Have some New news

[Caryn]

Carynn,

Was it a DAN doc. that discovered this problem with your son? Did he run a bunch of tests to determine this? I am trying to figure out how you pin it down.

 

Nope.

 

A mom on another forum told me to get the IgG otherwise I wouldn't have had a clue. The IgG results showed wheat and corn and gluten intolerance among other lesser ones.

 

By act of God, really, I was invited to join a private forum for celiacs by a woman who read a response I made on a closed educational forum (at the time Tigger was having issues at preschool). I was overwhelmed to say the least back then.

 

The IgG docs talked about doing an elimination and then rotational diet. It highly suggested eliminating the wheat and corn for good based on his levels. I didn't have a clue about gluten or Celiac. The celiac folks taught me the rest over the next year. Some of them have been doing this for 10 years. Great people. They told me what tests to take and what the test results mean. Whole families have it in some cases. C.D. is much more common than docs think. A family of 7 on that group list all got genetic testing. Their 11 year old with ADHD was dxd with celiac. After testing the whole family they found out both mom and dad had celiac gene and all five kids had at least one celiac gene. The youngest had two and was eating pasta every day!

 

This is an area where most docs don't have much knowledge. My blog forum has a section about treatments and in there I posted how you can find a celiac specialist. But the cheapest is to go through Enterolabs.

[michele]

Myrose,

Praying things went well today and that you find information that can help you daughter. Please let us know how it went.You are in my thoughts all day.

 

Michele

Maybe someone can help me understand what I have also found out today. I called our old neurologist's office and left my number for the on call nurse to call me back. They are open but not the office part. (They are there to do the 24 hour EEG's)

Anyhow the nurse called me back! I remembered her from our visits there and she remembered me. What she told me was astonishing to me and I am looking to get get answers on to why this happened as well but of course will have to wait until Monday morning.

 

I explained to her what was going on with my daughter...... (I never mentioned the new neurologist) I expected her to offer that old clonidine as they did before but to my SHOCKING surprise she told me that I should call first thing Monday morning to get an appointment and have her EEG rechecked because of the discharges the previous two showed. My reply after a LONG PERIOD OF SILENCE was..."WHAT DID YOU JUST SAY"!!!!!!!!!!!

I then said "WHAT DISCHARGES"! What are you talking about!!!!!!!

She replied yes there were discharges on the right side of the brain on both the 20 minute EEG and the 24 hour one as well. She then said to make sure I come in for there could be inflammation there now.

 

The Neuro NEVER NEVER NEVER mentioned anything about discharges to us!!!! He said all her tests were normal!

 

My husband got on the phone at that point and wanted to know why the neuro never said anything like this to us. She did not have an explanation for this.

 

Now before I drive a MILLION MILES an hour to get to their office on MONDAY and FLOOR this neuro.....can someone maybe help us understand on why maybe he did not mention them?? Could it be he felt it not important. I trying to hold my temper and give him the benefit of the doubt. Maybe this is normal for neuro's not to mention this. The reason the 24 hour EEG was ordered was because the first 20 minute one did show abnormal but he said that sometimes that was common and is the reason the longer one was recommended. This one he said was "NORMAL".

I wish I could speak to him right now or at least understand why one would not release this information to us.

Our insurance covered nothing of that 24 hour EEG and the cost is $5000!!!!!!!! I do not care about the money, I would sell everything I own to help my daughter but my point is that you would think for all that money and time he could have AT THE VERY LEAST told us about the discharges. Wouldn't you think??

 

The new neuro on Monday is looking at a 72 hour EEG with video montitoring again and I sure hope this time we get some answers or at least that we are told EVERYTHING that it might show whether or not it is important....I want to and feel it is my right to be informed and told of anything that is not normal.

 

This is just a big mystery added to the pile over here. Why in the world would he not mention this??

 

All my reading has been on tic disorders so I have no knowledge of this other stuff.

 

Quickly an update on Gianna: Her first dose of topomax was given at bedtime lastnight (15mg) She woke up this morning and my heart raced as I watched her....sadly she is still going somewhat strong. That head of hers is still violently going up. My husband though felt it was a little less violent and maybe a tad better.

She had another break down about it this morning but so far that was the only one. Hopefully she will not start to cry again before bed. I had a neighbor bring over her little girl for the day so Gianna could play with someone her own age and thought it would keep her mind off things. It seemed to work.

