posted
For those of you who dont know me I have a 6yo son who we believe is congenital lyme and bart. He had failure to thrive from 3 months on and TERRIBLE behavioral issues from OCD at 2.5yo, tantrums, always angry and difficult and had vocal tics.
In January 05 Dr. J and I decided to treat for bartonella based on his symptoms even tho his tests were neg.
By March he was a different little boy. One we only used to get snippets of....happy, smiling, even tempered, listened very well and NO VOCAL TICS!, NO OCD!
He stayed that way from March thru July until ....... he got bitten again this summer. :'(
Now he has been on ABX for lyme since his re-bite but his behavior problems and vocal tics are back and he is once again miserable and difficult to live with. EXTREMELY hyper.
SOOOO I am VERY SAD. As most of you know I am having my own ups and downs as well as my daughter. When will it end? Im so frustrated.
I will talk with Dr. J today and see if he wants to resume the bart meds. I cant take seeing my sweet little boy this way, What is worse is HE himself notices a difference..
He said to me yesterday, "Mamma I was better, I dont like being mad and nasty all the time" Talk about crying. I cried myself to sleep.
I can only hope that the treatment will again help him. It was like a miracle to us.
I cant stand this tick situation! He got this one at a friends house and by the time he came home it was already deeply embedded. I don't know how we can win this war.
My 11yr. old son gets irritable and depressed on certain meds and also when he's herxing.
We do counseling and thyroid medicine and meds for depression and sleep. Right now it is worth my energy, but hard to get out to Dr.s.
Which Dr. J. does he see?
Problems are in and out and up and down. And for a 6yr. old!
This part of the picture has me muttering "Jesus". I am telling myself that I am appealing not swearing. Probably both.
Sounds like herxing which means it will pass. Hope that doesn't feel too trite or poorly timed. The herxing theory helps me keep hope alive. Also antibiotic breaks, switches, and decreases have helped when we are at the breaking point. (when my daughter and I start yelling at him)
Also I know Moms who said the tics were resolved for their kids with Lyme.
If you would like to respond, please post it as a new topic because I can't figure out my e-mail and I have lost the numbers at the bottom of threads so I can't read all of the responses. Sorry if these multiple new threads are an annoyance for others... I'm really feeling the need to encourage and seek encouragement. Hopefully I will get more energy soon to rectify technical difficulties. Can't deal!
posted
I'm so sorry about your son. My son doesn't have behavioral issues at this time, but with lyme, you feel like you are living on borrowed time when anyone is acting like themselves. My son goes to Dr. J. and we are pending treatment for him depending on how much worse his bloods are. I too have lyme and was exposed to bart and ehrlichiosis, never treated. Lyme treated, bart not. I have 2 days of feeling myself, then confusion, starts again. I'm afraid I gave this to my son as well. He's 10 and his bloodwork is irregular (ana positive, sed rate...) I'm on minocycline after 6 mos of rocephin. There is no justice with this disease - it's everyone young old, sick, well everyone is at risk.
With treatment and Dr. J., you'll have him back. YOu saw a change before - it is possible and will happen again. IT's hard to watch soomeone you love feel like they're slipping, I watch it with my son and my husband watches it with my son and myself.
God bless- Cigi
Posts: 320 | From Upstate, NY USA | Registered: Dec 2004
| IP: Logged |
liz28
Unregistered
posted
Pattie, that's awful. Are you in an area where the local government is willing to address the tick problem? Is there any way to protect your property from them? Is it legal yet to shoot trespassing deer, with a bow and arrow if necessary?
A lot of people have posted here that bart is actually more prevalent than Lyme in some areas, so it seems wise to give it the same respect... well, okay, not respect, but consideration as Lyme. If you see bart symptoms, by all means, blast 'em. As you noted in your post, you already know that three months may be all it takes to get rid of it.
In fact, you should know that I'm very grateful for your posts. I've been going through the big rifampin herx this weekend, complete with fever, seizures, rage, and rash, and it meant so much to know this is temporary, and may be gone just in time for Halloween, the only day of the year when bart symptoms are socially appropriate.
posted
Pattiecake, I have a seven year old daughter with Lyme that also has terrible behavior problems - hair trigger temper and constant tantrums that come quickly and go just as quickly. I have suspected Bartonella but so far have not treated for it. What meds worked for your son's Bart? What other meds was he taking at the same time? Could you also note the dose amounts so I could run it by my daughter's LLMD. Thanks. I wish you well with your son. Sounds like retreatment is in order for him.
