HealingWell
Search Close Search
☰

Rowingmom and all other moms with bacteria affected children...

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/18/2015 6:32 PM (GMT 0)
Were you able to keep your children in school through all their health struggles and crises? Or did they have to be home for a while until their health improved? I looked into online schools for my son (10 yrs old) because on some days he was very ill. Drs advised against it, but they are not llmds and don't understand how ill he felt. They are only concerned with his social life and keep telling me he doesn't have Lyme. He will be off abx in a few days and I don't know what will follow after that. The abx helped. He does feel better. But he had it for a sinus infection and it wasn't enough to treat Lyme. We will see an llmd in March. In the mean time I will try to do herbals to hopefully at least keep things the way they are.
Thanks!

Post Edited (Simela1) : 1/18/2015 11:36:27 AM (GMT-7)

Posted 1/18/2015 9:21 PM (GMT 0)
We had decided to home school before we knew our daughter was ill. We would've had to take her out of school. She started the early college program when she was 16, but had to quit after about a year.

She took a college course last term and did very well. It was an online course, so that helped. She couldn't have done that a year ago, so it was good to see her be able to and I think it gave her some hope. One herbal really improved her brain function a year or more ago. I think it was Thunder Pearls.
Posted 1/18/2015 10:07 PM (GMT 0)
I am glad you are seeing an LLMD. We have had very good luck with herbals, but did do 2 years of abx before switching to them. I can't say we would have had as good response with herbals if our daughter had not had the abx treatment before hand. I have improved significantly with herbals alone (it wasn't perimenopause after all), so that is why I am such a proponent.

Are you able to consult with a ped psychologist? We did before abx treatment and were given diagnoses of ADHD, motor delay, probable PANDAS and Asperger's (high functioning ASD).

With these diagnoses I was able to approach the school for an IEP. So our daughter continued in school with accommodations for social interaction (a teacher was available during periods of interaction with peers, ie recess, lunch), ADHD (she sat behind a screen during periods of in-class work - allowing her to filter out class movement, and earplugs so she could filter out noise, and removal from class for testing with an EA to redirect her back to her work). She was also given OT to address her motor delays. We did private OT/PT/speech therapy to help with speech, writing and other motor delays - catching a ball, cutting with scissors, tooth brushing etc. We also enrolled her in after school CBT with a private autism school.

All of these interventions were helpful; but it wasn't until we addressed her specific infections that we began to see real improvement. She just started figuring out for herself how to improve on her lack of development - decreasing infection load trumped therapy every time. With abx and then herbal treatment it was like she was able to develop on her own.
Posted 1/21/2015 4:07 AM (GMT 0)
My son (6 yr old) is still in school.

He's been in treatment since July 2014 and seems to be responding well. I think we got him to LLMD quick enough since I noticed his symptom as Lyme the first time he complained about it -- mostly sore soles and knees pain.

Right now, once in a while, he'll have a little headache on the day he woke up too early or a little knee pain, but nothing major. LLMD said it's herx.

Good luck. I hope you get him to see a LLMD ASAP. Oh, on herb, our LLMD has our son on some too....but make sure to adjust the # of dropd for a child instead of full dosage for adult.

Keep us posted please.
Posted 1/22/2015 7:05 AM (GMT 0)
Thanks for your answers. I would like to keep my son at home for a while, but it is tough! Rough! He doesn't cooperate, he doesn't believe he is sick with Lyme because the drs all treated me like I am nuts in front of him whenever I brought up Lyme! So he doesn't know what to believe, and he tends to trust the drs more than me when it comes to medical stuff, right?

He could detox and take more stuff while at home. But he is upsetting his little brother and sister because he is having fits and acting up, so I can't really find myself able to keep him home because his behavior has changed and I can't do anything while he is at home--I have to watch him more than I watch a newborn.

