Friday, January 22, 2010

Being Diagnosis-Free

My son left the hospital a mystery. He had a lot of testing done. Everything came back negative. All leads were followed through and the dozen or so doctors and specialists working on my son's case couldn't figure out what made my son so sick. The official diagnosis was dehydration. Dehydration seems like a symptom, not a cause. I spoke to some doctors who, when pressed, showed dissenting opinions about the official diagnosis as well as some of the speculated diagnoses, but they could not provide a clear answer.

This is not my ideal situation, but the doctors did all of the testing they could and there was nothing left to do. I don't blame them or think they were in any way negligent. There are two options as to what will come of this incident.

Nothing.

Daniel may live the rest of his life without going through anything like this again. If the cause was something he ate or an undetected head injury, both of which were thoroughly tested for, it was a one-time event and unlikely to repeat itself.

Something.

This could happen again. If he has diabetes or a metabolic disorder and the test results were wrong, we will land ourselves in the hospital again. At that point, the doctors will be forced to come to a definitive conclusion and we can move forward from there.

I can't articulate exactly how much testing was done, as I don't have a copy of all of the records. However, there have been some suggestions from readers as to what it might be. As I read each one, I noted that each had already been looked into by doctors or specialists, from meningitis to botulism, and all were ruled out.

One doctor said that the hardest thing for me will be to not suspect that this is happening again each time my son shows the first sign of sickness. He was a doctor that thought it was a one-time thing. He is right. It will be difficult for Dan and I to decipher what is regular kid-sickness, and what is a serious, life-threatening event. Our plan is to continue to pray for wisdom.

54 comments:

Rebecca said...

Emily,
I've been following your blog and praying for you and your son. It is scary when something happens to a child!
I would recommend that you get copies of all the testing and such done and the results. If this turns out to be something, they could help. I know the doctors/hospital have them but it is very good to have them yourselves in the chance that you move or they are lost or something like that. Plus, parents will often notice something that is missed by the professionals with repeat tests (ie. if the numbers are slightly off for the individual but not out of the norm for the population). We have had many medical issue with our children and I've always been glad to have all the results for my files!
Praise God Daniel is doing better. We will continue to pray!
-Rebecca

sweetmonkeycheese said...

With what happened I think you have every right and responsability to jump at any red flag in his health. That is what Dr's are there for, the office should always just be a phone call away to help.

Elizabeth said...

I agree, it will be hard as a mother each time little Dan will get sick. Hopefully it was just a one time thing that will never happen again. But luckily, now that you are more aware of what his symptoms were last time, it will be easier to detect if it is something severe enough to warrant a doctor visit or something tiny like the common cold.
Have the doctors said that he will make a full recovery, after the therapy?
I am continuing to keep you all in my prayers, as this was such a scary and stressful thing. Even with all the medical staff and care one can receive in the hospital, I bet that Daniel will feel more comfortable in his own home enviroment and tend to have faster progress...hopefully!

Kimber said...

Follow God & he will lead you! So happy he is home & doing much better now! God Bless your family!

Becky said...

Emily, when you said that it will be hard for you to tell when your son is just "kid-sick" or when he is seriously ill, it made me think of my situation with my son. Two years ago, on a Monday night, he became very very fussy. I thought he was just tired. The next day he was fussy and pulling on his ear, so I thought he was teething (he was, but it was more). That evening (Tuesday) he was really crying, not wanting to eat, fussy, pulling on his ear. I thought it might be an ear infection. At midnight I called the doctor and she said it was probably an ear infection. After two days on an antibiotic he was getting much worse so I took him in to see the doctor. She examined his ears and sure enough, he had a mild ear infection. I asked her to check his throat because I thought he might have strep because he wouldn't eat or drink. It turned out at he had a very, VERY serious infection on his tonsil. He was in the hospital for 5 days and had a surgery to remove a staph-filled blister on his left tonsil.

I tell you this for a reason: the ENT who treated my son said that since the staph was now in his body, it would likely be a recurring infection/procedure and that he'd have to have his tonsils out at age 4 or 5. Well, that was two years ago and he's 3 now and there hasn't been any sign of infection or illness! And it did take awhile, but I'm not back to not freaking out at every sign of illness :)

Anonymous said...

