Vascular Birthmarks Foundation Forum

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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   New to Lymphagioma-9month old baby girl-advice please? (http://birthmark.org/board/showthread.php?t=3747)

Aolmstead 03-15-2010 11:07 PM

New to Lymphagioma-9month old baby girl-advice please?
 
I live in Vegas and gave birth to a normal healthy baby girl. When she was 5months old, she started day care; A week into day care she contracted RSV during the peak flu season. She battled this for a month, then one day when I picked her up at day care I was shocked to see a HUGE growth (apple size) on her left neck?? I took her to the ER and CT scan revealed she was diagnosed with LM. As parents this was foreign to us; we were devasted; little was known about this conditon; researched online and became even more sadden with negative literature on this defect. Anyhow, we were referred to an ENT doctor who then performed sclerotherapy. After two months, the neck mass subsided significantely, however MRI follow up visit revealed her mass and residiual fluids were still trapped in her chest. We are now faced to get another referral, this time a 'radiologist'. I am relying on the ENT doctors expertise for an experienced radiologist who is familiary with LM patients. The date is pending and hopefully the radiiologist will treat it once and for all!

Questions:
1) Will the LM go away for good?
2) Has anyone else had experienced with sclerotherapy?
3) Can my child grow up normally w/no obvious physical deformity?
4) Is there a cure?
5) How many treatments are necessary to get the LM mass down?
6) Can my child do normal activities?
7) I'm so protective and terrified IF she ever gets a cold or sick that the mass will flair up?
8) Any advice?

Thank you to everyone. This website is a true life saver and gives me peace of mind to know there is an organization/community who I can relate too....

Oh I am also wanting to travel to California for a LM specialist. I spoke to Dr. Levintin and Dr. Linda. They were very helpful. Does anyone have any recommendation? I don't think there are qualified experienced LM doctors in Vegas. I am willing to travel WHEREVER necessary...I truely want the best treatment for my baby girl.

missy 03-16-2010 12:43 PM

Well, hi and welcome.

I can't answer any of your questions. I know a couple of parents who might be able to, though... they just aren't that active. I will try to get in touch with them and see if they will come by, but can't promise anything.

Have you written to Dr. Edmonds?

http://birthmark.org/node/58

He is our LM expert and perhaps he can answer!

Keep us posted!

Missy

Aolmstead 03-16-2010 04:14 PM

Need advice on LM
 
Thank you Missy. I would love to get in touch with real parents who are going through similar experiences with me. I also emailed to Dr. Edmonds with my questions.

I wonder if there are any cases where a child does not get a reocurrence of LM growth?? Could it be possible a child gets treatment, gets well, and doesn't see a mass growth for years or forever?? Can the body regenerate new lymphatic vessels that could function better in the future??

In any case, if there are any parents reading this...I would love to hear your story....Thankyou.

Lianne Mary Chase 03-17-2010 02:01 PM

Lianne Chase
 
My son,Cody, had a LM removed from his right hand. It was the size and color of a plum and bleeding out by the time we finally found the VBF after years of local MD's telling us to be patient and see if it would just go away on it's own. In our case it was not life threatening thank God. I was at my wits end when I met Linda. I was referred to Martin Mihms in Boston who then referred me to the finest extremity doctor to have the LM removed surgically. In our case the LM was both Lymphatic and had veins entangled. Local doctors wanted nothing to do with surgery until he was older. Waiting 10 years was not an option we wanted to take, nor was trying smaller treatments in the meantime. We wanted it gone and for Cody to move on to a normal childhood.
He had his surgery in 01/2005 at the age of 6. He has had no regrowth, wears a baseball glove on his hand and plays all sports with out any problems.
What I learned from the experience was to be an advocate for my family. Ask for the best treatment and get it. The VBF has a wonderful network of doctors that work together for the best treatment for the patient. No egos, just the finest doctors in the field keeping up to date with new technologies in their field and sharing that information.
You mention that the LM is on your child's neck. You want the best in face and neck to take care of your child whether you opt for therapy or surgery. We live in Albany, NY. The best for us was Boston. It is definately worth the travel to California if that is where Dr. Levitintin and Dr. Linda suggest the best would be for you.
Now for the serious answers to the questions I can give you as a parent. There is always the chance that Cody's LM could grow back. LM's & VM's act as filters when my boys get infections and colds. They flare up. Cody's has not, because his was surgically removed. My other son, Casey, has small LM's on his neck that we had laser surgery for. They still enlarge when he gets sick. We are waiting to see what happens to them through his teen years before seeking to have them surgically removed or ablated. Best advice I can give is get to the best Dr. in the field. Both of my boys live very active lives. I will keep you in my prayers.

Aolmstead 03-17-2010 07:03 PM

Thank you Lianne for your story. I am so inspired and hopeful after reading your situation with Cody. Bless his heart. I'm so happy everything worked out for you and your family. Regarding your other son, Casey, you mentioned he has small LM on his neck. How old is he? What is the laser surgery? My 9 month old had sclerotherapy on 12/2009 on her left neck and within two months showed significant improvement. Her neck looks normal now. However, not sure how long she can maintain this??? Was your son's neck visible in growth? My daughter had an enlarged neck mass due to contracting RSV a few weeks prior. Is surgery the sure way to not have a reoccurence?? Was the surgery expensive?? I am trying to get a referral from our local las vegas doctor to perhaps make it happen with Dr. Levintin should that day come. I really want the BEST specialist for my daughter to have.

Any advice would be most thankful.
God bless

missy 03-18-2010 12:17 AM

Thank you so much, Lianne! You ROCK!!

Missy

Lianne Mary Chase 03-18-2010 08:35 PM

Casey's LM's are tiny. They look like little red warts. When he gets a virus they enlarge, turn purplish and hurt a bit. Cody's surgery was covered under my HMO, after I appealed their denial for "In-net" coverage by proving that the local network of doctors could not provide what the "Out-of net" doctor could. Had it not been covered by my insurance, it would have been approximately $30,000.00 of which I would have had to pay the $6,000 co-pay for out-of-net treatment. Good referrals and additional doctor support was what won my appeal.
Lianne

Aolmstead 03-18-2010 08:56 PM

Thank you Lianne
 
Yes, I am working with Miley's local pediatricians, ENT doctor and other professionals I could think of to advocate & support my daughter that her condition is medically necessary to go to CA for treatment. Las Vegas just does not have this speciality field. In fact, the radiologist we plan to see next Monday has NO experience with infants as young as my daughter. That is alarming. His nurse never heard of LM. Second bad sign......

So when Casey had his treatment, you paid nothing out of pocket? I have HMO Health Plan of Nevada.....

Lianne Mary Chase 03-19-2010 04:35 PM

Cody's was done in Boston. All I paid was the co-pay for in-net hospital, which was $250. Casey's laser surgery was done locally in-net at Albany Medical Center. That co-pay was $50.00. Thank God for medical insurance.

nickbar 03-25-2010 01:38 AM

I spoke to a patient advocate group in Nevada not long ago. She said it is common for patients in Nevada to go to California or other states for treatment. If you can get the support of your primary physician, you may be able to have this approved. Please feel free to email me.


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