Medical Related... when would you make the call to go elsewhere? *updated*

[Piecey]

I'm working with a pretty much non-existent knowledge of anything medical related.

DS#2 was admitted last week to a local hospital because he was choking on everything he ate (to the point that he turned purple/blue). He was 4 weeks. An Upper GI diagnosed reflux which we now have under control.

Blood work during his stay showed elevated levels of potassium. The first draw was 6.x, I'm not sure exactly. Due to a family history of sorts (FIL was treated at a VA hospital on a Thursday, they told him his potassium was "sky high" in his words and he died that Saturday, suddenly- the only thing the autopsy turned up out of the normal was the incredibly high levels of potassium, he was 52) so because of that our pediatrician did another draw before we were set to be discharged after that 1st night... it was 7.4, so they ended up keeping Owen another night.

Our pediatrician called a nephrologist at WVU's hospital (Ruby). He suggested an ultrasound of the adrenal gland, which was okay. His pediatrician also ordered an echo because he heard a small murmur that had not been there previously. They found a false tendon, but everything else looks normal. It was sent to WVU to be reviewed by a pediatric cardiologist, though.

The nephrologist also suggested they flush his system with lasix, IV Fluids and discontinue the formula because of the added potassium (he was given sugar water). After the first night his level was 4.8 at 8am. They redrew at 2pm, after discontinuing lasix and lowering the IV fluids to 5mL/hour.. it was 5.6 and his cortisol levels were low.

Our pediatrician then called a pediatric endocrinologist at Ruby. He suggested a few labs (that aren't back yet) and let us come home after the 3rd night in the hospital. Owen is now on special formula for babies that would benefit for lowered mineral intake (Similac PM 60-40).

We had blood drawn on Monday and the potassium level was 7.6... though they are sure it was hemolized. They redrew this morning but I haven't heard back yet.

Our pediatrician has told us before that he feels like he is "chasing" this potassium thing and we'll never find an answer.
Friends and family are pushing me to take him to Nationwide Childrens Hospital in Columbus, not to settle for not having an answer.

I don't know, at what point, we make the call to take him elsewhere. It seems to me that our pediatrician is still looking, and working with other doctors, but I'm still being pressured to go NOW and not wait.

Anyone been through this? Anyone have any suggestions or ideas?
I'd love any words of wisdom or advice at this point.

 

[klj27]

I am so sorry you are going through this. Is he currently being treated at a childrens hospital? If not, I would probably take him to one for the next steps. We have a lot of hospitals near us but anytime we have taken our kids in we drive to get to the childrens hospital.

 

[tlbwriter]

Yes, it's time. Tell your pediatrician that since he feels he's not going to be able to find an answer, you'd like to be referred to a specialist at a children's hospital.

 

[Piecey]

I am so sorry you are going through this. Is he currently being treated at a childrens hospital? If not, I would probably take him to one for the next steps. We have a lot of hospitals near us but anytime we have taken our kids in we drive to get to the childrens hospital.

No, he has not been seen at a children's hospital.

Yes, it's time. Tell your pediatrician that since he feels he's not going to be able to find an answer, you'd like to be referred to a specialist at a children's hospital.

We don't need a referral for insurance purposes, but is this still something we need to do through the pediatrician?

I guess I just don't know where to start.
I figure, too, that he'll want to send us to Women & Children's in Charleston, WVa. or to Ruby in Morgantown. DH and I have discussed it and have already decided if we're going anywhere, we'd like to skip straight to Nationwide in Columbus, OH.

 

[HamTown]

If you don't need an insurance referral, just go.

You're heard from a cardiologist and nephrologist. I might try a endocrinologist as well.

 

[tlbwriter]

Sometimes you need a referral to see a specialist, even if it's not an insurance issue. I don't need a referral to get my insurance to cover a pulmonologist, for example, but he won't let me just call up and make an appointment - he only takes referrals from GPs/family physicians. You might call the hospital/doctor you want and see if they require a referral.

 

[themarquis]

ITA, time to go elsewhere.

The high potassium in FIL may just have been a fluke and not related to the baby's high potassium.

I'm not a medical professional, but there are some metabolic issues that babies can be born with that look like what is happening to your baby. For example, CAH is not too uncommon and is very treatable. I'm attaching a wikipedia descrition of the most common form of CAH -- there's lots of medical-ese, but I highlighted some of the relevent bits.

Bottom line -- he needs to be seen at a children's hospital by specialists who can really investigate this.

Severe, early onset 21-hydroxylase deficient CAH

The two most serious neonatal consequences of 21-hydroxylase deficiency occur when there is minimal measurable hydroxylase activity from prenatal life: life-threatening salt-wasting crises in the first month of life for XX and XY infants alike and severe virilization of female infants.
[edit] Salt-wasting crises in infancy

The excessive amounts of adrenal testosterone produce little effect on the genitalia of male infants with severe CAH. If a male infant with CAH is not detected by newborn screening, he will appear healthy and normal and be quickly discharged home to his family.

However, the lack of aldosterone results in a high rate of sodium loss in the urine. Urinary sodium concentrations may exceed 50 mEq/L. With this rate of salt loss, the infant cannot maintain blood volume, and hyponatremic dehydration begins to develop by the end of the first week of life. Potassium and acid excretion are also impaired when mineralocorticoid activity is deficient, and hyperkalemia and metabolic acidosis gradually develop. Ability to maintain circulation is further limited by the effect of cortisol deficiency. The early symptoms are spitting and poor weight gain, but most infants with severe CAH develop vomiting, severe dehydration, and circulatory collapse (shock) by the second or third week of life.

When brought to a hospital, the 1-3 week old infant will be both underweight and dehydrated by appearance. Blood pressure may be low. Basic chemistries will reveal hyponatremia, with a serum Na+ typically between 105 and 125 mEq/L. Hyperkalemia in these infants can be extreme—levels of K+ above 10 mEq/L are not unusual—as can the degree of metabolic acidosis. Hypoglycemia may be present. This is termed a salt-wasting crisis and rapidly causes death if not treated.

As ill as these infants can be, they respond rapidly to treatment with hydrocortisone and intravenous saline and dextrose quickly restores blood volume, blood pressure, and body sodium content, and reverses the hyperkalemia. With appropriate treatment, most infants are out of danger within 24 hours.

 

[The Mystery Machine]

Go to the Nationwide Children's Hospital. Start making calls now!

Your ped. has reach the end of his expertise so you need to seek out doctors that are ped specialists. You don't need to burn your bridge with the ped, you just need to start driving the bus so to speak. Do your homework and then tell your ped where you want to be seen and have him makes some calls.

 

[dis-happy]

At 4 wks they are still so fragile. I wouldn't hesitate to get to the best Children's Hospital you can get to. It helps to have your current dr. refer you as they can usually get an appt quicker.

Get copies of ALL the labs that have been done so far. You need to keep a record of what's going on. It also helps for meeting with the specialists. Also, you can go over it and see if anything else is out of whack on the blood work (sometimes dr.'s edit what they tell you).

Does insurance still cover you if you go out of state? That's something else to consider.

 

[Piecey]

ITA, time to go elsewhere.

The high potassium in FIL may just have been a fluke and not related to the baby's high potassium.

I'm not a medical professional, but there are some metabolic issues that babies can be born with that look like what is happening to your baby. For example, CAH is not too uncommon and is very treatable. I'm attaching a wikipedia descrition of the most common form of CAH -- there's lots of medical-ese, but I highlighted some of the relevent bits.

Bottom line -- he needs to be seen at a children's hospital by specialists who can really investigate this.

Severe, early onset 21-hydroxylase deficient CAH

The two most serious neonatal consequences of 21-hydroxylase deficiency occur when there is minimal measurable hydroxylase activity from prenatal life: life-threatening salt-wasting crises in the first month of life for XX and XY infants alike and severe virilization of female infants.
[edit] Salt-wasting crises in infancy

The excessive amounts of adrenal testosterone produce little effect on the genitalia of male infants with severe CAH. If a male infant with CAH is not detected by newborn screening, he will appear healthy and normal and be quickly discharged home to his family.

