posted
I worry about this too I have 2 congenital sons. We are going to a 2nd LLMD just because I want to make sure they have a really good doctor.
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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And I am still interested in responses to yours.
Posts: 822 | From midwest | Registered: Apr 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have the same question. My 13 year old has been on IV Rocephin plus orals for a couple months now. His presentation is mostly behavioral and attention stuff, severe ADHD.
The one thing I have noticed of late is he can now, for the first time ever, fall asleep WITHOUT sleep aides. This has been for the past 2-3 weeks. I have been able to eliminate them. I am hoping this is a sign of progress.
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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posted
I have had Lyme since I was 10, so I really don't remember the time before being sick. I was actually sick from the time I was a small child .... always sick .... tonsils out at age 5.
I am not on the verge of being completely well. Trust me, he will know. When there's no pull on your energy from illness, you know.
On the other hand, I do have to ask if certain things are normal. For example, if I have a busy day and feel tired after dinnertime, is that Lyme or is that normal? If I get light-headed on a really hot day when I've been out riding a bike, is that normal? So I just ask someone. Yeah, then they think I'm nuts, but I really don't know this stuff.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tickbattler
Unregistered
posted
So sorry your son is dealing with this.
I have similar issues with my kids. One of mine started showing symptoms before he was 2 and the other around age 3. They may be congenital (repeated ear infections, constant colds lasting 2 weeks) but I know they also were reinfected with several tick bites from 13 months on.
You will need to beef up on all of the symptoms and ask your child if he feels these things. My twin boys just turned 5 and I chart their symptoms and ask them several times/day if anything hurts.
I thought the same as you but it becomes pretty clear after you do this long enough. You will know when he's healthy if you keep close tabs on him. For example, you can say, "Are your ears making any sounds like a buzz or a ring?" You can also ask if he sees any shapes or colored dots when he looks at a white wall. One of my boys had both of these symptoms.
My other boy had buzzing in his ears and I never knew it until I asked him because he never mentioned it.
You will have to clarify what is normal for him. It will be pretty obvious when he starts to improve. If you track symptoms daily, you will know when he is well.
I do this with my 2 year old daughter as well. She rarely complains of ear pain or headaches and usually wakes up happy from her nap for the first time in a year now. She no longer cries in her sleep. These are obvious changes to me since I observe her every day, but might not be noticeable to someone else.
posted
tickbattler - that's interesting. Our previous llmd and the current one, both of them suggest not to ask questions to our daughter with "suggestive hint", meaning that we shouldn't suggest if anywhere hurts but simply wait for "complaint" while not ignoring them.
I tend to agree with our llmds because I don't want her to "search" for pains. But I am interested in hearing your experience on the way you handle your kids. Do you find that your "suggestion" of pain or discomfort had somewhat influenced their decision in feeling?
I know that could be an issue, but in the case of children who might not know what is normal, I think it's important to mention things that could be symptoms. Of course, you have to know your chiid to determine if he/she might try to make things up.
I have explained to my children that it's very important to tell the truth so that we can tell the doctor what is happening. I also sometimes give several answers to my question that they have to pick. For example, when my son complained of a constant headache, I would ask several times/day, "Does head hurt a little, a lot or not at all?"
After a year of "a lot", and a some "a little", one day he finally said, "not at all"! I would ask the same thing about the buzzing in his head and the spots. Of course, many times, he would complain of things without me having to ask.
I also normally ask the open ended question, "Does anything hurt or do you feel fine?" You will see patterns and will know if they are telling the truth. Later, when my son had mostly psych/anger issues, I would ask if he was happy or angry. First he would say "I'm angry." Later, he would say "happy and angry." Now he mostly says, "I'm happy."
Once in a while, he would complain of something hurting when he was angry at me or in a time out...Much later (at bedtime) when he was calm again, I would ask if it really hurt or he was just making that up. I would remind him that we needed to tell the truth so Dr. J could get him better. Only in those cases, sometimes he would reverse what he had told me previously. This only happened a few times.
In the beginning, my husband was more skeptical when the kids would say things hurt, even if it was not suggested to them. He thought two of them might be copying the other.
When my second child was diagnosed with lyme and bart and would complain of muscle aches one day and be perfectly fine the next, my husband was not on board until the testing came back showing he was positive for lyme and bart. I knew my son was sick and he could not be making these things up.
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I have 2 congenital sons. We are going to a 2nd LLMD just because I want to make sure they have a really good doctor.
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