Topic: Results of my 13 year old son's MRI and SPECT...
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
It's hard to believe this is for real. I remember a few years back reading about a family in Massachusetts where "all five of them are suffering from Lyme Disease" and I thought, that's ridiculous.
Well, four out of four of us are. My older son I am sure will be on long term treatment soon as well.
Today I got the results of my 13 year old son Cody's MRI and SPECT scan.
His SPECT scan showed mild hypoperfusion, though Dr. J expects it was worse as the report said he did not stay very still during the test.
His MRI showed 3 white matter lesions and demylination, consistent with late stage neurological Lyme Disease. They are in the frontal lobe.
He will need to be treated with at least six months of IV antibiotics. The doctor's office is scheduling his PICC line placement and medication tomorrow, we expect he will get the line placed in about two weeks.
I am hoping he will respond as well to the IV antibiotics as he has to the oral medication and won't become ill and need to miss school. He understands he is going to be getting this and seems accepting of it.
He will be going on IV Rocephin, the same medication both Blake and I are on.
You know, it's so hard to manage all MY meds, tests, appts, etc....but I have to do it for three sick people. It's really overwhelming, and of course beyond that, sad that my whole family is sick....not to whine, I just worry I am going to miss something or forget an appt or important blood draw, etc.
I get so overwhelmed by all the appts; I have several I need to make for myself that I have put off for way too long. Now this will of course be in the forefront; and taking care of my son will become the priority.
I think between these new results, especially the MRI, and the recent diagnosis of Gilbert's Disease, it really explains all of Cody's issues in school and at home. It would be amazing if the IV antibiotics worked well enough to eradicate some of the behavioral and neurological issues he has!
I would love to hear from other parents whose children had ADHD type presentations, behavioral problems, etc and went on IV antibiotics. Has anyone seen improvement? Cody is congenital, but also has had several tick bites.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Holy Cow! Gosh Tracy, how much more really? I am so sorry to hear that Cody has had these results and has to go through this.
The good part is that kids are said to respond well!
I hope that all of you are able to keep things in order and proceed on your determined path.
Best to your whole family, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Tracy, I am so very, very sorry. It just seems impossible, but yet it isn't.
Wishing you and your family a great response to treatment and restoration of your health.
Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Tracy,
My heart goes out to you and your family.
You should know that my LLMD's entire family (he, his wife and 2 sons...congenital) also had lyme and co's.
My LLMD was disabled in a wheelchair for 5 years.
They all received aggressive Rx and all recovered and are doing well.
He told me one of his son's was very psychiatrically affected. The son was suicidial and had to be hospitalized because of it for awhile. I believe one of the sons was 14 at the time of his diagnosis.
He is doing fine today, as are all of them.
As overwhelmed as you must be right now, there is hope.
They are living proof.
That's why he is such a good LLMD.
I will pray for your entire family. Bless you all.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Isn't there a saying about the family that IV's together, stays together?
My poor attempt at maybe getting a small smile out of you.
I pray for you. I pray for your whole family.
You are doing such a great job.
We're here for you.....always.
Take a little break for yourself now and then, okay?
If you need anything, please let me know.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Ohhh Tracy!!!
Posts: 983 | From The sky | Registered: Feb 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You have such a burden.
Do you have any church groups or home health people coming to help with the chores and such?
There is nothing wrong with asking for help and most are happy to help someone in their time of need. And feel blessed just to be able to help.
I wish I could wiggle my nose and wave my hand and have all the cooking,cleaning and laundry done for you.
So you could take care of all the important things. Prayers to you.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Tracy,
Just wanted to let you know that I firmly believe brain manifestations get better with treatment.
When I first got sick, my brain was TERRIBLE. I would never have been able to even be on this site, reading threads or typing responses. It was truly horrific. I could barely read a sentence.
I also had a LOT of irritability, psychiatric manifestations, etc. It was difficult to live with me.
I had a SPECT at Columbia and it showed mild hypoperfusion, like Cody's. I don't think I had an MRI there.
I am soooooo much better now, thanks to treatment. I still deal with fatigue and some other things, but my brain has gotten a LOT better.
So it's possible to have horrible brain symptoms, abnormal SPECT, and still recover to the point where you can reason well and also **bonus** get rid of the irritability and/or psych manifestations (aka, people I love can now stand to be around me). And I am even off ALL psych meds now!
I think Bactrim helped clear up my brain some, but it differs for different people. Sometimes it can take a really long time (I don't necessarily mean a long time on one specific drug, just a long time in general), and the progress will be so small you don't even notice it until you look back a year and say, "wow." Please hang in there!!!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
That is great to hear, Devin, thanks for all the encouraging information. Your experiences really made me feel a LOT better. I cannot imagine a Cody who isn't hyper...what a joy it will be to see how great a kid he can really be without all the obstacles he has had to face.
Pinelady, I am very fortunate in that just a couple of weeks ago I was approved for a PCA (personal care attendant.) We are still training and trying to figure out how to oversee them when so sick, but at least some laundry is getting done, my meds are getting picked up, and my sheets are getting changed!
(And I'm paying two of them ten hours each to go spread green ribbons around trees because I'm too sick to do so!!!)
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Alv
Unregistered
posted
Tracy you are not alone.I could not sleep for a year and get over the fact that my kids were suffering both with this disease.
Mostly upset with my daughters rash when she was nine years old and sent her to diferent doctors that ignored everything and nobody mentioned the world lyme and my son that got bit again and all these little rashes ...were alergy rashes I was told from the doctors as well.
So both misdiagnosed without mentioning me..THE PROBLEM WAS I have never heard the WORLD LYME in my entire life.Where do I start..and where do I begin to vent....Keep fighting...and take matters in your hands...
Can not even talk about THE REGULAR DOCTORS that ARE SO IGNORANT......on tick borne illneses.
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