Post Edited (Simela1) : 1/22/2015 12:20:20 AM (GMT-7)

Posted 1/22/2015 7:20 AM (GMT 0)
~~~~~~~~~~~~~~~~~
Rowingmom:
I always have to give some thought to your info. Lots of info I have to digest :) If you don't mind, was your daughter perfectly fine before she was bit? Do you know when she was bit or was she born with delays?

I did consult with a ped psychologist and I didn't get anywhere because my son is fully developed as far as school is concerned, he has no late developments of any kind, so they want him to go to school. But because he had a few seizures, they suggested to put him in some type of special ed. I got the same suggestion from the school as well, and I pretty much lost it, because despite all this, he is still an honor student. What they were suggesting was to place him with kids that have (some of them) up to 100 seizures a day! That is what the school counselor said to me, after I question her what kind of students would there be in the class. THat is not his case, my son doesn't have seizures at school, but only at night, he got a total of 6 grand mal on 4 different nights--only at night (seizures started last year=about 1 year after the bulls eye rash) and they stopped since he is on Abx. Please understand that I don't want to bash special ed for the kids that really need it, I think it is great that is available and it should be, but what kind of learning environment would be to move an honor student who got a few seizures his whole life and only at night, of which he has NO recollection of, with kids that have seizures all they long, away from the few friends he has?

Was your daughter diagnosed with ADHD, motor delay and Asperger's AFTER she was bit or was she born with them--Maybe congenital lyme?
I do not want my son to be sort of stamped as special ed when he is not. His school work didn't suffer so far, I am simply confused weather or not he should be special ed. He doesn't act up at school, no one at school would even believe he has behavior problems. It is at home when he shows "the other side". At school he never got a "step" or get into any trouble. Never.

I think you did a fantastic job with your daughter and I admire you! You got sooooo far! But what they were trying to do with the "help" I think would be the most detrimental for my son, to be surrounded by students way below his level all day long, when he just has an infection, not a permanent condition (I hope). He doesn't have any of the writing/motor delays and I think being around kids that do all the time, is going to make him feel he is much seeker than he is and make him feel he will end up just like them. He is in pain a lot and I don't think special ed would help with his pain.

Again, I really admire your determination and how far you got with your daughter, but I hope you understand my position. I think it's a slippery slope to go that way for him, that may only make him get worse psychologically. He is no doubt psychologically affected by this, he gets seizure like episodes when the pain is overwhelming and he feels terrible. But the EEG shows that these are not real seizures, and they are related to an overwhelming feeling (most likely his pain). He NEVER gets this at school, probably because his mind is focused on something that they are doing. As he started to feel better, he doesn't get them at home much either, and there are days when he gets none.

As you, I feel that the infection has to be addressed and I do not see how those psych meetings would help much, when they teach him how to deal with stress, instead of someone treating the cause of his stress. Sort of like, enough is enough, we've been to infection disease, immunologist, neurologist, cardio, pulmonologist, ENT, and I can't even remember a couple of others. Give him some abx already to get rid of the cause of his problems!

So I feel that there should be some sort of accommodations for kids without mixing everyone in the special ed classes. But without a letter from the drs, they won't do any accommodations such as taking the elevator because his legs hurt. None of the drs believe he is in so much pain because of an infection and they all say that he was treated for 1 mo with doxy and he doesn't have lyme anymore. Maybe the LLMD will be more helpful. The principal told me they have a program that can allow students to come to school part time and complete the rest of their work at home. But without a letter from the dr, the principal can't do it.

Thanks again!

Post Edited (Simela1) : 1/22/2015 12:56:32 AM (GMT-7)

Posted 1/22/2015 12:52 PM (GMT 0)

Simela1 said...
Were you able to keep your children in school through all their health struggles and crises? Or did they have to be home for a while until their health improved? I looked into online schools for my son (10 yrs old) because on some days he was very ill. Drs advised against it, but they are not llmds and don't understand how ill he felt. They are only concerned with his social life and keep telling me he doesn't have Lyme. He will be off abx in a few days and I don't know what will follow after that. The abx helped. He does feel better. But he had it for a sinus infection and it wasn't enough to treat Lyme. We will see an llmd in March. In the mean time I will try to do herbals to hopefully at least keep things the way they are.
