bubblegum

Has anyone ever been to Dr.Jyonouchi? Please pm me,I have a friend with 2 children that have Pans and need someone in their area.

Schizophr Res. 2011 May 4. [Epub ahead of print] Artemisinin reduces the level of antibodies to gliadin in schizophrenia. Dickerson F, Stallings C, Vaughan C, Origoni A, Goga J, Khushalani S, Yolken R. Source Sheppard Pratt, 6501 North Charles St., Baltimore, MD 21204, United States. Abstract OBJECTIVE: To investigate if adjunctive artemisinin, an anti-malarial compound with in vivo activity against Toxoplasma gondii, reduces symptoms or antibodies in schizophrenia. METHOD: N=66 outpatients with schizophrenia were randomized to receive 100mg of artemisinin twice a day or placebo for 10weeks after a 2week placebo run-in in addition to their usual psychiatric medications. Symptoms were assessed biweekly. Antibodies to toxoplasma and to gliadin, a food antigen, were assessed at the beginning and end of the trial. RESULTS: A total of 57 participants (26 in the artemisinin arm and 31 in the placebo arm) completed the 12weeks of the trial. The medication was well tolerated and there were no significant side effects associated with the treatment regimen. There was no significant difference in the change of positive, negative, general, or total PANSS symptoms between groups for all of the randomized patients or for just the completers. However, individuals in the artemisinin arm but not in the placebo arm had significant decreases in the levels of antibodies to gliadin (p<.0005, p>.2, respectively by paired t-test). Neither group had significant changes in antibodies to T. gondii. CONCLUSIONS: The study did not demonstrate clinical benefit of adjunctive artemisinin for schizophrenia symptoms. The finding of reduced levels of antibodies to gliadin in the artemisinin group merits further study. Copyright © 2011. Published by Elsevier B.V. PMID: 21546216 [PubMed - as supplied by publisher]

DC mom is your inbox full?Could you pm me,thanks.

Thank you!

Please pm me if you have seen her,thanks

Please pm me if you have seen her,thanks!

We have to take dd7 to hospital.We can't get TPN until next week even though I have been trying to get it this week.Only urinated once since yesterday.Where do we go???PA,NJ,D/C,MD???????

We were hoping to get TPN (Total parental nutrition)started and we can give that thru her IV line.But we don't have it yet and I don't know when we will get it.Maybe Monday?I am thinking we will have to take dd to the hospital again and I hope that someone will have a hospital that has helped.My daughter had her central line put in at GBMC.We live in Pa but I work in MD.I am going to call the GI doctor that Meg recommended but I also think we need to think about a hospital.Steph

I'm so sorry for your son.Our dd7 is afraid that her toys will come out at night and "get her"We offered to take toys out of her room but she didn't want to do that.Most of her toys are downstairs anyway.She knows that they really won't get her but she still has that anxiety.We never knew until she told us a few months ago.It makes me so sad to read another childs story because kids should not have to deal with this.We leave our bathroom light on during the night in our hall so our daughters room is not dark.Sometimes she will wet the bed because she is afraid to get up and other times she wets the bed and then gets into bed with us,she also will sometimes wake up yelling for us.Right now she is sleeping in our bed.Thank God we have a King size bed.I hope that you can make your son better,take care.

Megs mom,thank you!!!!!I will call in the morning.Her site says she is open on Sundays.If she could see us right away it would be great.Does anyone have a ENT that also could help us?DD is supposed to be taking Mepron for the babesia but currently not taking it.(She likes it mixed in vanilla pudding)She is on the Azith 250 mg and the Clinda is 300 mg for the lyme.Dr.Beals was concerned regarding yeast so he added the Flagyl.Then next week she should not take it and take Diflucon every day,Monday to Friday,off the weekend and then back to the flagyl.She will say something smells good but still will not eat it.She will ask us to "save"something,say a choc chip cookie for example,"When I feel better"She has c/o when she was eating of things not tasting right.She had taken Augmentin since last November at a high dose until August.Maybe there are ulcers or something going on,when she was in the hospital it was just a pediatric unit.We went to a hospital near us because she was getting dehydrated.We thought they would help her.They just wanted to do a psych consult because of the ocd.We think we are trying to make her better but we have made her worse.She is better in some ways.We also thought that further out from the IVIG maybe things would settle down and she would be better.Thank you,Steph

