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A different kind of request

Joined
Mar 17, 2003
Messages
2,215
Location
Hastings NE
Hi,

I do not mean to put a damper on anyones day, but I need, well my son needs, help from above and everywhere else.

This is a plant family so as families will I am asking for some help.

Okay, here's the deal. My son Zachary has been ill with Asthma and unknown illnesses all his young life. He is now nine. Since May something has happened to Zach. He runs a fever and vomits every few days. He also has a marked decrease in strength. He is already seeing PT and OT specialists in school. They were worried about him, now they are scared. One just called and told me that Zachary has lost a lot more strength even over the last month.

I have had Zach to the doctors many times for this and you can see that they do not believe me. I took him to a neurologist (sp) and she said that she thinks that the problem occured in development, but is not still occuring, but that can not be the case.

My son, even though sick, use to run and play all the time. He was happy. Now he is just tired. If we play, which we do often, it is imagination games and he lies down.

I am Christian and I believe. I am asking for prays to help the doctors believe, find and cure the problem.

Thank you. I may not be on quite as much until this is taken care of. I will still check in daily, just not at much.
 
Joined
Apr 5, 2002
Messages
809
Location
Los Angeles, CA
Hi Copper,

I'm sorry to hear that about Zach. I hope everything turns out well for the both of you.

I was a severely asthmatic kid, so I really understand that part. It's no fun when you can't breathe.

Also, certain chemicals will make me ill, so if you haven't done so already, try not to use harsh cleaning chemicals in the home (especially the stuff for the bathrooms). Have the docs do complete bloodwork, esp. liver/kidney checks etc. And this may be a longshot...but have you ever heard of valley fever? My tennis coach had that and it was very difficult to diagnose. Luckily, he lived through it.

Best of wishes!
 

vft guy in SJ

VFT and Drosera lover
Joined
Jun 30, 2003
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Merced, California
Copper, my prayers are with you and your whole family. I hope they figure out what is wrong soon and set him on the road to recovery.
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Steve
 

schloaty

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Westchester County, New York
Copper,
I'm so sorry about Zach! That really is tough.
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I have a couple of suggestions.

1) Take him to an allergist. He may be allergic (like Wickedthistle said) so some household chemical, or like my brother was, to some mold or other. The blood work was a good idea, too.

2) Has he had an MRI? Might want to consider that. They're very good at diagnosing tissue abnormalities this way.

3) If the doc can find absolutely nothing physical wrong with him, try a child psycologist. My bro was depressed, and a few other things, and all he did was sleep. Apparantly fatigue can be a symptom of depression, and various other mental/emotions disorders.

4) How well does he sleep through the night? Maybe he's not getting a good night's sleep. Sounds too corny, I know, but if it is a persistant problem (which it could be if he can't breath too well), sleep deprivation can really mess you up and sap your strength. I have a friend here at the office with sleep apnea (sp?) that, when he's not on his breathing apparatus, will leave him exhausted (I'm talking like a zombie) in a few days.

5) Long-shot...Take him to a nutrionist....I don't know his eating habbits, but he could be vitamine or mineral defficient...???

That's all the armchair medical advice I have. Good luck! My thoughts are with you.
 
Joined
May 11, 2003
Messages
1,265
Copper,

I too have asthma, and know at least that part of what your son is going through. I hope and WILL PRAY in my daily devotional that the doctors find what is wrong.

SF
 
Joined
Mar 17, 2003
Messages
2,215
Location
Hastings NE
Here's the problem with medical at times.

First, yup, he has been to an allergist and specialist many times. His asthma is not normal. It is a new type and he was one of the first to show it. It works backwards. It started as full blown asthma (lungs) and moved backwards to included the other two airways (throat and head). He actually has very few allergies its all real asthma and illness is its main trigger.