Thanks!

I home schooled my youngest when he was in 2nd grade. Not because of Lyme. I found it to be educational for both of us. You have the ability to explore subjects in a greater depth than a classroom can provide. My biggest fear was missing something! I didn't want him to have a gap in his education.

He was able to join gym class and any extra curricular activities for the social aspect at his school. Because we pay town taxes, he couldn't be denied. Check with your local library to see if they have a home school group. We did a ton of adventures and learning through our local home school group. If your town or state has it, look into DI (Destination Imagination) I can't speak enough about this program and how much the children get out of it. My children and I LOVE it. Another program similar to DI is OM (Odyssey of the Mind).

I also supplemented his education through EPGY at Stanford online. He didn't care for EPGY too much, he found it boring and repetitive. I also purchased K-12 learning program.

At the end of the year he met with a lady that was certified through the state to make sure he had acquired all the skills and knowledge for a second grader. This is required by our state.

If you decide to send your child back into public school, the school will do a placement test.

A six hour day at school can be done in two hours of homeschooling.

A lot of collages look for home schooled children.

Homeschooling can be done on the days your son feels well.

In the end, you have to do what feels right for you and your child.

Do you have more than one child?
Posted 1/22/2015 3:51 PM (GMT 0)
I am so used to discussing things with mothers on the PANS/PANDAS forum, that I sometimes forget that not all children with lyme/co have psych/neuro issues. Sorry about that.

Yes, our LLMD diagnosed congenital lyme/PANS because K had issues from the get go, although her motor ticcing began 1 month after her bite in 2008 and her pain symptoms started 1.5 years after that in 2010.

I think you are right; if your son has no other issues other than the night time seizures there should be no reason for putting him in an exceptional class, although his teachers should be aware of the condition and be prepared to act if he does start seizing during class. No one appreciates being singled out, especially a fully cognisant 10yo. But only your school will tell you how much accommodation they will allow.

For a lot of the time that K was being accommodated with her IEP, she really wasn't aware of how much her behaviour deviated from that of her peers. Fortunately she is very aware now.

Answering a question you had posted to me on another thread:

Mountain Rose Herbs is one of the companies on Buhner's recommended list. Please be careful of where you source your herbs. They may be organic, but if they are grown in a highly polluted area you may still be getting unwanted toxins. For this reason I stick with Buhner's recommendations.

Others include:

Elk Mountain Herbs
1stChineseHerbs
Healing Spirits Herb Farm
Horizon Herbs
Mountain Rose Herbs
Pacific Botanicals
Sage Woman Herbs
WoodLand Essence
Zack Woods Herb Farm
Desert Tortoise Botanicals
Posted 1/23/2015 8:42 AM (GMT 0)
Thanks rowingmom!

Yes I am trying to stay away from things made in China and India as well as corn products and/or gmo products in general. You and your daughter have been through a lot! I am so glad that she is doing better. We really live in a crazy world. Hopefully the bugs won't win the battle, but us.

I am in love with Mountain ROse Herbs, it is easy to navigate and they have so much stuff there, I can spend the rest of my life reading through! I prefer to get the roots, but I can't really find them. Amazon has some, but they are made in India or China. Some are made in California, but because of the radiation, I think they may be just as contaminated. I feel like everything is narrowing us down, no place to hide from pollution anymore. We leave by a nuclear plant. I wonder if that is what is making us symptomatic to bacteria. Also, I didn't have thyroid problems before, but after 2 yrs of moving 10 miles away from the plant, I have to take meds for my thyroid.

Thanks again, I copy and paste your answers because I know I will need them again. I will order Buhner's book, too. I wasn't really familiar with his work. CSA seems irreplaceable so I am considering getting it. I think he may have HPU because he has those white spots on his nails--a couple of them, very little, but Dr. K that in itself doesn't even need further investigation. If you have the spots you have HPU.

My son loves nature, so he will probably read Buhner's book, too.

Thanks again!
Posted 1/23/2015 7:52 PM (GMT 0)
Mom of 2:

I value the benefits of homeschooling. Research shows the kids are better prepared and score higher. But I have 4 children and my little one is only 3. He is all over the place and loud :). I would love to do homeschooling and I thought about it. But with my little one around is close to impossible--he wants to do HW too and wants to write in their notebooks and books etc. maybe in another year is doable but now he is not very cooperative--he has a mind of his own and he thinks everything is his--even my underwear :)