Hi Buster,the IVIG #3 was 1.5gm/kg.(Sorry typo)I haven't had much sleep lately.It was done the 2 nd week of August.Sept 2 until 9th she was in the hospital.The ped in the hospital refused to do a ENT consult even though she c/o severe sore throat and was red on one side.Also uvula was long and probably swollen.She has a central line in and is getting IV fluids,Azith on Mon,Wed,Fri and Clinda Tue and Thur.Also this week had a few doses of Flagyl.I have asked about prevacid IV but the doc wanted to hold off.(In August when this started she c/o abd pain and sore throat)If anyone reading this has a good ENT or GI doc we will go.We saw a ENT months ago but he didn't even do a culture even though she c/o a scratchy throat.It is frustrating dragging her to a doctor and then just being blown off.She has not taken the zoloft yet.She can swallow-had a few sips of oj this am.(Only thing that she will drink)I don't know if it is all OCD related or if there is also a medical issue.Her aso and anti d nase b was always low.But was higher in the hospital ,so it could have been rising or falling.(The one doc in the ED wouldn't even check it)If I could order the d---stuff myself I would!The one doc did not call me back today and I have called several times.I will ask again about the prevacid.I think you are right. IV antibiotics has been for 2 weeks.She is having a small bm.Dr.Jones said it can take months to treat babesia and we have not had it re-checked.It was done not long ago.She had a tick bite 2 years ago so brewing.She had a bite or two of jello today but that is all.Prior to August she had no problems eating.She c/o mucous and her throat being scratchy.This has been on going.Sometimes the ocd changes and we hope that we can get this turned around.I told Dr.Bransfield about Wendy mentioning that Benadryl is helpful with lyme because of issues with histamines.He was going to order Benadryl or Vistaril IV.I don't know when we will get it.We tried Ativan cream (topical)but no effect.We do see a difference being on antibiotics-ocd s/s and anger decreased.Thanks,Steph

I wish that it would work but it doesn't.We have the OCD workbook for kids and how to boss back the ocd but it doesn't help.I did talk to Dr.Bransfield and he said that sometimes with lyme there is a nerve involved and that causes the choking issues.I hope that is not the case!He had one girl and she had to have a J tube(feeding tube you put in the abdomen.)I did talk to him about IV meds and he will order Benadryl or Vistaril.I hope we can get it soon.Thanks for info,Steph(I am thanking God that we have the IV line in!)

Oh,I did get a appt for my poor husband on Tuesday.He is not the type to go to a doc so I hope he can figure out his rash issue.Steph

Thank you,I called and left messages for Dr.Bransfield and Dr.Beals.I asked both about the Benadryl.I haven't heard back yet.I think it is more the fear of choking and still complaining of her throat being scratchy.Are we still making her herx?By giving antibiotics?We don't give any Sat or Sun.She didn't have any Tue because we were in the car to doc appt.we only gave her fluids when we came home to help keep her from getting dehydrated.She has lost 3 pounds in the past week.Her weight was always normal but then gained because of the Orapred.(She was on it for a few months 15 mg a day ordered by Dr.B)But we weaned her off in June.I wish there was someone that could look at the whole picture and tell you what to do and that it would be successful.(I remember when I first started to read this forum )that was last September and I read about other kids,I was thankful that she did not have some of the symptoms that I read about,and I told my husband,Those poor kids and parents.But as time went on we thought we were making her better but things got worse.I hope that at least we are killing off some bacteria,virus or whatever.I will keep you posted!Steph