Posts: 57 | From CT | Registered: Jan 2005
| IP: Logged |
posted
Hi everyone, Sorry it took me so long to respond...lymenet was not letting me on for the day.
Anyway....Liz glad to hear the bart treatment is working for you! Hope your days get better and better. I would like to try rifampin myself but not sure if I can tolerate it. I have a possible sulfa allergy or might of been a herx. Not sure.
Dr. J put him back on rifampin 150mg 2 times a day and bactrim single dose 2 times a day.
It worked miracles last time and Im praying it will again. I know in my (broken) heart that this is a re-infection. He was soooooo good for the last 6 months. Not one complaint. (well the rocky mountain spotted fever he got in June sucked but he rebounded extremely well in 3 days.)
Life for us just keeps gettin better and better. (extreme cynasism)
I did get 5 guinea hens that are not quite mature enough to let out and roam yet.
Until then my son is too afraid to go outside. He got a taste of healthy and is very sad.
He hates the rifampin too because it makes his pee orange and the little boys make fun of it in the boys room at school. (community urinal thing) I feel so bad for him...sigh
thanx for being here. Until the next tick bomb drops......
posted
Sorry to hear your son is not well. I understand his behavior. My manners and such were not the best when I was suffering from cronic Lyme and i was a 26 to 36 year old disiplined Marine. If your little guy doesn't tear down the neighborhood he is doing good for what he is going through.
Posts: 12 | From FISHER ILLINOIS | Registered: Jul 2005
| IP: Logged |
Make sure he drinks lots of water with the Rifampin. Hubby is on a low dose, but if he drinks enough only the 1st urination after his pill comes out orange.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Patti, Just wanted to let you know my thoughts are with you and your son. I hope the medication works its miracles again!
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
posted
Pattiecake, I am so sorry that your son is so sick. It is horrible. My thoughts and prayers are with you and your family. mimi
Posts: 343 | From usa | Registered: Dec 2004
| IP: Logged |
So very sorry to hear about your little guy's reinfection. How heartbreaking for you.
With all we've been through, my own husband doesn't believe it necessary to check for ticks when he and my son have been in tall grass. He thinks I'm over-reacting and I think he needs a reality check.
Hope you know we're all pulling for you!
------------------
Posts: 703 | From Almost Heaven | Registered: Aug 2004
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Man,
It just seems to be ongoing...I'm sorry...for his pain and your anguish...thoughts and prayers.
Trout
Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
posted
this A.M..... we started the rif/bactrum last nite.
I hope it starts to work soon because he woke up angry as a wet hornet. Not knowing why even. Mad at me for nothing. It is very sad. The vocal tics are VERY sad too.
He just got a teacher this year that he REALLY REALLY wanted. I will have a talk with him. THe only thing is that I know that his teacher last year DID NOT believe his troubles stemmed from TBD's even tho I had a letter and info from Dr. J.
I hope this teacher understands. He is a great teacher.
The timing is just great. thanks again all of you for your support. It brought tears to my eyes. pattiecake
posted
Hi Patticake: I know this is an old post but I was curious as to the symptoms of Bart. My son tested negative but has so many of the symptoms you have listed with your son. Only difference is my guy is 21, autistic and has lyme. His OCD is getting much worse with lyme treatment and has spilled over to vocal ocd and now tics. When he herx's he is extremely aggressive and I can see it coming a mile away. He starts to growl and I know we are in for a violent episode. His first major herx was when he first started doxy this past June. It lasted a week and I was bruised from head to toe and had a bruised rib. As you say they stop as soon as they start, but he can do alot of damage in that 10 minutes. I dread the new medications for this reason. I have never been afraid of anything but this sure is a scary scene when it happens....Is Bart testing always accurate. I wonder if this is what is going on with my son. Thanks for any input. Eileen
Posts: 127 | From Rock Tavern, New York | Registered: May 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic