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What do you do if your child's doctor won't listen.

Posted by on Jan. 15, 2012 at 10:45 PM
  • 23 Replies

My son's story is very long so I'll keep it short as possible so if you need more details feel free to ask.  Basically my 2 year old DS was diagnosed with a rare metabolic disorder back in November call Hyperinsulism: Hyperinsulinemia/hyperammonemia syndrome (HIHA).  Basically when his body eats a certain type of amino acid instead of changing to protein it signals his body to produce excessive amounts of insulin but his glucose level is normal so it sends him into a severely hypoglycemic episode.

He was in the hospital for 15 days put on Diazoxide (the medictation for this) and his hypoglycemic episodes become a lot less frequent.  They were under control enough that he was sent home.  We eliminated foods with this amino acid in it and he did ok.  But they insisted he needed his pediasure to have enough nutrition.  As soon as we put him back on the pediasure his sugar started going low everytime he was given pediasure.  I relayed this to his Endocrinologist and they spread the amount out more so no more than four ounces at a timeand he still went low.  Everytime he would miss the pediasure his sugar would stay fine (pediasure is high in this amino acid he wasn't supposed to have).

So we go in for an appointment a week ago this last Friday and his doctor tells me out of the blue he can't have HIHA because his ammonia level has to be elevated at all times to be HIHA and his was only elevated once.  She said the fact he was having lows she was putting him back in the hospital and starting from square one.  She took him off his medication and said she was sure he had something called Dumping Syndrome and it was a result from the fundoplication he had in September.

The problem is with Dumping syndrome sugar and carbs are bad and protein helps.  So they took him off his low protein diet and put him on a high protein diet consisting mainly of pediasure despite the fact I told them pediasure makes him worse.  They went from giving him 4 ounces of pediasure three times a day to 8 ounces of pediasure 4 times a day.  Took away the juice, fruits and vegetables that were helping him even though I had relayed all of this to them.

So now instead of having one low a day on the regimine I had him on at home he is having severe lows 3-4 times a day.  I'm talking his glucose level being into the 20s.  And they won't believe me that it's the pediasure.  He can't get out of the hospital until his been off all IVs with no sugar lows for 48 hours and at this rate he'll be there forever because they don't think I know anything and are completely ignoring what I have to say. 

We are considering pulling him out but the only problem is this is the only Pediatric Endocrinologist in our area.  I'm really not sure what to do.  Becuase his doctor is convinced it is this Dumping Syndrome even though he's worse on the treatment for it than he was when he was on the treatment for HIHA.  I've flat out told the Endocrinologist and hospital doctors how I feel and they ignore what I have to say even though I told them their plan would make him worse and I was completley right and they still won't listen.  What would you do? 

by on Jan. 15, 2012 at 10:45 PM
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Replies (1-10):
haileys-mama
by on Jan. 15, 2012 at 10:50 PM
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I would request a copy of your sons records, and politely seek the opinion of another endocrinologist, even if you have to travel out of the area.  If the other doctor disagrees with your sons current treatment, and you feel more comfortable seeing the other doctor, transfer your sons care.

Alyssasmommy412
by Silver Member on Jan. 15, 2012 at 10:50 PM

Is there another drink like pedisure that doesn't have this aminio acid? I would just tell them t hat it makes him ill and your not going to give it to him and see if you can get regular food that he can eat into him. Good luck Mama


cnm5381no2
by on Jan. 15, 2012 at 10:54 PM
I agree.

Quoting haileys-mama:

I would request a copy of your sons records, and politely seek the opinion of another endocrinologist, even if you have to travel out of the area.  If the other doctor disagrees with your sons current treatment, and you feel more comfortable seeing the other doctor, transfer your sons care.

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Benjamins-mama
by on Jan. 15, 2012 at 10:54 PM

get another endocrinologist.  keeping him with the one who is doing more harm than good is ridiculous!

armylove2286
by on Jan. 15, 2012 at 10:57 PM

i'd get a 2nd,3rd,and 4th opinion elsewhere, it took me 3  pediatricians until i found one that would listen to my concerns and actually work with me 

Beyondthesky37
by on Jan. 15, 2012 at 10:58 PM

The problem is he's in the hospital so they regulate everything he eats.  He doesn't even want that much pediasure but since he has a feeding tube anything he doesn't take by mouth they just put in his tube.  They refuse to try anything different.  His Endocrinologist is gone until Tuesday but I plan on telling her again what I think and telling her look out how much worse his sugar levels are now and hope she'll listen to me if she doesn't I'm going to have to do something.  He has seizures from low sugar and his last one was 12 minutes I can't let them keep playing and wait for more seizures.

Quoting Alyssasmommy412:

Is there another drink like pedisure that doesn't have this aminio acid? I would just tell them t hat it makes him ill and your not going to give it to him and see if you can get regular food that he can eat into him. Good luck Mama



Beyondthesky37
by on Jan. 15, 2012 at 11:04 PM

The only thing is I don't know where to take him.  I was planning on calling his Pediatrician Tuesday after I talk to the Endocrinologist and seeing if she can refer us elsewhere.  I'm really about ready to pull him out of the hospital but I don't know what all that involves.  Plus I do need help in case of an emergency and don't want to burn all my bridges.

Quoting armylove2286:

i'd get a 2nd,3rd,and 4th opinion elsewhere, it took me 3  pediatricians until i found one that would listen to my concerns and actually work with me 


eema.gray
by on Jan. 15, 2012 at 11:15 PM

You need to find the nearest Children's Hospital.  If you need specialist referrals for insurance reasons, tell the current doctor you'd like a referral to Dr so and so for a second opinion (make the contact first so you know exactly who you want/intend to see).  If you don't need the referral and can just make specialist appointments directly, call the appropriate department(s) at a Children's and make appointments, then tell the current Dr you're taking your son to Dr so and so for a second opinion.  Make sure that the 2nd opinion Dr gets complete copies of your son's medical file BEFORE the appointment so they have full knowledge of what's been done to date.

Quoting Beyondthesky37:

The only thing is I don't know where to take him.  I was planning on calling his Pediatrician Tuesday after I talk to the Endocrinologist and seeing if she can refer us elsewhere.  I'm really about ready to pull him out of the hospital but I don't know what all that involves.  Plus I do need help in case of an emergency and don't want to burn all my bridges.

Quoting armylove2286:

i'd get a 2nd,3rd,and 4th opinion elsewhere, it took me 3  pediatricians until i found one that would listen to my concerns and actually work with me 



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allornone
by on Jan. 15, 2012 at 11:15 PM

Do you have a on call pediatric phone number for his normal pediatrician?  If he is having more seizures for longer times it should be dictated in his chart. Ask to see his chart If you see that they have this charted and they have enough documentation to prove it is the pediasure. I would see request for my son to be released. He is your son. You know him the best.  I am not saying the doctors do not know what they are doing but you have to listen to the voice that is telling you its not right.  If you have to travel to another city than I guess you  will have to. 

armylove2286
by on Jan. 15, 2012 at 11:15 PM

Hmmm research other endocrinologists around your area , do you have a medical college near you? i take my kids to uab in alabama for their asthma they get better care there, talk to the hospital or even your current Endo ask them to refer you to someone else for a 2nd opinion 

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