Thanks!
Posted 1/23/2015 8:13 PM (GMT 0)
Simela, you could get him his own "workbook" that he can do his "homework" in while the older ones are doing their school work!

Well, although I didn't have kids that were infected, I was and chose to home school all the way through till college level with my kids. It worked out wonderfully - my daughter graduated at the age of 16, my son at the age of 17 - they both got full scholarships to different colleges and have gone on to have wonderful careers. I encourage people who are willing to home school that don't have sick children and it's even more appropriate for those with sick children.

It doesn't matter what any other doctor says about how you choose to school your child, not even the school district can tell you if you can home school. This is your choice.

Their thoughts about socialization -or lack thereof - for home schooled children are nothing more than thoughts in their heads. My kids did fine and are wonderfully social and active adults now.

My step daughter has chosen to home school her kids after watching how well her step siblings have done in college and in their chosen careers. My daughter is a clinical research assistant with the University of Arkansas Medical Sciences, and my son is working for Union Pacific Railroad - so home schooling didn't hurt them one bit, if anything it better prepared them to face the world.
Posted 1/23/2015 10:59 PM (GMT 0)
My daughter homeschooled eighth grade. Her sensory issues just wouldn't allow her to be in a noisy fluorescent lighted building. Luckily, she likes school and pretty much taught herself.

She is back in school this year for ninth grade, in an early college program. She loves it.

I think what helped her the most was occupational therapy. She's learned to cope with the things that used to drive her batty, but she's far from well. She also has a principal with a child on the autism spectrum, and she understands many of my daughter's issues and pulls her out of situations that could get out of hand. My daughter isn't officially on the spectrum, but she has many Asperger's traits that came with her illness.

She was diagnosed with PANDAS at age 12, and Lyme/Bart at 14.

I think homeschooling can be great for these kids, and it doesn't have to be a permanent situation.
Posted 1/23/2015 11:18 PM (GMT 0)
Rowing mom is amazing. I am hooked like she is and it still consumes my life. If you can find and look at my threads, you will know what I've been through and am still going through.

Andrew was a knee swell in 2010 and turned TICS, OCD, ODD, "BIPOLAR" and totally psychotic 2013 - 15 years old. He missed most of spring and they just didn't grade him on all he did not do. This fall he went and got put out, not doing any work and missing way too much school... his sleep often flips.

I have four children, you gotta love it when they tell you it's a teen thing - YEAH, RIGHT.

So, he plans to go back Wed. Yesterday I took all his computer stuff and hid it. REALLY WELL. But there was a big blow out. So, he's hardly doing home instruction work and now plans to try again with his sleep flipped AGAIN.

He is just LYME, all co's were neg. Has a dr. practicing 35 years lyme and a psych lyme dr ex pres. of ILADS practicing 42 years. He is in good hands, it just takes a REALLY long time.

PS older son had rash and was treated, so far symptom free, but he's willing to go on ADP protocol for life to keep it that way.

So, I guess we need to see what works best for them. He was very social, would have been top 10 in his HS class, had leads in school plays. Now spends 24/7 on the computer on gaming, administrator to the site, thinks they need him, friends abandoned him. He should have his Eagle scout project done and been Eagle rank by now... I HATE this disease.

I've pretty much neglected the rest of my family and give lyme 24/7 of my time..... it's so sad

Home instructors tell me he's brilliant, but he does not work, so it's doesn't matter. He's doing homework 5 - 15 mins before they get here and he's honors 10th grade. Mostly he's pulling it off, but some are only giving him B's or C's - he used to be no less than 95 and was third in the state in a math thing.

Unreal. Plus he's ticked at me for emphasizing grades.

Have to go do more meds and healthy food, if you want to email me, it's up there, there are several awesome lyme moms on this site though, probably more informed and successful than I. It's been a long road.
Posted 1/23/2015 11:53 PM (GMT 0)

Simela1 said...

I will order Buhner's book, too. I wasn't really familiar with his work. CSA seems irreplaceable so I am considering getting it. I think he may have HPU because he has those white spots on his nails--a couple of them, very little, but Dr. K that in itself doesn't even need further investigation. If you have the spots you have HPU.

If you think you are interested in pursuing herbal treatment, which you may consider after weaning from any abx prescribed by the LLMD, I would consider purchasing ALL of his books:

Herbal Antivirals: Natural Remedies for Emerging & Resistant Viral Infections

Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

Natural Treatments for Lyme Coinfections: Anaplasma, Babesia, and Ehrlichia (which hasn't hit the shelves yet).

Honest to Golly Goshness, they will change your life, or at least your paradigm.

They will be over your 10yo son's head, but you will grasp the information. Perhaps when he is older and needs to look out for himself.....

We supplement 10 mg zinc daily. But haven't tested for KPU.

@ LoveMyChildrenMom - K was Igenex negative for both microti and duncani. But still herxed with full babesia symptoms on CSA. Treating that babesia infection with herbs has brought her to the best place of her whole life.

Just because any of your children have tested negative on any coinfection test, please don't assume they don't have a similar, but untested for, species of the genus.
Posted 1/24/2015 11:36 AM (GMT 0)
Lovemychildren:
"
I've pretty much neglected the rest of my family and give lyme 24/7 of my time..... it's so sad"

Yes, I feel that way too. And with the missbehaving, that is why I am thorn to keep him home (homeschooling). He goes into rages, yelling at me to shut up, can't even tie his shoes some days! I have to ask him up to 10 times to put his folder in his backpack, like it is a huge deal for him. Maybe it is. But I can't have him here yelling at me the whole day in front of my little children because he will influence them

Up to a few months ago, he was completely different. Now, I don't know who he is anymore, sometimes I really don't recognize him.   He used to be so gentle a carring and very well behaved.  He gets irritated very easily and I have to watch him because if he goes into one of his rages, he may hurt someone. It doesn't happen every day, but it happens often enough. So, that is my dillema. If I didn't have my young children, I would keep him home. But I have to think about them and protect them, too.

At school he gets irritated with the kids that don't behave and I think because he holds back at school, he comes here and pours all of his anger from whatever bothered him that day.

Post Edited (Simela1) : 1/24/2015 4:40:01 AM (GMT-7)

Posted 1/24/2015 11:47 AM (GMT 0)
Rowingmom:

Thanks for the titles! I've followed a few lyme literate drs and read their work, but I never ran into him. I saw they have his books on Amazon. Yes, it is great that you give your daughter zinc, but it may not be enough. Dr. K says that giving small amount of zinc doesn't solve the problem because if you give them 100 and they pee 1000, they are still off balance. THe white spots on the finger nails are one of the symptoms, but even if one doesn't have the spots, HPU can't be rulled out. Something for all of us to think about!
Posted 1/24/2015 11:53 AM (GMT 0)
AML:
Yes, the lights bother him, and the noise too. He comes home very irritated when the kids act up in the bus, playing music or being loud. The lights: we had to get him eye glasses that change while he is in the sun--they get darker, like sun glasses.

I really don't know what to do! If he would behave, I would gladly keep him home. But all he wants to do is watch TV or play on his tablet. He is bored.

If he is in school, he has HW and then he is allowed to play on his tablet one hour a day.

He used to read a lot, up to 300 pages per day, but now he lost interest in everything. It's very hard to reason with him.
Posted 1/24/2015 1:10 PM (GMT 0)
I don't know if this will help or not, it's just a thought. Maybe try a sport or some type of exercise? We have found swimming to be the best. There's is something about being in water the kids find therapeutic.

If the bus is problematic, he's coming home with sensory overload. Is it possible for you or someone else to pick him up from school?

Both my children have sensory sensitivities. They also have congenital lyme. They have learned to deal with the sensitivities as they have aged, but when they were young it was extremely difficult for them and us. Not knowing at the time we all had lyme.

I hope you find the solutions you need to help your son. I understand how difficult it is to watch your child change and suffer. I wish you the very best.
Posted 1/25/2015 8:41 PM (GMT 0)
Simela, My son is 16 now and this all started a year ago summer. Sounds just like your son. Rages and danger as he is older and strong. I have two older, 20 and 22 now and one younger, 13. I asked Dr. B about a place to send him, but he said there really is none unless you stay with him. He also mentioned he would not want to be me right now - that really helped, but he did understand the profound chaos and heartache is causes.

Dr. B treats the psych issues, people fly in from all over the country to see him. Dr. S treats his bugs. He has been on Doxy since May 2014, Pinella brain nerve cleanse since June 2014, Prozac and Prazosin since May 2014 (for body movement, tics, and intrusive thoughts). The raging ended in Nov 2014 around Thanksgiving. We had a blow out the other night about getting good grades and I had taken the computer to help him come back into real life. He was really angry and yelling, but I could see in his eyes and tell by his behavior, the raging is really gone. He really can't hit that level anymore. Thank you God! I know angry teen and can deal with that.

