Wisdom in this situation

[Anon]

Most of you probably know that my 2 1/2 yr old son has had constant hives since early July. So far nothing has showed up wrong with him whatsoever, yet the medicines are not doing a real great job keeping them at bay. He is on a short course of steriods but they only keep most of the hives away during treatment and they come back afterwards...plus steriods aren't that safe. The drs have a few more tests they can do but pretty much they have no clue. He probably should be tested for autoimmune/autoreactive urticaria (hives) but not sure if these particular drs will be doing that on a toddler.

There is a dr well known for his research in chronic hives, and he is in Charleston, SC. I have learned through an email group that he is absolutely the best in this field. I found his email and sent him information about our son and he has said that I can consult with him and that I would just have to do airfare and a consult fee but that the prescriptions would be fine to take back home. The problem is that he retires at the end of the year and cannot take new patients after December 10, so we would have to make a sort of fast decision.

My son has a visit with a new dermatologist next week. So far any testings from the allergist have come back negative, and we have a few "long shot" tests waiting in the wings. The dr whom I wrote feels the dermatologist will not find too much in a skin biopsy, which is what he will probably get next week. If nobody finds anything in the next couple weeks then nobody knows what's wrong with my little guy...and poor thing he gets so itchy!

Please pray for wisdom. I would prefer to wait a few more months before doing this type of travel and spending this type of money (of course we have already spent $500 in dr and Rx copays in the past three months) but I do have a mother in law who lives in Greenville so I would have someone to stay with and help me out (of course it might be better just to go straight to Charleston). I'd also have to take my baby with me as well so that would add a bit of struggle (taking a newborn and 2 yo on a plane by myself!!!). Anyway like I said I'd prefer to wait and see for awhile but in this case the dr. is retiring and will no longer be available.

So please help us pray for wisdom....if we should make a fast decision like this and just do it, or if we should wait and try to continue to find help here in our local area. I realize this isn't cancer or anything but it IS quite itchy, he IS on quite a few meds, and nobody here seems real familiar with this in very young children. Plus I need to somehow find out if this is temporary, or something permanent we are going to have to learn to deal with.

(Please no suggestions on what it might be or treatment options, believe me we have climbed every tree in the forest when it comes to that.)

Thanks so much for your prayers...I just got the email tonight and I need to find out what the consult fee will actually be, and then go from there. If its affordable we are very tempted to just go for this but we also need to make sure its the right decision.

[churchmouse7]

I will be praying for you.


In Christ

[Psalms18_28]

my son has chronic ezcema, he is itchy 24/7 a week. He would be doing his homework, scratch-scratch-scratch every 10 sec., goes back his homework. Praying for you. I know how itchy hives are, I get them myself (especially when I touch my cat).

Praying for you, who knows, taking him somewhere else may help you realize it might be something in the enivronment.

[Bakershalfdozen]

Poor little guy. :sad I will pray you get this figured out soon.

[Colin Stolzer]

Perhaps the Dr. in charlston has trained somebody else during his years and can refer you to someone he trusts, just a thought. Sorry to hear about chronic illness in such a young child. I pray that the Lord will work it out for you.

C

Edited for spelling.

[LAF]

Praying

[Anon]

Well I got the costs and my husband says we do not need to put out all that money when we could just wait for the testing to finish here, and then maybe get referred to a better specialist in Philadelphia associated with one of the universities or with the Children's Hospital. I guess he's right, I'm just so anxious to find out what's the matter. Oh well. That answers that question!

My main fear is that its something autoimmune, and while they have tested for actual autoimmune diseases, they have not checked yet for actual autoimmune urticaria (hives). My allergist says she doesn't do that on children. However if nothing else shows up I may try to push for that. We also haven't seen a good dermatologist yet (the first one didn't do ANY thing for us) so maybe that will shed some light on things as well. I hope so.

While hives in children is common, and even chronic hives is common, usually drugs are very capable of controlling them. The problem with my son is that he is on alot of medicines and they still aren't controlling them very well. The drs say that while hives are common, it is relatively unusual that a two year old would have a case so resistant to treatment.

I just want to find out the cause. Whatever it is...even if its some lifelong disease or whatever, I really want to know what we are dealing with here. I've been trying to fiddle with his diet but its hard to tell if its working or not. Right now I am just trying to avoid preservatives and dyes, (making everything completely homemade except a few snack crackers and plain Cheerios) but after that its kind of hard to pinpoint what else to avoid, especially since his main food allergy tests came back negative. (Dairy, Wheat, Eggs, Soy, and Apples, only tested because he eats them often). Everybody has something else that you shouldn't eat because they can cause hives and I can't exactly take everything out of a two year old's diet, so we are doing the best we can in that arena. The hives never completely go away so while I think some foods may aggravate them, I do not think food is the ultimate cause of them.

