How do you handle it? Long(it has been building a while)

[canwegosoon]

I think I am at the point of being too worried about one of my twins. The first is totally heathy...no problems. The second twin has just been wracked with problems. First he had sleep-apnea(peditrician didn't believe me) thankfully ENT did- when he saw 85% blockage of the adnoids.

They both had reflux as babies which went away and then at 2 1/2 the same one with the apnea, started vomiting daily, if not multiple times a day. Called the Dr...don't worry..a year latter and ds has gained no weight and is actually thinner... still "don't worry". Same son comes down with pnemonia while I am away with him. See a DR downstate who says, you need to see these Dr's and have these tests run. Come home, ask Dr for referalls-NO. I am starting to loose it. I demand he be put on something for his reflux. Finally after another year of begging and plead with every Dr in the pratice I get a referal for upper GI/Barium swallow. Yep your son has reflux...no duh!! Ask for a Dr for referal to Ped. Gastronologist...there are none here. Call insurance..oh yeah there is one in your area. Demand a referal..and PG does a Endoscopy. Thankfully no lesions after almost 3 1/2 years of almost daily vomiting.

Final straw, after seeing the Ped. Gasteronologist, ds was put on a new medicine and all of a sudden started having allergic reaction...mouth, and hands swelling up...slight difficulty breathing. Call peditrician dr... switch his meds..starts having same reaction to 2nd med...go in to peditrician and have to beg -again- for a referal "I think he needs an allergist". Ok....(Dr. not too thrilled I can see). Take son to Allergist- "how long has you son had a HEART MURMUR"..What!!! You know what I am feeling I am sure...thankfully I do not own any weapons. Allergist turns to me and says, there is no way that these meds are causing this reaction. Keep a food diary and start Zurtyc(sp), and go for blood test too. Blood test comes back..."yeah your son is allergic to a lot". Keep him on the Zurtyc/nasalcort and pepsid AC for a while. 3 months of food diaries...no more reactions...must be enviromental.

Since starting the allergy meds the vomiting has stopped, can you believe it!!! Start searching for a new Peditrician. I am going to get a great one this time. Bring my son in one more time for a sick call to old pratice(with 6 dr's who have never helped me) to see if they were now going to mention that the Allergist found a murmur. Guess what-you're right-NO..I bet they didn't even read the report.

Fast forward...new peditrician...confirms the murmur. Wants son seen immeditally at Ped Cardiology group, and then wants to see him again asap. Also wants his ENT switched and will work closely with Ped Gastro. Son has bicuspid valve aortic...I knew it!!! Since day 1, he was a sweaty baby that pooled water at his feet...I think you must know that I asked his origional peditrician about 10 times to listen to his heart good.

Thankfully none of these things are lifethreating, like I know some of you have to deal with, but this son was in surgery 2 times!!! And was almost on Mission Space last year. Son will just be on anitbiotics for dental work, and I have to watch for infections. But Dr. says he should be able to live a fairly normal life(no military service though). Oh yeah, can you guess which one has 2 extra teeth in his pallett and needs oral surgery???

But how do you all get past the worry, and the pain for your child? In a way I wish it wasn't all on the one twin- or at least that the one did not have so many problems. I am thankful that I now know about these things, and that monitoring and treatments are available for several of his problems. He is catching up on his speech and reading defficets due to the reflux(and poorly developed pallet) I guess that's what happens when you are constantly vomiting. Do you all try to keep you mind busy with mundane, unimportant things just so you don't have to worry? I think that is why I have become a disney overplanner

I am sure many of you are better medical adovacates for your children...please say a prayer for me that I can do a better job at having resolutions and medical control over his case.

Any advice, suggestions, or prayers would really be appericated.
Terri

 

[Schmeck]

Terri, don't beat yourself up over this - you are a wonderful advocate for your son, or else you wouldn't have found the solutions to your son's problems!

I went through a similar situation with my youngest daughter - it took me 2 1/2 yrs of badgering the pediatrician to have her sent to an opthamologist. A few months later she had eye surgery, for a birth defect. At first, the pediatrician told me I just needed to stretch her neck muscles...

Prayers and white light being sent your way!

 

[Selket]

I think that is why I have become a disney overplanner

I'm very sorry for all your son has gone through but I got a chuckle when I saw that line. After my younger son was dx'd with diabetes at 26 months then had a severe allergic reaction to peanuts at 27 months I think I became one of those disney overplanners too - LOL! But it did help to have something enjoyable to be planning and I love planning trips to anywhere - especially WDW however.

I think now that the medical problems are known and once you get some time dealing with them the anxiety does become less and less. It can be very difficult to advocate for your child with doctors who insist nothing is wrong. My thyroid disorder was misdiagnosed for almost a year when I was a child (eventually the doctor told my mom I was just making it all up! ) I've read numerous accounts of parents with children who had developed type 1 diabetes and were very sick and the doctor sends them home with some antibiotics! The parents then bring them back within hours - or a day - and at that point some have needed life flights just to make it to the hospital before they passed away.

