I'm writing looking for help for my son's step-mom's twins -yup we are that kind of family : )
They are two and a half and their mom has just been confirmed to have lyme. The little ones have symptoms too starting from early delivery for preclamsia (sp?), behaviour, illnesses, air hunger, and off-the-chart for sensory processing issues.
All three have started photon therapy, so I'm not looking for lyme fighting ideas but would love any thoughts on this:
The babies have been referred to a pediatric behaviour specialist. Their mom is really worried to mention lyme due to aggressive lyme denial in our area.
Is there any thing she should be watchful for? Any tests she could request that could help her help them? Any drugs that could be bad for them?
I'm searching for ideas to help her as she is really overwhelmed with her own illness and the two babies too.
Thanks for any thoughts or ideas.
Posts: 372 | From british columbia | Registered: Feb 2012
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posted
It sounds like they need to speak with an LLMD/ LLND who does pediatrics to get some guidance. Even a phone consult would do if you can find someone...
A behavior specialist wouldn't normally put a 2 year old on medication... I'd be suspect if they did without some very hefty medical data back-up. They would likely address the sensory processing and behavior issues.
Perhaps you could contact the best Lyme pediatrician, Dr. J, and ask for help also. I will PM you with his information.
Posts: 8981 | From Illinois | Registered: May 2006
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Yep...get them to an LLMD preferably Dr. J. asap!
My son has lyme which he got from me and I did all the therapies...sent him to Theraplay for his motor skills...had him in OT for his sensory issues....changed his diet...etc.
It all only does so much and his neuro symptoms progressively got worse.
I finally found out he had lyme and we are in treatment. He is 12. Don't wait that long. Nip it in the bud now...while they are young.
Good luck!
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
Yes the 2 year olds should be treated for lyme with medication (which is why they need an LLMD asap) but a behavioral specialist shouldn't treat them with behavior modifying drugs. They are far too young.
IMO AuntyLynn is correct... they need a correct diagnosis... If lyme is causing the symptoms, then they will go away with proper treatment, not behavioral treatments.
That said, processing and sensory disorders are VERY common for premature babies, and often result in behavioral issues... so their symptoms could be a combination of lyme and other birth-related issues.
For a child/children that young it's essential to have the whole picture since EARLY intervention is extremely important in development.
My son was 10 weeks early and we went through the ringer and back again to ensure he was properly treated and received the correct therapy - 3 years of it. He is now a healthy, happy 6 year old.
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
My son was premature too and it wasn't until I was diagnosed with lyme that we considered that a possibility.
FamilyFive...what type of therapies did your son do? We did lots of things...early intervention, PT, OT, psychologist appts every weeks....ADHD meds when he was older....and my son still has awful sensory issues. Just curious. I'm wondering if there is something we haven't tried yet that may be beneficial.
I don't think anyone was suggesting they be medicated by the behavioral specialist. I would run away from whomever did try though!
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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I wish there was a good llmd here! I know that the babies mama does not have the $ or energy resources to get them out east.
The babies have tested positive using ART testing, so have begun photon therapy, and are on good nutrient support, their mama says they are all showing some improvement.
As we are in Canada, any referral to a specialist is free so she's wanting to make the best use of any free option, like the behavioural specialist.
She is also really worried about getting it wrong, as the little boy was prescribed steroid inhaler for his "asthma" luckily I've been trying to keep close tabs on what's going on with them and I was able to warn her about steroid risks before he took it. YIKES!
So she's in a position where she wants to get the babies any good help she can, with zero funds and lyme brain herself. I know lots of you have been there. Tricky stuff.
Thanks again for the info. I've made a list of the eastern doctors for her. Hoping that the photon therapy is going to work, as it's the path that, by grace, was provided.
Posts: 372 | From british columbia | Registered: Feb 2012
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Just a note on the steroid inhaler. I use one for my asthma and my LLNP said it was perfectly fine to do that. Very different from injected, oral or IV steroids. As she put it, "breathing is important".
Posts: 1748 | From United States | Registered: Dec 2011
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I thought the inhalers were not okay. My 11 year old son used steroid inhalers, infrequenctly, for the last 9 years. I've been really worried that they could have harmed him.
I wonder if it's just that it's (obviously) very important to have a clear airway, or if they are really less of a concern then other types of steroids?
Posts: 372 | From british columbia | Registered: Feb 2012
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