I once passed out in college. I was dehydrated, but later I was also diagnosed (by a different doctor) with Dysautomonia (Neurocardiogenic Syncope).

Go to another doctor.

Venti said...

Sending prayers to you and your family.

Scottish Twins said...

I've been hospitalized for dehydration due to my Crohn's Disease before and I know how scary that can be. I can't imagine seeing my child go through it.

I will keep praying for little Daniel. The Lord will take care of him, Emily.

Lori in Wisconsin said...

Thank goodenss he is home and safe.

Thank goodness for insurance.

DarcyLee said...

Emily-My daughter very recently passed out twice within minutes at work. They rushed her into the hospital ER, did lots of tests, and examined her, asking her lots of questions, but they found nothing wrong. On her follow up visit to the doctor, he told her that sometimes a person's blood pressure will go real low and cause someone to black out. That was about 3 weeks ago and she has been fine since then. We may never find out why it happened and there really weren't any signs that it would happen beside she was dizzy and nauseous. We'll continue to pray for your little guy and for you that God will give you some peace at this time.

Sarah said...

I can only imagine how frustrating that must be. Many thoughts and prayers for your family and I hope you will get some answers soon!

Paula said...

My husband had a seizure 4 years ago while at work, he had never had one before that and has not had one sense, sometimes our body's go thing even doctors can not explain. I have been praying for your family and will keep praying.

dona said...

Praying for wisdom --- good plan!

Organizing Mommy said...

Praying for peace for you guys. God will reveal it when he is ready.

Devon said...

I would strongly suggest with the other poster to get a record of all tests done. It is essential, as a parent advocate for your child, that you have copies of these things, most especially since they're not entirely sure what's going on.

I am hoping for a non-recurrence as well. Get better and STAY better, Daniel!

The Semi-single Mom said...

something similar happened to my nephew who was 6 at the time. They thought it was meningitis but thankfully that was ruled out before they did the spinal tap. (And double thank God b/c he became ill at my daughter's birthday party where I would have had to call about 15 parents) but all was well & he was back to himself. So hopefully yours will turn out the same.

Diana @ frontyardfoodie said...

We'll all be praying with, and for you. God has a plan and is in control of everything. Let that at least give you peace.

Much love and prayers

Diana

Vanessa said...

I wish all the best to you and your family. It is important for all readers to note that dehydration can indeed be both a cause of, as well as symptom of, serious health concerns, and as such it is often a legitimate diagnosis, even when such a simple explanation seems unlikely for such a horrible health event. I can't imagine how hard it is to not have any absolute and concrete answers but please try to take any and all "differential diagnoses" from concerned readers with a grain of salt...

Amber said...

Keep fighting. Plenty of the tests that they did take more than a week to come back, so you might have an answer then. Don't accept "no diagnosis." Get referals to specialists if you have to. Keep fighting and you will find an answer.

Anonymous said...

Hi. I'm new to reading this blog (sadly began following just one day before your son got sick). This may not help at all, but then again, it may, so I'm sharing. About 2 years ago our 4 year old son had a similarly scary, but not the same symptoms exactly, sort of episode. His also included a severe seizure. The first question I would ask is, is his speech/motor movement the same now? If something neurological was going on, from what I understand, it could have effects lasting a few days, like our son. It's rare, but does happen. (I'm not an expert. This is just me thinking out loud). Did they do an EEG? That's the test that measures the electronic rhythms in the brain. If they didn't, I personally would want one performed. Another thing I would watch for is are other family members sick, or did he later become sick (like, virus/flu, sick)? Our son's episode was a few days "before" he got noticably ill in other ways. The rest of us had a virus. He does see a neurologist now, and he's doing very, very well. His is something he will outgrow, they say, but before we found the neurologist they thought is was poisoning, anaphylactic shock due to allergies, meningitis, and a million other things they tested for, all coming back negative (actually the allergy tests came back a false positive). It was very frustrating now knowing what was wrong, and also knowing we almost lost him. We will be praying for your family, a family we really don't know, yet we've shared such a similarly horrible experience. I'm terribly sorry you've had to endure this. If you'd like to ask me any questions, feel free to email me. Thanks.

Kathee said...

Did he have access to antifreeze on Sunday/Monday? Antifreeze poisoning would only have shown up in tests done within the first 24 hours of ingesting the antifreeze. After that, it would present as metabolic disfunction, causing damage to the kidneys and brain, showing up as inability to walk, loss of motor skills, etc.

I'm assuming he probably tested as having ketoacidosis, since you mention him being tested for diabetes and metabolic disorders, as well as antifreeze poisioning. Ketoacidosis is a common marker for Type I diabetes, but, it's also a marker for undernutrition.

Whatever the cause, I pray your son's condition will improve, and the cause found and remedied.

Emily said...

Anon, they did do an EEG, but again found nothing.

Kathee, we keep all car care products in the trunk of the car because that's practical, so it wouldn't have been antifreeze. The only household products that we have containing ethylene glycol was our printer ink refills, and they were sure that would have showed up as colored urine. When we got home and checked, all our printer ink refills bottles were untouched anyway. The undernutrition that results in ketoacidosis is usually a protien deficiency, which isn't a problem in our family.

Buzzy Buzzalot said...

Did they do an echo? Or even a heart cath? A heart cath can show a blockage somewhere in the carotid arteries or in the kidneys (renal arteries). I know what it is like to watch your kid like. I say take him in every time you are concerned especially at first. Don't worry about missing the signs. In time, you will be able to tell when he has a cold and if he is really sick.

PK said...

Then why your initial comment about the Ers concern about antifreeze? Why would they even be concerned about that ? Something had to trigger their concern, it is kind of an odd thing to test for.
THANK GOD your child is alive,and will live!

Emily said...

PK, I said "something like antifreeze". They were concerned because he showed some of the symptoms of ethelyne glycol ingestion, which is most commonly ingested from antifreeze, but the more we followed through with that lead, the less likely it appeared.

Anonymous said...

I am very glad to hear that Dan is ok and has a good prognosis.
I am curious if you shared your diet with the doctors? Do they know how much protein your kids eat? Did they check for proteinosis?
I am very confused (as you also must be) about dehydration being the final diagnosis. That would not cause Dan to have neurological symptoms such as lose of motor contol functions such as walking. It is very treatable. Ugg, you must be very frustfrated, sorry you have to go through this. Was dan vomiting a lot or having very loose stools during the week? Is it possible he was in a coma for longer than originally thought and that is what caused his neurological problems?
I really hope you get the answers that you need and Dan pulls through all of this. I cannot imagine if this happened to one of my girls. Keep up your strength and ask for help if you need it. You are going through so much right, take each day as it comes and think positively!
Tina

Kendra said...

My sister had a virus when she was younger that "landed" in her hips. She was unable to walk for about 6 weeks. Then one day she just stood up and it was like it never happened. Weird things happen sometimes, but I hope it doesn't happen again for you. Prayers for your family, be well.

CJ said...

Thinking about you & your family and hoping you're all getting some rest!

Rachel said...

Hi Emily,

I am thankful that prayers were answered and Daniel is safe at home with you. Physical therapy will be taxing, but it will work and he will spring back - that's what kids do. I know he's been tested for everything under the sun and that every person reading your blog is mentioning some other out of left field rare condition, but was Daniel tested for methylmalonic acidemia? Since you mentioned antifreeze in your original post about his condition, I thought of this. The symptoms are almost identical to antifreeze poisining.

Good luck with everything.

Anonymous said...

Emily, I definitely advocate getting a copy of his medical records, which you are entitled to by federal law. You will be able to see his test results and Doctors comments in his charts. I was a very sick when I was child and my mother requested my medical records for some reason. She discovered from the doctors notes that the doctor thought I was faking being sick to get out of school (I was not, it turned out that I have an autoimmune disease).

SugarCoatedLife said...