Second, I would love an MRI. Zach had a very good Ped doc here that did not mess around when it came to Zach. Zach can look fine and then have a full dump a few hours later. There are signs he gives when he is going down hill and I know them all. Daugherty knew this and would not wait for the dump, but act before hand. There have been many occassions that Zach has been rushed to the hospital because a doctor would not believe he was ill and did not act in time. It was always "well he looks fine" and then a few hours later he would dump.

That is kind of where we are now. Daugherty moved. Daugherty made sure to set Zach up with a good doctor. That doctor told me that he was not taking new patients, but would take Zach. That doctor's nurse called and said that the doctor was not taking new patients and would not schedule Zach. So he went to a doctor that I know from experience I will get nowhere with.

I took him in a few months ago for this problem and it was "oh he'll be fine". I took him back again and told him that the school was worried to. I was then to record the illness over the next month and bring in the medical, OT, and PT reports from the school. I did that three weeks ago. I then took him to a Neurologist. That's in the first part. I called the doctor today and asked for help. I was told to record his illness over the next couple of weeks and to bring in the school reports. I did that. I had Zach in last week, the doctor looked at the report and held them up. He said did you bring these today. I said no that I had brought them two weeks ago. He said "Oh, guess I have to read through the file." I guess he still has not read it.

Zach has seen a psycologist for some depression. She says that he is not depressed. He just says he is because his father and brother have had depression problems. Hmmmmm. Oh, plus he just feels that way because he is ill a lot. Another great opinion.

Remember the phobia thing. When Zach went in for a blood draw he was so terrified that he vasoconstricted, no blood.

He does not sleep well. He is what is called an asthma sleeper. He has continual nightmares about his death or his family member's deaths. The last two nights I have been up with him because he is screaming in his sleep.

Zach eats a lot, but is still losing weight.

The main problem is that I am getting no help from the doctors. His regular doctor will not do anything. The neurologist will not do anything until the regular doctor treats the fever, making sure it is not another internal infection (something that has nearly killed him before). That's sounds like a good idea, but I can not get the doctor to do that.

A friend of mine who is a ER doc said to get him to the Meyer Clinic right away. The Meyer Clinic will not take him without his regular doctors referral.

I am waiting for Zach's breathing specialist to call back and hoping he will help.

He has been ill since May. This is sickening. Why is it so hard to get help. That's why I ask that the doctors believe first. It seems every doctor here can not believe the diagnosis of the doctor before him. You see, besides the breathing difficulty Daugherty also diagnosed Zachary with a muscular control problem and ADHD. Zach writes like a six year old, can not ride a bike, and so forth. I finally forced the new doc to get a med for Zach's ADHD because he is sever and is falling behind in school. Zach is not dumb. He is exceptionally smart. He has been doing algebra since he was five. He just can not concentrate.

I have given up on the children's clinic. Zach is going to see my doctor. I hope she listens. Good doctors do not stick around very long. They go where the good pay is. I just need to find a good one again before the damage is permanent(sp).
 
Joined
Sep 8, 2003
Messages
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N'awlins
First of all, I am so sorry this is happening. Seems like bad things always happen to good people. My prayers are with you and I am sure it will all work itself out.


Sounds like you are in a desperate way to get your son help.
What I would do is take your husband to the doctor with you and let him sit in the waiting room with Zach. Have all your notes prepared before you do this, exactly when you came in, what you have done, what kind of concerns you have expressed and what they have done to help. Then I would tell him that if he continues to take this ir-responsible aproach towards your son that you will sue for Malpractice, get the media involved and file a complaint against him.
The way I see it, he is jepordizing the health of your child and I would kick and scream untill he did something about it.

Just a shot in the dark here, but when he did have his blood test done, how was his white blood cell count?


Casper
 
Joined
Mar 17, 2003
Messages
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Location
Hastings NE
Good Question. They do not seem to have the results.

Threat of law suit is next. Heck, I've taken Zach to him while I was on duty the two last times. You think the sidearm might have helped.

I am going to try one more thing first. My pastor's wife, Mrs. Pastor
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, works for the doctor's office I am going to see if she will get Daugherty's number for me and I will get him involved. I will have him call the doctor he wanted Zach to see.