Like your son, he was so laid back, was so kind and friendly, his smile lights up a room and people are naturally happy to be around him. Even at home, he was not your "typical" moody obnoxious teen, only one of my children is really like that, so I know when something is so wrong.

He got very annoyed and angry with people at school also, and held everything in, including the tics, as much as he could outside. I guess he worked so hard on that, he could not really focus on lectures or work or studies. But like you said, when he got home where he knows he is loved and accepted and not judged (well he would dispute that one), he would cut loose and all hell broke loose. Such a nightmare.

Thanksgiving the dr. added Tri-Fortify Orange and Alka Seltzer Gold with lemon as extra detox. All fall he boosted him from 200 to 300 to 400 doxy mg. a day and he was kind of "backing up" and getting worse again. These really cleared him.

Last year when we were trying to figure out what was wrong, they did not grade everything he did not do, so his transcript were ok. This year, he went to school in Sept. and was SO happy, but did not work, his sleep flipped so he missed a lot of school and they put him out on home instruction. Some days he just makes it up awake to get to that! Still not really doing much work. The instructors tell me he's brilliant, but the work just doesn't seem to matter to him.

He will go back Wed., it's a mess. He's behind in a few subjects, teachers are trying to cram in reviews and give him quarterly exams (I think they all figured he would still stay home). He's not studying at all this weekend for anything and has stuff due (not done) tomorrow. Does not care about the grades.

I anticipate he will be home again. He's kind of out of days to be absent, used them all up the first month in Sept. and if he does no work again, they don't want to fail him, so he would end up back home. Also, he has not been on a cyst buster yet and that may put him down flat. I am SO freaked out. Everyone I know keeps telling me to chill and let it happen as it may. THe most important thing is getting him well. Also, we have all been on no sugar, no carbs, no yeast. I can't tell you if that has helped him or not. He does not like to talk about any of it, so I guess at everything. Plus his is all mental, so no pain or changes in that way for him to notice. He did say he has good days and bad days and lately is stressed about going back to school so a few tics are back, but nothing too bad. No more holes in the wall or smashed things.

I'm here for ya, whenever you need an ear - not sure my suggestions are great....
Posted 1/28/2015 8:38 AM (GMT 0)
Lovemychildren:

Yes, it is indeed a similar story. I don't know if you were hit by this yourself, but I was. So I know how it feels: terrible. Every noise, everything is irritating. I think they are looking for a distraction. He wasn't like this before because he wanted to interact with us. Now he takes everything out of proportions. He is not like this every day. Some days he is just unbearable. I can't say a word or he takes it the wrong way. I joke with him about something, he starts crying that I make fun of him. And it is not just with me, it's with everyone in the family. Even my mom, and he loves my mom! He can't stand being around anyone. It's a lonely disease!

Some days he is so gentle with his little brother and others he takes everything away from him! I don't know who dr B and dr S are. Maybe you can email me the names if you can? If you can't, please let me know. I try to make my email seen, but I don't know if I succeeded?

If it would be every day, I would try some of these meds. But it is not every day and I do not want him to get on these meds. It will be on his record forever and I do believe that he will come out of this state with treatment for Lyme. I will wait it out. Today he was fine until tonight when he had a 5 minute fit. I don't want to give him meds for a 5 minute fit. At least not yet.

My son also try to hide his tics and his pain at school, although the pain got better. It is hard to go up and down the steps for him because he acquired a rigid foot. I wonder if that has to do with Lyme because he was moving around less since he was in pain. We have to start physical therapy for it.

alka seltzer gold sounds good, not sure what the other one is, but I will look into it--thanks!

My son got his first C on math. He is one of the best students. I wasn't hard on him because I know if someone made me do math, I could not do it while I was sick. I could not add 2 numbers under 10 and I have a grad degree in math and statistics. Yeah, I understand what they are going through because I went through it and it's tough, hard to concentrate and you feel like you will lose your mind because everything is overwhelming and unbearable and it seems impossible to accomplish.

I don't think he doesn't care about his grades as much as he thinks he can't master the material no matter how hard he tries. Can you imagine, reading something, a little short sentence with banal words, and not comprehending? That was me! Thank God I finished my education before Lyme!