I bet if you asked a physician mothers,they would tell you that raising children is scary, that no matter what they teach you in school, children are unpredictable. You will worry, with every cut, with every cough, and wonder if this is another episode. I know you wish the doctors had been able to hand you a diagnosis, but no matter how smart doctors are, it seems that the human body is much smarter. Only time will tell if this was an incidental event, or a harbinger of a underlying problem. Regardless, I hope he gets back on his little feet quickly. Don't loose your confidence mama! You brought him into the world...you know more about taking care of him than anyone else!

Suzie said...

Wow, I can't believe what you're going through with no definitive diagnosis for little Dan. As others suggested, you can acquire the hospital records if you go to another doctor for a second/third/twentieth opinion. I don't know if they will release them directly to you without a subpeona. Since at this point you don't seem likely to pursue a malpractice suit, you need to check with your state's attorney general's office to see what the laws are. But, IMHO, it would be easier to find another GP and sign a release from their office that you take to the hospital allowing them to release the records to the new doctor.

Wishing you all the best.

--Suzie

Emily said...

Tina, I was very open with the doctors about our diet. His motor control, they said, was from him being in bed for so long and whatever it was taking energy from his muscles. I'm not saying that right, but he's back up and about. He's not fully re-potty trained, but he's doing stairs and walking around, even kicking his brother. His poor motor skills was a temporary thing, although he still has some weakness to overcome.

Suzie, I plan on obtaining all the records.

nicole said...

You don't have to post my comment as it's not important, but I am seriously laughing over how many would-be doctors you have trying to diagnose your son, whom they have not seen let alone tested. Yes, docs can make mistakes, but there are times they honestly do not know what makes us so sick.

Our Family Is His said...

As a Mom who walks through medical issues daily with her children (both have multiple special needs), I am the queen of medical records. Get them. First, it will give you some insight into what the doctors did, didn't do, and thought. Second, and probably more important, it will be useful should Dan need to see another doctor for something related, or even unrelated. You do not need a subpeona. They are legally your records, the hospital/doctor is just the custodian of them.

I have both of my sons entire medical charts from their pediatrician being copied right now (the only medical records I don't have in full for my children). Those did cost me $25, but it was well worth it. They have a right to charge you a small fee for copying (they won't give you the originals, but full copies), but besides signing a release, that's all they can require of you.

I agree that doctors don't know it all. The Great Physician is the only one that does. I have had my experiences with doctors that just didn't know what was happening to our children. It's scary when they just don't know. Be persistant. If you have that niggle in your belly telling you to push, push. If you need another opinion, get one. If I hadn't done this, we would be far worse off with our childrens health than we are now. I wouldn't let doctors tell me, "come back in 6 months" and my children are all the better for it.

Your PT might have some insight for you as well, go to them as a valuable resource. Many times they see enough children like this and they can say, "goodness, 75% of the time when I see a child like this it's been XYZ" and then your doctor test and finds that's what it is.

I pray this was a freak thing. Dehydration can come quickly. My son went from running to lethargic and unable to walk within hours due to dehydration. I kept a log of what I was seeing, so we know how quickly it happened. He ended up hospitalized, with a cut down (his dehydration was so bad they couldn't get a vein so a surgeon actually cut his ankle open and put an IV into his vein that way and stitched it up), and many tests. His was truly dehydration. That's his MO when he gets sick, stop eating all things and stop drinking. Since he's still 80% - 90% on the bottle (even at 2 years old due to medical issues) with medical foods being put in instead of formula or milk, dehydration can happen quickly.

Anonymous said...

Glad to hear Daniel is home. Do you guys have good insurance? My son was in a hospital for three days last year and I was floored to receive a $2500 bill. That was what I owed after insurance.

Catherine said...

I am so glad that Danny is up and about. Many prayers for a full recovery and no repeat performance.

THere are so many health pitfalls that can occur with children. I have 5 of them, so I have seen it all, if not with my own children, then with their peers.

One thing that has always been a mystery is the whole category of post infection autoimmune reactions. My son had one in the form of post infectious glomerulneprhitus. Protein in the urine, fluid retention and the risk of kidney failure. Some infection had come and gone; it is usually staph, we were told, but he had no staph antibodies, so it had to be something else. The body was reacting after the fact. This was a very serious issue in his case, as he could have ended up on dialysis and the kidney transplant list if things did not clear up. There was no treatment other than addressing the symptoms.

