[outnumbered]

Hello again.

I posted the ? about blood tests and biopsy regarding my 6 year old niece, currentlya patient at a childre's hospital in Grand Rapids, MI. http://www.thelupussite.com/forum/showthread.php?t=69893

I spoke with my sister earlier this evening and she told me that her daughter is on four diff. kinds of meds; high blood pressure – no name (Doc says might need to take meds for life as people with Lupus have high blood pressure)
Corticosteroids – medicine for kidneys
Iron – anemic
Shot once a week for low white blood cells
Med in IV to help push the water out of her body – stomach is only thing swollen still

Is all that really necessary?

 

[Lily]

Hi there,

I read your post in Tech and Test and I'm very sorry to hear about your neice I've moved your post to the Medications section of our site because you will probably get more response here.

It sounds like a very normal med regime for someone (even a child) who has only 20% kidney function at the moment. As much as you are both probably thinking of her age and the necessity of these meds

When kidneys aren't functioning well blood pressure can go very high, then there is a risk of stroke etc. so the BP meds are well needed by the sound of it.

The corticosteroids are usually the first thing they would do to get inflammation down and are used in Lupus and other autoimmune diseases and they should bring about a rather quick response - they are not ideal as a long term solution but right now would probably be classed as life saving. As the doctor said they may need to add other more lupus specific medications such as an immunosuppressant which will possibly negate the need for Corticosteroids or at least enable a lowering of the dose.

The anemia needs to be treated, if someone is severely anemic it can affect their heart and even lead to seizures.

Badly functioning kidneys mean a lot of fluid retention and it's good that this is also being addressed. As the inflammation comes down and things settle down a bit for her she may not need it any more.

In fact once they pin down the cause and get her on the right disease modifying meds then it is the disease they will treat rather than the symptoms arising from it.

Hope this helps and our best and kindest regards to your sister and her little daughter.

love
Lily

 

[SoCalEric]

As Lilly said, it doesn't sound abnormal at all. When I've had Nephritis troubles I've been on many meds. Usually a few for Blood Press. (it gets VERY high), Lasix for water retention, Prednisone, Klor-con (to counteract troubles caused by the Lasix). I remember having some pills with food, some without, some twice a day, some three times a day....just keeping track of it all was a full time job! I'm doing pretty well these days and still take a BP med, 5mg of Prednisone, Warfarin (blood "thinner" due to clot troubles), a med for high colestrol, and some allergy stuff. I've undergone chemo (w/Cytoxan) to treat the Nephritis, it worked wonders.
Keep us informed. So very sorry to hear of a child so young having troubles.

Eric

 

[Katharine]

Hello there,

Yes indeed, it may seem like a lot, but that all sounds perfectly normal.

Unfortunately these meds really are essential. It is also important to remember that treatment nowadays is usually a fine balance of meds which are adapted as individually as possible to the person rather than very high doses of one medication.

I really hope that your niece feels much better soon,
hugs to you both and her Mum,
:hug:

Katharine

 

[Jirel]

I am on 14 different perscriptions. For each one, I know what it does and can tell you what would happen if I were taken off of it. None of them are redundant and the closes thing to pills for symptomes to pills is the fact that I had to increase my blood pressure and diabetes medication because of the steroid, I was already on the medication before taking the steroids.

So four medications is really not bad. Just know what each one does and why she is taking them and that will help keep them as few as possible.

 

[Raglet]

hi there

I agree with whoever said that being on 4 meds is not a lot compared with many people with lupus - but, having said that, I certainly would have hated to have my daughter (or niece) on all those meds when was so small and really should just be out the back playing in the yard with her friends !

It sounds like you have a good understanding of why she needs to take all the different meds, and that is very important. The doctors will be trying to improve her kidney function, and especially seeing she has so much life ahead of her then that obviously is very important.

Poor mite, she is so lucky to have such a concerned aunt as you ! Seeing lupus is a systemic disease, it means that we often need to take a whole bunch of meds depending on which part of our bodies is being affected.

Best wishes to you, your sister, and of course to the little one, I hope she gets better very soon

raglet

 

[outnumbered]

Thank you so much for your replies.

My sister and her daughter mean a lot to me. I want to just drop everything and drive there (I'm in NE Ohio) but I have three children of my own and can't leave. My sister and niece are have been alone at the hospital since Saturday.