I am hopeful with my doctor. She mis-diagnosed me twice, it turned out to be a serious problem needing two surgeries. Hopefully she is still cowed and workable.

I am also still waiting to hear from Zach's specialist. He is one of the regional experts and has some serious pull, if he will use it.

Well, I have aired and feel a little less cornered. Thanks
 
Joined
Aug 14, 2003
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Missouri,zone 5b
I sure hope and pray he gets better.I know what you mean about not being able to find a doctor that will believe you,my mother kept going into the er for extreme pain,and they just kept telling her it was acid reflux,until finally (when she was so severe she would have otherwise died) she found a doctor that believed her and she was diagnosed with PANCREATITIS (sp) and she had to get her gall bladder removed. Anyways I sure hope zack gets better.
 
Joined
Aug 1, 2003
Messages
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Budd Lake, NJ
Hmm, I'm not a doctor but I've watched a lot of discovery channel.
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I agree with Schloaty, it sounds like he is suffering from a sleeping disorder, possibly from a breathing problem. If he isn't entering into a deep enough sleep state, he would be tired and weak. The lack of sleep could also weaken his immune system and explain his fevers and throwing up.

You could try video taping him sleeping and seeing if he gets full paralysis so he isn't moving when he sleeps.

Also, a long shot but you could check the environment for the deadly mold and or some kind of pollution that isn't agreeing with him.

You might have to have him knocked out somehow so they can get a blood sample.
 
Joined
Mar 20, 2003
Messages
394
Location
North Central Ohio
Sorry to hear about your son. I also will pray for you, your son and the doctors. This could be a long shot but maybe you could post about your son on a medical web site message board, like webmd.com. Maybe someone else has a loved one that had the same thing. Try to stay as positive as you can and remember all of us will be praying.


-buckeye
 
Joined
Mar 17, 2003
Messages
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Location
Hastings NE
He deffinately does not sleep enough, but I guess I should add a little info.  One side is losing strength faster than the other.  Also he has now developed headaches and nose bleeds.  It may all be tied in and it may not.

I agree that he is sleep deprived.  Now if a doctor would agree that would help.  I use video tapes to put him to sleep (he watches them) and it works, but he tosses and turns and wakes up three to four times nightly.  He sleeps like me, but I have never required too much of the stuff. We have a sleep study in town if the doctor will send him. Ah, I just need a good doctor. It just a frustration.

I have talked to the doctors about giving him something to calm him down so they can get all the required blood, but that can throw off the results.

I am thinking that he has another infection.  The worst had settled into his spin, but that was years ago.  Most are centered in the head.  If it is really bad I suppose it could cause the nose bleeds and deffinately cause the headaches and weakness, except for the side thing, but maybe it could be due to balance.  When he had these in the past the only way another good doctor could detect them was through x-rays or MRI.  That's what I am hoping for anyway.  He has had so many of these that his lymphnodes behind his ears are blown out and oversized.  The good one that did the x-rays checked the largish lumps.  She said they will probably get bigger as he goes through life, but we can live with that.  Maybe between infection and sleep deprivation it can be explained.

Hey, this kid is kind of sickly, but you would not believe how wonderful and good natured he normally is.  He makes sure that anytime I buy something for him, I buy the same for his brother and sister.  And what a sense of humor.

Hey Buckeye, that is  a really good idea! Also I am doctor shopping.
 
Joined
Apr 13, 2003
Messages
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Cambridge, MA, USA
Copper, i'm so sorry to hear that.  It sounds like half of us here are asthmatic, and the other half know an asthmatic.  I know that cold air triggers mine, or sudden changes in air temperature.  Obviously there's more involved here than that, but it's all i can think of that hasn't been mentioned.

It's a very rhythmical things for me, too.  Around 3-4AM, the asthma is very bad, especially if my sleep is disturbed (or i'm not asleep) during that time.

One other thing that occurred to me is a parasite- you said he eats a lot but is losing weight.  Is there any chance he has worms of some kind?

