4 year old with ? tachy-brady

[momtofourboys]

I have a 4 year old son who has a lenghty cardac history. (had a Large VSD, Small PFO and a PDA Ligation all repaired when he was 3months old) CURRENTLY HE HAS A PFO, RBBB, BIDIRECTIONTIAL SHUNTING, MILD INFUNDIBUALR STENOSIS, PECTUS EX ASTHMA  and SOME SORT OF STRIDOR COMING FROM HIS THROAT. He did have a RVOTO that is not there now that disappeared with in 2 weeks after having it for 3 years. so I am not sure what to think. Astham doctor said his asthma is stable
Chris turns blue in the bath tub is short of breath.when walking or running.
his heart rate varies so much On Tuesday evening he was grey and blue. I took his Sats they were 88, and his HR was 110. he didn't appear to be in any distress (like retracting or flaring or grunting) I continued to monitor him. he went very limp on me, don't think he passed out but very close and his heart rate was 48 and Sats were 86. after a few seconds he came around with in 5 minutes he had his color back and said my heart is in my throat and I can feel it (pointing to his chest) I don't like this he said. I checked him (he has complained of this before and chest pain as well, not at the same time and I didn't have a sat monitor) so when I checked him his HR was 181 and his Sats were good 96. I took a picture to show his cardiac doctor  and I brought it to show his PCP and they listned to his heart for a while. they called his cardiac doctor and I was made to run him up the the hospital for a holter monitor. his PCP told me he could hear him having some sort of an arrthymia and he needs to go now.
Could this be tachy brady. what is the next step to do if the holter monitor doesn't show anything which I am not too hopeful it is. he wasn't symptomatic. this does happen qutie ofter, but not every day. the EVENT monitor he is suppose to be on won't fit his chest due to his Pectus EX
His Cardiac doctor isn't too helpful either and I don't have the financial means to go elsewhere
Michelle

[Michael J. McWilliams, M.D.]

With these medical problems, you son should be on medicaid.  Finances should not be an issue.  He needs to see doctor that specializes in congenital heart disease in children.  I do not have experiences with cases like this -- I am trained with adults only.  Are you near any academics centers?  They are probably the best place to start.

[ibbrave]

I am truely sorry to here about your situation. I hope and pray things turn out good for your son and your family.

[LukeL]

Also just to add, often hospitals will let a parent order food for their "kid" and it will be charged to your insurance. So the only issue should be gas which you may be able to get a debit card for through the county. All of this along with tax write offs should help your financial situation tremendously.

As you have NF (saw your profile) you may want to look into Noonan syndrome as it is realted to NF and many patients have a NF/Noonan like disease (doesn't fit into either category) and Noonan syndrome has a high rate of heart defects.

The reason I know all this is I to have NF with another disease which is realted to NF. A lot of research is being done in this area and it may be worth noting. (not trying to increase your worry, but often having a reason for a sickness (or name of a disease) can be of some relife .

[LukeL]

By chance do you have NF? There are charities and organizations which can help you out. Ronald McDondal House is one of them which provide free lodging for parents when their children are in the hospital. A childrens hospital or ward should allow parents to spend the  night and may  even have a quiet room just for yourself.

If your son has a social worker he or she should be able to get you in touch with the right people to get you signed up for these programs.  If not call your local deaprtment of social services

[Michael J. McWilliams, M.D.]

I am sorry to hear that Michelle, I wish you and your family the best.

[momtofourboys]

It Is not the medical bills that are the issues, the insurance pays for that. it is the $$ for the trip down there the $$ for ga, food and a place to stay. I don't work due to have tumors from a disease and my husband works to support 6 people. If $$ wasn't an issue to cover the trip then I would be else where in a heart beat. (no pun intended)
Michelle

[LukeL]

If you live in Vermont you should be able to find a teaching hospital or university hospital somewhere in the northeast. Johns Hopkins is excellent and I assume Harvard is too. Harvard would be a quick trip from Vermont. If you have a private insurance along with medicaid his bills should be covered 100%.

In Wisconsin there was something called the Katy Beckett Program which was part of medicaid and given to children with illness which are deemed terminal or have a high likelyhood of producing significant morbidity and/or mortality, I am sure vermont has sonmething like this as well.

[Michael J. McWilliams, M.D.]

If you have primary and secondary insurance, why are the medical bills high?  I would have thought that would cover it.

An academic center is a university hospital like Johns Hopkins, University of Pittsburgh Med center, Harvard, etc.  They tend to have pediatric cardiologist and sometimes even pediatric heart rhythm specialists.

[momtofourboys]

I have to be honest I have no ideas what an academic center is? is that the same thing as clinical hospitals? Yes he has Cigna and Medicaid, the medical bills are the issue, it is the cost of getting to another place we are a family of 6 with just one income due to the fact of Chris being in and out of the hopsital so many times and the medical issues I have.
I am sorry to ahve bothered you I wan't sure who was and who was not a pediactir doctor
it amazes me how much a child's body functions differently then an adults
thank anyways
Michelle