Thank you,we can't get her to take anything by mouth she just spits it out.While she was sleeping this am I put the Xanax in her mouth next to her cheek but it didn't dissolve as fast as it should because her mouth was dry.So she spit some of it out.(My husband did it yesterday and she also spit some out)But she did mentioned that she worried less.But we still can't get her to take it.We tried in choc ice cream last evening but she spit it out.Trying to explain that it will help her doesn't stop the D---OCD thoughts.(God when I put it in her mouth this am I thought please don't choke on it)So we did the Ativan cream yesterday first .25 mg (Which the doc ordered)and then we tried .5 mg of the cream.But it didn't seem to have any effect.Was still up until 2 am and slept until 930am or 1000 am.Dr.B is of no HELP!!!and Dr.J does not believe in doing Azith one day and Clinda the next.I am angry because when she was in the hospital neither one would help us with the picc line-they agreed it would be good but would not order it.So we saw Dr.Beals and thank God he would listen to us and he ordered it.I have called Dr.B and asked What Has Helped Other Panda Kids?He told me to talk to Dr.Beals because it is a lyme issue!!Isn't all this stuff related?Her immune complex are still high!She was supposed to go for IVIG next week but we had already decided not to do it.But I thought let them precert it with my insurance and maybe she might need it later,to just push it back for awhile.But they never got it precerted.I was yelling on the phone the other day(it takes alot for me to yell)because I was talking to Bonnie from Dr.J office.They are saying talk to Dr.B and do the IVIG.Also because Dr.Beals orders the meds differently Dr.J has a issue with that.But I called to ask Dr.J opinion because My God this child needs help.So my husband comes in on the middle of the conversation and he wonders whom I am yelling at.Back in August after we see Dr.J and start the Mepron I call them and tell them,look we are having a hard time getting her to take it and eating/drinking.Their suggestion is to take toys away but that doesn't work!!!So we ended up in the hospital.Now Dr.B is not suggesting anything its a lyme issue!!!!I COULD SCREAM,my husband called yesterday begging,What do we do!And that is the response that we get from her immune doc?They also told my husband to look at a panda site on line and ask other parents!On Tuesday(It is my Birthday)and we take dd to Dr.Bransfield in NJ. Three hour drive and back but he is the lyme association president and a Neuropsych doc so we are hopeful that he can help us.He orders the xanax sl(We try to tell him we can't get her to take anything and will need to do meds IV but we will try)He also orders the Zoloft.He throws in at the end that she might always have ocd.(What??????)If we treat the lyme and babesia and God knows what else,shouldn't she be better.We still have HOPE.She is not as angry or raging like she was a few weeks ago.She has spit on us and hit us.We know that this is not her real personality.We stay calm and we know she will calm down.So she is no longer hitting or spitting on us,yelling or cursing.Recently if we turned off a light or sat down we would have to turn the light back on or stand up or"I can't breath"and she would be in a panic.Well she is not doing that anymore.Also one of us always had to be with her and right now she is in her room playing with toys by herself.So for the D____docs that think that these kids can't get better with antibiotics they can stick it!She will tape a message on a heart that records and bring it to me,the message says"I love you mommy"this is my child.If only we could get her to eat and drink.The TPN should only be given for a month not long term because it causes liver and other issues.Maybe it will buy us more time.Thanks for help and support.(OH if anyone is going to be in Edison NJ for Panda meeting there is a Rainforest Cafe there.We went after doc appt on Tuesday because we love the place and there are not many around anymore,so we think it's my birthday and maybe we could get poor daughter to at least get a drink,but she would not get out of the car.She slept most of the time in the car and I took jello with us but she had 2 small bites and after that spit it out.I also had taken yogurt with us and oj but she wouldn't touch either.So we go home because we wanted to get IV fluid in.)She will tell us to keep things until she is "Better"and then she will eat them.She still complains of throat being scratchy.We went to a ENT last year but he was useless,didn't even do a throat culture.Oh,when she was in the hospital in August her ASO and anti d nase b did go up to 92 and 120(I think,I would have to look at the lab sheet,she always was low before.I think her throat was red and so sore that she had strep.Or was it die off from IVIG from lyme/ babesia?No one seems to know.If anyone has a good ENT or if we might need a GI doc we will travel.We live in pa.(We did try ERP last September but it didn't work,and over time the ocd s/s got worse.I think because we were not treating the lyme/babesia.Also we are waiting to find out about hair we sent for heavy metals.)My insurance is not paying for the IV antibiotics and it is expensive,my husband said maybe we could have a fund raiser.Why do our children have to deal with this?Wendy sent a message that lyme affects histamine and that benadryl helps,maybe Dr.Bransfield can order it Iv,I will call him.Thanks again for any suggestions,Steph(Oh any thoughts,my husband has a red blotchy rash on back,chest,arms,scalp and it will be in different places and fade Not whole back or chest just areas.It will itch,he has taken Benadryl that helps a little.Maybe this is affecting dd?My husband and I took Augmentin in Sept when dd was in the hospital even though we are supposed to be allergic from birth.We didn't know the reaction so we thought,oh well we would take it,if it would help dd because maybe we were making her worse..But we finished it in the middle of September.But then he got this rash a few weeks later.Any thoughts?Now I have to find a doctor for him!)