[dwayner79]

I have done the drive to Charleston in a day from South Jersey (way too many times ). I also have many good Christian friends in Charleston (spent 5 years there) who could put you up. If Charleston is still an option, then I am sure I can help work something out.

BTW, who is the Doc? I may know him/her.

[Anon]

I have done the drive to Charleston in a day from South Jersey (way too many times ). I also have many good Christian friends in Charleston (spent 5 years there) who could put you up. If Charleston is still an option, then I am sure I can help work something out.

BTW, who is the Doc? I may know him/her.

He is Dr. Allen Kaplan...supposedly a world renown expert in hives.

[Anon]

I have done the drive to Charleston in a day from South Jersey (way too many times ). I also have many good Christian friends in Charleston (spent 5 years there) who could put you up. If Charleston is still an option, then I am sure I can help work something out.

BTW, who is the Doc? I may know him/her.

I talked to my husband and he said he doesn't like the pressure of having to do it *now* and he said we need to wait and exhaust resources here before doing all kind of traveling. Anyway he says with the best children's hospital in the nation here in Philadelphia there HAS to be somebody who can help us more locally.

I'm sure he's probably right, I'm just impatient. :smile But I know that when wives argue and get their way, usually it goes way wrong so I will trust God and my husband and I'm sure everything will work out just fine.

Thanks for the great offer though of help!

(I can't believe I actually used to live in South Carolina...didn't need him then, though!)

[dwayner79]

I looked up Kaplan... I do not know him, but MUSC rivals CHoP... though the child specialists in Philly are tops. My dad was a VP at Philadelphia Hospital, so I have a bit of hobby of watching that industry. Of all the places to be, Philly is pretty good.

Funny about the arguing wife thing...

Tell DH that the offer is there if you need it. I prayed for the little one.

[Anon]

I looked up Kaplan... I do not know him, but MUSC rivals CHoP... though the child specialists in Philly are tops. My dad was a VP at Philadelphia Hospital, so I have a bit of hobby of watching that industry. Of all the places to be, Philly is pretty good.

Funny about the arguing wife thing...

Tell DH that the offer is there if you need it. I prayed for the little one.

Thanks! I let him know, and we appreciate it, but he figures that money could be used up here just as well and there are plenty of drs to choose from. (We are at drs in the suburbs right now, nowhere near the children's hospitals.) Of course I'd love to have him go down there to SC and get all the questions answered within a day, but then that's alot of money to put down (about the same amount in one shot as its been for everything including meds in three months, and that doesnt count travel costs) and technically there is no 100% guarantee the dr will be able to diagnose him.

My husband also says that Dr. Kaplan can't possibly be the only one who knows hives..he said he may be world renown but that after he dies there will have to be a next "world renown" to take his place. haha. He said "Maybe that person is in Philly."

I did look up a bit online (didn't have time to do extensive searching) and there seems to be a dermatologist associated with U of P that has written an article or two on urticaria so I'll keep that in mind.

[John81]

Praying for your son, you and your husband, and for the answers you need and that the Lord would guide you clearly to where you may find the help needed. :pray

[Psalms18_28]

kitagrl, I agree with your husband. When mom had cancer, we wanted to take her to the best doctor. So we took a trip to Nashville, TN. It turned out that he was no different than the doctor she had because He wanted to treat her the same way as her doctor in Roanoke did. If the doctor in SC seem to be the best, it is because he knows how to do his research, and he will share it with other doctors.

Right now, We happened to have the best allergist in VA (but really, we just choose him without knowing he was one of the best) and I found out that what make him the best is that he knows how to do researches,medical researches, not your average "internet" research. I asked him about Elidel and if it causes cancer, and he told me that he researched it since he doesn't want anyone to have cancer, and he said that wearing sunblock while my son have eczema cream.... any cream, it doesn't matter which.... prevents him from having skin cancer (it is like how some medicines make you more prone to sunburn).

[Anon]

Yeah...and actually I just got an email from the urticaria email group I'm in and its an 11 yr old girl being treated by that dr...and while he was able to diagnose her problem, the treatment is still the same as my son...giving antihistamines to keep her comfortable! So really I guess spending all that money wouldn't get me much closer to a cure, because if his condition is permanent, being told its permanent won't change much especially at his age...because the immunuo-suppressant drugs they use on older people for bad cases of hives aren't used, of course, on young children.