# Health update on our little girl



## lenarenee (Apr 14, 2016)

Some of you are aware that our 8 yr old has been chronically sick with an undiagnosed illness since after Christmas. She was about to start some really traumatic medical tests, when the secretary from school (secretary doesn't adequately describe what this woman does!) called us last week to let us know there's been 4 other students and 2 staff who've been out with the same symptoms for many weeks. She put us in touch with each other, compared stories, and it sounds like we're all dealing with the same thing.

Good news is our girl has been slowly getting better. No fever or missed school for 2 weeks, and her energy and stamina are much better. Bone marrow test is postponed because given what we've learned....this is simply a virus that just takes months to fully rebound from, like mono.

Life is returning to normal, and there are no words for how grateful we are. I have a new compassion for those who aren't so lucky.


----------



## LisaAnne (Apr 14, 2016)

Oh my God! What a relief for you! 
*Health update on our little girl



there are no words for how grateful we are. I have a new compassion for those who aren't so lucky. 

Yes! I'm sure it was a life changing experience. Makes you realize what really matters doesn't it?


----------



## Navaria (Apr 14, 2016)

I had no idea! Thank goodness you found out about the others, and she was spared the bone marrow test! Prayers that she continues to recover!


----------



## shunt2011 (Apr 14, 2016)

What wonderful news.  Hope she continues getting better.


----------



## dixiedragon (Apr 14, 2016)

Wonderful news!


----------



## DeeAnna (Apr 14, 2016)

Very glad to hear your little sweetie is not as ill as you were thinking. I know that has been a huge stress on you!


----------



## cmzaha (Apr 14, 2016)

Fantastic!!


----------



## IrishLass (Apr 14, 2016)

That's such wonderfully good news! What a relief that must be to you all. I'm praying for a quick and complete recovery.


IrishLass


----------



## MySoapyHeart (Apr 14, 2016)

Yay! So happy for you all : D


----------



## dibbles (Apr 14, 2016)

What wonderful news. I'm sure you are all very relieved. :mrgreen:


----------



## Susie (Apr 14, 2016)

That is so very wonderful to hear!  I am so glad she is doing better, also!


----------



## jules92207 (Apr 14, 2016)

Oh yea!!! What wonderful news!


----------



## TeresaT (Apr 14, 2016)

OK.  I'm sitting at my desk crying.  I am so happy for you.  My friend's daughter was diagnosed as an 8 yr old with leukemia.  She had a difficult time and eventually needed a complete bone marrow transplant.  She is now a beautiful 24 year old woman that just celebrated her first wedding anniversary.  I never want anyone to go through what she and her family went through.  This truly is wonderful news.  (I am a firm believer in the amazing work that St. Jude Children's Research Hospital does.  Lindsey is a living miracle because of them.)


----------



## Kamahido (Apr 14, 2016)

Glad to hear you may be able to get some answers soon. Me and mine shall be praying for your child.


----------



## lenarenee (Apr 14, 2016)

TeresaT said:


> OK.  I'm sitting at my desk crying.  I am so happy for you.  My friend's daughter was diagnosed as an 8 yr old with leukemia.  She had a difficult time and eventually needed a complete bone marrow transplant.  She is now a beautiful 24 year old woman that just celebrated her first wedding anniversary.  I never want anyone to go through what she and her family went through.  This truly is wonderful news.  (I am a firm believer in the amazing work that St. Jude Children's Research Hospital does.  Lindsey is a living miracle because of them.)



And now we're crying together! 

I spent months crying with fear, now crying with relief, and joy for your friends who had to endure so much more. Blessings to them and Lindsey.


----------



## lenarenee (Apr 14, 2016)

Kamahido said:


> Glad to hear you may be able to get some answers soon. Me and mine shall be praying for your child.



You are so kind, thank you.  We're pretty confident this is over  as long as she's symptom free for 2 more weeks = no need for bone marrow or mri.  Our doctors are actually conferring with other offices to see ......I don't know....whatever there is to see.  Complete blood work check in 4 weeks just to double check things are in order.


----------



## lenarenee (Apr 14, 2016)

LisaAnne said:


> Oh my God! What a relief for you!
> *Health update on our little girl
> 
> 
> ...



It absolutely does!  The house is an absolute mess with toys everywhere. .....and I don't give a flying fig because she didn't have the strength to play for 3 months!!!


----------



## Rowan (Apr 14, 2016)

lenarenee said:


> It absolutely does!  The house is an absolute mess with toys everywhere. .....and I don't give a flying fig because she didn't have the strength to play for 3 months!!!



Ok, floods of tears! I'm so happy for you. It's the best news ever and means so much


----------



## Soapmaker145 (Apr 14, 2016)

So glad to hear that your daughter is doing better.  My sister has been dealing with an undiagnosed severe respiratory illness since last fall. All her tests have been negative.  She found out that a number of people at her work had the same symptoms over the last 2 years.  It took between 6 months and a year before their health returned to normal.  There seems to be a number of new infectious agents that haven't been characterized yet that are causing a lot of problems recently.   It doesn't add up.

I hope your daughter continues to improve and you can forget about it.  Sending more prayers her way.


----------



## topofmurrayhill (Apr 14, 2016)

lenarenee said:


> Some of you are aware that our 8 yr old has been chronically sick with an undiagnosed illness since after Christmas. She was about to start some really traumatic medical tests, when the secretary from school (secretary doesn't adequately describe what this woman does!) called us last week to let us know there's been 4 other students and 2 staff who've been out with the same symptoms for many weeks. She put us in touch with each other, compared stories, and it sounds like we're all dealing with the same thing.
> 
> Good news is our girl has been slowly getting better. No fever or missed school for 2 weeks, and her energy and stamina are much better. Bone marrow test is postponed because given what we've learned....this is simply a virus that just takes months to fully rebound from, like mono.
> 
> Life is returning to normal, and there are no words for how grateful we are. I have a new compassion for those who aren't so lucky.



Glad to hear that this is resolving in the best possible way. The 14 year old daughter of good friends fell mysteriously ill last year with terrible abdominal pain that sent her to the emergency room a few times, and on the best days prevented her from standing up straight or walking very far. Every diagnostic approach came up with nothing. I used to help by picking her up from school, helping her get up the stairs and looking after her until her parents got home from work. Amongst all the speculation about what might be wrong with her, someone told them about having experienced a virus that caused similar symptoms and took 3 months to resolve. Sure enough, at three months, just before New Year's, she steadily got better. There was never even a diagnosis, but certainly a lot of relief all around.


----------



## Arimara (Apr 14, 2016)

That's happy news. Congrats on NOT having to go for additional testing for now.


----------



## janzo (Apr 15, 2016)

Wonderful news. Our kids are so precious, we would gladly trade places and take their suffering instead.


----------



## SplendorSoaps (Apr 15, 2016)

I'm so glad that your little one is on the mend!


----------



## lenarenee (Apr 15, 2016)

Arimara said:


> That's happy news. Congrats on NOT having to go for additional testing for now.


 

Getting on soapbox:  after calling around to different labs I found that they do not equip themselves for dealing with children. _Every_ one of them either strap and personally restrain a child who can't handle a blood test!  I refused to have her held down by staff because of the risk of traumatizing her. If she did have lupus or cancer, then treatments would have been horrendous for her.

There was no one trained on how to walk the child through the process or calm their fears. There should be a dedicated child station with decorations/toys or what have you to make a more normal environment.  _And there shouldn't be a nurse huffing and puffing about how much time this child is costing her! _ 
No 8 year can calm herself with that kind of pressure. 

It took 3 appointments for that stupid blood test. When she was ready, she asked me to help her hold still; that told me she was ready for the process and felt more in control. We went out and celebrated her courage with a movie.


