to feel helpless! (My 8 yr old son had a massive seizure in Feb, gets headaches/vomiting often, and shoulder pain with each headache and it makes me so frazzled to not be able to help him)

  52. I’m so sorry that you’re going through this. My daughter had a seizure caused by a fever last February and it was the scariest moment of my life. I hope everything turns out better and will keep you in my prayers.

  53. First time reading this site but I know this was for me to read. See my two year old big boy has had three febrile seizures within an eight month period. Two of which were in a 24 hour period. I live in the Bahamas and I really don’t know what to do. I pray that it does not develop into anything worse but he is constantly running a cold or has a sinus infection. It never seems to go away. I monitor his temperature like a hawk now, and it leaves me anxious. My biggest fear is that he will stop talking or regress and if you met my son you would know he is cognitively and linguistically advanced. I have seen a friend had her daughter misdiagnosed with epilepsy when it was only febrile seizures and watched a blooming girl regress. I don’t know what to do. I ask that you pray for me and my family as I will continue to pray for yours. Keep writing… God has a purpose for it – even when you don’t feel like it.


  54. I will keep you & yours in my thoughts & Prayers As I take the Orange Rhino challenge.
    Hoping your little Mac gets better soon.
    Take care & God bless

  55. I posted above….but feel you may miss it… Lyme’s Disease has these same symptoms…even tho they may think he hasn’t been bitten…it may have been missed. My husband’s secretary had these same symptoms and that’s what it was. She suffered for months before they finally gave in and tested for it. They were sure it was something else…Bless you….

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