DD7 has been dx with Pandas,EBV,CMV,Mycoplasma Pneumonia,Lyme,and Babesia.When we got back Dr.C blood work last year and it showed our daughter was in the pandas range we were like thank god,it is strep and we can make her better!We were FOOLS!Our daughter had classic panda s/s ocd,bed wetting,anxiety,separation anxiety.....She took Augmentin and Orapred(Didn't know about the lyme and babesia at the time even though I would always question about lyme because she had a tick bite on the back of her neck 2 years ago and our ped. just blew me off regarding treatment.How I wish we could go back in time!)last year and it did help with s/s.Also she took Clindamycin for 10 days and it helped but the liquid is nasty and she wouldn't take it anymore.So we go to several doctors and we have IVIG with Dr.B She has had 3 and the last one was the higher dose.Before the 3rd one dd was on Augmentin the brand of the liquid.They stopped making it so we had to change to the generic.DD knew it tasted different(She had been on it since last November)and she wouldn't take the generic.So we tried pills(875 mg two times a day)You could crush them and put it in ice cream or pudding.We did whatever worked.Well the weekend before 3rd IVIG she vomited and then it was hard getting her to take meds.(We also had added Mepron for the babesia,was on vitamins and probiotics.)So she has 3rd IVIG and at that point was not vomiting.She did vomit in the car on the way home.(She was afraid to ride in the car after that but now has gotten over that)During the 3 rd IVIG she c/o her throat hurting and it was hard getting her to take tylenol and benadryl meltaways that she always took before.(They had to give her the Benadryl IV)Prior to August she mostly drank 2 % milk(now and then juice or a little water)She stopped drinking milk and then started jugging orange juice.Well the IVIG was the 2 nd week of August after that she stopped taking the Augmentin and c/o a severe sore throat and like a bone or hair was in her throat.She would drink milkshakes or push up pops but then that stopped.We went to a hospital and the ED doc had blood drawn but he wouldn't check aso or anti d nase b even though she was crying because her throat hurt so bad.(The lab girl drew extra blood but the doc wouldn't run it)They gave her some IV fluid,Ampicillin,Zofran(also had abd pain)and then finally Morphine because her throat still hurt so bad.(I had to get Dr.B on my cell phone so the ED doc would talk to him)So dd feels better and we get d/ced from the ed.We were hopeful that we could get her to eat and drink.When we got home she had a push up pop and we went to bed because it was like 2 in the morning.The next day we were back to not taking meds,eating,drinking.So the next day we go to a different hospital.DD was in the hospital for 7 days.(Ocd was pretty bad at times)The ped at the hospital said he had treated other kids with pandas but I doubt it!He does talk to Dr.B and they put her on antibiotics but they also put her on 60 mg a day of Solumedrol(Steroid)I told them she can't be on it because of lyme and that dose is too high but what do I know!SO by the time we get out of there she is calm one min and yelling the next.(What the H____)did they expect.The one ped.said in front of dd-"What is wrong with her mind?"The other ped.got out his Red Infection Control Book to prove how you treat strep,and lyme disease-He made me read the paragraph.They also kept pushing us to have the Adult Psychiatrist evaluate dd and my husband and I said no!We would follow up with a Neuropsych doc that Dr.B and Dr.J referred us to.The Ped also sent a social worker to talk to me and I talked to her and tried to explain about pandas,lyme.(I think I was really talking Greek!)so the day we get discharged they send another social worker to talk to me.By this time I am done,and I say,we are fine and have follow up appointments already set up and I do not talk to the social worker.DD is still not really eating.Had a few bites of spagettios and was eating mostly push up pops.Did take Mepron in pudding but everything else was IV.Still c/o abd pain and her throat hurting.I asked if she could have a ENT consult but they wouldn't do one.My husband and I know that when we take her home it is going to be the same all over again not eating or taking meds.We had asked about a picc line in the hospital but they thought we were NUTS!So we get her out of the hospital and see someone the next day and he understands about lyme(Someone on this forum gave me his name)It took a week to get things set up and at least dd is eating push up pops or some cold things.The surgeon felt that it would be better to put in a central line so we do that because the picc does not last as long,the picc lasts only about 3 months.(Oh for extra fun the hospital that dd was in sends out a social worker to investigate us for abuse)Can our life get any better!!!!We already have battles with the insurance company and are running out of money.But we are like we have to keep going and make dd better.(She is such a sweet kid and smart.)So she has the line in.She presently is on Azithromycin one day and Clindamycin the next day.Also this week we started Flagyl for the yeast(Doctor Be was concerned regarding yeast and the antibiotics.)She won't eat yogurt anymore even though she used to eat it every day.She is not eating or drinking.It is the OCD and afraid of choking.Yesterday she ate 1/2 cup of jello,that is all we could get her to eat.We have tried everything!!!!!!!!We are giving her IV fluids thru the Central line and Vitamins but I am worried about her not eating.Sometimes the OCD will change but it has not.She still c/o her throat is scratchy and abd pain.We have tried to explain that her abd will feel better if she will eat a little something but the OCD thoughts are stronger and even though she wants to eat she can't.This kid would never pass up a choc chip cookie!(At first she would only eat a few things,one of them was cheese if we cut it up small but as time went on those things also stopped)We did see the neuropsych doc and he ordered Xanax(anti anxiety med)that is sl(it melts fast in your mouth)but we can't get her to take it.So we tried Ativan (the pharm made it into a cream)and we rubbed it on her arm but that didn't seem to make a difference.Poor dd did not go to sleep until almost 2 last night.The doc also ordered Zoloft but I don't know how we are going to get her to take it and it wasn't available until today from the pharm so we have to go pick it up.Other ocd s/s are much better!But the not eating / drinking remains.Also she still has" worries"Is there anybody out there that can help us?I have not been able to reach the doc but we are going to have to do TPN(total parental nutrition)thru the line.We were trying to hold off because if it decreases them so they don't eat at all then that causes more stomach problems,but we don't know what else to do.She is so pale and dark circles are worse.I am so scared!If anybody has any other suggestions please pm me.Thank you for the people that have responded!I have to go make phone calls!