A month or so later, his friend got a post infectious reaction that caused him to lose use of his legs for several weeks. Again, no reason could be found. His father is a well connected doctor in NYC, so no stone was left unturned. Like my son, he recovered on his own from the malady.

Some years ago, my middle son had a gastric infection that made it impossible for him to hold down anything. Even after the infection was gone, he continued to be unable to hold down even water. So he was put in the hospital to prevent dehydration. When things finally resumed to normalcy, he was unable to walk well. I was shocked at how a few days in bed like that could take away so much of his mobility.

In any of these cases,no diagnosis was ever made. No repeat performances either for any of the kids.

Take care, and God bless.

frugalredneck said...

Emily I know that you don't have insurance, But our baby (2) was born with a lump in his neck, We have taken him to 5 doctors so far, His regular doctor here, Tulsa oklahoma to 2 specialists and Kansas city to 2 specialists there. I could not accept their answer of it was nothing and it will either go away or have to be looked at when he is older. He got sick last year, His first illness, and the lump swelled to the size of a softball, Dr.s still said same thing. I found another Dr. 50 miles from our house, An ear nose and throat specailsts who finally tested him, He did a CT scan last week, To rule out any cancers and to find the diagnosis, It is thyroglossal duct cyst, and is growing quite rapidly, eventually could cut off his breathing and really screw up his thyroid. His surgery to remove it is next week. The new Dr. feels like this is urgent, Because he small for his age,(could be interrupting his growth) and he has had trouble eating since he was a baby. I will never take any Dr.s opinion if my gut instinct gnaws at me like that again, Even if I have to go through 20 doctors. Anyway I have been praying for your son, And hope you all are doing good, Please add my matthew to your prayers on the morning of the 28th for his surgery to go well. Thanks so much and god bless. Michelle frugalredneck.blogspot.com

Shelley said...

I have a 2 year old with diabetes. So I just wanted to give my 2 cents since I you said that might be a possibility. Juvenille diabetes normally presents itelf with weight loss caused by urinating out all a childs calories. At diagnosis my baby was drinking 2 to 3 gallons of water and milk a day and weighed 19 lbs it was 2 weeks after her second birthday.

If you want to rule out diabetes all you need to do is buy a meter at walmart. They have a store brand that is fairly reliable but they are expensive. Buy some test strips and follow the instructions to check his blood sugar an hour or two after he eats. A blodd sugar of 140 or more in a child that age is a good as a diagnoses.

You should know that juvenille diabetes can take a year to develop but can emerge for brief periods during that year and then disappear entirely. I would think they would have tested have tested his urine for ketones first before anyother testing but if you still have concerns there is likely reson a why. As his Mom I would try to persue any gut feeeling I had to find an answer.

Holly said...

Just wanted to send good thoughts and best wishes for you and your family. I know it must be a really hard time for you all.

Anonymous said...

Emily, eating a high protein diet, plus ketoacidosis, plus traces of what looks like ethylene glycol in the blood could indicate a metabolic disorder called MMA. Please check it out and ask Dan's doctors about it - little Dan sounds like he had many of the symptoms.

http://www.newbornscreening.info/Parents/organicaciddisorders/MMA.html

Emily said...

Anon on insurance, that's in the FAQ.

frugalredneck, I will keep your Matthew in our my prayers. That must be scary.

Anon on MMA, I'm pretty sure that was what they were testing for, but I'll have to check. It looks exactly like what he went through.

Carolyn said...

Emily,

I'm so sorry for what your family has gone through. I am thankful that your little one is on the mend though.

I just found your blog a few days ago and have enjoyed reading your archives.

Blessings

Patty said...