Maybe I could "rent" my neighbors child until our appointment on Monday. (sorry for that remark....I just thought I need a little humor here before I really do loose it all.

So I guess all and all it was a bit better today but I saw it more in just the emotional part of it all for her. She gets her second dose in about 1/2 hour so maybe things will be better tomorrow. Not sure how long the topomax takes to have an effect if it were myoclonic seizures we are seeing. The new neuro said it was fast acting and would help a great deal in getting to the bottom of this if a good result was seen soon.

 

Sorry that my posts are so long. I also want to Thank all of you for all your kind words, good wishes, and prayers. YET AGAIN!

All of you are such wonderful people and the really funny thing is that for the most part ALL of you are pretty much strangers to me but have helped me more than some of my immediate family in getting through this. I thank you all from the bottom of my heart. Not sure what I would do without all of you !!!!!!

 

 

lastly can anyone tell me if its possible to have tics and have abnormal EEG. So confused about all this. Almost like I have to start ALL OVER with something else. My brain is fried!! I would probably have the MOST ABNORMAL EEG in the world....

[myrose]

RESULTS TODAY....What we found out today is that my daughter is having discharges (spikes) from two parts of her brain. It was confirmed today that it is absouletly seizure activity. The two parts in the brain these discharges are coming from are :

 

TEMPORAL LOBE- this part controls the following:

 

SPEECH- (we are okay in this area)

BEHAVIOR- (we might see some issues here but its hard to REALLY this and confuse it with something other than a typical 5 year old behavior)

MEMORY- (my daughter NEVER forgets a thing so we seem to be okay here as well)

HEARING- (No issues here)

VISION- (Last eye test was passed with flying colors, will repeat as soon as I can get in)

EMOTIONS- (WE see OVER reactions daily, she is easily to have a break down over something some petty) Not at school though.

 

NEXT IS PARIETAL LOBE- this part controls the following:

 

INTELLIGENCE- (She is advanced per her pre-K teacher and also her soon to be Kindergarden teacher so I do not think we have issues here)

REASONING - (BIG ISSUES HERE)

TELLING LEFT FROM RIGHT- (No issues here)

LANGUAGE- (No issues here that we are aware of)

SENSATIONS- (BIG BIG ISSUE HERE)

 

 

We were told to remain on Topomax (15mg) I am to call in two days and report any further progress. They may increase the doseage but I will go no higher than 25mg. I do not like the side effects so staying on a low dose will limit these. If a higher dose comes to be NEEDED- in other words if my daughter presents herself in the condition she was in to the point where she being affected emotionally, than I will deal with that when it comes and just not think about it right now.

 

OUR TICS ARE "NOT" RELATED TO the seizure activity found but Topomax will effect them in a positive way as well. We will re-visit the neuro in 3 months and decide whether its time for another EEG. If the seizure activity is gone...we will discontinue the Topomax.

 

Neuro suspects PANDAS from her history and the sudden onset of OCD and a difference of her behavior. To play it safe on both the seizure part of it and the pandas part of it he has order the following bloodwork:

 

ASO

Dnase-B Antibody (strep-

 

CBC w/DIFF & Platelets

CMP

Lactate (Lactic Acid) (Blood, Frozen)

Amino Acids (Quantitative, Full Panel) (Blood, Frozen)

Urine Organic Acuds

Pyruvic Acid

Biotinidase

 

 

The first two are asscociated with the Pandas and the seven others that follow are apparently for the seizure activity.

 

 

If the Pandas bloodwork (titers) come back elevated than she will begin a 28 day course of antibiotics. His choice (and what they use) is ONLY AMOXICILLIN & another one that I just CANNOT remember the name of! (not sure why he was persistant on these two) It was not azithromax though

 

My daughter though seemed to have a reaction to this if you all remember and was taken off and put on Azithromax. The first three days on amoxicllin she had a 98% decrease in her (then) mild tics. But when we started the azithromax her tics came right back.

He was so insisitant on the AMOXICILLIN that if we need to take this route.....we will have her checked for a allergic react to the amoxicllin and make sure the dots she broke out in were indeed from the amox.

I am curious now as to why he is so persisitant on these two antiobiotics! I did NOT ask why and could KICK MYSELF! It was just so overwhelming today!!!

 

I do have to call his nurse practioner in two days as I have stated already and I have written down this question to ask her.

 

The blood work for the seizure part will tell us more about if she needs different meds etc. He wants to keep an eye on this and look further into it. She experiences no sign of seizure when it happened on the EEG. They were referred to as a type of epilepsy absence or something similar to that.

This all explains alot as to the things I mentioned above with what it seems to be affecting.

 

No ADHD, ADD, ODD was diagnosed (Her teacher also stated that she has never seen my daughter display any of these signs)

 

The OCD is there but only in the THOUGHT issue at this time. (She has bad thoughts sometimes) For example: I took her to meet her NEW kindergarden teacher. She spent a few hours there at the school and when we returned home she continued to state how much SHE LOVED that school and that she felt that she like it better than the school she attends now. I then told her I was really happy that she felt that way and when she went to school the next day is was okay to tell everyone about it and how much she liked it but that maybe she should not say that she liked it BETTER because maybe she would hurt her teachers feelings.

She had a break down at this point and said "WHY DID YOU SAY THAT"! NOW I HAVE TO SAY THAT TOMMORROW!!!!

 

In other words these thoughts of things she should not do maybe get stuck in her head???? Only way I can explain it.

 

Tourettes......my daughter is past the transient tic diagnosis, we are stuck at chronic tic disorder in which is the next one up. Then of course it would be Tourettes.

I was leaning towards Tourettes because of what I have seen since Mother's Day weekend. And I remember when my daughter told me that her brain was telling her to say bad words!

 

But..he will not diagnosis Tourettes. Says the bad word thing relates back to the bad thoughts getting stuck in your head. The main reason is because we have been ticing since Nov.06 but there has never been a vocal. A tourette diagnosis requires tics past 12 months without any absence more than 3 months but also has to have a vocal as well.

I thought Gianna had a sniffing vocal tic but it only happened when her nose was completely stuffed and she was so mad about it she kept sniffing as hard as she could to clear it. Being that her nose is a chronic issue and she only did it that day he does not feel comfortable in saying this was a vocal. I really did not think it was either. She was doing it on purpose and begging me for the afrin spray. I was just always looking for some kind of noise! expecting to hear something but never did and so far nothing. (I pray that this continues to stay absent)

 

I did also put a call into the old neuro and was told to hold on...and then was told he was running behind. I hung-up. The new neuro cannot explain why he did not mention the spikes and also felt uncomfortable speaking on his behalf. I told him I completely understood. I will worry about this whole thing at a later time. I just want to continue to get to the bottom of the things we have learned for now and also just focus on helping my daugher.

 

UPDATE on my daughter!!!! My little girl started the topomax on Friday night at 15mg. She has taken it now for 3 nights. Her improvement I would say is close to 90%. Every once in awhile we get a head thing but I have stared at her and yesterday I stared for the longest time and saw nothing!

Every other tic/movement is gone aside from the head thing that I would have rated on a scale of 1-10 at a BIG 10! Now I will rate it at a 3 if that!

 

I am looking forward to continued progress as the topomax gets more in her system. She is on a VERY low dose for her weight but we cannot increase it until a week has past. At that point I will only allow 25mg in which is still a low dose thus we should not see the side effects (Maybe the mild ones but they should pass as her system adjusts) If at 15mg now and seeing this 90% improvement....I am praying to see maybe even 100% in the weeks to follow!

 

I know that some of you are against meds (I am too) but because of the seizure activity and the condition my child was in I need to do this. We could not possibly live the way things were going. She is happy today and has not cried over her tics Saturday morning! Her mood also is much calmer and different.

She is happy and her melt downs/over reactions are fewer and do not last as long as they did.

My husband even noticed this and he never notices ANYTHING!

The topomax as I stated also seems to help tics and so maybe this will turn to be the relief she needed and possibly just for now anyhow, be our little miracle!

 

I Thank You all so much for all your care and concern while traveling this road with us. I really do not know what I would do or would have done without all your guidance and support.

 

I will post our continued results with the topomax and I will report the blood work and all else we discover. Our blood work is at Arnold Palmer hosptital tomorrow.

OH!!!!!!!!!!! I forgot....I tried to get into Dr. Murphy here in Florida. She is the ONLY one doing study on Pandas. I was told though when I called that she was not excepting new patients and was moving to the South University of Florida. This was dissapointing to me but we got into Dr. Franz at the end of the month.

My NEWS is that the nurse practioner I am to call on Thursday informed me that Dr. Murphy is doing a Pandas study right now and she is going to call for me and possibly we can get in this. I will keep my fingers crossed for this. It makes me feel EXCITED! If...this is my daughters case anyhow.

 

I will leave you all with some questions......(wouldn't be a true post from me if I didn't ask any)

 

I know of the blood work for Pandas...but there is some confusion as to the titers. Being that many feel even though that are not elevated there coulc still be pandas. Also that the titers will only show high if the stress is present?? The neuro did not say this.

 

Also on the other blood work related to the seizure activity ...can anyone comment on that for me. What will it show etc. Will it help in discovering something else?

 

Lastly does anyone know why the topomax would make the tics decrease so much? Being that the seizure activity is not related to the tics?????

 

And anything else someone would like to comment about...I would appreciate it.

 

We are still headed to the new Doctor on the 30th. I am hoping the bloodwork from there will help us with nutrient deficiencies if any and also the allergy and sensitivities she has. I am looking to go all the way and help her all I can. I would also like to soon do without the topomax but for now I need to understand and find out more about what is going on for sure with her seizure activity.

 

The neuro did comment on supplements after I asked. He URGED me TO NEVER NEVER give any supplement at all other than a multi unless FULLY directed by a LICENSED Doctor. He agreed that with todays diet and the poor food/soil thing that some supplemententation is probably needed but added that our body does not and was not made to break these kinds of supplements down as it is with getting them with food. Its a entirely different process than what the body is made for.

He also warned against high levels of things and them interferring with other levels in your body and of course certain foods that mix with them and possibly make them MORE potent. In other words he is not against supplements and feels that are probably needed in everyone now a days but to make sure you are guided by a doctor and that the doctor knows EVERYTHING you are taking right down to a simple multi. And levels need to be checked in order to determine if one supplement is not interfering with another and so on..... He does though drink a magnesium tea! but noted about calicum levels......So what it all came down to is to NOT give your child anything unless its proven medically that he or she needs it. You may very well end up with problems down the line that make your problems today seem like NOTHING! He also got into stomach issues and supplements but I assured him I would not give anything other than a multi until we get in and see if and what she needs. Also looking forward to the hair analysis...as he was SHOCKED that my daughter received 8 shots at one time. He concluded that even the CDC website states that a child CAN receive up to 6 shots a day....they did not even state 8 or 9!!!!!!!!!

He encourages me to proceed with the testing I am planning due to these shots......I have not a comment on this whole thing yet but the dates as I have mentioned before still RING a bell in the back of my head....Hopefully with all the attention it has now....we will all have some answers on this as well.

 

Okay LADIES!!!!!!! I am done....hope I got everything in there and I am sure your eyes are hurting by now...SORRY so long and AGAIN

 

THANK YOU THANK YOU....to ALL OF YOU!!!!!!!!

 

Sincerely,

Myrose

[Chemar]

phew you must be exhausted myrose but I am so pleased to see you have at least got more answers and testing ordered.

 

sure do wish he had done all this in the beginning huh rather than you and her having to go thru all the stress

 

I know Sheila Rogers has stressed it a lot and I try to as well.....we arent "anti-meds" ...meds have their very important role, eg the antibiotics for PANDAS and, as you are finding, the help from the topomax for the seizures.

I know the neuro said he doesnt feel the tics and seizures are related and I wouldnt want to contradict him....

 

 

but

 

if she is PANDAS and has brain inflammation then some kind of connection would seem there in my unqualified opinion.....it will be interesting to see what dr Franz says on it all

 

and yes, where I think maybe the Doc was being a bit extreme in his views on supps, being guided by a qualified professional is truly the best way when it comes to supplements, especially with a child

 

and sure hope you do hear from dr Murphy

 

hope you and daughter have a peaceful restful night

[emma1]

I did not get around to reading this whole thread until today. I must say it does sound like you are in good hands and I will keep your daughter in my prayers.

 

I think I am dealing with the supplement/stomach issues right now -- but honestly none of the doctors I have consulted are sufficiently informed on natural supplements to give a professional opinion. And we've consulted with a lot of doctors!

[faith]

Oh I'm so glad the fog is lifting.

I really quite agree with all Chemar has commented on, so I won't restate ..... This case IS a little different with the seizure med and all, its just the "antipsychotic" drugs I think we are trying to at least avoid, if only for the side effects. Thankfully this has had some relief for her constant movements.

 

God Bless,

 

Faith

[CarolynN]

Wendy,

 

I am so glad you are getting answers. Not knowing information by far is the hardest so I am glad it is all coming together. I am still continuing to pray for answers and I am positive you will get to the root of all of this.

 

Carolyn

[myrose]

Emma1...so sorry to hear about the stomach issues. Have you ever tried an enviromental doc?? I may be wrong here but I thought a lot of people on here where guided by them as far as supplements. If could have also been a nathopath doc?? (I know I did not spell that correctly)

 

Also want to add that the nurse said today that if my daughter feels not hungry or complains of a stomach ache then to give her her medicine at dinner and not before bed, or at least give a snack at bed if it makes her tired and the dinner time thing does not work.

 

Just suggesting maybe that either she has to have an empty or full stomach for one of the supplements????

 

Sorry that I am obviously of no help here but I bet that Chemar might be. Have you ran this by her? One thing I DO KNOW is that she has experience with supplements. Maybe you are also giving too much of one?? Maybe one is making another more potent? Just thoughts from what the doctoe said today.

It makes sense when I think about it because when I was taking that intramax it said not to have caffeine for two hours and it was so hard for me to possibly do that that I called and was told that if I took it right before or after my coffee some of the things in there (forgot what they were) would make my 2 cups of coffee into like 4 cups! No wonder I was so wired all the time!

 

Hope you get to the bottom of it soon and all is better again.....

[myrose]

Thank you so much Faith....I thought at this point I would put the computer away...at least for a few days. But Chemar has be curious about the topomax and tics thing. I have thought about it for the last few days and when they could not give me an answer about it today...well it has me MORE intrigued as to trying to find out why an anti-seizure med would have such a positive effect on tics if the tics are not related.....

Here I go again I guess.......

[myrose]

Thank You Carolyn. I still have that email for you but I never finished it. Its on my computer and for the last week I have taken over my husbands laptop. I was supposed to get my computer into Best Buy last week for repair but with all that went on, it just got pushed aside. I wanted to send that article I send you to Fatith as well and that is on there as well!

 

Just wanted you to know that we are still keeping up with a good diet. Whole house is still all natural everything! Just got the natural hairspray yesterday!

Looking forward to find out what the tests show as far as food sensitivities as well. I will eliminate ALL them if any.

Right now it would be hard to continue with the elimination diet because of the topomax and the positive effect its having on the tics.

But on the bright side we eliminated MSG after we emailed a few and I just am going to keep it out of here because I don't like what I read about it.

We were in the process of eliminating sacylites (know I spelled that wrong) but this whole ordeal and turn for the VERY WORSE interferred with that.

For as far as we got, we saw no improvement though. Everything right down to ALL berries and fruit were taken out. She even missed Grandmas homemade pasta sauce! So for now I will wait and see what the tests show.

 

Thank You so much for everything...how are you doing over there? And the apple cider???

[Sunshine]

Myrose,

 

So glad that you got some answers today and that Topomax is working for your daughter.

You must be exhausted!!

 

Hope you all have a peaceful sleep, and a much better week than last!!

[kim]

Myrose,

 

I'm so very happy to hear that things are looking up for your daughter with the beautiful name. I just luv it! I too am hoping that you can get some much deserved rest.

 

I don't know how closely you've been following the posts about sulfated GAGS lately, but this looks interesting. It sure sounds like it has some things in common with what I've be trying to figure out here lately. The study from the boney tumor talks about GLcNac (my understanding plays a role in protecting from autoimmune attack) and gluconic acid being inactivated, resulting in reduced surface area of the AMPA glutamate type 1 receptors. When I was trying to figure out those receptors they needed GABA to calm excitatory signals. There is a little more to that (the lack of heparan sulfate) but I'm doubting how that fits in at the moment. Anyway.....

 

http://en.wikipedia.org/wiki/Topiramate

 

Pharmacodynamics

Chemically, topiramate is a sulfamate-substituted monosaccharide, related to fructose, a rather unusual chemical structure for an anticonvulsant. Topiramate is quickly absorbed after oral use. Most of the drug (70%) is excreted in the urine as unchanged drug. The remainder is extensively metabolized by hydroxylation, hydrolysis, and glucuronidation. Six metabolites have been identified in humans, none of which constitutes more than 5% of an administered dose. Topiramate enhances GABA-activated chloride channels. In addition, topiramate inhibits excitatory neurotransmission, through actions on kainate and AMPA receptors. There is evidence that topiramate has a specific effect on GluR5 kainate receptors. It is also an inhibitor of carbonic anhydrase, particularly subtypes II and IV, but this action is weak and unlikely to be related to its anticonvulsant actions, but may account for the bad taste and the development of renal stones seen during treatment. Its possible effect as a mood stabilizer seems to occur before anticonvulsant qualities at lower dosages. Topiramate inhibits maximal electroshock and pentylenetetrazol-induced seizures as well as partial and secondarily generalized tonic-clonic seizures in the kindling model, findings predictive of a broad spectrum of activities clinically.

 

http://en.wikipedia.org/wiki/Sulfuric_acid

 

Many proteins are made of sulfur-containing amino acids (such as cysteine and methionine) which produce sulfuric acid when metabolized by the body.

[ad_ccl]

The ASO titers look at if there has been a previous infections - not a current one. The numbers usually spike 3 weeks after infection and take up to 6 months to go back to normal levels. Our PANDAS son's numbers were up in the 2000s then slowly have come down over 3 1/2 years - last fall they were down to 400.

So glad you are starting to find some answers.

[michele]

Myrose,

I am so happy you found a Dr. who is taking the time to run all the tests to get to the bottom of this. It sounds like you are moving forward in the right direction now. Also I am glad the tics seem to be improving with the seizure meds. I hope you and your family are more at peace today. I am really interested to see how he treats the PANDAS issue.

 

Michele

RESULTS TODAY....What we found out today is that my daughter is having discharges (spikes) from two parts of her brain. It was confirmed today that it is absouletly seizure activity. The two parts in the brain these discharges are coming from are :

 

TEMPORAL LOBE- this part controls the following:

 

SPEECH- (we are okay in this area)

BEHAVIOR- (we might see some issues here but its hard to REALLY this and confuse it with something other than a typical 5 year old behavior)

MEMORY- (my daughter NEVER forgets a thing so we seem to be okay here as well)

HEARING- (No issues here)

VISION- (Last eye test was passed with flying colors, will repeat as soon as I can get in)

EMOTIONS- (WE see OVER reactions daily, she is easily to have a break down over something some petty) Not at school though.

 

NEXT IS PARIETAL LOBE- this part controls the following:

 

INTELLIGENCE- (She is advanced per her pre-K teacher and also her soon to be Kindergarden teacher so I do not think we have issues here)

REASONING - (BIG ISSUES HERE)

TELLING LEFT FROM RIGHT- (No issues here)

LANGUAGE- (No issues here that we are aware of)

SENSATIONS- (BIG BIG ISSUE HERE)

 

 

We were told to remain on Topomax (15mg) I am to call in two days and report any further progress. They may increase the doseage but I will go no higher than 25mg. I do not like the side effects so staying on a low dose will limit these. If a higher dose comes to be NEEDED- in other words if my daughter presents herself in the condition she was in to the point where she being affected emotionally, than I will deal with that when it comes and just not think about it right now.

 

OUR TICS ARE "NOT" RELATED TO the seizure activity found but Topomax will effect them in a positive way as well. We will re-visit the neuro in 3 months and decide whether its time for another EEG. If the seizure activity is gone...we will discontinue the Topomax.

 

Neuro suspects PANDAS from her history and the sudden onset of OCD and a difference of her behavior. To play it safe on both the seizure part of it and the pandas part of it he has order the following bloodwork:

 

ASO

Dnase-B Antibody (strep-

 

CBC w/DIFF & Platelets

CMP

Lactate (Lactic Acid) (Blood, Frozen)

Amino Acids (Quantitative, Full Panel) (Blood, Frozen)

Urine Organic Acuds

Pyruvic Acid

Biotinidase

 

 

The first two are asscociated with the Pandas and the seven others that follow are apparently for the seizure activity.

 

 

If the Pandas bloodwork (titers) come back elevated than she will begin a 28 day course of antibiotics. His choice (and what they use) is ONLY AMOXICILLIN & another one that I just CANNOT remember the name of! (not sure why he was persistant on these two) It was not azithromax though

 

My daughter though seemed to have a reaction to this if you all remember and was taken off and put on Azithromax. The first three days on amoxicllin she had a 98% decrease in her (then) mild tics. But when we started the azithromax her tics came right back.

He was so insisitant on the AMOXICILLIN that if we need to take this route.....we will have her checked for a allergic react to the amoxicllin and make sure the dots she broke out in were indeed from the amox.

I am curious now as to why he is so persisitant on these two antiobiotics! I did NOT ask why and could KICK MYSELF! It was just so overwhelming today!!!

 

I do have to call his nurse practioner in two days as I have stated already and I have written down this question to ask her.

 

The blood work for the seizure part will tell us more about if she needs different meds etc. He wants to keep an eye on this and look further into it. She experiences no sign of seizure when it happened on the EEG. They were referred to as a type of epilepsy absence or something similar to that.

This all explains alot as to the things I mentioned above with what it seems to be affecting.

 

No ADHD, ADD, ODD was diagnosed (Her teacher also stated that she has never seen my daughter display any of these signs)

 

The OCD is there but only in the THOUGHT issue at this time. (She has bad thoughts sometimes) For example: I took her to meet her NEW kindergarden teacher. She spent a few hours there at the school and when we returned home she continued to state how much SHE LOVED that school and that she felt that she like it better than the school she attends now. I then told her I was really happy that she felt that way and when she went to school the next day is was okay to tell everyone about it and how much she liked it but that maybe she should not say that she liked it BETTER because maybe she would hurt her teachers feelings.

She had a break down at this point and said "WHY DID YOU SAY THAT"! NOW I HAVE TO SAY THAT TOMMORROW!!!!

 

In other words these thoughts of things she should not do maybe get stuck in her head???? Only way I can explain it.

 

Tourettes......my daughter is past the transient tic diagnosis, we are stuck at chronic tic disorder in which is the next one up. Then of course it would be Tourettes.

I was leaning towards Tourettes because of what I have seen since Mother's Day weekend. And I remember when my daughter told me that her brain was telling her to say bad words!

 

But..he will not diagnosis Tourettes. Says the bad word thing relates back to the bad thoughts getting stuck in your head. The main reason is because we have been ticing since Nov.06 but there has never been a vocal. A tourette diagnosis requires tics past 12 months without any absence more than 3 months but also has to have a vocal as well.

I thought Gianna had a sniffing vocal tic but it only happened when her nose was completely stuffed and she was so mad about it she kept sniffing as hard as she could to clear it. Being that her nose is a chronic issue and she only did it that day he does not feel comfortable in saying this was a vocal. I really did not think it was either. She was doing it on purpose and begging me for the afrin spray. I was just always looking for some kind of noise! expecting to hear something but never did and so far nothing. (I pray that this continues to stay absent)

 

I did also put a call into the old neuro and was told to hold on...and then was told he was running behind. I hung-up. The new neuro cannot explain why he did not mention the spikes and also felt uncomfortable speaking on his behalf. I told him I completely understood. I will worry about this whole thing at a later time. I just want to continue to get to the bottom of the things we have learned for now and also just focus on helping my daugher.

 

UPDATE on my daughter!!!! My little girl started the topomax on Friday night at 15mg. She has taken it now for 3 nights. Her improvement I would say is close to 90%. Every once in awhile we get a head thing but I have stared at her and yesterday I stared for the longest time and saw nothing!

Every other tic/movement is gone aside from the head thing that I would have rated on a scale of 1-10 at a BIG 10! Now I will rate it at a 3 if that!

 

I am looking forward to continued progress as the topomax gets more in her system. She is on a VERY low dose for her weight but we cannot increase it until a week has past. At that point I will only allow 25mg in which is still a low dose thus we should not see the side effects (Maybe the mild ones but they should pass as her system adjusts) If at 15mg now and seeing this 90% improvement....I am praying to see maybe even 100% in the weeks to follow!

 

I know that some of you are against meds (I am too) but because of the seizure activity and the condition my child was in I need to do this. We could not possibly live the way things were going. She is happy today and has not cried over her tics Saturday morning! Her mood also is much calmer and different.

She is happy and her melt downs/over reactions are fewer and do not last as long as they did.

My husband even noticed this and he never notices ANYTHING!

The topomax as I stated also seems to help tics and so maybe this will turn to be the relief she needed and possibly just for now anyhow, be our little miracle!

 

I Thank You all so much for all your care and concern while traveling this road with us. I really do not know what I would do or would have done without all your guidance and support.

 

I will post our continued results with the topomax and I will report the blood work and all else we discover. Our blood work is at Arnold Palmer hosptital tomorrow.

OH!!!!!!!!!!! I forgot....I tried to get into Dr. Murphy here in Florida. She is the ONLY one doing study on Pandas. I was told though when I called that she was not excepting new patients and was moving to the South University of Florida. This was dissapointing to me but we got into Dr. Franz at the end of the month.

My NEWS is that the nurse practioner I am to call on Thursday informed me that Dr. Murphy is doing a Pandas study right now and she is going to call for me and possibly we can get in this. I will keep my fingers crossed for this. It makes me feel EXCITED! If...this is my daughters case anyhow.

 

I will leave you all with some questions......(wouldn't be a true post from me if I didn't ask any)

 

I know of the blood work for Pandas...but there is some confusion as to the titers. Being that many feel even though that are not elevated there coulc still be pandas. Also that the titers will only show high if the stress is present?? The neuro did not say this.

 

Also on the other blood work related to the seizure activity ...can anyone comment on that for me. What will it show etc. Will it help in discovering something else?

 

Lastly does anyone know why the topomax would make the tics decrease so much? Being that the seizure activity is not related to the tics?????

 

And anything else someone would like to comment about...I would appreciate it.

 

We are still headed to the new Doctor on the 30th. I am hoping the bloodwork from there will help us with nutrient deficiencies if any and also the allergy and sensitivities she has. I am looking to go all the way and help her all I can. I would also like to soon do without the topomax but for now I need to understand and find out more about what is going on for sure with her seizure activity.

 

The neuro did comment on supplements after I asked. He URGED me TO NEVER NEVER give any supplement at all other than a multi unless FULLY directed by a LICENSED Doctor. He agreed that with todays diet and the poor food/soil thing that some supplemententation is probably needed but added that our body does not and was not made to break these kinds of supplements down as it is with getting them with food. Its a entirely different process than what the body is made for.

He also warned against high levels of things and them interferring with other levels in your body and of course certain foods that mix with them and possibly make them MORE potent. In other words he is not against supplements and feels that are probably needed in everyone now a days but to make sure you are guided by a doctor and that the doctor knows EVERYTHING you are taking right down to a simple multi. And levels need to be checked in order to determine if one supplement is not interfering with another and so on..... He does though drink a magnesium tea! but noted about calicum levels......So what it all came down to is to NOT give your child anything unless its proven medically that he or she needs it. You may very well end up with problems down the line that make your problems today seem like NOTHING! He also got into stomach issues and supplements but I assured him I would not give anything other than a multi until we get in and see if and what she needs. Also looking forward to the hair analysis...as he was SHOCKED that my daughter received 8 shots at one time. He concluded that even the CDC website states that a child CAN receive up to 6 shots a day....they did not even state 8 or 9!!!!!!!!!

He encourages me to proceed with the testing I am planning due to these shots......I have not a comment on this whole thing yet but the dates as I have mentioned before still RING a bell in the back of my head....Hopefully with all the attention it has now....we will all have some answers on this as well.

 

Okay LADIES!!!!!!! I am done....hope I got everything in there and I am sure your eyes are hurting by now...SORRY so long and AGAIN

 

THANK YOU THANK YOU....to ALL OF YOU!!!!!!!!

 

Sincerely,

Myrose

[bmom]

Great to hear you are having great success with the seizure medication for your daughter(whose name I also love too!) Just wanted to agree with you on the titers. It seems to be controversial. We have been doing testing for titers and trying to determine if my son is PANDAS. I would love to try to find a doc who doesn't go with the blood testing and looks at the whole picture. Seems to be easier said then done. I even got the impression that Dr. Murphy looks at the titer testing as I spoke with her assistant today, but I could be wrong. If anyone knows a doc. that does not determine by this, please let me know. Perhaps Dr. K. He is so far, yet I would travel if I was determined myself that this was the case. Anyway, hope your doc is willing to try antibiotic if deemed necessary based on the whole picture, It sounds like he is making progress, up to date on at least some knowledge of PANDAS, and a open mind on supplements. That is all huge!! Good luck.