I, personally, rarely take any form of medication and I'm worried about side effects for my niece. I'm also worked up over the fact that the doc says it's Lupus when he's not done with all his tests. He didn't say it might be, or the possibility is there, he said it is Lupus. Then why take so much more blood and run so many more tests if he knows what it is? Why can't he let them come home with a strict regime for Lupus and then carry on with a doc that lives closer? They are looking to be discharged tomorrow, and then this doc wants to see her again the following week.

 

[Katharine]

Hello again,

The thing to remember is that unfortunately lupus is a serious disease, and none the less so in children.

We are all subjected to constant and significant testing which is necessary to monitor what's going on and to avoid complications.

Specialist lupus doctors are quite thin on the ground and this doctor will want to see her again to ensure that everything is alright. It is not a simple case of prescribing meds and packing patients on their way. It often takes a very long to get the medication regime for patients right. GPs are generally far too inexperienced to treat lupus patients of any kind, never mind young children.

It sounds like your niece is getting very good care and unfortunately she will need careful monitoring and medication. This disease is not a blip and it is serious.

give her plenty of hugs from us all when you see her

Katharine

 

[Joandublin]

Hi there

Im really sorry to hear about your little niece. You must all be so frantic with worry. I read your first post and you mentioned that a biopsy had been done and that this 'screamed lupus'. Im afraid that a biopsy is certainly one way of confirming the disease along with, Im sure, the initial bloods they ran.

There is a myriad of blood tests which they will want to run and need to check on a regular basis. There are specific antibodies relating to Lupus as well as other connective tissue diseases which they will want to investigate. Sometimes Lupus comes along with other CTD's and its important that they get an idea of what is going on with your niece's immune system.

Its the way the disease can manifest itself that makes it difficult and complicated to monitor. Because Lupus is a systemic disease it can affect any part of the body and its important to find out what is going on and 'hit' things at an early stage with medication.

I have been diagnosed now about three years and everytime I go to see my specialist, my treatment regime changes a bit. So you can see it can take a while to get things stable. Even then there still may be changes (hopefully less medication). Unfortunately Lupus is not a simple disease. It will need specialist care and monitoring particularly in a child so young.

I can understand your frustration and the need to just get things back to 'normal' but unfortunately its not like that. Your niece will need a lot of ongoing specialist care, particularly for her kidney disease at this point. Im sorry if thats not what you wanted to hear. Im just trying to be realistic given the circumstances you described.

If you or your sister need any support, advice or guidance please dont hesitate to ask and we will help all we can.

Take good care for now and let us know how she is doing
Joan:rose:

 

[Maia]

I think putting her in the hospital to attend to her kidney disease quickly was absolutely the right thing to do. You can always ask your sister to obtain copies of all the testing done in the hospital including biopsy results before they leave. They can then take this information to another doctor for a second opinion when she is more stable, especially if there continues to be any questions about her diagnosis or treatment by her family in particular.

The human body is really quite incredible, and able to hand a number of medications and chemicals and even contaminants and quickly escort it all out of the body with no harm. You always have to keep in mind the risks and the benefits of having the medication and NOT having the medication. Kidneys are vitally important - they're worth four or more medications to get them better again.

The real key will be what is truly ultimately diagnosed and how that will be treated. A second opinion is always a great idea - especially with a well respected specialist. Good luck - glad to hear she should be out of the hospital tomorrow!

 

[raggedyann1]

Outnumbered,

Its hard to have a little one so ill. What the doctors have found in recent years is to be aggressive up front and then back off as they can. Probably the very best place for your niece right now is in the hospital. I imagine once they get her edema down they can send her home with medication for the edema. I take such a medication.

I was like you before I came out of remission 5 years ago. I avoided medication as much as possible. My current list is 20 of which 15 are constant medications. I keep a chart of all my meds, why I take them and who prescribes them for me. I am unusual to have so many meds but I have overlapping conditions that require so many. I would rather take all my medications and get out of bed everyday versus take as few as possible and be bed-ridden. Lupus is not a disease that can be managed with alternative medications although some are used along with our regular meds.

Thank you for taking your time to look up so much for your Sister and Niece. It shows how much you love and care about them.

Take care,
Karen

 

[mysharonna]

Hi outnumbered,

Sending thoughts and prayers your way for your niece and family. It is so scary to have a little one so ill, especially since you are far away from them right now. A biopsy is generally a good disease indicator, I too was diagnosed from a biopsy a few years ago.

As much as we all hate to take meds, it will help get your niece out of this difficult time so that they can begin to formulate a long term treatment plan for her. Once she is stabilized, maybe she will require less meds...maybe more.. but most important is to keep disease activity low.

I hope she is feeling better soon. Keep us posted-
Sharon