I doubt you use mixes but I think you use flours and yeast. Have no idea if this is remotely related but worth passing on...
"A high school student had pancakes for breakfast and it almost became fatal.
His Mom made him pancakes, dropped him
off at school. Her son called to
say he was having trouble breathing. She told him to go to the nurse. The nurse called the paramedics and they worked on the boy all the way to the hospital..He came so close to dying. Evidently this is more common then we knew. Check the expiration dates on packages like pancakes and cake mixes that have yeast which over time develop spores... Apparently, the mold that forms in old mixes can be toxic! Throw away all outdated baking mixes.

You can check this website........ http://www.snopes.com/medical/toxins/pancake.asp"
the snopes webside discounts the 'yeast which over time develop spores part' but doesn't discount the fact that mold could be in the food and could cause a reaction. Did they do any allergy testing on your son?
I'm no medical professional...just passing an interesting word.

Emily said...

Patty, interesting, we don't use mixes, and it didn't seem like a normal allergic reaction, but I can't remember if they did check for allergies.

ChiefFamilyOfficer said...

Emily, I'm sorry you're going through this. My own son was hospitalized last year and it was terrifying, as the doctors keep hypothesizing and then coming back saying, Nope, it's not that. We left the hospital without a firm diagnosis, and eventually got one through process of elimination. My son's symptoms were nothing like your son's, but I just wanted to say that I understand the fear and frustration.

A few years ago, the son of one of my friends had a seizure, and the doctors couldn't figure out why. My friend was told that was actually GOOD, because the odds of it happening again or being a long-term issue were better if they couldn't find a cause. If they could pinpoint a cause, there would be nothing good about it. Terrifying, but he seems fine now.

Anyway, I just wanted to say that you're not alone in your fear. Good luck with everything, you'll be in my prayers.

Lisa said...

What about your apartment routine extermination ? I am highly allergic to all pesticides. Has the complex sprayed lately or any neighbors that might have set off flea bombs? They can cause neurological problems. Just another thing to check out. Hope Daniel is doing lots better. Still praying that you will find out what caused it , so it can prevented from happening again if possible. Get some extra rest the stress can mess with your breastfeeding .God bless, lisa

mrs. c said...

if at all possible, get a second, or even third opinion, i have seen things not diagnosed the first time around, but with re-testing, and other drs. involved, it can make a huge difference. my cousin had a large anuyerism in her brain, one specialist told her not to worry, go home, she brought the films to another dr. and it turns out it was close to bursting, and much larger than originally predicted....it's just worth another look-see.

simple in France said...

Emily, I second the idea that it's a good idea to get a copy of all your son's records. When we got DH's summary report from the hospital, there were things we had no idea about--and of course, there are still things we don't understand. The thing is, they may have done tests that were 'routine' or whatever that you didn't even hear about. It may be useful for you to have those records on-hand and just look over them.

It's hard not having all the questions answered--and, yes, you might be paranoid after this, but so what? My policy during DH's crisis was to follow up anytime I felt worried until someone explained to me why I should not worry! You may feel you want to get your son checked out early after this whole thing--what harm could that do?

Daisy said...

As a mother with a very medically complex child (we have nursing care in our home, he is maintained on a feeding tube, seizures etc.) I can totally relate to the difficulties of trying to tease out whether one's child is just kid-sick or life-threatening sick. It is one of the constant tensions that parents like us sometimes live with. Ifind myself sittng her wishing I had some magic words of wisdom, but I don't. What I have learned is 1) find doctors who you trust and 2) trust your gut.

What I can offer is simple support. I will keep your son and family in my thoughts and prayers.

Daisy

Audra said...

How scary! Praying fervently that this is a one-time thing and that miraculously they will have a diagnosis beyond dehydration.

Rebekah said...

Emily, I am so glad you were able to bring Daniel home and that he is recovering ... praise God! Please keep us updated ...

Ashley said...

Hi Emily,

I'm glad that Daniel is home now and feeling better. Did they test him for mono? When I was an older teen I got it and landed myself in the hospital with hallucinations and whatnot because I was so dehydrated from the other symptoms of mono (fever, nausea + vomiting, etc.) I didn't know I had mono, but voila! It actually took two different hospitals to figure it out - which I found strange because it's so common.

Emily said...

Ashley, he never had a fever. That was the mystery of it all.

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