Just starting out - 4 year old

[nicnicsmom]

Hi guys! Nic's mom here. Really have appreciated this site! Wow - so much to say and so little space...lol. Let's see: Nic is 4 1\2 and we've been fighting problems since birth. Sick every two weeks with upper resp. or sinus infection; two ENT surgeries at 16 months to remove super enlarged adenoids, laser through a solid impacted nose, and bi tubes; low functioning gamma globulins; non-clotting blood; 2 (maybe 3 pneumonias) (no IVIG - was waiting on one more case of pneu); high end autism diagnosis (Pervasive Developmental Disorder) and ADHD; fine motor, gross motor delays; pneumoccocal vaccine resistant and penicillin resistant; resistant to almost all adult and pedi antibiotics to fight strep pneumonia; bruises easy and wounds just don't like to heal.....*then* we had a good year....things were not so crisis oriented...when he fell and skinned his knee. No biggie, until a week later when this ugly raised edge thing appeared with yellow goo. Took him to ER who said it was staph or cellulitis. Put us on (get this) 140 ml of Bactrim 2x day for 5 days. It heals a little bit then stops into this ring thing. The ER noticed that his neck was swollen - thought it was thyroid. Followed up with pedi...who said it was soft and to get labs later. Sunday Nic starts choking on a shrimp and we notice that his tonsils are so large they've almost closed off his airway. Now his neck is like an intertube - all swollen. We go back to ER, who admits us, only to discharge us to go see an ENT who says "those have to come out" and "those are swollen lymph nodes, not thyroid, but they're soft." I say "okay..how is it that he was on so much antibiotics and we have this?" "I dunno" We have surgery, neck is a little better. We follow up with immunology (old appointment) who does labs and says "what's that red rash on his cheeks and across his nose?" I said I guess he got too much sun...it looks all strange with that white under it...and he has this rash on his chin and forehead.... ANA came back positive, RF negative. Doc said "so what's your concern?" "Why was he on that much antibiotics (including antibiotics after surgery and before appt) and we have enlarged tonsils and lymph nodes...and no healing?" We don't have an answer for that yet. Of course, all the immuno tests they did came back fine....lol

Other than complaining about his legs hurting there's no joint swelling that I can see.

So I have a 4 1\2 year old, positive ANA, malar rash, maybe a discoid thing, neuro\psych problems, sun sensitivity, immune problems (btw: new gamma glob tests came back fine as did all other broad immuno tests); white patches in the back of his mouth and gums... and am having trouble getting a referral in Houston or Dallas. PCP referral nurse told me doc was out for a week, to go do it myself..and said that her office "will not do referrals out of Houston" (I want to go see Dr. Punaro at Shriner's).

Anywhoo...I apologize about the length, and honestly I don't have a clue if it is lupus...but at this point I'll take lupus over lymphoma any day...or at least an answer. Is there anyone who knows of other cases or sites for kids this young? Any other parents of young kids here? Thanks for listening

[peonyprincess]

HI Nic's mom..................I am Madi's mom. Madi was recently diagnosed with Lupus. She is 9 yrs old and is definatley having issues with the problems Lupus can cause. Add to the fact that I also h ave Lupus and our household is quite interesting. I have heard of children being diagnosed quite early. Is there an advantage, I am sure there is. One that I know is that the child can get the medication and get some much needed relief. As for putting the disease into remission...who knows.

I wish you and Mr. Nic all the best and hopefully you will get some answers. Until then, keep your head up.


Nancy

[Lily]

Hi nicsmom and welcome style_emoticons/<#EMO_DIR#>/smile.gif

I'm sorry your little man has so much going on, my goodness style_emoticons/<#EMO_DIR#>/hugbetter.gif

I note that you had seen an Immunologist? Do you know what immunological tests were run exactly? Did they do all his complement levels as well as all his IgG's and subclasses?

love
Lily

[nicnicsmom]

Thanks a lot Nancy. Appreciate the encouragement.... and my best wishes for you and yours. Wish I knew where to find the very early diagnosed.

Thanks again!



Hi Lily!

We've now seen two immunologists - one at 2 years, one at 4 years. At two, all they told me was they checked his Ig's, and here's exactly what he said:

Pretend Nic has a basketball team. All of the members of his basketball team are there, but none of them can shoot, throw, dribble, or pass. If he had had one of them missing, he would have been severe combined.

Immunologist no 2 re-ran his IgG's and said they were fine. He didn't list the other tests, but said they were "all fine." All he said is that is ANA was positive. I called later for the titers and they said there "wasn't one listed...just positive"

I don't understand why if all of his immuno labs were "fine" why his wounds take forever to heal ,he still has antibiotic immunities, and he has enormous tonsils and enlarged lymph nodes

I know - not very helpful, but thanks for the hugs!

~nic's mom

<div class='quotetop'>QUOTE(Lily @ Jun 21 2006, 12:34 AM) Quoted post</div><div class='quotemain'>
Hi nicsmom and welcome style_emoticons/<#EMO_DIR#>/smile.gif

I'm sorry your little man has so much going on, my goodness style_emoticons/<#EMO_DIR#>/hugbetter.gif

I note that you had seen an Immunologist? Do you know what immunological tests were run exactly? Did they do all his complement levels as well as all his IgG's and subclasses?

love
Lily
[/b][/quote]

[Lily]

Oh dear, if it was my child then I'd be really interested (well insisting really) that I get a copy of the actual test results. To see what was run, and what, if any, abnormalities there were. From there I'd be trying to educate myself a little on what they mean, there are loads of sites on the net that can help determine various things that abnormal tests results might mean. And I would want to know what those possibilities were - NEVER accept that tests are fine when clearly something is going on. Sometimes without repeat regular visits then we dont get anywhere. If there is an autoimmune possibility then tests can change, and small abnormalities can add up over time. The 'small' abnormality may not mean much on its own, but the big picture (bloods and symptoms) can lead to answers. Follow-up is everything with immune system disorders.

I wish you luck and persistence, it sounds like they will be needed to get to the bottom of this. But if you are like me then you would walk across hot coals for your son a thousand times to try and discover if its all just a series of unfortunate events or if there is an actual autoimmune disease at the heart of it. Trust your instincts style_emoticons/<#EMO_DIR#>/smile.gif

love
Lily

[nicnicsmom]

Great advice, Lily, and thanks.

Well, I started on the road to getting that information today. At least I have his ANA titers... 1:1280. I'm guessing that's why everyone was calling me? lol One Pedi clinic is going to see if they can pull up the labs on line and have a copy for me to pick up tomorrow. I'm hoping the results will tell me what kind of pattern it is.

Thanks again for the support and advice

~Nic's mom

[raggedyann1]

Nic's mom,

In the USA you have a legal right to copies of ALL of your son's medical records. I will also tell you that according to Dr. Wallace the author of The Lupus Book. An ana titer of 1:1280 means there is definitely a connective tissue disease present. While you have everybody jumping through hoops insist on the doctor you want to see at Shriners. You should have plenty of leverage right now. How long ago were the blood tests that included the ana result? The longer ago the more you can scream. IMO.

Seriously with HMO's you can get what you want but you have to be your own advocate. You have to go higher up the food chain in the beaurocracy till you get someone with medical training. At each level ask the name of their supervisor and keep going.
I am assuming you want the doctor at shriners because he deals with pediatric lupus? Make sure you to google him if you haven't to see what research papers he has written.

Hope to see you in chat again soon.

Take care,
karen