The MRI sounds like it would be crucial, to me.  There are much more sophisticated forms of MRI than the basic one everyone is familiar with, and hopefully you can get him to be checked under one of the new types. There's one called a Functional MRI that can detect what parts of the brain are involved in what activities, and if it seems normal. I wonder if they might not find some abnormalities there that are causing these symptoms.

Sorry to grasp at straws, but we all want to help here.  It's really sad to hear about your problems with the doctor.  Have you tried contacting a doctor at the Mayo Clinic?  Perhaps you could interest one in the seemingly intractable, new disease.

My prayers are with the two of you.
 
Joined
Mar 17, 2003
Messages
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Location
Hastings NE
Yes, Before Daughtery left he check for a water parasite, but it was not there. I do not think anyone has checked for a liver or intestinal worm.

I have asthma to, but it is now fairly mild now. Mine is also triggered by temp changes...cool (pun).

My daughter was diagnosed with asthma last winter. It is on a drastic rise.
 
Joined
Jul 4, 2003
Messages
439
Location
central upstate New York
I hear you.
One of my sons was born with problems, I changed pediatricians 5 times before he was one year old just because I didn't agree with them.  He was diagnosed with asthma very young, he is now almost 17, still not very well controlled with meds.  He has had a sleep study - he has sleep apnea.  Not something to mess around with - his father died at 43, his grandfather also at 43 (he's not looking forward to that age already) from major heart attacks.  I encourage you to get some doc, even your old good doc, to refer to the sleep study lab.  Go to specialists, they're the ones who will hunt & will refer to even other specialists.  Go to big city medical centers/teaching hospitals, they have the research facilities.  Be prepared to see lots of doctors until you find someone in whom you feel confident.  We are now down to just 3 different specialists, currently.  Find a new psychologist, too.  And while it's true giving him anti-anxiety meds will affect the lab results some, it won't matter for every thing they could check for.  Ask specific questions, sometimes they can tell just how much it would affect it & they can allow for it.  Some results would be more helpful than no results.  No lab work is worth torturing your son for, either.  There are topical analgesics they can put on his skin before the draw, too.  Don't accept pat answers, push - then push some more.  I think you know how to do that.  (Sounds like the sidearm didn't help that much.  Maybe you should go in uniform to every visit.)  Don't be intimidated by the medical profession.  They don't have all the answers even though, in general, they like to make you think they do.  And, as you have already pointed out, you know your son better than they do.  There; from a mother (& nurse) who's been through some.   Be glad to chat with you more about it. Good luck!
BTW - my son wants to be a police officer.  
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  He's our black sheep, no other law enforcement people in the family.  (And a couple in the family who are shy of them.)
 
Joined
Mar 15, 2002
Messages
1,866
I feel really bad for your son Zackerey. The docotor now a days are pretty good finding the source of the problem. I pray for a speedy recovery.

Take Care and Many Prayers,
Travis
 
Joined
Sep 8, 2003
Messages
313
Location
N'awlins
I am just utterly suprised that they do not have a white blood cell count yet. Heck, I get a white blood cell count evety time I go to the Doc, and I am not sick.

I would be exploring all options to swithc doctors, and in the meantime I would be getting irate with this doctor untill he showed some action.

Casper
 
Joined
Aug 25, 2003
Messages
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Markham, Ontairo
i hope you and your son gets well, emotinally and phyisically. i agree with some other people that its a parasite. they can drane energy fast and causes vomiting and dumps. try to have him be as happy as he can. oh, and are you living beside some high tension power lines? i heard in rare individuals, the magnitisim generated can weaken white blood cells. i hope your son gets well. i fell like screaming to the docter 'OPEN YOUR EYES FOR GOD'S SAKE!'. Zongyi
 
Joined
Jul 10, 2002
Messages
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Location
State Line, Nevada
Hello Copper,

I am sorry to hear about your son. I just wanted to let you know that my thoughts and prayers are with him. I'm sure he will be ok, hang in there.

-Doug
 
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