However, the lack of aldosterone results in a high rate of sodium loss in the urine. Urinary sodium concentrations may exceed 50 mEq/L. With this rate of salt loss, the infant cannot maintain blood volume, and hyponatremic dehydration begins to develop by the end of the first week of life. Potassium and acid excretion are also impaired when mineralocorticoid activity is deficient, and hyperkalemia and metabolic acidosis gradually develop. Ability to maintain circulation is further limited by the effect of cortisol deficiency. The early symptoms are spitting and poor weight gain, but most infants with severe CAH develop vomiting, severe dehydration, and circulatory collapse (shock) by the second or third week of life.

When brought to a hospital, the 1-3 week old infant will be both underweight and dehydrated by appearance. Blood pressure may be low. Basic chemistries will reveal hyponatremia, with a serum Na+ typically between 105 and 125 mEq/L. Hyperkalemia in these infants can be extreme—levels of K+ above 10 mEq/L are not unusual—as can the degree of metabolic acidosis. Hypoglycemia may be present. This is termed a salt-wasting crisis and rapidly causes death if not treated.

As ill as these infants can be, they respond rapidly to treatment with hydrocortisone and intravenous saline and dextrose quickly restores blood volume, blood pressure, and body sodium content, and reverses the hyperkalemia. With appropriate treatment, most infants are out of danger within 24 hours.

Wow, thanks for posting this. This does sound like Owen.

He was 10lbs15oz at birth and has just now hit 12lbs at 6 weeks. Not a normal weight gain.

*Eta* He's a spitter, too. A bad spitter.

 

[chicagodisneyfan]

Find the best children's hospital and get there as fast as you can!

Good luck.

 

[Nette]

OMG... thoughts are with you and Owen!

 

[Mkrop]

Make sure your insurance will pay for you to seek medical care out of state. We are currently arguing about something for DS because we took him to the Dupont Children's hospital in DE, we are in PA. I am literally 20minutes from Dupont vs and hour from the Children'sHospital in Philly.

 

[Piecey]

At 4 wks they are still so fragile. I wouldn't hesitate to get to the best Children's Hospital you can get to. It helps to have your current dr. refer you as they can usually get an appt quicker.

Get copies of ALL the labs that have been done so far. You need to keep a record of what's going on. It also helps for meeting with the specialists. Also, you can go over it and see if anything else is out of whack on the blood work (sometimes dr.'s edit what they tell you).

Does insurance still cover you if you go out of state? That's something else to consider.

Yes, DH is a federal employee & our plan is one available to all federal employees so it has pretty awesome coverage throughout the US.

We've already checked and Nationwide is in network for us, too.

I called DH and he's pretty much told me to pack up the car and we're driving to Columbus tomorrow. LOL.

 

[vettechick99]

Piecey, if you don't like the answer (or lackthereof), go elsewhere. I posted once about a strange hole in DD3s leg. Her ped's NP said wasn't a big deal, just watch it, blah blah. After I pressed them, we were sent to a dermatologist who said it was scleroderma. Hello! Not nothing!

Maybe it's nothing, but I'd get a second opinion anyway.

 

[wvjules]

Why Cleveland? Have you thought about Children's Hospital of Pittsburgh? I took DD there when she was a baby for reflux/apnea issues. (We went to WVU too and I wanted a second opinion at CHP. They both had the same diagnosis.)

 

[Piecey]

Why Cleveland? Have you thought about Children's Hospital of Pittsburgh? I took DD there when she was a baby for reflux/apnea issues. (We went to WVU too and I wanted a second opinion at CHP. They both had the same diagnosis.)

Columbus, not Cleveland.
It's closer to us than Pittsburgh and was recommended by a family friend who works at Duke University Health Center.

 

[nmmom95]

Go to Children's Hospital now. I wish your family the best!

 

[Mrs. Charming]

It's definitely time. We hesitated on getting a 2nd opinion for DD3 as a newborn, and we should *not* have. I hope you get some answers, pronto!

 

[BEloveDisney]

I agree that you should check out a Children's Hospital.

I personally would go to Pittsburgh, my baby was in the CICU there for 17 days. He saw lots of cardiologists (I can give you names if you decide to go there), genetics, endocrinology, neurology, neonatalogy, occupational therapy...pretty much everyone in the hospital really! The nurses were outstanding and all of the doctors took their time in explaining things even when the news wasn't good. He too had some strange issues with potassium (I think...there was a lot going on).

Best of luck and let me know if you want names of the doctors he saw.