----------



## DeeAnna (Apr 15, 2016)

Yeah, I get what you mean. The year I was five, I had to have repeated blood tests. The blood draws usually went fine, but I was held down a few times when the staff somehow thought restraining me was the right thing to do. I don't recall that I was an obnoxious kid as a rule, but being manhandled and having your arms and legs held down by a pack of strangers is good reason for anyone to get scared and fight. In an emergency I suppose restraining a person might sometimes be necessary, but for a routine blood draw? Ugh. That gave me a phobia about needles that took years to overcome, and I still remember the anger and frustration. 

There were no kid-friendly facilities for me in the day, but I'm not sure toys and such would have made a lot of difference to me. What was more important was the character of the person doing the job -- things went so much easier when the staff person would take the time to engage me and talk to me like I was a real person. The few minutes spent on that was time well spent -- everyone got through those d*mn blood draws so much easier and better.

If you find someone who has the insight and humanity to treat your little one like a human being, stick with that person even if you have to come back the next day or something.


----------



## penelopejane (Apr 15, 2016)

Lenarenee
So pleased to hear about your daughters recovery! I hope she continues to get better.


----------



## penelopejane (Apr 15, 2016)

Soapmaker145 said:


> So glad to hear that your daughter is doing better.  My sister has been dealing with an undiagnosed severe respiratory illness since last fall. All her tests have been negative.  She found out that a number of people at her work had the same symptoms over the last 2 years.  It took between 6 months and a year before their health returned to normal.  There seems to be a number of new infectious agents that haven't been characterized yet that are causing a lot of problems recently.   It doesn't add up.




This is the same as me. 18 months ago it started. Nothing wrong with my heart. Nothing wrong with my lungs. They've given me a type of asthma medication which helps a little. I've tried dietary changes to no effect.


----------



## lenarenee (Apr 15, 2016)

Oh, my sympathies go out to poor 5 year old DeeAnna. 

Yes, the attitude of the staff is vital! Adults get traumatized by even basic medical procedures - but it's not talked about because of the shame factor. Then you have adults who don't see a doctor for decades. 

Given that our girl might have been facing years of medical care - I wanted her to learn be part of the process, not forced into complete helplessness by the adults. 

With all the appointments she had, she was never addressed by name, or had a Dr./nurse sit down face to face and speak to her. One office had her sitting in the corner while 3 people in white coats stood over her telling her what to do....and the pediatrician had the nerve to tell me she had behavioral issues!! She'd been sick for months, exhausted, and sitting in a waiting for 90 minutes where one parent lost his cool and threw his phone across the room and needed to be escorted out! 

DeeAnna I honestly think walking out of the appointments is what helped her finally work up her courage. We also talked about her rights as a patient to speak her mind. And we are on the lookout for yet another pediatrician.


----------



## lenarenee (Apr 15, 2016)

topofmurrayhill said:


> Glad to hear that this is resolving in the best possible way. The 14 year old daughter of good friends fell mysteriously ill last year with terrible abdominal pain that sent her to the emergency room a few times, and on the best days prevented her from standing up straight or walking very far. Every diagnostic approach came up with nothing. I used to help by picking her up from school, helping her get up the stairs and looking after her until her parents got home from work. Amongst all the speculation about what might be wrong with her, someone told them about having experienced a virus that caused similar symptoms and took 3 months to resolve. Sure enough, at three months, just before New Year's, she steadily got better. There was never even a diagnosis, but certainly a lot of relief all around.


 
Wow! They must have been frantic with frustration. That kind of pain would panic anyone when there's no obvious source. I know virus can cause inflammation of internal organs, but wouldn't that have been evident with an exam and MRI?  I hope she's still well at this point - no recurrence?


----------



## lenarenee (Apr 15, 2016)

Soapmaker145 said:


> So glad to hear that your daughter is doing better. My sister has been dealing with an undiagnosed severe respiratory illness since last fall. All her tests have been negative. She found out that a number of people at her work had the same symptoms over the last 2 years. It took between 6 months and a year before their health returned to normal. There seems to be a number of new infectious agents that haven't been characterized yet that are causing a lot of problems recently. It doesn't add up.
> 
> I hope your daughter continues to improve and you can forget about it. Sending more prayers her way.


 
Thank you Soapmaker! 

How is your sister now - any sign of improvement? I wonder if there's something in their building causing a problem - new carpets/desk or such that are off gassing?


----------



## Arimara (Apr 15, 2016)

lenarenee said:


> Getting on soapbox:  after calling around to different labs I found that they do not equip themselves for dealing with children. _Every_ one of them either strap and personally restrain a child who can't handle a blood test!  I refused to have her held down by staff because of the risk of traumatizing her. If she did have lupus or cancer, then treatments would have been horrendous for her.
> 
> There was no one trained on how to walk the child through the process or calm their fears. There should be a dedicated child station with decorations/toys or what have you to make a more normal environment.  _And there shouldn't be a nurse huffing and puffing about how much time this child is costing her! _
> No 8 year can calm herself with that kind of pressure.
> ...



I know what you mean. My daughter has been hospitalized a few times thanks to allergies and for other issues, she has to have blood drawn yearly. I'm quite thankful the doctors who work with her all work with children as part of their practice other wise, she'd be far worse at the doctor's than she is now (she only screams bloody murder when it's time for labs).

If you don't like the facility's way of dealing with children, I commend you for having the strength to stand by your child.  I've seen quite a few parents act otherwise.


----------



## TeresaT (Apr 15, 2016)

lenarenee said:


> Getting on soapbox: after calling around to different labs I found that they do not equip themselves for dealing with children. _Every_ one of them either strap and personally restrain a child who can't handle a blood test! I refused to have her held down by staff because of the risk of traumatizing her. If she did have lupus or cancer, then treatments would have been horrendous for her.
> 
> There was no one trained on how to walk the child through the process or calm their fears. There should be a dedicated child station with decorations/toys or what have you to make a more normal environment. _And there shouldn't be a nurse huffing and puffing about how much time this child is costing her! _
> No 8 year can calm herself with that kind of pressure.
> ...


 
Oh, gosh!!  That is horrible!  Where do you live?  Is there a pediatric hospital in your area that you can take her to for this type of thing in the future?  I know insurance may be a factor...


----------



## navigator9 (Apr 15, 2016)

My heart goes out to your daughter. I'm almost 66, but I still remember vividly when I was hospitalized to have my tonsils out at age eight. My parents had left for the evening, and a nurse came to my room and said, "I'll be back in just a minute to give you a shot before you go to sleep." I've hated needles all my life, but especially as a kid, and I remember I started to cry, "No, no, no!" She turned around and snapped, "If you don't stop that right now, I'll come back with someone to hold you down while I give you the shot!" So there I was, eight, alone and totally mortified that someone would even think of holding me down to give me a shot. I knew there was no way I could fight against this woman who was prepared to return with back up, so I just laid there with my eyes closed and said, "Oh go ahead, just do it!" I have never forgotten the helplessness that I felt, and the shock that an adult could be so unfeeling toward a frightened child. 

It amazes me that nothing has changed in all this time. And just thinking of it brings back all of those feelings. Your daughter is so fortunate to have you in her corner for support. Remind her that as a patient, she has rights. She can absolutely tell doctors or techs that she needs a minute to get herself ready, or to have you next to her. I know for me, it freaks me out to see the needle, so I have to look somewhere else while it gets done. I don't know if that's something that would help her.  I'm so happy that her health issues are resolving, and that she's turned the corner. It sounds like the two of you have a great relationship, I love that the two of you went to the movies afterward, and I hope that's the part of the day that remains in her memory. Sending good thoughts for continued health her way.


----------



## topofmurrayhill (Apr 15, 2016)

lenarenee said:


> Wow! They must have been frantic with frustration. That kind of pain would panic anyone when there's no obvious source. I know virus can cause inflammation of internal organs, but wouldn't that have been evident with an exam and MRI?  I hope she's still well at this point - no recurrence?



She has been okay since, thankfully. She got an MRI and other things and they could find nothing. The symptoms would often lead people to think "chronic appendicitis" except oops no appendix. She saw all kinds of specialists to consider different possibilities. At the end I noticed she was getting better week to week and it just went away. Nice when that happens. Congratulations.


----------



## Soapmaker145 (Apr 15, 2016)

lenarenee said:


> Thank you Soapmaker!
> 
> How is your sister now - any sign of improvement? I wonder if there's something in their building causing a problem - new carpets/desk or such that are off gassing?



Thank you for asking.  My sister is stable right now on steroid meds (used for asthma) to help her with her breathing with significant side effects.  She found a specialist that she is working with.  She will be undergoing a lot more tests.  It isn't the building that is causing the problems because they haven't changed anything recently.  The people who got sick all started out with a cold that ended with a cough that wouldn't go away and then lung inflammation that took a long time to heal.  I'm pretty sure it is an infectious agent that hasn't been identified yet. 

My neighbor's daughter is going through something similar to what you described. The doctors are at a loss. Nothing has helped. They assumed it is a developmental problem. I'll ask her to check if any other kids at school are dealing with a similar problem.

You did a great job handling the blood draw.  You saved your daughter a lot of anxiety.  I still hate needles since a childhood event.  I don't understand how professionals in a medical setting can justify restraining children while they stick them with needles.


----------



## Soapmaker145 (Apr 15, 2016)

penelopejane said:


> This is the same as me. 18 months ago it started. Nothing wrong with my heart. Nothing wrong with my lungs. They've given me a type of asthma medication which helps a little. I've tried dietary changes to no effect.



Oh No! I'm so sorry to hear that.  If we find out anything useful, I'll share just in case.  I hope you aren't having side effects from the asthma meds.  More prayers for all of us.


----------



## penelopejane (Apr 16, 2016)

Soapmaker145 said:


> Oh No! I'm so sorry to hear that.  If we find out anything useful, I'll share just in case.  I hope you aren't having side effects from the asthma meds.  More prayers for all of us.



I am going to see a Rheumatologist as the current thinking (???) is I possibly have an auto immune disease.  Would be very nice if it was "only" a virus.

I don't think I am having side effects from the asthma meds.


----------



## fuzz-juzz (Apr 16, 2016)

My daughter is 8 and I can't imagine what you've gone through in the past few months.
I'm glad she's on the mend and I hope she'll be stronger and stronger as the time goes by.
Be patient, if it's anything like mono, it probably took the toll on her body and it will, like you said, take months for her to feel "normal" again.

I contracted mono last year around May-June and still get occasional hit from chronic fatigue. Attacks are rarer, but they are coming back. I'm currently going through one because I'm stressed (life!!!) and I had two viral colds withing 2-3 weeks. There are few tell tale signs and as soon as they appear I know CF is kicking in: extreme fatigue, joint pain, crankiness, sore throat, etc.  If anything similar happens to your daughter, first virus may not be back, but the body is just stressing out as it's so tired from the disease it had. But I hope she won't have any bumps on her road to recovery.


----------



## lsg (Apr 16, 2016)

So glad to hear that your daughter is on the mend.


----------



## snappyllama (Apr 16, 2016)

Sorry I must have missed this post. I'm so glad your daughter is doing better. It's hard enough for adults to deal with the stress of being ill while waiting on a diagnosis. When little ones are involved, it's agony.


----------



## Spice (Apr 17, 2016)

its a terrible ordeal when your child is sick and you dont know what to do. Its a helpless situation that take many on a bumpy road. Its a blessing to know she will recovery.


----------



## lenarenee (Apr 21, 2016)

I just wanted to let everyone know how much I appreciate their supportive and kind responses!

Still celebrating here as life continues to return to normal - so normal that we got a call from the teacher about her not doing her work at school and preferring to lay on the floor and draw pictures. Yup. Gotta love normal!


----------



## jules92207 (Apr 25, 2016)

Yea for normal!!!


----------



## Sonya-m (Apr 26, 2016)

Hurray for normal!!


----------