If he misses a year of school, it's no big deal. Having the stress to do work he can't do, won't help him. Please worry about his health first, you can worry about his education later. The cyst buster may put him down flat, but it is still better to put him down flat and get well, than avoid using it to be able to stay in school. I went to college and then I dropped out and worked for a while. Then when I felt like it, I went back and finished my education. Don't be freaked out. Like others said, the most important thing is getting him well.

Thank you and I am sorry it took so long to answer. I did read what you wrote, but I didn't want to answer with one sentence, and I've been kind of busy and all over the place, trying to figure out what to do about adding more stuff to help him.

Thanks again for taking the time to write me :) Hugs :)
Posted 1/28/2015 2:14 PM (GMT 0)
Thanks Simela. He is 16 and was getting dangerous. The episodes were lasting 1/2 hour and were often and the raging involved throwing furniture, a knife incident, and crazy crazy anger. He is big and strong and I'm often alone with my younger daughter or alone with him as my husband has to work out of state and is home for weekends.

Thank you for your detailed response. I try to remember the retention and focus problems, but he's telling me he is a 9 out of 10 and wants to be back in school. So, I would expect work to be done at this point, not excess computer addiction as he still has, but then that has become his world and life. Maybe school and real people will bring him back. I asked him if he was sure as it is loud, bright, busy, and possibly overwhelming - just making the bus at 7:10 will be a challenge. Some days getting to in home instruction when the teacher gets here at 11 am is a challenge!

I have not been hit with it, but have been through many surgeries and serious illnesses through the years, so I understand pain, suffering and long recoveries in many different ways. You learn to be grateful for your limbs and functioning insides - things that seem so simple.

I wish he would have skipped this year instead of bad grades going on his transcripts for college. That is where I'm having a problem getting my head around it all. He does not want to be behind.

You are very fortunate, yet not, that you made it though all you did intact! Really puts it in perspective as a math major and then not being able to add, oh my.

I would wait also on the meds for your son. The treatment for lyme will get him over those things. It took about 6 months for my son to calm down and be happy and interact civilly again. He still does not eat with us and I don't care at this point. Baby steps of progress and coming back to reality are all I really care about and him getting to 100%.

I will try to find your email for the dr.s names.

You are an awesome mom and can empathize with your son, that is going to be very helpful in his healing. Hang in there, you are doing great! It's so hard, I understand.
Posted 1/28/2015 2:18 PM (GMT 0)
Can't seem to get to your email, but if you are not in NJ, it wouldn't help much anyway... Dr. B is published and was pres. of ILADS at one point - he is cited in Cure Unknown and is all over the internet. He is a psychiatrist and speaks at conferences with Dr. Burascanno.
Posted 1/28/2015 2:34 PM (GMT 0)
I thought he doesn't practice anymore? Maybe is a different dr B then I have in mind. I will contact you shortly. Hmmm. I am in PA :) not too far! We have family in NJ and go there several times a year
Posted 1/28/2015 5:48 PM (GMT 0)
@LovemychildrenMom and Simela - We have been through what you are now going through with your children. K used to rage, scream, cry, hit. It was horrible. She would fly off the handle at any little thing. She was ultra sensitive to light and sound, forgot how to hold a pencil, and her writing and math skills were horrible.

I had to go to school every day to clean out her desk, bring home her homework because she would forget it, and then work the whole evening with her on what the teacher was going to teach the next day. That seemed to help if she knew what to expect.

It is all better now. Treating bart helped most of her pain and sensory issues, but treating her protozoan infection (babesia) helped her cognitive/executive function the most.

Keep at it you guys. Your children are very lucky to have you in their corners.

Is this the doctor you were talking about LovemychildrenMom?

https://www.youtube.com/watch?v=7kG7BHlByeQ&app=desktop

Robert Bransfield
Posted 1/28/2015 6:01 PM (GMT 0)
:) You bet! Love him! He told Andrew to do lyme awareness for his Eagle project and that he would help him with it and they could both write articles on it for Boys Life - so cool!!!!!!!!!!!!!!

I'm sure Andrew won't do it, but what an honor! I'm praying he makes it through ANYTHING to finish. He's got it all done and has for a year and a half - then boom. Nothing, just lyme. All he needs is to do the project :(

Thanks for the support and hope, I'm starting to lose it. Well, I have been with glimmers of hope here and there, but I'm back to misery.

You are a great mom too - she is so blessed!
✚ New Topic ✚ Reply
12