I hope you can find another pedi - that does make a big difference especially if you need referrals. I also have 2 sons (not twins) and the older is generally very healthy and my younger one seems to have everything (type 1 diabetes, asthma problems, food allergies, eczema, hypotonia and didn't walk until he was almost 2, etc). I've been fortunate not to have to hunt for supportive doctors.

Hang in there .....and isn't it about time to be planning another WDW trip?

 

[spiceycat]

I know you will be fine so will your son.

but write complaints about your ped - first to your insurance company, then the medical board.

if that doesn't work you can complaint to Insurance commissioner in your state about the lousy medical service your insurance makes you do.

so sorry you had to go though all this.

 

[Haley Whippet]

Terri,
You are a wonderful Mom, You foght for you son to get the best care, and never stopped till you found a doctor that would listen.
I hope your son is doing better now.
Deb

 

[MarieS]

Had to laugh about your line about being a "disney overplanner"! I hear ya!
Both of my boys are multiply disabled due a rare genetic problem( Long story!)It seems I get one problem straightened out and next here come another. Very challenging. You sound like a wonderful mom and you've done a great job in being persistent. I agree about a finding a new ped----I did the same and it was a big help. We have also dealt with reflux( can be very tricky), allergies( Zyrtec and Nasonex everyday really make a difference) and a late diagnosed heart murmur( mitral valve prolapse--though he had been checked by so many others--it was found by our pulmonologist). It can all be very frustrating. Hopefully things are on the right track for your son now.

I have found that I have to make time to do things to destress regularly--reading, scrapbooking, computer. I am also part of a mother's group for children with spedcial needs( it helps to have somewhere to vent or get advice) and we meet once a month for pie. I use to put all that on the back burner because I was so busy with the boys. However, I found I could be a better parent if I took just a little time for myself to recharge. Anyway, that's what has helped me.
Pixie dust to you!

 

[canwegosoon]

Thanks everyone for the good wishes ... to all the Disney Overplanners!!!

 

[steffali]

I think I am at the point of being too worried about one of my twins. The first is totally heathy...no problems. The second twin has just been wracked with problems. First he had sleep-apnea(peditrician didn't believe me) thankfully ENT did- when he saw 85% blockage of the adnoids.

They both had reflux as babies which went away and then at 2 1/2 the same one with the apnea, started vomiting daily, if not multiple times a day. Called the Dr...don't worry..a year latter and ds has gained no weight and is actually thinner... still "don't worry". Same son comes down with pnemonia while I am away with him. See a DR downstate who says, you need to see these Dr's and have these tests run. Come home, ask Dr for referalls-NO. I am starting to loose it. I demand he be put on something for his reflux. Finally after another year of begging and plead with every Dr in the pratice I get a referal for upper GI/Barium swallow. Yep your son has reflux...no duh!! Ask for a Dr for referal to Ped. Gastronologist...there are none here. Call insurance..oh yeah there is one in your area. Demand a referal..and PG does a Endoscopy. Thankfully no lesions after almost 3 1/2 years of almost daily vomiting.

Final straw, after seeing the Ped. Gasteronologist, ds was put on a new medicine and all of a sudden started having allergic reaction...mouth, and hands swelling up...slight difficulty breathing. Call peditrician dr... switch his meds..starts having same reaction to 2nd med...go in to peditrician and have to beg -again- for a referal "I think he needs an allergist". Ok....(Dr. not too thrilled I can see). Take son to Allergist- "how long has you son had a HEART MURMUR"..What!!! You know what I am feeling I am sure...thankfully I do not own any weapons. Allergist turns to me and says, there is no way that these meds are causing this reaction. Keep a food diary and start Zurtyc(sp), and go for blood test too. Blood test comes back..."yeah your son is allergic to a lot". Keep him on the Zurtyc/nasalcort and pepsid AC for a while. 3 months of food diaries...no more reactions...must be enviromental.

Since starting the allergy meds the vomiting has stopped, can you believe it!!! Start searching for a new Peditrician. I am going to get a great one this time. Bring my son in one more time for a sick call to old pratice(with 6 dr's who have never helped me) to see if they were now going to mention that the Allergist found a murmur. Guess what-you're right-NO..I bet they didn't even read the report.

Fast forward...new peditrician...confirms the murmur. Wants son seen immeditally at Ped Cardiology group, and then wants to see him again asap. Also wants his ENT switched and will work closely with Ped Gastro. Son has bicuspid valve aortic...I knew it!!! Since day 1, he was a sweaty baby that pooled water at his feet...I think you must know that I asked his origional peditrician about 10 times to listen to his heart good.

Thankfully none of these things are lifethreating, like I know some of you have to deal with, but this son was in surgery 2 times!!! And was almost on Mission Space last year. Son will just be on anitbiotics for dental work, and I have to watch for infections. But Dr. says he should be able to live a fairly normal life(no military service though). Oh yeah, can you guess which one has 2 extra teeth in his pallett and needs oral surgery???

But how do you all get past the worry, and the pain for your child? In a way I wish it wasn't all on the one twin- or at least that the one did not have so many problems. I am thankful that I now know about these things, and that monitoring and treatments are available for several of his problems. He is catching up on his speech and reading defficets due to the reflux(and poorly developed pallet) I guess that's what happens when you are constantly vomiting. Do you all try to keep you mind busy with mundane, unimportant things just so you don't have to worry? I think that is why I have become a disney overplanner

I am sure many of you are better medical adovacates for your children...please say a prayer for me that I can do a better job at having resolutions and medical control over his case.

Any advice, suggestions, or prayers would really be appericated.
Terri

I am sorry to hear all of that about your son. I was happy that you said you were finding a new Ped. My daughter has multiple disabilities and we have used a "high risk" Ped. I beleive that makes a big difference. By the way what part of NY are you from?
Well, Good Luck to you and your family

 

[canwegosoon]

I am sorry to hear all of that about your son. I was happy that you said you were finding a new Ped. My daughter has multiple disabilities and we have used a "high risk" Ped. I beleive that makes a big difference. By the way what part of NY are you from?
Well, Good Luck to you and your family

Steffali-I am origionally from LI(born in Smithtown and moved to Hampton Bays at 6yo), but I have lived upstate in the Albany area for almost 15 years(can't believe that). We are currently living in Loudonville. I still go to LI since all our family is there. We will ge flying out of JFK for or Dec. Trip and LAG for our March trip. Are you near me?
Terri

 

[steffali]

Steffali-I am origionally from LI(born in Smithtown and moved to Hampton Bays at 6yo), but I have lived upstate in the Albany area for almost 15 years(can't believe that). We are currently living in Loudonville. I still go to LI since all our family is there. We will ge flying out of JFK for or Dec. Trip and LAG for our March trip. Are you near me?
Terri

I am in LI now (Rockville Centre area) but when my DD graduates from school we are considering moving to the Buffalo area where my DH was born and raised. I am a little nervous as to what programs,hospitals Dr.'s etc. they have up there for my daughter so it will depend on that .

 

[canwegosoon]

I am in LI now (Rockville Centre area) but when my DD graduates from school we are considering moving to the Buffalo area where my DH was born and raised. I am a little nervous as to what programs,hospitals Dr.'s etc. they have up there for my daughter so it will depend on that .

I have 2 cousins that live in Douglaston. NYC is so much more agressive than other parts of NY(the Dr I saw during my son's pneumonia, was in Southampton and NYC-she was great). Buffalo is a big city and I would think that there are some better Dr's. You could always ask your current Dr's for referals...they might know someone from Medical School or another Hospital that is now in that area. But I totally agree it will not be easy. Good Luck. I think there is a University Hospital there, so you might have some agressive medical care through the hospital. That's what ended up happening with me...my son's new peditrician (who has already been 200times more helpful) is part of Albany Medical Center's Pediatric Office(our University Hospital). His Allergist is also through the same Hospital, and the Ped's Cardiology was too, but recently went out on their own.

 

[michelle9343]

I am also a "Disney overplanner" I call it my therapy! I have been going through a similar problem with mt DD. I amazes me how little some Dr care and how so many do not want to hear what Mom thinks. Hang in there.Finding a new Ped who cares is huge. Keep up the GREAT work !!

 

[Cheshire Figment]

I definitely agree with Spiceycat. I would write a detailed summary of what happened and name names! Send it both to the complaint office at your insurance and to the state Medicalk Board. It sound at the very least that the doctor who was your former pediatrician is incompetant and should possibly have disciplinary action taken. As far as the others in the group, their problem is they relied too much on the opinion of one of their partners and wanted to believe him more than the facts.

 

[debbiemomto4]

So sorry to hear what your ds goes through but it's great he has a mom in his court! I always try to tell new moms just follow your instinct and keep speaking up and keep a log. A chuckle about the disney overplanners. We just got home and my oldest dd was amazed I hadn't had dining plans for a day and I told her we were just going to see what was happening that day. She was amazed I was so laxed on that day.

 

[Darian]

Hi canwegosoon, you sound like a great mom! Kudos to you for not giving in and giving up to the medical establishment and pushing on to get good care for your DS. Your situation is not as rare as one might think. This whole "nothing is wrong... just go away" attitude from doctors & insurance companies has become endemic.

My DW has been a good advocate for me, as you have been for your DS. I get so sick of being lied to, ignored, treated as being crazy, abused and treated with contempt by the insurance companies, doctor office staff, some nurses and even doctors. I remember how after my first open heart surgery, my "nurse" started taking MY morphine shots and then lyiing about it. Fortunately my DW was there in my room the previous 4 hours and KNEW I didn't get the shot. She got a hold of the hospital administrator and kicked his hiney till it was black and blue. After that I got all my pain meds. I can also relate to your struggle getting referrals and accurate diagnosis of illnesses and fighting to get the correct meds. There is a special place in Hell for HMO "care" representatives.

Keep up the good work canwegosoon. With you taking care of your DS, and kickin' some doctor hiney, I'm sure your DS will be fine. My prayers are with you and your family.