Our daughter has been diagnosed with pandas and lyme. She is afraid of chocking and will not eat or drink much of anything and some days nothing at all. Asks us to save her favorite foods for later when she "can" eat again. Anyone else experience this? What meds/forms of treatment were successful. She's been dealing with this for 2 months now and has gradually worsen to the point of having an IV for meds, fluids, and vitamins. Would love to not have to give nourishment through IV. Thanks!

If they only knew how difficult it is in the first place to get our children to these appointments!I am not the type of person to complain but I would contact someone in the hospital(Usually there is some type of patient advocate)and I would make a complaint thus this Psych MD would not be able to do this again to someone else!It is Psych 101 that you don't want to push someone buttons on purpose and using a calm approach is alot more effective.Also if he was concerned regarding his safety he should have had security out in the hall and could have called him if necessary.So sorry that you have to repeat the trip and I hope that it will be successful!

Hi mom md,Could you e mail or pm me?Thanks!

It is Wonderful to hear that your children are being children and enjoying the summer!Thanks for sharing and giving others hope!

Hi we saw a Doctor at "Tick Borne Disease Center"Dr.S in West Chester.Back in March.He uses MDL they are in Hamilton NJ.DD results;HSV1 HSV2 By Real Time PCR Negative,Mycoplasma general by Qualitative PCR Negative,Bartonella henselae by Real Time PCR Negative,Babesia Microti by Real Time PCR Negative,Ehrlichia chaffeensis(HME)and Anaplasma phagocytophila(Hge)by Real Time PCR Negative,Lyme disease (B burgdorferi)by Conventional PCR Negative,Lyme Disease Western Blot IgM No bands present,IgG 41 present.Lyme disease C 6 Peptide by Elisa Neg(Index=0.28)Neg:<0.90,Lyme disease IgG/IgM by Elisa Neg(Index=0.60)Neg:<0.90. Fast forward to Igenex testing done July.The Lyme Immunofluorescence Assay(IFA)<1:40(Negative)Lyme IgM Western Blot Ind(Indeterminate)Bands 41 IgG Western Blot 31 and 39 Ind and bands 41 ++.Genomic B Burgdorferi Negative,Plasmid B Burgdorferi Negative.(This is a Lyme Multiplex PCR test)It was done on serum and whole blood and both negative.B Microti(Babesiosis)Igm 1:20 titer(1:20 Igm may suggest evidence of infection.B Microti IgG<1:40 titer (IgG suggests no evidence of infection)Babesia Fish(RNA)Positive.(A positive sample shows fluorescing rings within 3 rbc's)The parasite exist as a ring.E Chaffeensis IGM and IgG negative.A phagocytophilum IgG and IgM negative.B Henselae Igm IgG negative.Spotted Fever Group IgG and Typhus Fever Group IgG no antibody not detected.Our daughter was on Augmentin when the above labs done.Back in October 2009 Anti-Lysoganglioside 640,Anti Tubulin 1000,Anti Dopamine 1 1000,Anti Dopamine 2 4000,Cam Kinase 160(Dr.Cunningham's)Was not on meds at that time.We saw Dr.Charles Ray Jones in CT and waiting for his report.RPR negative.Ferritin 5 low,and Vitamin D is low. Labs done July 2010 EBV IGM Negative,EBV IGG positive,CMV IGG positive,IGM negative.Also positive for Mycoplasma p IgG back in Feb 2010.Back in Jan 2010 c3D Immune Complex >114 H(0-8 range) I don't know if any of above will be helpful but thought I would share dd results!Dr.S said to just continue on the Augmentin(Back in March)which was already ordered by Dr.B.So I sent blood to Igenex because no one could ever tell me "Yes she has Lyme or N0"Also that is why we saw Dr.Jones because she did have a tick bite (In November)it will be 2 years and even though I asked Pediatrician about it twice he wasn't concerned and did no treatment.If we could only go back in time and if we had a Crystal Ball,maybe life would be normal!(Also I worry about if she has a parasite that we don't know about.I let her swim in a pond and I did not know there were geese in the water on the other side.It was at a campground and they test the water and someone told me they treat it if contaminated.Then they later said it wasn't treated.There was fecal coliform in the water(I had to be a pain in the butt to get that report out of them!Which was a ok level according to them.)I guess I don't want to miss anything.

Thank you!

Thank you Lyme mom!Maybe if we can get her on IV antibiotics we can make the ocd better,and then go back to po meds(By mouth)She was on Clindamycin last year but would only take it for 10 days(She took the liquid,can t take pills)and she was better on it.It taste/smells nasty but it made ocd s/s decrease.Did they do the picc line at doc office?I will call tomorrow,thank you!!!!!!!

Poor dd had IVIG last wed and thur.They almost wouldn't complete procedure due to dd would not take Benadryl and Tylenol first.(We got some of it into her but on the 2 nd day they had to give her a dose of Benadryl IV)Somehow we got thru it.We give her the melt aways and she has taken them before.It's difficult to figure out the reason for refusal but here is my list,1.Tired of taking medications2.OCD is bad and has been for several weeks.She thinks she caused the ocd and that she can just make it go away.3.She has had a few episodes of vomiting and diarrhea so now worried about vomiting,especially in the car.She vomited again on our way home the next day after IVIG. We have tried different ways,mix with ice cream,yogurt,in juice(Depending on what we are trying to get her to take)She does c/o abd pain so maybe part is real and part is the ocd.Also she c/o her throat being scratchy but has never come up + for strep(Last time I tried to swab her throat I could only do her tongue because she would not open her mouth)So we sent it out for culture but it showed nothing.We are still waiting for Dr.J report but I don't know if we wait a week or so and then try meds again.(You know with ocd things change)We were hoping that IVIG would help and then we could get meds into her again.Here is what I do know,1.Doesn't make a response to strep per Dr.B,2.Has had EBV,CMV,Mycoplasma P(Dr.J and Dr.B said due to not current not to worry about them)3.Babesia(Fish)thru Igenex +,bands 31 and 39 Ind.for BB(Lyme)and bands ++41.Has anyone gone the IV route for their children?Also we would need to find a Doctor closer by to Lancaster,Philly or Md area.Does anyone know if there is a Doc at CHOP or John Hopkins?(We did go to John Hopkins pediatric ED one time because it was a weekend and at night and dd was sick but they wouldn't order anything.We had to wait until Monday to see her pediatrician to order yet another antibiotic.)We have seen Doctors whom have not helped at all and wasted time and $.So any input would be appreciated as you can see we need help!Thank you for all of the people that post on here because it gives me hope that we have to keep trying and something will make our Beautiful daughter better.I have to stop writing because now I am crying!Sorry!